Chronic Fatigue Syndrome and Stress: A New Frontier for Treatment?

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This is a guest post written by staff nutritionist Kelsey Marksteiner, RD. Click here to read her blog or join her newsletter!

If you or someone you know suffers from Chronic Fatigue Syndrome (CFS), you know how devastating this condition can be. While some may function well, others can have their lives practically ripped out from under them – unable to work, go to school, or engage in many of their favorite activities.

CFS is a somewhat controversial disease due to its lack of objective findings in patients. Through the course of its history as a known syndrome, its definition has changed dramatically, but it is currently diagnosed when a person has (1):

  • Clinically evaluated, unexplained, persistent or relapsing fatigue that is of new or definite onset; is not the result of ongoing exertion; is not alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social or personal activities AND
  • Four or more of the following symptoms that persist or recur during six or more consecutive months of illness and that do not predate the fatigue
    • Self-reported impairment in short term memory or concentration
    • Sore throat
    • Tender cervical or axillary nodes
    • Muscle pain
    • Multi-joint pain without redness or swelling
    • Headaches of a new pattern or severity
    • Unrefreshing sleep
    • Post-exertional malaise lasting over 24 hours

Chronic fatigue syndrome is most commonly found in young to middle aged adults, and it is about twice as common in women than men. The prevalence of this syndrome is estimated to be under 10 percent of the population. (2,3)

The most common conventional treatment options include cognitive behavioral therapy (CBT) and graded exercise therapy. While some patients experience relief with these therapies, there is always a hunt for better therapies that provide more relief. The role of the hypothalamic-pituitary-adrenal (HPA) axis may be an important new treatment approach that should be explored.

Chronic Fatigue Syndrome and the Hypothalamic-Adrenal-Pituitary Axis

The HPA axis is the body’s control center for reactions to stress, and in turn regulates many other body functions like digestion and immunity. When we interact with a stressor, the body releases a cascade of hormones which eventually reach the adrenals and stimulate the production of other hormones like cortisol (the main stress hormone), dehydroepiandrosterone (DHEA), and aldosterone. These hormones work to keep blood sugar elevated and helps the body retain sodium and fluid so that blood pressure stays high and blood sugar levels can keep up with the fuel demands of the brain and other vital organs during times of stress. This process is important in maintaining life in a true “fight or flight” response, but in the modern world we constantly activate the HPA axis for small stressors like traffic or missing our train. With constant activation, the adrenals can become “worn-out”. Someone with hypoadrenalism will experience fatigue, depression, and low cortisol levels – all markers that are similarly found in chronic fatigue syndrome.

HPA axis dysfunction is not currently evaluated in potential chronic fatigue syndrome patients as  part of the diagnostic process, as evidenced by the CDC criteria listed above. However, looking at recent research, it is clear that HPA axis function is an important part of the symptoms experienced by CFS patients.

Hypoadrenalism (low or “worn out” adrenals) in its most severe state presents as Addison’s disease, which in industrialized nations is most commonly caused by an autoimmune attack of the adrenal glands. In Addison’s disease, some or all of the adrenal hormones are not produced in sufficient amounts, which as you can imagine, causes many problems including fatigue, anorexia and/or weight loss, nausea/vomiting, hypotension and/or postural hypotension, muscle and joint pain, salt cravings, sexual dysfunction, and psychiatric symptoms.(4) Chronic Fatigue Syndrome and Addison’s disease have many overlapping symptoms, the most important of which is fatigue.

Both Addison’s disease patients and CFS patients show low cortisol output. Morning cortisol levels measured in the saliva have been shown to be low in CFS patients (5), and 24-hour urinary free cortisol is also lower in CFS patients than controls. (6) CFS patients are likely to have undergone early trauma (7), which, even in healthy adults, is associated with lowered HPA axis reactivity. (8, 9)  The lowered HPA axis reactivity often found in CFS patients with history of trauma is associated with having increasing symptoms compared to CFS patients without a history of trauma. (10)

Despite this research, it’s still not clear whether HPA axis dysfunction is a cause of CFS or if it comes as result of the condition. Nonetheless, it has been proposed that HPA axis dysfunction in CFS is a vicious cycle, meaning HPA axis dysfunction may be involved in the genesis of CFS, but it also propagates ongoing symptoms once the syndrome manifests. (11)

Whether HPA axis dysfunction is the chicken or the egg in CFS may be determined by future research, but for those of us trying to deal with it today, it’s important to determine whether normalization of the HPA axis improves symptoms. Treatment with replacement doses of hydrocortisone have been shown to be helpful but at the expense of adrenal suppression, (12) while treatment with low dose hydrocortisone (5 or 10 mg daily) was shown to be effective without associated adrenal suppression. (13) Another study showed that symptom responders to low dose hydrocortisone (those whose fatigue levels were reduced) showed significant increases in cortisol to human CRH, which reversed the previously observed blunted response compared to non-responders. (14) Though there are limited studies on hydrocortisone treatment of CFS, these studies show that improving cortisol levels is likely important in reducing symptoms.

Improving HPA Axis Activity Naturally

Because there seems to be a connection between HPA axis functioning and CFS symptoms, it is important to make sure that your adrenals are working their best. Pay special attention to the lifestyle factors like sleep and stress reduction with mind-body activities for the best results. These are perhaps the most important (and most overlooked) factors for recovery of adrenal function and improvement of CFS symptoms.

Adrenal Testing

If you have been diagnosed with CFS and don’t know how your adrenals are functioning, it’s an excellent idea to do a salivary adrenal panel which will measure your cortisol output over four different intervals during the day. This is different from having your cortisol level tested at the doctor’s office, as that is a one-time test and doesn’t give you the picture of what the adrenals are doing the whole day. In some states, you can order your own test kit from directlabs.com. Otherwise, you’ll have to have your healthcare practitioner order one for you.

Diet

A healthy whole foods diet that minimizes food toxins and emphasizes nutrient dense foods (such as the Paleo diet) is an excellent start. A diet like this will be high in many of the nutrients important for the CFS patient which help the HPA axis function including Vitamin C (15,16,17) magnesium, (18,19,20) pantothenic acid, (21) and pyridoxine (22).

Patients with CFS who are on a Paleo diet may want to consider increasing their sodium intake. It can sometimes be difficult to consume a lot of sodium, and those with CFS and/or hypoadrenalism should be sure to get a fair amount of it so as to minimize the symptoms of low blood pressure. If low blood pressure is a concern it may also be a good idea to supplement with licorice root which potentiates the action of cortisol. (23) Note that licorice root supplementation is contraindicated if you have high blood pressure.

You’ll also want to consume foods (or supplements) with probiotic bacteria, such as kombucha, kefir, yogurt, and sauerkraut. It has recently been shown that the gut flora of rats has an effect on the HPA axis. Rats that had no exposure to microorganisms (germfree; GF) had significantly higher ACTH and corticosterone responses to restraint stress than did rats with normal gut bacteria. (24) Another study in rats showed that those exposed to endotoxin (like that which a human would be exposed to if they acquired a pathogen) displayed altered HPA axis activity. (25)  Stress is known to alter the gut microbiota, and in turn this change alters the HPA axis. (26) It seems that normal gut flora is required for proper HPA axis activity and that clearing of pathogens and replacing lost beneficial bacteria with probiotic supplementation will likely benefit those suffering from HPA axis dysfunction.

Mind-Body Medicine

It has been shown that those of us who are highly neurotic and who experience depression and self-consciousness have blunted responses to stress tests. (19) When we work to change these thoughts and behaviors, we can start to re-train the HPA axis and feel better. Mind-body medicine techniques can help to re-train the HPA axis. Yoga, in particular, can help to reduce anxiety, depression, and perceived stress. (20) In a study on mindfulness-based stress reduction, 40% of participants had abnormal cortisol secretion patterns before the intervention and afterwards there was a change to a more normal cortisol rhythm. (21) The important thing is to find a mind-body medicine technique that you enjoy and will do on a regular basis. The more consistently you practice, the more benefits you’ll receive. Some examples include tai chi, meditation, deep breathing, biofeedback, the Feldenkrais method and more! Try them all and find out which one you like best.

Sleep

If you have chronic fatigue syndrome, don’t overlook sleep! Sleep deprivation and disordered sleeping cause HPA axis hyperactivity, (22) so make sure to get to get at least 7-9 hours nightly, and try to go to bed at the same time each night. Chris has some great tips about sleep in his upcoming book, Your Personal Paleo Code, so be sure to check that out! You can also read more about better sleep on this site here.

Time Management

Another successful strategy that helps a lot of my patients is practicing time management skills. A lot of us tend to run around like chickens with our heads cut off, trying to do everything at once but actually accomplishing very little. With proper time management, you can find time to fit in proper sleep, mind-body medicine, and make delicious, healthy meals and you’ll probably find that you get more done in less time. Check out both of Chris’ podcasts about time management here and here for more information. When we know exactly what we should be doing at any given moment, we spend a lot less time procrastinating. Plus, when we’re getting things done our stress level goes way down, helping the HPA axis to function more appropriately.

Now I’d like to hear from you. Do you have Chronic Fatigue Syndrome? What are the strategies you use to reduce your symptoms?

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This is a guest post written by Kelsey Marksteiner, RD. Kelsey is a Registered Dietitian with a Bachelors degree in nutrition from NYU, and a Master’s degree in Human Nutrition and Functional Medicine. She works in private practice and recommends individualized dietary therapy focusing on biologically appropriate diet principles to aid her clients in losing weight, gaining energy, and pursuing continued health. She is a firm believer that everyone is different, and she tailors her plan for each and every individual. Through her work, she aims to meld the dietary wisdom of traditional cultures with the latest science in integrative and functional medicine to create plans for her clients that work in the modern world. You can learn more about Kelsey on her staff bio page, or by visiting her private practice website. Join her newsletter here!

Comments Join the Conversation

  1. Rachel White says

    Hi
    This is very interesting. I was diagnosed with CFS / ME after a bout of glandular fever (adrenals pumped to try and combat virus and never quite got back to normal). It then disappeared and returned with a vengeance after a root canal treatment, which I am convinced was triggered by a huge shot of adrenaline pre-treatment. The CFS brought with it a whole host of other problems (immune dysfunction and depression.) All these were SYMPTOMS of adrenal dysfunction, rather than being a trigger of the CFS, which I believe is the most common misperception of the illness. Physical symptoms manifest as a result of body being on constant fight or flight, normally post virus.

    I read somewhere about being caught in the ‘adrenal loop’ (adrenals not working properly which then triggers dopamine to plummet and anxiety levels to rocket, hence triggering even more adrenaline; as you mention in your piece.)

    I used the Lightning Process to break the adrenaline loop. It worked after a week. (I was doing it about eighty times a day at first.) I have since come across loads of people who have used the same treatment – in fact a friend wrote about it for The UK Times. If anyone reading this has ME and haven’t heard of this treatment, please take a look. I haven’t looked back once.

    Unfortunately the UK doctors aren’t really aware of this so am thrilled you have written about it.

    Thank you for your piece.

    • Jackie says

      Hi Rachel,

      Did you do take the LP course in England, or did you just read the book? I looked it up and it looks really interesting. I live in the US and it would be too much to travel to England to take the 3 day course. I was wondering if the book is just as effective. Thanks and I’m glad you are doing well.

      • Allison says

        Jackie – I believe LP seminars are held world-wide, either by a local practitioner or one that travels around. I live in Sydney and we have a few LP practitioners here in Australia and also ones that travel here from the UK.

        I know someone in Singapore who recovered from CFS with LP. I’d like to try it but the cost is a little high for me right now.

        Best wishes.

        • Jackie says

          Thanks Allison. You’re right – I found 2 people in the US. I’ll look into it more, because I’d love to try it. I think diet/supplements/nutrition/lifestyle are all important, but the more I research chronic health issues, the more I’m convinced that there are both conscious and subconscious emotions at the root of them, and that energy medicine or mind/body medicine is what will truly heal.

    • prioris says

      Many people who don’t have CFS get diagnosed with the disease. Please read my post below on how to get diagnosed.

    • Lucy Rose says

      I don’t usually comment on threads but I couldn’t resist on this one because there is a cure for CFS and it is the Lightening Process as an earlier thread mentioned so if you really want to be cured then there is a way.

      A close family member of mine sufferered from CFS for 7 years we came across the Lightening process by Phil Parker.

      To be honest we were a little unsure at first if it was just a scam as it was priced at about £700 and we didn’t exactly have cash like this laying about. However we were recommended it by somebody we knew who’s son had been cured by this process and we were so desperate to end this horrendous condition that we went for it.

      Before the process began the practioner made several telephone conversations – the core of this is that you MUST BELIEVE it is going to work – if you truly want to recover then you will take the chance and believe it is going to work – and I promise – it will work.

      The NHS in the UK does nothing but try to alleviate the symptoms through tablets and through consultation sessions – they say it can’t be cured. Well I have living day proof that it can be cured.

      Google The lightening process Phil parker of follow the link below– give them a call, get a consultation and recover- the money is worth it and if you don’t have the money you will find it if you really want to recover http://www.lightningprocess.com/live-a-life-you-love/

      • prioris says

        The Lightening system is derived from osteopathy, neuro-linguistic programming (NLP) and life coaching.

        This is essentially making CFS a psychological problem.

        So how does this address the ciguatoxin and infection ?

        Did the person who had CFS checked for the Ciguatoxin ?

        The problem with people announcing a cure for CFS is that they likely never had the disease in the first place.

  2. Jesse says

    Good article. I had chronic fatigue from the ages of 14-15 to about 23-24. It really does a number on your mental health as well as not physically being able to do much. Once I cut the grains out, and I mean all of them, it was a night and day difference. Probably took a bout 3 days and I felt amazing. Even now if were eat a plate of pasta or a decent amount of bread, I will feel the symptoms come back and will usually affect my sleep and they will persist into the morning. Grains act as a huge suppressing factor on my body.

    • says

      Jesse, so glad to hear that changing your diet was a night and day difference for you! Sadly, I don’t think this is the case for many CFS patients – usually they have to go above and beyond diet changes. You’re one of the lucky ones! :)

    • Tami Zorge says

      Hi Jesse,
      I am on the same page as you. I first had CFS in 2000 and then again in 2009 along with fibromyalgia. For me, eliminating grains, sugar, cheese and eating totally whole foods with the addition of supplements, I overcame the worst of my symptoms in about 3-4 months. The last time I had it I also tried acupuncture which seemed to hasten my recovery. It’s funny, I knew I was going to have relapse in 2009. I was so stressed from work working the night shift. My resistance was down and I picked up a virus (it is still un-named) and I was out. I also forced myself when I could to walk. Even walking a half block was hard but I did it when I could. In late 1999/early 2000 I thought I had the flu and it turned out to be CMV. In the 1980′s I came down with mono/Epstein-Barr. Definitely watching my diet and not trying to overdo it keeps me functioning. Because of all this, I’m now studying nutritional therapy. I am also a nurse and and studying for my nurse practitioner degree. I want to help those who suffer from illnesses that can be corrected or at least partially alleviated through proper nutrition and lifestyle.

      • Annie says

        You are a dear, sweet soul for making your lemons into sweet lemonade by becoming a nurse in order to help others. THANKS!

    • prioris says

      Chronic Fatigue and Chronic Fatigue Syndrome are two different things. The former is a waste basket diagnose that could have many different causes.

      The primary symptom marker for Chronic Fatigue Syndrome is NOT fatique but neuro cognitive dysfunction. It can have secondary health conditions like FMS.

  3. Cliff says

    Hello Kelsey,

    Great article !. My wife has long suffered from CFS, I have taken it upon myself to research the potential therapies to help her over the past 7-8 years since mainstream medicine has been of no help at all.

    I had sometime ago made the correlation between the symptoms of CFS and the symptoms of adrenal fatigue. In response we have been using Rhodiola Rosea. there is a wonderful product made by Nanton Neutriceuticals here in Canada called Rhoziva (www.rhoziva.com).

    I am in no way related to the manufacturer of the product, I should say that first. I went with this particular product because of the high standard in product and production. I can say without a doubt that it has been by far the best treatment I have found to date.

    My wife is now able to go almost all day without the normally inevitable decline coming after the first few morning hours. She is better able to cope with mental stress as well as the physical. As your interested readers will know the two are the same for a CFS sufferer – they exact the same toll.

    Her mood is elevated and even, and she is generally ‘stronger’. It is night and day truly.

    Nanton states that one should take a month off after 4 months of usage, perhaps this is a question more for the manufacturer but, if you are familiar with Rhodiola do you agree with that statement and if so why ?. I ask because once off the Rhoziva my wife is quickly back to the original CFS state.

    Yes, one is still dependent on the product for relief of symptoms and it is not a cure but, my belief is that if the body is able to use the adaptogen in such a dramatic fashion it will allow the body the needed time and resources to seek out and correct the CFS cause. Perhaps a bit of wishful thinking but, so far it is the ONLY treatment that has given her mind and body a chance in 15 years.

    I should note that the brain fog also vanishes with the treatment and it has helped immensely in her ‘coming off’ the addictive poison Effexor.

    Although this treatment my be very personal and having differing results for different people I hope our research and experience goes some way in assisting others with this horrible illness. I would welcome any questions or comments also.

    Warm Regards,
    Cliff

    • says

      Hi Cliff – I’m not sure of the reasoning behind the take one month off statement. I’d ask the manufacturer why they say that. Of course I can’t really give you advice over the internet but I will say that if it were me and that supplement helped me function then I’d likely stay on it. Hopefully your wife is doing mind-body exercises to help her HPA axis as well!

    • Cassandra says

      It is pretty common for herbalists to recommend giving your body a “break” from your herbal supplements every so often. I’m not sure if this is based on a long standing tradition or is a more modern idea.

    • Allison says

      I’d assume the idea behind taking a break from it every 4 months it’s to maintain one’s sensitivity to the substance. This is what is recommended with phenibut which is a pure form of GABA, but in that case it may be more about preventing dependence.

    • says

      Hi Cliff,

      Have you ( or anyone else) tried rhodiola in a combination product? . Ive heard of better success with combination adaptogenic products such as the Energy Xtra. ( I haven’t tried it yet). It contains rhodiola rosea, cordyceps sinensis, ashwagandha and eleuthero (all potent adaptogens)

      I am just wondering if any one has tried both and what was their experience. ( As I may try one of these but am not sure which one to try).

      I don’t know if this applies to your situation, but I was told to not take my NAC one day a week ( likely on the same principal reason…giving the body a rest, even though it helps). Perhaps you could look into doing something like that?

  4. Nicky G says

    I have had CFS for 10 years now and am making a slow recovery. I had a salivary adrenal panel which showed my cortisol was normal but my DHEA was on the low side with a reversal of when you would expect it to be high and low over the 24 hours.
    Other tests showed my mitochondria to be badly compromised and functioning at less than 20 % of the bottom end of normal. I also have nickel toxicity which is proving difficult to shift because of severe reactions to detox protocols. The one thing I have been able to tolerate is kefir made with raw milk which I am hoping is aiding in detoxing.
    Although my tests showed my adrenals not to be in too bad a state, I cope with stress poorly and have a history of depression and low self esteem as you said.
    I also suffered from severe eating disorders in the past and then became a vegan. Both these no doubt added to the stresses on my body and contributed to the CFS.
    Along with working on my diet (now a meat eating paleo follower), learning to manage stress and anxiety has been key for me. Getting out of that chronic stress state and into a state where I can heal has been a long process.
    Thanks for this article, it’s very much appreciated.

    • Geckotreefrog says

      Kelsey and Nickey, What are the best tests to determine mitochondrial dysfunction, & which kind of doctor do I go to for this? Mito dysfunction is on my suspicion list for my depressed son who sometimes has vomiting issues (Please see my post below). Thanks!

      • Nicky says

        I can’t say that this is the best place to go to as I have no way of judging. However, I live in the UK and my tests were arranged via Dr Myhill http://www.drmyhill.co.uk/ She does make the mitochondrial function tests available to overseas patients. I think similar tests are available in the US but I don’t know for sure. Have you looked up Dr Cheney in the US? I’ve come across his name a lot.

    • Allison says

      I strongly suggest getting your zinc:copper balance assessed – by looking at the ratio between plasma zinc and serum copper. Eating disorders and poor stress tolerance can both be linked to poor zinc status. There are many doctors who now treat this problem and Chris K covered it in an old podcast. Good luck :)

  5. says

    Interesting reading! I have been helped tremendously by working with an amazing nutritionist ( who also could read my blood work better than any of the endless top MD’s on 3 continents I have seen and worked with) and being on a very strict GAPS/Paleo/WAPF primal template diet for many years.

    BUT the key that has helped me most is the SOMA from Dr Joseph Da Cruz ( and Dr Diamond) who also works together with a specially trained cranial sacral therapist to heal the cranial issues and restores cranial rhythms.

    The difference is immediate and astounding ( worth flying to Australia for!!) More people with CFS or any chronic illness should look into this. Truly profound ( from someone who has tried everything).

    Interestingly, a few other things that have helped me have been Diatomaceous earth, Dr. Peak’s natural progesterone, NAC, TCM in China and Asia ( not so much in USA and Europe), castor oil packs, magnesium oil or epson salts compresses, iodine and L-tyrosine, B vitamins, and free daily Lajin!

    http://www.soultravelers3.com/2013/10/cheap-self-healing-the-tcm-chinese-way-lajin-stretch.html

    • says

      For those who want to know more about the Soma, this article is a good place to start:

      http://www.lifeenergyfoundation.org/category.php?id=38#williemay

      ( about Dr Willie May and Dr Joseph Da Cruz)

      I found out about Dr Da Cruz through Ramiel Nagel ( author of how to cure cavities naturally via diet) who highly recommended him and who also has had great experiences with healing via the SOMA.

      Dr Da Cruz has had amazing results with chronic fatigue with the SOMA as well as many mysterious and chronic conditions from diabetes to rhem. arthritis.

      Sadly few know about this, but I will be writing more on this topic as it is a key that is missing. The SOMA also seems to really help with getting a deeper sleep and help absorb nutrients and supplements.

      As someone with perfectly straight teeth, I never, ever would have guessed how powerful this could be or that I could benefit from palate expansion at 60! It will take time, but what is fascinating is how it works immediately…even as the healing process continues.

      B/P, blood sugar, cranial rhythms etc rates change immediately when it is in or out.

      My 13 year old daughter and I ( with very different issues) have had amazing results and I have talked to many others who also have had these kind of miracles.

        • says

          You are lucky Allison because the best people in the world at this are in Canberra.

          He (and his website) is very humble, but what he does is mind blowing! ( make sure you schedule it with his cranial sacral specialist Namja too as they work amazingly together…both bringing different and complementary unique skills).

          http://www.wholisticdentistry.com.au/index.html

          He has also had amazing success with healthy Olympic athletes ( flying in from many nations) who break their own records while using the SOMA.

          I’ve done a ton of research on this area of dental innovation ( interviewed all the top people) and this guy is doing the best work by FAR in this area…the ONLY one who invented it with a holistic MD, works with cranial sacral experts and chiropractors when needed….and ONLY one who is doing cranial work, NOT orthodontia and in the least invasive, natural way.

          He is also well trained in nutrition, Qigong and healing as voltage in the brilliant Dr Jerry Tennant energy kind of way. ( Tennant was a brilliant surgeon who healed himself from a chronic disease that almost killed him and a must-read for anyone with a chronic condition or interested in health).

          This stuff is so powerful, I wish there were teams like this all over, but lucky you…live near the best one!

          I didn’t know if I would survive my long flight there, but I got immediate relief and thrilled I took the risk.

    • Leigh says

      This is amazing info Jeanne! Canberra is where I grew up, and I’m only 2hrs drive away from it now, so I’m pretty excited right now!
      I’ve also been looking into Chinese herbalism. Restoring the Jing. I’ll be trying Jing City and Adrenal tonic put together by Truth Calkins and David Wolfe, soon! You can find info on it on the Longevity warehouse website.
      Has anyone else tried it?

  6. PD says

    Although it’s not quite CFS but I do feel exhausted from time to time. Some days are good and some are bad. From some of the tests I have found that my stress coping mechanisms are not that great.

    My question is what are the mind body techniques that can be done regularly? Is it mindful meditation? How can HPA AXIS get back to normal? I see that I get stressed for small things which was not the case earlier before all this started.

    I am doing the saliva test – that will give some idea. The whole day I was at home and relaxed though.

    • says

      Have you tried Tapping ( EFT) ? I’ve been meditating daily for over 35 years and I do find that an important mind/body/spirit technique.

      I have found tapping is a great technique that I can do myself to help me deal with some of the utter frustrations and negativity of dealing with a chronic disease and chronic pain and fatigue.

      ( Mercola and others have a bunch on youtube that you can start with or learn from if you want to check it out.)

  7. Geckotreefrog says

    Hi. You mention salivary Adrenal testing from Direct labs, but I see that 4 are listed (under Hormones). Which do you recommend? I have a 24 year old son w/ severe depression (+ anxiety, easy to anger, & Incredibly sensitive emotionally: For example, I’m hearing now that he felt “traumatized” that I said he wasn’t allowed to read one particular book out of 4 he had brought home back in middle school because it wasn’t appropriate then: Disclosure by Michael Creighton). He sometimes has severe vomiting episodes lasting 12- 24 hours when he feels a situation is out of his control. The only other oddity is that his hands are Always shaking, with a mild to moderate tremor. Good childhood, no abuse, so I think there is an underlying medical issue here. He mostly eats Paleo (by default, because we do) since moving back home 7 months ago. He has only had one vomiting episode since then, where typically it had been 1 -2 X per month. Any ideas? Also, if we order an adrenal test (which one?) & see he has a problem, where do we go from there? I have only found one Paleo practitioner in our area to take him to (A chiropractor who immediately used “applied kinesiology”- I am Not convinced). I would So appreciate a response, your thoughts. Thank you so much!!

    • Lizette says

      I believe your son probably does have an adrenal problem with all the emotional stress he’s been under but it seems to me that you must first fix why he’s having so many issues. Find that out first, then the adrenal glands. Even if you did the adrenal testing, you probably already know that it will show that his adrenals are out of whack. Did something happen to him as a kid or a young adult that you don’t know about? Has he gone for therapy? It almost seems like he has suppressed something, something he doesn’t want to deal with. See if he’ll try meditation and Tai Chi. It’s great that he’s off the carbs now, but I believe some carbs are good, people with low serotonin levels need some carbs. Is he gluten free? If not, I would give this a try for 3 weeks, just watch the carb intake though with gluten free. People that are gluten intolerant or have a sensitivity can have headaches, depression, fatigue, joint pain, migraines, anger issues and anxiety. He could have many different intolerances to foods or even allergies that could be causing a lot of his symptoms. You can also try a food elimination diet. I’ve had all my testing done with a Naturophatic doctor. He will help him with the diet, (food allergies) the testing for the adrenal glands and any toxins he may have build up in his system. Also check to see if he has a candida issue. You can print out the questionnaire that Dr. William Crook designed and then take it from there. But I suggest that if he has a candida issue not to do the cleanse on his own, he will need supervision if he has a bad candida issue. He will get pretty sick if he does the cleanse on his own. I had systemic candidiasis and was dyeing, my body was shutting down. Candida takes on many different faces and sometimes that’s why you can’t figure out why someone is so sick. Your son definitely needs professional help, I don’t know if you can tackle this just on your own. I wish you and your son the very best and wish him a speedy recovery. Take care.

      • Geckotreefrog says

        Lizette, thanks So much for commenting. I think seeing a Naturopath is a great suggestion, since they have med. training & so much more. He has been seeing a wonderful psychologist, which does help.

        We have always been very close, so I know that he went through the typical, painful “stuff” most of us go through in middle school, early high school, like feeling that he didn’t fit in. But his internal Reaction to that stress is so much higher than I’ve ever experienced or heard of. He has a very high I.Q. & is very intuitive, like many women are, but his intuition gets derailed by negative assumptions. He told me a couple of years ago that he has been depressed since middle school, & I was stunned, because he hid it completely. He can’t come to grips w/ a break up w/ his girlfriend 2 years ago, & he feels tremendous guilt over the $ we spent to send him to a top tier university. His degree is in a creative field where jobs are hard to find. But, he isn’t even Trying to find anything now; If something falls into his lap, he takes it. Academics were a breeze for him, so I think he’s not used to having to scrabble for anything; (You can’t fail if you don’t try)! So, here we are with a depressed, amazing young man who doesn’t seem to have much if any emotional strength or “survival” ability.

        Part of me feels like I need to be the mama bird that forces him out of the nest to get off his ass. Or, see if we can afford to have him go back to college in a field that he can actually get a job in. The problem w/ taking a hard line approach is that he has said if he can’t get his head straight, he doesn’t see himself being Alive 3 years from now. So, I’m torn, living w/ feelings of anger/ disappointment, & helplessness. I have told him that gluten can be associated w/ severe depression, & he reacted strongly, saying going gluten free would be one more loss, especially giving up beer. He Is willing to get tested, finally, so it will be interesting to get the results.

        He doesn’t exercise but says he wants to, so we just found a great gym & will get him a personal trainer for a few sessions. (We have a weight set @ home, & he could walk outside, but he just doesn’t do it. When it is warm enough, he will at least lie out in the sun to get vit. D).

        Paleo physicians network… doesn’t show any Paleo Naturopaths in our area, but I bet many Naturopaths would be onboard. w/ Paleo.

        After so much effort put into parenting, I never thought I would be in this position. I think we tend to be only as happy as our least happy child. Thanks for reading and commenting.

        • Lizette says

          Your very welcome! I’m glad to hear that your on the right track with your son. I believe any Naturopath with do, I don’t think you would need a Paleo Naturopath. At least with a NP you will be able to get him the herbs that he needs. I take a number of things. I like Rhodiola for depression and stress and I take Ortho Adapt made by AOR for my adrenal glands along with a number of other things. Your son could take Vit D drops at this time of year instead of waiting for summer and not taking anything. When you described that he was intuitive and has a high IQ, I did think of that the last time I sent you a comment. You should see if you can find anyone in your area that knows about intuition or mediums. Do you have a metaphysical store around? They might be able to direct you to the right people. A good friend of mine owns one and she knows a lot of people in that area of expertise. I’m very intuitive also but not like your son. He sounds like he needs grounding and needs to meditate and needs to learn how to use and control his gift. There are a lot of kids out there that are born now with these gifts, they’re called Indigo children or Crystal children.
          Being gluten free is not that bad, at times I find it hard. Yes, he would have to get off the beer! LOL! It has a lot of yeast in it and that concerns me if he has a yeast overgrowth. Please look into his gifts, there is a lot that he can do to help himself. There is plenty for you to look up on the internet also. Good luck! Keep me posted!

  8. Lori says

    I am very surprised to see Chronic Fatigue Syndrome discussed on Chris Kresser without any mention of Lyme. In case anyone missed this point in the article, no one has definitively found what causes Chronic Fatigue! It is a list of symptoms. And these symptoms could be cause from many different origins. Finding the many different origins is quite possibly the only key to getting well for some.

    An original CFS diagnosis is quite prevalent in those who eventually are diagnosed with Lyme. Think Lyme is a rare disease? The CDC recently raised its’ estimates of yearly cases of Lyme disease from 30,000 a year to 300,000 a year! And I would say many of us concur that information from the CDC is lagging behind cutting edge research, so I can only imagine the real numbers of untreated Lyme out there.

    I ate 80/20 Paleo for 13 years prior to getting sick, even taught classes on it. After becoming ill, I transitioned to GAPS for 2 years and STILL only became sicker and sicker. Used natural treatments for my thyroid, leaky gut, adrenals, depression, insulin resistance, severe insomnia, fibromyalgia, heart palpitations,arthritis, cognitive dysfunction, saw over 35 practitioners/doctors, including a neurological chiropractor from the Carrick Institute, and while these treatments may have helped me feel slightly better in the short term, overall I was very, very ill. ALL while being told I had Chronic Fatigue Syndrome. Only after losing the ability to work, drive, or leave my house unassisted, one amazing practitioner saw past the Chronic Fatigue label, had me tested for Lyme, and finally I am on the long road back to recovery.

    Of course, not every single person with CFS is going to have Lyme, as I stated earlier that CFS can have many different origins and Lyme is only one possible origin. But I can assure you, that the Lyme community is rife with people who lived with the CFS/Fibro diagnosis for years, while their lives literally crumbled around them, and the untreated bacterial infection of Lyme opened the door for many, many other nasty viruses, parasites and other problems to invade their body. The earlier you treat Lyme, the BETTER. And while I am extremely happy to read this post about CFS and its connection to the HPA axis, I strongly believe Lyme deserves a mention. Unfortunately, its too far-reaching and devastating not to.

    • Nancy says

      Lori, SO glad you commented because you took the words right out of my mouth. Folks, please consider Lyme if you have been told you have CFS, particularly if: 1) you live in a tick-endemic area; 2) you are at high risk (you’re an outdoors person; a hiker; a gardener, or spend lots of time outdoors; 3) you’ve ever been bitten by a tick and ESPECIALLY if you’ve had a bulls eye rash (as this is actually diagnostic for Lyme).

      If you are going to be evaluated for potential Lyme infection, please see an LLMD (a Lyme-literate medical doctor) since Lyme is not well understood by the conventional medical system and the CDC Western blot you will likely be given has a high rate of false negatives.

      • Jane says

        I concur. Lyme and other tick-borne infections are far more ubiquitous that we realise.

        These infections have to be properly ruled out before anyone should be defined as suffering from CFS. Unfortunately tests for Lyme and other tick-borne infections are extremely unreliable which makes it extremely difficult to definitively rule out (even when one has a negative result – false negatives abound). This is why many people are clinically diagnosed by Lyme Literate doctors.

        Microscopy is worth looking into. And it is vital to educate oneself as much as possible about Lyme/tick-borne infections and the reliability of the tests.

        On a second note – Histamine intolerance/mast cell disorders can cause or exacerbate symptoms. I would recommend reading about histamine intolerance and trying a low-histamine diet as a trial, anti-histamines (only as a last resort when symptoms are extreme), and investigating whether any medication one is prescribed is histamine-releasing/DAO enzyme blocking (with the guidance of medical practitioner of course).

        This is of course a sticking plaster: Histamine intolerance/secondary mast cell disorders may be caused by tick-borne infections which stimulate excessive mast cell degranulation, and antibiotics may contribute by creating gut dysbiosis leading to inflammation in the mucosal lining which could result in increased mast cell degranulation and interference in the production of the Diamine Oxidase (DAO) enzyme which reduces histamine levels.

        I suspect many people suffer from histamine intolerance (to one degree or another – from panic attacks and anxiety, to chronic headaches, dizziness, acid reflux, rosacea, acne, eczema, and asthma ) because so many of us have been exposed to antibiotic treatment and have never been able to correct our gut dysbiosis. .

    • prioris says

      If one looks at CFS, Lyme, Severe MS, Gulf War Syndrome, Lupus, FMS etc, they all have mostly overlapping symptoms. The only different feature between Lyme and CFS that I could find is tendency for Bells Palsy Syndrome. Lyme is difficult to diagnose.

      Lyme didn’t exist until around 1960s. Like other diseases, there is a cover up going on. Many doctors got their medical license taken away when they tried to treat Lyme patients with alternative protocols and antibiotics.

      I would get the ciguatoxin test if I got Lyme diagnosis.

  9. says

    I have had chronic fatigue for about 4 1/2 years. It has been debilitating at points and I have had a number of ups and downs as I have learned more and more about what the root cause was. I’ve had many symptoms including adrenal exhaustion, sleep issues, leaky gut, hypothyroid, immune disfunction etc. About 2 years ago (after working with some major dr’s) I was tested for mycoplasma pneumonia and tested positive for an active infection. I have since been diagnosed with additional infections from babesia, and EBV. As I get the microbes under control (which involves dissolving the biofilms) I get stronger. Although extreme stress and exposure to mold were the initial triggers for my illness, the key to my health has been about managing the microbes.

    • Nancy says

      Jennifer, as per Lori’s comment above, you might consider exploring whether or not you have been exposed to Lyme. The Babesia you have been diagnosed with is a tick-borne infection and is often transmitted at the same time as Lyme (as well as others like Bartonella). Many Lyme patients have EBV as well as other viral issues (HHV, etc.).

  10. Ian says

    Excellent article on CFS! One of the best I’ve read… easy to understand and well put together.

    I discovered I have low adrenal/thyroid function {chronic fatigue} after my last relationship ended. This was the trigger that pushed me into seeking help and getting some tests done.

    I’ve had some success with the paleo autoimmune protocol, doing it mostly keto without fruit/carbohydrates and starchy vegetables often works best unless there are other factors like reduced income I’m facing now for the winter. No matter how “on” my diet is, that makes my anxiety and depression loop come on strong which then makes me want caffeine/sweets/alcohol.

    I take DHEA, licorice, skullcap, siberian ginseng, maca, ginger, rhodiola, and ginkgo to support the HPA Axis and also Thorne’s Basic Nutrients IV to cover the vitamin/minerals that hair analysis showed to be extremely low, along with extra vitamin D3 and Nature Thyroid to support the thyroid.

    In all honesty psycho/emotional growth work unpacking repressed rage helped me more than anything I’ve ever done! Ironically my x-girlfriend had the shadow side of my mother which is why this triggered the relapse on that level. I gave up my energy and lost my center if you will… by going into her world.

    My truth is that unless one is working through the root cause for their CFS then supplements and diet only go so far.

    • Annie says

      I agree with you, but the illness may be as much about chronic stress triggering CFS in the first place as it is about underlying psychological issues sapping your energy. Chicken/egg. Since I have so much time on my hands (now that I can’t do much else), I have spent a lot of time unpacking baggage and untying deep emotional knots. Maybe it’s helped, but sometimes it is good to “get out of your head” and stop thinking too much about past hurts. Give it up to god and let it go, if you can. =)

      • prioris says

        Different type of Trauma can trigger the damage from the vaccines. I know of a young couple that got hit from behind in an auto accident. They both came down with CFS at same time and became permanently sick. One idea is that trauma can shutdown the immune system for short time allowing a window of opportunity for the infection to take hold.

  11. Trina says

    by using the american definition you missed one of the main symptoms that distinguishes “chronic fatigue” from other types of ongoing fatigue – an inability to recover from exercise.

    http://chronicfatigue.about.com/od/diagnosingfmscfs/a/cfs_canadian.htm

    graded exercise is favoured by conventional doctors, but not by patients

    http://curetogether.com/chronic-fatigue-syndrome/treatments/ae/

    (hint- it’s at the bottom)
    and most of the experts in the field counsel against it as it destroys muscle and mitochondria without the catabolitic response everone else enjoys.

    But as your article is more about the adrenals , I will add that my own take is that by trying to function without some essential, if still undefined, energy means I flip into adrenaline just to do normal regular stuff – like get up -which does burn them out – but it does not seem to be the cause or cure for the cfs, but you have to watch them for sure.

    anyway, as you can see by the link above, a lot of treatments have been tried by a lot of different people. it’s complicated by the fact that they may have different underlining conditions!

    • Annie says

      I agree. At my worst, exercise for any length of time felt very wrong, like whipping a dead horse. Now that I’m at 65%, however, I’m having a hard time getting my stamina and strength back, and it seems like a mighty uphill battle. so tired.

  12. Bonnie Larush says

    I had chronic fatigue for 10 years, to the degree that most days I could go to work but do nothing else other than come home and go to bed.

    Tests showed EBV, OAT axis problems, vitamin deficiencies, digestive non-absorption, etc. I spent many thousands of dollars on every kind of natural therapy and traditional and alternative healers with never more than temporary relief.

    Then a very smart alternative chiropractor who I had gotten to know quite well told me I wasn’t improving because of the stress of my unhappy marriage. He was bang on – within 48 hours of leaving my husband I was completely healthy again, rollerblading and biking many kms each day.

    • Ian says

      That makes total sense to me. I had chronic asthma until I was 21. The day I moved away from my monster of a mother… within 3 days my asthma was gone never to return unless I went back to see her or if I eat way too much dairy or foods I test allergic to.

      I did the raw food diet/vegan diet, TM meditation, you name it up to that point, but leaving the toxic world of my mother was the big kicker for me.

      Ironically years later I realized that I was still stuck a lot in how I related to women and my dating life. That was what lead me to do psycho/emotional growth work that resulted in my experiencing directly how how I was raised and the repressed rage I carried being a key to reclaiming my power that no diet/cleanse/supplement could do justice to.

  13. Gabe says

    How the heck does one get diagnosed with CFS? I’ve been struggling with it for years and it has progressed to the point where I have chronic insomnia. My sleep disorder doctor checked my CPAP machine and literally said that the machine is doing its job so you shouldn’t be having these symptoms. I’ve been seeing a naturopath for about 6 months and she administered the salivary adrenal test kit and my cortisol is very low in the morning and then it flatlines between 5pm and 10pm. I’ve taken an MBSR course and joined a local meditation group. Should I see my GP, or will an endocrinologist be able to help?

    • Lizette says

      Your on the right track. Your GP won’t help any really. Stick with your Naturopath. Meditation is great. Get your Naturopath to give you the herbs that you need though to help you. I’ve seen an endocrinoligist and really got nowhere. Good luck!

  14. Catherine says

    I thought the papers by Maes about LPS translocation found in CFS and depression were an interesting avenue of research for causes of CFS. I’m not diagnosed because I’ve become slightly skittish of doctors, but eating and drinking loads of cranberries and fermented dairy products is very normalizing for me. (Given the success of the cranberries, I do suspect H. pylori at this point). I also benefited from selenium (I have rather obvious hypothyroid symptoms). Anyways, it’s fully possible that people labelled with CFS have different diseases with different causes. So maybe some have Lyme, some have SIBO, some have a mito disorder, etc. Therefore, different treatments will be more or less effective based on whether they address the actual cause of the CFS symptoms. Time management skills, vitamin C, etc. are helpful while trying to deal with the underlying issue, I think.

  15. John McDonell says

    Kelsey … Happy New Year,

    Thank you very much for the article on CFS. Perhaps THE stymying problem with CFS and a host of neurological difficulties is that because of trauma (instilled once because of accident or repeatedly due to chemical imbalance like heavy-metal poisoning (amalgam fillings)/CFS and/or Friedreichs Ataxia/multiple sclerosis). Neurotransmitter production is shifted to an unbalanced state where only excitatory neurotransmitters are produced and so that lack-of-recovery-rest, cortisol-alteration/tension/anxiety that are ‘normal’ responses to events become fixed/locked. Symptoms remain unchanged because the balance between excitatory and inhibitory neurotransmitters is never restored, even though much needed.

    An article in Life Extension magazine on Brainshield http://www.lef.org , points out the critical nature of this natural balance. An accidental assault like a brain injury from a car accident just might shift this balance, so that instead of the accident occurring once, to the brain the event becomes actual … and it is continuously-repeated over and over. Perhaps, we should re-look into this disruptive pattern in neurotransmitter production as a key feature in brain/spinal-cord injuries and brain-assaulting chemical attacks like allergies/CFS/fibromyalgia/… cystic fibrosis/FA/multiple sclerosis.

    There is little doubt that such use is experimental, but MAY be worthwhile.

  16. Jay says

    Great article everything you’ve mentioned is critical for recovery from CFS , I’m trying to recover after 7 years and tested + for 667t a mthfr gene malfunction and need to supplement with activated forms of b12 & folate to support the detox cycle, a big part of recovery…

  17. Grace says

    At the beginning of your article you said:

    “CFS is a somewhat controversial disease due to its lack of objective findings in patients.”

    This is false. There are over 5000 published studies that show physiological abnormalities in people with ME/CFS. Here’s a brief overview of some of the research:
    http://www.cfids.org/about-cfids/research.asp

    There is a real lack of understanding in the medical and wider community of this disease, and it’s a common misconception that there isn’t any physical evidence of it. There is plenty. Unfortunately these kinds of misconceptions lead to real problems for people with ME/CFS, as we suffer discrimination and mismanaged medical treatment because of it. I’d appreciate it if you’d correct this error in your article.

      • Annie says

        I disagree with her post too, but it might help some people. In my case, it’s adrenal insufficiency (from trauma/extreme chronic stress), EBV, leaky gut, and who knows what else. I had SIBO, but I think the colonoscopy cleanse (PEG and electrolytes) killed it or at least knocked it down, removed the biofilm maybe. With all that going on, no amount of nutrition alone could have fixed me.

  18. Gareth says

    I would define my CFS as post viral. I had glandular fever as a teenager which hospitalised me and then can trace various symptoms that appeared post the flu on a number of occasions.

    One day after a gym workout I was totally exhausted and drained for days. Sleep then started to become unrestful and I had a lot of pressure build up in my head.

    CBT was very helpful particularly the behavioural aspect(filling out time sheets etc) this helped to break the minds obsessive fixation with the cause and effect of CFS and symptoms.

    It diminished over time but never fully left. One interesting effect is how in my case exertion could trigger fatigue. For example simply the action of the exertion of using a screwdriver with some pressure for a short time could trigger, after a short time delay, a massive dizzying and wiped out fatigue that could then last many hours.

    Sometimes it seemed as if it was purely psychological but at other times it would feel very physiological and due to some hormone depletion or the like. The adrenal information presented here is interesting.

    I also tried supplements such as 5htp and modafinil as many reported benefits from their use. I actually found them to be totally intolerable and they would cause me to be in an unbearable state of mind intensity.

    • Sam says

      You are absolutely right about the origin of CFS. Please listen to Ashok Gupta on guptaprogramme.com. He had it himself for 4 years and now treating people with CFS in UK and all over the world. Good luck.

      • prioris says

        I really doubt that Ashok Gupta ever had CFS.

        This is his explanation of CFS. He ignores the finding of very high levels of ciguatoxin. I doubt he tests his patients for it either. He is essentially helping non CFS people.

        “The Amygdala is the part of our brain that is responsible for the “fight or flight” response, or the stress response. It is also known as the response of the sympathetic nervous system to threats. From our published research which you can view here, it seems that this part of the brain gets stuck in a chronic state of hyper-arousal, quickly using up all the body’s store of energy. It also causes lots of secondary issues which contribute to a whole host of symptoms in the body such as brain fog, difficulty concentrating, muscle pain, and exhaustion”

        I really doubt that Gareth had CFS either. I know people who are post viral type and they are still not cured after over 30 years.

        “Simone Wesley discovered that by combining cognitive behavioural therapy and light exercise a third of patients make a full recovery.”

        Simone was the information gatekeeper on CFS. In order to get published in any scientific journal, he had to approve it. He shut down alternative views of the subject in scientific journals. No doubt that Simone is a puppet for the powers that be. There have been some calls by people to have Simone Wesley tried for crimes against humanity.

        CBT was used to keep the disease a psychological one and let the people with CFS twist in the wind. Even suggesting CBT treatment for CFS is a disgrace.

        • prioris says

          Simone Wesley was the UK / European gatekeeper of scientific journals for a long time who essentially censored research that didn’t agree with the governments view.

        • Sam says

          Why to trash someone you know nothing about? How can you discredit a program you have not tried? I took his course and 3 mo webinar and a living proof that if you devote entire 6mo to the program you will succeed. Besides you get your money back to the penny if it did not work for you. I have not met anyone nicer than Ashok in his desire to help people. Also, how do you know what is primary and what is secondary? Many other programs work on the same principal- BeSetFreeFast, Vipassana retreat. Change your thoughts and your psychosomatic disorders disappear. Ashok Gupta is guiding you step by step.

          • prioris says

            I have the disease for 55 years so my knowledge trumps his just on experience alone.

            I have lived through all the political history and research on the disease. Unlike most people with the disease, I have paid attention to what takes place on a larger scale. There are all sorts of theories that people have proposed that have had no results.

            I’ll bet Gupta never got the ciguatoxin test either so we don’t know if he really had the disease.

            People have to take a path to dead ends to accumulate experience and knowledge.

            This disease involves a microbe infection. How does Gupta address this.

  19. Sam says

    Hello,there is a program by Ashok Gupta”Amygdala retraining” guptaprogramme.com ,which is specifically designed for CFS , (or ME in UK). He had it for 4 years himself. I purchased the program and attended 10 live 1hr long online sessions. Nobody ever explains CFS better than Ashok.. And it works 100% if you follow the instructions to the tee.

    • Jackie says

      Hi Sam,

      Due to your initial comment about the Gupta program, I looked into it and signed up for the 3 free hours of the program on Youtube. It’s awesome and it makes so much sense. Now I’m even more convinced that this is the key to reversing CFS and other chronic health issues. I’ve tried all the nutritional/supplement/right diet stuff for the past 7 years, and it’s helped a little bit, but not that much.

      You said you did the live course and purchased the DVDs?
      I’ve read great things about the DVDs and was wondering if they are as effective as the live course. Also, have you heard of Annie Hopper’s Dynamic Neural Retraining System? It looks a bit similar but maybe more geared towards multiple chemical sensitivity.

      Thanks so much for introducing this.

      • Sam says

        I am glad I could help. I have not heard of Annie. I purchased the course, and ALSO participated in live webinar (12 sessions) . When I first was listening to Ashok, I cried, because nobody ever understood what one has to go through with CFS, as Ashok did. I don’t think that $300 or so is such a high price to get back to a normal life. One also have to remember, the program is not an easy fix, it requires discipline for the entire 6 months.

        • jackie says

          hi sam,

          i don’t know if you’ve subscribed to the comments for this post, but if you have, i’m wondering if i could somehow get in touch with you to ask you some questions about the gupta program, because it’s one the options i’m thinking about. thanks.

    • prioris says

      Ashok Gupta ”Amygdala retraining” is a joke. He is simply going down a dead end for people who really have CFS. He also include FMS in his theory. Gupta doesn’t know much about the CFS or FMS disease.

      The hallmark symptom of CFS is neuro cognitive dysfunction.

      The governments has attempted to weakened the definition of CFS in order to dilute the CFS population with non CFS people.

  20. kristen says

    great info although I wouldn’t say this is new. I’m glad it is getting more main stream. It took me about 2 years to finally get my adrenal fatigue straightened out – no thanks to western medicine. The GI – detox – hormone systems are all interrelated so many of those with GI issues also have hormone issues and vice versa. Cleansing was also very helpful to me, in addition to all the supplements, bio-identical hormones, and stress/toxicity reduction.

  21. prioris says

    This is a very appalling article on Chronic Fatigue Syndrome. Another disinformation piece.

    Question: How should one get diagnosed with Chronic Fatigue Syndrome?

    There are a couple ways one can go about getting a diagnosis.

    Go to a ME/CFIDS/CFS doctor. These doctors do exclusionary testing. It can cost 5K or more to do testing. There are also travel costs. There are relatively very few doctors who know anything about the disease.

    Given the dire economic straits many sufferers are in and the difficulty of finding doctors, The least expensive and accessible method is the way to go. Focus on getting a few tests done by some doctor.

    Balance test is the first test can be done by yourself. There are three things that help you balance. Two things in your brain and your eye sight. During the late 1980s, a women doctor who worked at the massachusetts eye and ear infirmary medical came down with the disease. She subsequently tested 300 patience who had been diagnosed with strict CFS diagnosis protocol. All 300 patients had both balance systems in the brain knocked out so the eyes were the main thing that helped them balance.

    To do the test, walk on a straight line with your eyes open. You should be able to make that. Close your eyes and try to walk that straight line again. You can have another person close by or even a wall to catch you if you fall. It should be more difficult or impossible to walk that line with eyes closed.

    Get a ciguatoxin test. This is as close to a definitive confirmation of CFS as one can get. There is a place in Hawaii. It costs $100. It can only be ordered through a doctor so just find a kind doctor who will do it even though they may not know anything about the disease. Maybe you can maybe fill most of the forms out for him to make it easier. They just take your blood and send it out to Hawaii.

    People with CFS will have 10X to 100X the level of ciguatoxin than people with shellfish poisoning. It is also a different epitope than the shellfish variety. All the people strictly diagnosed with the disease had high levels of this ciguatera toxin in their blood and tested positive.

    If you want more confirmation, you can have a test that measures your Natural Killer cells tested. A doctor can send samples to Klimas Laboratory in Miami. Anything 20 or above is considered normal. Your average healthy person is around 40. Mine for instance were measured at 4. WHen NK cell activity reaches zero, the immune system collapses. Not all CFS people measure low but most do.

    Many people with the disease are unaware of the ciguatoxin test.

    You can get more testing done on your immune system and other things but it costs more money.

    Please note that the long term hallmark of this disease is the neuro cognitive symptoms and not fatique. Fatigue is manifested in a wide range of medical problems so is nebulous. CFS is a systemic disease and can have hundreds of other symptoms. Many doctors who don’t know anything about the disease will diagnose people with the disease who don’t have it. You’d rather NOT be diagnosed with this disease. Even if you get a diagnosis, you are on your own as far as treating it.

    FYI: I have had CFS for 55 years. I was one of the rare few who got disease at age 5 or younger.”

    Origin of ME/CFIDS/CFS and INFECTIVITY?

    Vaccinations.

    There will be no definitive or official announcement that vaccinations caused the disease.

    Why?

    Because there are very powerful forces who want to suppress such information because it exposes an ugly underbelly and would compromise the powers that be larger agendas and operations.

    The origin of the disease can be derived at indirectly

    First, we know one marker of the disease is the high levels of ciguatoxin, The potent neurotoxin us not natural to the body so how did it get there. It is clear it didn’t get their by ingestion. This leaves only a microbe as the culprit. What exactly that microbe is can only be guessed from an outsiders perspective. This also preclude there being multiple causes.

    Second, a massive explosion of the disease occurred especially between 1960 and 1990.

    Third, many outbreaks have been correlated with time of vaccinations. The Polio vaccines were implicated a long time ago.

    Fourth, US, Canada, UK and Australia have spearheaded an international cover up spanning over 60 years. There is a long history of disinformation and lies from the governments. They allowed the sickened to drift in the wind.

    Fifth, in my survey of patient organizations, I have found virtually all of them are tainted by covert military intelligence operations. They have stood silent about the vaccinations and helped create new generation of victims by not warning mothers about the danger of vaccinations. There has been overwhelming evidence of their damage as they relate to chronic diseases, cancer and autism. Not even GWS moved them when the anthrax vaccine was implicated. The patient organizations are there to keep the origins of the disease secret. There are also fake patients who spread disinformation thru websites and posts.

    Sixth, most of the leading doctors on the disease have also been silent about the dangers of vaccinations. I have long concluded that they also are part of a military intelligence operation. The carry out multiple functions such as biological monitors, disinformation, speaking or participate or embrace fake research.

    The one common thread across all these organizations and people is their support or neutral stance in regards to vaccines and silence about the devastation that vaccines are doing. To them, it is still a mystery on where the disease came from.

    Vaccines have long been part of a depopulation program. The medical charity groups are part of that program to protect the vaccines. Add in all the other powerful institutions and doctors who support the lie and you will have no definitive origin for the disease.

    Is ME/CFIDS/CFS infectious?

    No. Simply because the origin is from one or more vaccines. If someone got vaccinated then they are already at risk. Until it becomes proven that non vaccinated people can acquire this disease, there is no evidence that it can be acquired.

    For people with ME/CFIDS/CFS, infectivity is a major concern especially if they are dating or want to get married. They can tell whoever their dating that their health was damaged by vaccines and that one is only at risk if they got vaccinated. Of course, finding a day where they are well enough to get out of the home to date is a bigger obstacle and those are rare.

    If one surveys a large number of people who think they have the disease, there will be a large number of causes hypothesized. For most, they have little idea that a vast disinformation campaign has been waged against them. They also have been effected by that campaign.

    • Sam says

      PRIORIS,
      Are you being paid by Quackwatch or by those who do ciguatoxin test? There is no need for your righteous tone. People can figure things out themselves. Share what worked for you and let them decide which path to choose.

      • prioris says

        The financial advantage of the ciguatoxin test is that it cost around $100. The alternative is paying over $5000 for a large battery of exclusive testing.

        People with CFIDS have been put into devastating poverty because of the disease. They need as many financial short cuts as possible.

        Quack watch is just a front for the powers that be and anti-natural cure. Anyone who reads my posts over time will know that your statement is silly. Quack watch is good to research alternative cures – basically whatever they diss, it provides a path to research. they provide links and everything. Use it to your advantage.

  22. prioris says

    In regards to HPA axis study on CFS …

    I remember that study when it was happening. At the time the CDC and NIH were carrying out a cover up of the CFS.

    The motive behind that HPA axis study was to prove that people with CFS had a psychological illness and cover up the real cause. The name CFS was created to trivialize and bring ridicule to the disease.

    Depressed people they tested in past studies have historically had high cortisol levels. When CFS people were tested, they had low cortisol levels. So they concluded that even though the levels were low, that CFS people were just depressed.

    The HPA axis studies were just another covert attack on people with CFS/CFIDS/ME.

    BTW: Walter Gunn use to work at the CDC and was involved in the CFS are so when he retired, he said he would testify against the CDC in any future criminal prosecutions. Of course, the prosecutions never occurred. Congress covered it up.

    • Gareth says

      I sometimes think that the current epidemic of attributing every problem ever encountered by anyone as being the fault of ‘them’ ‘the government’ ‘cover up and conspiracy’ as being quite a serious and disempowering disease in itself. Probably caused by vaccinations.

  23. Sulenna says

    Hello, I just wanted to comment and share what is currently working for me. Over the past couple of years I kept feeling worse and worse. Being an RN, I automatically chalked it up to shift work, a crazy schedule and very poor diet. I had no energy and wanted to sleep all the time. My muscles and joints always ached, I would take naproxen twice a day and prescription pain medication with no relief. Some days it was a struggle just to get out of my pajamas. Slowly the depression and anxiety slipped in. The insomnia crept in this fall. In October and November I had become a mess. I was sleeping maybe 2-3 hours a night, if at all. There were many nights I would stare at the ceiling and want to cry when my alarm clock went off. I had horrible brain fog and my bowels ceased moving for three weeks, despite taking multiple laxatives a day. So I finally went to my doctor (yeah, yeah… Nurses are pig headed and stubborn) because I was to the point that I was so miserable I just couldn’t go on. Turns out my thyroid is extremely hyperactive. Explained a lot but I wasn’t satisfied the the lack of theory on what caused it. While waiting for an appointment with an endocrinologist (long wait here due to the number of diabetics) I started researching and came acros Functional MD Susan Blum. She makes the bold statement that all autoimmune disease is activated by Leaky Gut Syndrome exacerbated by gluten. The working theory is that this triggers chronic inflammation throughout the body with resulting Autoimmune Disease. I started researching gluten, I never dreamed I could be intolerant. What I found really shocked me, all the signs and symptoms of gluten intolerance were things I had suffered with for years and never related them. I had acne, insomnia, chronic constipation, depression, anxiety, muscle and joint soreness, absolute fatigue, ADHD, brain fog, nasty stomach pain whenever I ate… I felt so awful at that point that I was willing to do or try anything to feel better. Even if it meant giving up donuts and cupcakes because I adore sweets. Yes, the diet was a huge change, it was confusing and hard to grocery shop at first. I am a huge skeptic, I keep a daily log of foods I consume, supplements, how much I slept along with everything else going on in my life. In one month I was sleeping at least 6 hours a night, my depression and anxiety were much more manageable, I could concentrate better, my bowels regulated, my skin changed from pasty pale with gray tones to actual very light beige with a slight glow. I no longer constantly ache. When starting this I stopped all my medication, I informed my doctor of my plans and she grudgingly gave her blessing. I wasn’t on anything crucial – Cymbalta, naproxen, trazadone for sleep, and flexeril… I had stopped the narcotic months before because it didn’t help anyway. This is the first time in years that I don’t wake up stiff and sore and come home from work barely able to move. I physically feel like I’m in my early 20s again. I lost 30 lbs, most of it belly fat I have struggled with for 10 years, granted I can argue this is fallout from the hyperthyroid but I also am getting back muscle tone. I feel better so I move more. Chronic Fatigue Syndrome along with rheumatoid arthritis, lupus, fibromyalgia, thyroid dysfunction and Addison’s are just a few of the disorders Blum believes are caused by gluten and toxins. I have no idea if this will apply to anybody else, Blum has thousands of testimonials on her website, but I can only speak for me. Months later I’m still waiting to get in with the endocrinologist, I’m still going to follow up but all my symptoms are drastically reduced if not gone. I am absolutely amazed, I never realized how truly awful I felt until I started feeling decent again. The way I looked at it, it wouldn’t hurt anything to try it. It was certainly less invasive than the standard treatment of beta blockers and/or shutting down my thyroid with medication, radiation or surgical removal. I had nothing to lose, except for cakes, candy and sweets. The funny thing is I craved sugar all the time. Now a bar of chocolate will last a week or more. Being from the medical community, I am aware of the placebo effect and I am still skeptical, don’t get me wrong. I can only speak for me that this made a huge difference in my quality of life.

    • prioris says

      Nursing groups have long opposed mandatory vaccinations for it’s members because they know what causes CFS and other chronic diseases. They have been hit hard by CFS as a group. Last nurse I talked to when I asked if they will submit to any mandatory vaccine was – hell no.

      As far as Rheumatoid Arthritis, this is caused by a microbe. Seventy percent of the RA in the world can be cured with the borax protocol. I have personal experience with this and I didn’t quit gluten.

      You likely didn’t have Chronic Fatigue Syndrome. CFS is virtually incurable. You had CF – Chronic Fatique. Let me ask you – How do you remove the ciguatoxin from the system. It sticks to the nervous system and brain cells. This is one of the core issue with the disease besides the infection.

      How can gluten create very high levels of ciguatoxin in ones system. Read my post above about ciguatoxin.

      “Dr. Susan Blum does not get a flu shot for herself and she does not recommend them to all of her patients. She explained that she recommends the vaccine to patients with chronic illness who are at higher risk for complications and for her patients over the age of 65. She does not recommend the flu shot for her younger patients who are healthy individuals, though. She went on to say that there are really great ways to strengthen your immune system and that is the best way to prevent getting sick.”

      The fact that Blum recommends them to her chronically ill patients is alarming so she can’t be trusted. The evidence against vaccines is overwhelming. Even vaccine scientist Hilleman who was responsible for most of the vaccines in the world warned people before he died that it was behind the explosion of cancer also.

    • prioris says

      Let me restate something
      You likely didn’t have Chronic Fatigue Syndrome. CFS is virtually incurable. You initially had what comes under an umbrella term CF – Chronic Fatique when cause is unknown.

      Autoimmune diseases have underlying infections that need to be addressed. You may want to look into lugol’s iodine and selenium for over active hyperthyroid. There is contradictory advice about hyperthryroid. One view is that hypothyroid and hyperthyroid are both caused by lack on the iodines. removing Gluten from diet may be working for you but you may want to look at other angles that may allow you to eat gluten.

      • Lizette says

        Prioris, I also believe that injections cause a lot of problems, I don’t know if I would go as far as what you say about all of it. What Sulenna was saying does make sense. So maybe she didn’t have CFS and it was all caused by her thyroid and gluten. That’s why she said it helped HER and asked that people give it a try. I also have a gluten sensitivity. What she is saying is true. Staying away from gluten has helped me with depression, pain, fatigue and anxiety. My symptoms are not completely gone, it has made a difference. I suffer from FM and CF and almost died from systemic candidiasis. Gluten causes a lot of problems for people that don’t know they have a sensitivity. Even doctor Oz had it on his show about a month ago. What people should do is try getting off gluten for 3 weeks, and if they don’t notice a difference in how they feel then they don’t have a sensitivity. There are people that have suffered from migraines for years and have done everything under the sun to get rid of them. Some try the gluten free thing and voila! No more migraines! Gluten causes inflammation (along with other things of course) and we know when there’s inflammation in the body it causes heart disease, cancer, diabetes, alzheimers just to name a few. People, it is worth trying to see if you’re gluten intolerant or sensitive!

        • prioris says

          I agree that one needs to experiment with things. This will allow a process of elimination to figure out how to get healthy and narrow down the possibilities.

          I am of the mind set that one figure out something to neutralize the gluten problem instead of just stop eating gluten. For instance, some people just stop eating dairy because it causes their RA symptoms to aggravate. I found that taking CLA with dairy neutralizes this problem.

          here is a website everyone should know about

          http://www.earthclinic.com/CURES/candida.html

          I think FMS has multiple groups within it so one solution does not fit all. I think the diagnosis method is very crude and subjective.

          I do think that most Fibromyalgia people have underlying infections causing it. Some decades back I experiment with a few antibiotics that I could stand and minocin (not minocycline) made my FMS start evaporating in a few days.

    • Lizette says

      Sulenna, don’t be skeptical or think it’s a placebo. I’m in the same boat as you. Getting off of gluten has made a big difference for me too. Glad you’re feeling much better. Take good care.

      • Annie says

        I too have had improvement after getting off gluten, but also stopped sugar, milk, alcohol and most other carbs. No more than 15g carbs per meal (Schwartzbien Diet). I thought it would be hard, but now I can’t imagine ingesting any of that other stuff that I used to find so comforting.

  24. Gareth says

    When my CFS was still fairly bad I saw a chiropractor who totally took me off wheat. I didn’t notice much improvement in the CFS but my irritable bowel improved massively. I do however think that it’s much better to cut it down or out altogether, I do.

    I then noticed I craved sweet things badly. My chiropractor told me to take chromium piccolinate. I was amazed how the cravings instantly stopped and I still sometimes take it if I get cravings.

    Is CFS curable or incurable? Surely many do get fully better? I would say I am 95% recovered and can now go to the gym 3 times a week.

    • prioris says

      The only ones I know who get cured or mostly cured are the ones who did not have the disease in the first place.

      Have yourself tested for the ciguatoxin to figure out if you really have the disease so you don’t go down a rat hole. 100% of the people who are strictly diagnosed within CFS criteria have the ciguatoxin.

      IBS can be resolved with Aloe Muciliginous Polysaccharide capsules. AMP is the highly concentrated active ingredient of aloe vera. It also kicks ass on Diverticulitis.

      (the juice of the aloe plant is not recommended for those of us with IBS because it can be too harsh for our sensitive digestive system and can have a laxative effect! That is where AMP for IBS can help. )

      • Gareth says

        Some rudimentary online research shows that the ciguatoxin CFS link is as yet unproven, however if you can direct me to ‘proof’ then please do as I am interested.

        If it was proven to be true then this would be quite depressing, so let’s be 100% sure before telling CFS sufferers that they are doomed forever.

        I have seen vaccinations blamed for just about everything and I simply don’t buy it without proof. I myself studied the paper that was used to prove that MMR caused autism as part of my masters degree and can confirm that it is fraudulent and bad science.

        What we can say for sure with CFS is that there is still much unknown about it, but that many sufferers improve greatly if not totally, and some don’t.

        I would like to see the research that shows that only people who don’t get better truly have CFS.

        I also believe that the mind has a lot to do with it and as some here attest to the CFS was showing them that they needed to change something in their lives that was dragging them down. In my own case I improved greatly when I broke out of always trying to figure it out and what caused what. I saw that I was victimising myself more than the CFS was.

        By luck my local hospital had a CFS treatment unit and they reassured me that I could make big improvements and I did. They saw many CFS patients on a daily basis and knew from first hand that many can be helped significantly.

        I think that as more is known about this debilitating disease and as more share what worked for them we will continue to see vast improvements in the treatment of CFS.

        • prioris says

          The worlds top expert in ciguatoxin has studied the neurotoxin in people with ME/CFIDS/CFS.

          People use the same tests to determine whether they have shellfish poison. The test has been medically accepted all around the world but somehow you think this test is not proof for the case of CFS.

          Sweeping his research and findings under the rug is like putting on blinders.

          The powers that be will not allow the test to be accepted because that would impede their objective of making the disease a psychological one and making it more difficult for people to go on disability.

          Currently one has to prove the vague symptom of fatigue to get on disability. This was done by design and with malice intent. This puts all those sick people under severe stress. The vast majority never get approved for CFS, The 400K+ people who have Gulf War Syndrome get disability under CFS but they have special exemption. With such a test, it would make things more cut and dry for disability and more stress free and faster approval.

          Circumstantial evidence overwhelmingly implicates vaccines. You claim you studied a paper on autism. Studying just a paper is pathetic research. One needs to study vaccines, lies and cover up on a vast scale.

          The government has a vast disinformation program on CFS like they do on other chronic diseases. Most chronically ill people are oblivious to this. They even have fake posters put out disinformation.

          Behind the veil of state secrecy, all the unknowns of CFS can be found. Sadly most chronically ill people wear their blinders so the powers that be will win when all is said and done.

          • Gareth says

            Ciguatera Toxin a Cause of CFIDS?
            by Lucy Dechéne, Ph.D.

            But did Dr. Hokama actually claim that all the CFIDS/ME patients in his study (as well as the cancer and other patients) actually had ciguatoxin in the blood stream? No, again. The title of his presentation at the International Symposium on Toxins and Natural Products in Okinawa, Japan makes that clear. His talk was, “Acute phase lipids in sera of various diseases: chronic fatigue syndrome, ciguatera, hepatitis, and various cancer with antigenic epitope resembling ciguatoxin as determined with Mab-CTX.” The key words are “acute phase lipids” and “antigenic epitope resembling ciguatoxin.” Apparently Dr. Hokama developed the Membrane Immunobead Assay test for patient sera, using a specific monoclonal antibody for ciguatera toxin (Mab-CTX).

            From the abstract of his talk, it is clear that what Dr. Hokama found was that his antibody bound to a lipid substance or substances in the blood. Antibodies cross-react and can bind to multiple substances.

            Anyone with allergies has
            unfortunately often discovered that fact. So the substance or substances (they might differ in different people) to which the antibody bound might not be ciguatoxin. In fact it is highly likely that the substance wasn’t ciguatoxin. He suggests it is some type of lipid released by the liver.

            So what was it and what is the significance of the findings? Both are unknown at this time. Certainly Dr. Hokama’s research is very interesting. Are the substances the antibody bound to in sera the same in each subject? Are the lipid substance or substances bound also toxins or containing toxins? I hope he does more specific research to find out. Ciguatoxin has anticholinesterase activity. So it interferes with the breakdown of acetylcholine. Perhaps the mystery substances bound by the antibody do as well, which would explain some symptoms in some CFIDS/ME patients.

            So should CFIDS/ME patients rush out and get Dr. Hokama’s testing for ciguatoxin that the National CFIDS Foundation has advertised? No, since no useful purpose would be served. Even if the test was precisely specific only for ciguatoxin, no treatment for ciguatera poisoning is known. Further, it is quite clear that this antibody test is definitely not specific for ciguatoxin. We don’t know what the other substances are that the antibody binds to, nor if they are even toxins. So save your money and wait for further research. I wish I could say that Dr. Hokama’s findings are a major breakthrough in understanding CFIDS/ME, cancer, hepatitis and cardiovascular disease, but at this stage they clearly aren’t. But they are interesting. I hope Dr. Hokama looks more closely at the chemical structures to which his antibody will bind and researches the significance of these lipid substances he’s already found with that property.

            • prioris says

              I have read the same things but their action contradict their findings

              First the same test they use to test people for ciguatera shellfish poison is used.

              Second, people with shellfish poisoning exhibit most of the same symptoms as people with CFS. What a sheer coincidence.

              Third, nobody is saying that the shellfish ciguatoxin test is now invalid.

              Fourth, molecularly, the shellfish ciguatera toxin is indistinguishable from the one found in CFS except isotope wise.

              Fifth, it is claimed that the molecule produced in the liver and a lipid disease so how does the body produce a molecular similar poison in such high quantities. I could understand trace amounts but not very high amounts. It would require a microbe.

              Sixth it is not surprising that Hokama is claiming “lipid disease” since someone of his statue would likely be hooked into the government covert operations. Virtually every scientist in the world gets most or all their funding directly or indirectly from the government. Black operations is the key word here.

              Seventh, Duchene is no where to be heard or seen when the CFS people get thrown under the bus by the NIH and CDC. Duchene wants to focus on the vague symptom of fatigue. Can she prove she doesn’t work covertly for the intelligence agencies. There is nothing in her background that says she can be trusted, Duchene’s was
              Vice President and Co-Chair of the Website Committee
              Massachusetts CFIDS/ME & FM Association in 1990 but that organization’s credibility bit the dust a long time ago.

            • prioris says

              I posted Kansky’s reply below to Dechene article.

              Black operations is part of the saga on CFS. Most of the CFS research area is controlled by government covertly hence massive amount of disinformation over the last 60 years.

              I don’t entirely trust the CFIDS foundation but they have funded at least some relevant research while every other me/cfids organizations have funded dead end research by design. They have been silent about vaccines and their latest path implicating radiation reminds me of the gulf war illness cover up of the anthrax vaccines where the disinfo people pushed the depleted uranium. They never explained how soldiers who never left the US came down with the disease also. In that disaster, over 500,000 troops got hit by the disease. radiation has distinct symptoms – like your teeth fall out.

          • prioris says

            Lucy DeChene is a mathematics professor who wrote this for the now defunct Mass.
            CFIDS Update. This was written to purposely try to discredit me, personally,
            just as the group, after I resigned when they wouldn’t honor a board’s unanimous
            vote, tried many quite vile things to shut us down.

            Is it believable that the typical CFIDS patient actually has ciguatera
            poisoning?

            This was never said. What he stated and published in a peer-reviewed medical
            journal was that patients tested positive to the ciguatera epitope. Actually,
            there had already been two studies published that showed ciguatera, itself, was
            the triggering event for ME/CFS but that is not what was found in this work.
            One article that said this is available on our website.

            Well, no. There may be some misidentified CFIDS cases that are ciguatera cases

            in Hawaii, Australia, Florida and other places where ocean fish such as
            barracuda that are found off coral reefs are eaten regularly, but such fish are
            not in a typical person’s diet. The only way one can get ciguatera poisoning
            is by ingesting the toxin, and the toxin is only occasionally found in such
            fish, which are the top of the food chain. There is no other source. The
            typical human being will never be exposed to ciguatoxin.

            You are not ” exposed ” to ciguatera. The toxin, which is a ciguatera epitope, is
            being manufactured in the body by a disease (and not a ” syndrome ” ) mechanism.
            This is hardly a new concept. MS has a disease process that manufactures an
            epitope to saxitoxin (published in the late 90′s). However, no further work was
            ever funded to find out why this was found in MS.

            But did Dr. Hokama actually claim that all the CFIDS patients in his study (as
            well as the cancer and other patients) actually had ciguatoxin in the blood
            stream? No, again. The title of his presentation at the International
            Symposium on Toxins and Natural Products in Okinawa, Japan makes that clear.
            His talk was, “Acute phase lipids in sera of various diseases: chronic fatigue
            syndrome, ciguatera, hepatitis, and various cancer with antigenic epitope
            resembling ciguatoxin as determined with Mab-CTX. ” The key words are “acute
            phase lipids” and “antigenic epitope resembling ciguatoxin.”

            More proof that Lucy should stick to long division! The blood specimens had to
            be taken apart molecule by molecule to find the minute differences. The
            researchers around the world understood this paper when it was published and
            have all asked the same question: ” How could something occur which is so close
            to nature? ” The CDC granted an international blood permit to Dr. Hokama and the
            University has tested patients from around the world. Intestingly, the ones who
            first demanded to be tested were physicians who, themselves, had ME/CFS!

            Apparently Dr. Hokama developed the Membrane Immunobead Assay test for

            patient sera, using a specific monoclonal antibody for ciguatera toxin
            (Mab-CTX).

            Now this sentence shows you how really ridiculous this all is. Dr. Hokama
            helped to develope the FDA approved test for ciguatera. He went on to develop
            more sophistocated states for ciguatera. He is the government’s expert
            consultant for the NIH, CDC, and FDA for ciguatera. He is one of a handful
            worldwide who is a top expert in this area. When you develop a monoclonal
            antibody assay, you can’t get much more specific. NO healthy controls have ever
            tested positive. For that matter, we know of no primary FMS patients who have
            tested positive yet we know of not one ME/CFS patient who has not been positive!
            And not just positive, but so highly positive that Dr. Hokama had to develop a
            new classification for the higher scores which he dubbed the ” CFS profile. ”
            And, yes, the researchers at the pathology department of the Al Burns
            School of Medicine are already hard at work developing a test for actual
            ciguatera that will not show positive to CFS.

            >From the abstract of his talk, it is clear that what Dr. Hokama found was that
            his

            antibody bound to a lipid substance or substances in the blood. Antibodies
            cross-react and can bind to multiple substances. Anyone with allergies has
            unfortunately often discovered that fact. So the substance or substances (they
            might differ in different people) to which the antibody bound might not be
            ciguatoxin. In fact it is highly likely that the substance wasn’t ciguatoxin.
            He suggests it is some type of lipid released by the liver.

            So what was it and what is the significance of the findings? Both are unknown
            at this time.

            Yes. That’s what happens with every discovery. And that’s exactly why we
            funded him not once more, but twice more to date. The results of his second
            phase of research has already been submitted to a medical journal and his is
            writing on the third phase. Both have discovered much more that will help to
            explain so much about this illness as well as what direction we must go in to
            understand how to stop this entire process. And that is exactly why doctors who
            claim they can ” treat ” this neurotoxin are just using patients and do not really
            know what they are talking about. We are talking about something so close to
            ciguatoxin and we know that you can bury somebody with that toxin in their body,
            dig up the body in 100 years, and still see the toxin but we can’t spend our
            limited energy answering patients who want so much to believe a real treatment
            is just around the corner. We’d rather find the real treatment based on science
            and, when we do, it will work on everybody who really has ME/CFS. Perhaps then
            even those who ridicule us for their own personal reasons will want the
            treatment as much as I do!

            Certainly Dr. Hokama’s research is very interesting. Are the substances the

            antibody bound to in sera the same in each subject? Are the lipid substance
            or substances bound also toxins or containing toxins? I hope he does more
            specific research to find out. Ciguatoxin has anticholinesterase activity. So
            it interferes with the breakdown of acetylcholine. Perhaps the mystery
            substances bound by the antibody do as well, which would explain some symptoms
            in some CFIDS patients.

            This work will not just explain what happens in some areas (this is NOT the
            entire answer to the cause, but just one part and we’ve already funded research
            into phase 2 of the cause which will be announced in the fall Forum but not
            online since there has been so much misunderstanding and it’s eaten up much time
            answering the same questions that were answered in other articles that were not
            online.

            So should CFIDS patients rush out and get Dr. Hokama’s testing for
            ciguatoxin that the National CFIDS Foundation has advertised?

            We have NEVER advertised any test at any time. We don’t even accept any
            advertisements, unlike Lucy’s own newsletter that has now shut down. We refuse
            to because we do not want to create any conflict of interest. However, it is
            the ONLY test to date that has come out with what a laboratory considers 100%
            positive. We were sure that there were some patients that had been
            misdiagnosed. We don’t feel that way anymore!

            No, since no useful purpose would be served.

            Well, there have been many who have used their test results when their
            disability has been reviewed. Some have used it for disability applications.
            The test is not one that can be refuted even though one mathematics professor
            may think so and the person who posted this old article to a group used to be a
            volunteer for our group but now spends his time, like Lucy, trying to find fault
            with our national group. He resigned when we did not fund research that he felt
            was important but we have a medical director and well as a committee that
            decides this and voluntary webmasters do not have input into this process.
            However, we are still grateful for the work Drew did in the past for The
            National CFIDS Foundation.

            Even if the test was precisely

            specific only for ciguatoxin, no treatment for ciguatera poisoning is known.
            Further, it is quite clear that this antibody test is definitely not specific
            for ciguatoxin. We don’t know what the other substances are that the antibody
            binds to, nor if they are even toxins. So save your money and wait for further
            research. I wish I could say that Dr. Hokama’s findings are a major
            breakthrough in understanding CFIDS, cancer, hepatitis and cardiovascular
            disease, but at this stage they clearly aren’t.

            The levels found for cancer and hepatitis were far, far lower and have nothing
            in common with the test results for ME/CFS. Finding what the toxin involved
            binds to will NOT resolve the problem if it is being manufactured within the
            body. Instead, this must be attacked at the initial stage but that does not
            preclude finding out the harm this is doing and finding a real (not a
            hypothetical) marker as well.

            But they are interesting. I hope Dr. Hokama looks more closely at the chemical

            structures to which his antibody will bind and researches the significance of
            these lipid substances he’s already found with that property.

            With the help of donations from patients, the ME/CFS community can expect to
            find out much more about this work in the very near future. We have also been
            helped by some other groups with funding our work including one from Australia
            and, as we pointed out in our newsletter, we are grateful. This work, as our
            newsletter has stated, was begun by pleading and trying to convince, etc. since
            it was work we uncovered that was not published nor made available in any way.
            The fall newsletter will reveal much more that has already been discovered but,
            like the ciguatera epitope, was not published in any medical journals. We are
            particularly frustrated and angry as we just lost a board member and, should all
            the work that has already been discovered been shared with the rest of the
            world, this death may have been totally unnecessary. (Marilyn , a
            long-term support group leader, advocate, fundraiser, who put together one of
            the first conferences on ME/CFS died in August.)

            1. “Neurotoxin Discovered in Chronic Fatigue Syndrome,” National CFIDS
            Foundation, published on CO-CURE, November 17, 2002.

            It may be of interest to patients that the medical journal selected to publish
            Dr. Hokama’s initial paper on this, The Journal of Clinical Laboratory Analysis,
            is for researchers. Only papers where the entire process is carefully spelled
            out and can be replicated around the world are accepted for publication in this
            journal. The second medical journal that will publish on these findings asked
            Dr. Hokama to submit, The Journal of Toxicology (not yet out) and it may be the
            first time in history that a medical journal has requested a paper on ME/CFS!

            Gail Kansky
            President, National CFIDS Foundation, Inc.

  25. Sulenna says

    I never said I did have chronic fatigue syndrome. I said I had “absolute fatigue” and “chronic constipation” :). About the vaccines, yes I did take my flu shot this year. I switched career positions from the clinical setting to the acute and I was threatened with being forced to wear a mask whenever I entered the hospital for an entire year. I know that sounds like a small price to pay but at the time I was still feeling terrible and between the sweltering hot flashes and anxiety I didn’t think I could stand it and just gave in.

    Most of the medical community I have worked with have no problem with vaccinations and think it’s all conspiracy theory nonsense. I’m not going to speak about or for any of them. I have always placed a huge priority on continuing to learn and grow so I am always looking up things I don’t know or information that I just want to learn about. It’s so easy with cell phones and iPads, we have no excuse to be ignorant today. I also have a very healthy distrust of modern medicine and with good reason. I honestly think most doctors truly believe they are helping and doing good. I also think what they teach and what they are paid to teach in medical school is totally controlled by big business. There are still doctors that encourage mothers to give their 100lb kindergarteners three glasses of milk a day for nutrition. Cow’s milk is meant to take a baby calf and turn it into a 700lb cow in less than a year, not to mention all the hormones and antibiotic exposure that comes from consuming it. I’ve seen people who are on 30+ pills a day that keep getting sicker and sicker. A lot of it is flat out noncompliance but not all of it. I refuse to have blind trust when it comes health care and I always do my own research.

    What I’ve seen with vaccines is very alarming. I would certainly have to devote more time and investigation to come up with a valid opinion though. I do know that there is something very wrong with the general health of America. Things have changed drastically since I started nursing 14 years ago. People are dropping dead from cardiac arrest in their early 40s, going into nursing homes in their 50s and 60s. I have a small group of friends, we are all in our early 30s and we all have chronic health conditions… Hypothyroidism, irritable bowel syndrome, one was diagnosed with testicular cancer after coming back from Afghanistan when he was 26. There is something wrong, I don’t know if it’s our diets and all the chemically altered processed food, GMOs, vaccines, growth hormones and antibiotics, toxins… Whatever it is we are seeing a shift and it’s scary.

    I have eliminated dairy, eggs and gluten from my diet and have drastically cut down on sugar. I don’t use any refined sugar. I’ve switched to all organic meats and vegetables. I still haven’t given up my morning cup of coffee but it’s a cup today instead of two pots. I haven’t drank alcohol in years, good grief I felt like I was living in a constant hangover as it was, I couldn’t imagine adding that to deal with on top of everything else. Pretty much everything I eat now is very nutrient dense. I make sure to drink at least 8 cups of water daily. I’m in the process of converting to all natural personal care items like tooth paste, deodorant and makeup. I went to skindeep.org and all the makeup that I have used for years contained extremely toxic materials including known carcinogens and endocrine disruptors. Fluoride in toothpaste can be very toxic to some people. I’m also going to have all my amalgam fillings removed (apparently they contain mercury). I am taking a bunch of different supplements including an organic multivitamin (high amounts of zinc, selenium, vitamin c & d) omega 3, green tea extract (EGCG), alpha Lipoic acid, n’acetylcysteine and probiotics and enzymes. I’m making sure to eat seaweed every day as well for the iodine. I did try the gluten elimination test, after three weeks I ate two Christmas cookies and the fall out was quite intense. I’m not demonizing gluten, I wish I could still eat it but even if it’s not the cause of my autoimmune reaction I’ve proven that I’m intolerant.

    Time will tell, as with all things. Either my symptoms will continue to improve or they won’t and I will be back to square one. I hope everybody here finds something that helps them in some way, no matter what it is. Life is pretty bleak when you feel like garbage everyday.

    • prioris says

      Most people who are into natural cures find out thru experience that conventional medicine is a threat to their health in general. They cure things that conventional medicine claims can’t be cured. The cost of medical care plummets with naturopath medicine also.

      There is all sorts of data proving that the flu shot or any vaccine is a health danger and worthless. Do your research.

      Nursing groups have always fought mandatory vaccines. Most of the medical community have no problems giving people people vaccines as long as it is not them. It should be remembered that 10% of the doctors in Nazi Germany joined the SS and that doesn’t include the others who never joined but supported the Nazis. Sociopaths are more numerous in the population than that 4% figure they tout. Most doctors don’t give a sh– about your health. When they surveyed doctors who gave chemotherapy, most wouldn’t get chemotherapy themselves if they got cancer.

      As far as drinking 8 cups of water, a way to see if your body needs water is to look at your urine. Let that guide you. If it is dark then you need more water.

      Raw milk is the best milk if you have access to it since it doesn’t have the enzymes destroyed. I have a Berkey filter that removes most of the fluoride in water I drink. Borax protocol can remove fluoride in ones body.

      If you are over 40 and want to keep your arteries clean and be free of heart disease, you can take nattokinase (prevents heart attacks and strokes).

      GMO’s are going to create a lot of health problems. My nephew is Amish and they found all sorts of problems in their second generation livestock with it so they are replacing it with non GMO. The ballot questions in california and washington regarding GMO labeling were rigged. They know if it is labeled people will less likely buy it. There will be non GMO alternatives since the foot soldiers of the powers that be also have families and they don’t want to be sick either.

      For constipation cures …

      http://www.earthclinic.com/CURES/constipation.html

      for your friends …

      For Hypothyroidism … Lugols Iodine

      For irritable bowel syndrome … AMP (a concentrated form of aloe vera)

      For testicular cancer

      here are some links
      http://www.cancertutor.com/

      http://www.cancure.org/

      http://www.cancure.org/consultants.htm

      i would look at ketogenic diet and hydrogen peroxide therapy also.

  26. Sam says

    I mentioned Gupta Programme in one of my earlier posts, here is more information about upcoming weekend workshops in LA and NY. I personally purchased the course and 3mo webinar. Take a look. There are many, many free videos on their site, plenty information before you decide if it is a worthy program.
    *LOS ANGELES*
    Dates: 29th – 30th March 2014
    Times: Saturday 29th Mar 1pm – 6pm, Sunday 30th Mar 10am – 3.30pm.
    Venue: Hotel Near Los Angeles International Airport (LAX)
    Cost: $195
    You can purchase your LOS ANGELES ticket here:
    https://www.e-junkie.com/ecom/gb.php?i=1314226&c=single&cl=94906

    *NEW YORK*
    Dates: 5th – 6th April 2014
    Times: Saturday 5th Apr 1pm – 6pm, Sunday 6th Apr 10am – 3.30pm.
    Venue: Hotel Near JFK Airport (JFK)
    Cost: $195
    You can purchase your NEW YORK ticket here:
    https://www.e-junkie.com/ecom/gb.php?i=1314229&c=single&cl=94906
    Once you purchase your ticket, you will be informed of the final logistics for the day as venues are currently being finalised, so please check your email box (and spam folder) for final details. I really hope you can join us for what will be an engaging and uplifting weekend! Places are limited so please book early. You can print off the email you receive or your paypal receipt as your ticket.

  27. Anna O says

    Nice to see ME/CFS mentioned but as some one who suffers from ME/CFS it seems very, well, out of date. For one thing ME/CFS should be diagnosed using the stricter Canada criteria. Both CBT and, in particular, graded exercise therapy has had catastrophic consequenses for many. Leading to even further decline. Also, chronic fatigue and adrenal fatigue is NOT the same as ME/CFS. And the newest research is showing an autoimmune connection.

    Yes, I´ve done the Gupta program with no sustainable improvement. B12 injections, paleo diet (eventhough I´m doing an elimination diet at the moment) is helping a lot with brain fog, cognitive ability and mood. Mindfulness is also helpful for manageing my situation.

    • prioris says

      the introduction of CBT for ME/CFIDS/CFS treatment was absolutely appalling. It also designated CFS a purely mental health problem.

  28. Gareth says

    If you treat someone who has say heart disease or osteoporosis with CBT then it is fair to say that their condition will not improve or worsen. However if treating someone with CFS with CBT can drastically affect their health for the worse then this would seem to indicate strongly that the mind plays a very important part in the illness.

    • prioris says

      Gareth, you have pretty much shown what your agenda is – Make CFS a psychological disease.

      Many people who write disinformation about the disease try to be ambivalent where on one hand they say there is a physiological basis while putting a psychological spin on it. This allows them to talk out of both sides of there mouth while they do the dirty work for the powers that be.

      • Gareth says

        Damn it! i’ve been found out. Yes it’s true I’m part of a government body that aims to make sure that CFS is never classified as a physical illness. We also have lots of research money to give away to any scientist willing to distort their research to favor us. We also do a nice sideline in flu vaccinations that cause CFS sufferers to become paranoid and believe that the world is out to get them.

  29. Annette says

    This is a great feed on CFS, CFIDS, IBS, thyroid issues, and related issues. Just a mention on a few things that have helped me. I wont get into the details of my own health issues, so as not to be “accused or not accused of having CFS here on some commenters opinions, but just to say that I have suffered immensely, including being bedridden for several months at one point, for about the past 7 years. I am now 42 and have made IMMENSE improvements, can drive once again, (YAY) and I do have the feeling like I’m human once again, yet do suffer with setbacks or relapses.
    A few things that have helped me deal with several symptoms and infections are therapeutic grade essential oils. I have researched tons of brands, and found one that I like and generally reguarded as safe for internal usage is Young Living essential oils. They are amazing and can be used as antibiotic type treatment without the side effects. They don’t cause candida overgrowth in the gut. Also have used various blends for anxiety, depression, energy balance, adrenal or thyroid issues. they have been useful for me along with other therapies alone or in conjunction with other modalities. safe to take along with meds too. Hope it is helpful for someone.

    • prioris says

      I put the ciguatoxin information to help people find out what they have. Knowing what category you are in will go a long way to helping you figure out the solution to your problem.

      Saying you won’t talk too much about your health because you don’t want to be “accused” is just plain silly. Either you have the disease or you don’t. I have given you a way to find out. Wearing the CFS label blindly is not helping yourself.

      You are 42 years old but making such comments tells me you still haven’t reached maturity. I have run into many chronically sick people who rather stick their heads in the sand than confront the truth. Maybe I could have helped you with some specific problems but we’ll never know.

      I have experimented a long time ago with a few essential oils. Never got any results.

      You may want to look into taking 3 tablespoon of organic virgin coconut oil each day. This has helped some people in many ways whether you have the disease or not. See what results are in a couple months.

  30. Gareth says

    One of the most perplexing factors with CFS is the confusion as to whether it is physical or all in the mind. In my opinion this factor is a very essential part of the illness.

    Some diseases are clearly 100% physical and some much more mind based, but now more than ever it is understood that they effect each other and cannot be so easily separated out from each other.

    I believe that CFS is uniquely placed between the physical and the mental in a way that no other disease is and that this must be understood in order to get well.

    To say it’s all in the mind is I think wrong and very unhelpful. I believe that the causes are physical such as viral infections or other causes, but the chronic aspect is more mental.

    In my case, and I believe many others, there was a belief that I will never be well again and that CFS is incurable. The effect of this belief on the health of the person is truly devastating and whilst held on to will ensure that progress towards good health is a long way off.

    In my case there were times when my head would feel like it was going to explode from what felt like a very real pressure build up. I couldn’t concentrate, the fatigue was totally debilitating and I felt doomed. And yet sometimes I would practice mindfulness meditation during an episode and be totally shocked when all of a sudden it would lift and be gone in the blink of an eye.

    Sometimes I would go swimming and come back totally exhausted and at other times be fine.

    I began to realise that during an episode my thoughts were always very negative and doom laden, but the times that it could disappear in an instant made me realise that I couldn’t trust what I was thinking. my ideas about whether it was physical or mental were not reliable and were a part of the syndrome.

    My health returned slowly as I eased up my thinking and also saw that I could take responsibility for what was going on for me and I didn’t need to be a victim to my own mind.

    Now someone may say that I mustn’t have really had CFS because it can’t be cured. But I would say that this person should look closely at their own mind and the self fulfilling prophecies they have created for themselves.

    I offer this post in the spirit of wellness and the ability of everyone to make their own miracles. At the same time I also reserve the right to be wrong and corrected.

    • prioris says

      Massive decades long covert disinformation and psychological operation campaign by the government to cover up the origins of the disease has been the main driver that it is “psychological.”

  31. Carol says

    I’ve had what is termed CFS for about 12 years. I’ve tried it all. Bioidentical hormones, treatment for adrenal fatigue, biologics, megavitamins, complete change of diet, etc., etc. The only think that helped was antivirals. I was about 80 percent my old self.

    Read the book Chronic Fatigue Syndrome: A Novel for more info on that. It’s on Amazon

    • prioris says

      Who were you diagnosed by ?

      Did you take ciguatoxin test ?

      Did you overcome the neuro cognitive dysfunction ?

      What anti virals were you taking ?

      CFS is a political sensitive disease.

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