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.
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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 (published in paperback as The Paleo Cure in December 2014), 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.
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Would you recommend any books or textbooks with additional information about cortisol?
Hi,
the late, great endocrinologist William Jefferies was my mentor following my own accidental CFS “cure” some 20 years ago.
He inspired several other doctors/researchers to explore the whole “mild-cortisol-deficiency” approach to CFS that’s still largely taboo and controversial . . . too bad!
it was NIH who was trying to tie depression and CFS together with cortisol. Their attempt cover up ended in failure.
I remember very well the NIH-study attempting to treat CFS with low-dose cortisol. It was around ’94, the same time I had just had my own “accidental cure” which led to my correspondence with Dr. Jefferies. NIH had mixed results, and did not condone using cortisol supplementation to treat CFS. Their study was so flawed, one doctor even wrote in to the Journal of the American Medical Association in protest. For most of Jefferies’ long career, he was alone in prescribing low-dose cortisol for his patients with “unexplained chronic fatigue” as it was known in the old days. The NIH, and medical establishment in general, has never tried to link CFS with cortisol-deficiency; in fact, they’ve always been opposed to this scenario.
NIH tied depression to cortisol levels. By connecting CFS with similar cortisol profiles, that would allow them to claim CFS was just depression.
I try to separate the people who are sincere from the ones connected to the powers that be who are doing the dirty work. So I have nothing against Jeffries.
“Safe Uses of Cortisol” by William Jefferies.
Jefferies was one of the first researchers using low-dose
cortisol to treat a variety of conditions, including what was
originally called “unexplained chronic fatigue.” Other doctors
have followed in his footsteps, but Jefferies was the original,
and what a great guy and dedicated doctor he was.
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For anyone that has been given a diagnosis of CFS or chronic fatigue without any clear scientific testing to identify what is making them sick must read this paper here. This study is investigating a new biotoxin test for detecting mold poisons in patients with CFS. This is no bullshit and I had a doctor run this test on me and it came back positive.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705282/
What I found was that my illness was triggered by mold and after finding a doctor who treats mold and mycotoxin illnesses my health has been much improved. Certain pathogenic molds can colonize the sinus if inhaled and will start producing deadly mycotoxins that will cause an array of symptoms. Dr Ritchie Shoemaker has been one of the pioneers of treatments for mold illnesses.
This article has some basic introductory information anyone with CFS should read. Shoemaker explains the cause of the push-crash phenomena or post-exercise exertion as well as a whole range of other seemingly unrelated symptoms that we call CFS.
http://articles.mercola.com/sites/articles/archive/2012/07/22/mold-and-other-chronic-diseases.aspx
Shoemaker has identified a gene; HLA-DR that is responsible for the immune system recognising and removing biotoxins which include mycotoxins, endotoxins etc. Apparently about 20% of the American population carries a defect in this gene which means the immune system cannot properly recognise and remove these toxins. A serious exposure or chronic infection by mold in the sinus will mean that a person’s bioburden of mycotoxins will increase over time.
The immune system will begin to sense the increasing damage being done by toxins such as Aflatoxins, ochratoxins & trichothecenes (these are especially neurotoxic) and this often lead to a chronic inflammatory response syndrome which will make the affected person sicker and weaker as time progresses.
Treatment requires removing the person from the toxic environment (water damaged and/or mold infested buildings), detoxing support such as Glutathione & N-acetyl cysteine, binders such as Cholestyramine (this will remove the toxins from the body & prevent their reabsorption) & antifunals to kill mold infections in the sinus. Antibiofilm support should also be added as Dr Brewer has found that sinus molds tend to live in collaboration with Staph infections. This ‘forest’ of microbes creates a sticky matrix that protects them from the immune system and antimicrobials. N-acetyl cysteine, herbal support & other bio-film busting treatment may be required.
RealTimeLabs can do a test for mycotoxins in the urine. The worst affected patients may not be even able to secrete tiny amounts of mycotoxins in urine (false-negatives have been reported) so it may be necessary to use a Far-Infrared Sauna and take glutathione before the test to start moving mycotoxins out of fatty tissue and cells where it can be detected.
This here is another essential article to read & explains the neurotoxic effects of mold.
http://www.drdaveou.com/blog/
I haven’t heard of the lightning process but I take a number of supplements that seem to help as well. I think sleeping up to 10 hours a day or more can help a lot as well.
I think most people with the disease may develop a secondary chronic disease FMS. This doesn’t allow sleep to have a restorative quality hence one wakes up as tired as one went to sleep. I remember sleeping 20-22 hours a days for many years. It was like a tse tse fly bit me. If one doesn’t have secondary diseases develop then restorative sleep may be possible and possible.
One aspect of sleep is environmental. Outside noise, emf etc, body pain, inflammation etc and mind chatter can interfere with sleep. GABA can address the latter.
hi, chris — Is there a possible biomechanical cause for CFS? i’ve spoken to quite a few others who have CFS/ME, ulcerative colitis, and other inflammatory conditions. nearly all of us have had a neck trauma that preceded the illness. i’m wondering if neck injury causes vagal nerve damage, and in turn that impairs the body’s ability to lower inflammation, disturbs immune function, and has effects on hormonal production, organ function, etc. thanks!
Physical trauma is not the primary cause. CFIDS is a microbe infection. If trauma were truly a primary cause, the incidence of the disease would not have exploded during the second half of the 20th century. Like many other chronic diseases. vaccines are where the real origin lies. Disabling and killing people mentally and physically were one of the primary purposes of vaccines.
I knew of a couple who were rear ended in an auto accident. Both developed CFIDS at the same time.
The theory of what physical trauma does is temporarily shutdown the immune system opening up a window pf opportunity for the infection to gain a stronger foothold of activity.
hi, chris — i’m seeing a link between CFS/ME and neck trauma. my theory is vagal nerve impairment may set off a pro-inflammatory state in the gut and brain.
i’ve spoken to quite a few with IBD (ulcerative colitis/crohn’s/IBS) and a neck injury very often preceded the development of their symptoms.
http://gettinghealthiernow.wordpress.com/2014/07/25/chronic-fatigue-the-gut-neck-axis/
i wrote a blog post about it. what are your thoughts? is there a “gut/neck/immunity” axis we’re not seeing? especially in recent times, with text-neck affecting younger people, perhaps this is a driver of inflammatory disease we need to examine.
thanks!
Great article, as someone who had chronic fatigue syndrome, low cortisol, sub-optimal adrenal gland function and what i suspect to largely stem from hpa-axis dysfunction/dysregulation, i couldn’t agree more.
Relora is a good herbal remedy for balancing the hpa-axis also i believe and offering stress support.
HPA axis cause was a lie perpetrated by the government.
Hi everybody. I am 26 years old and was diagnosed with M.E/CFS just over a year ago. I find that the more information I read the more uncertain I am as to what my condition is all about and where it comes from. There are so many conflicting theories. All I can do is try to do right by my body, lots of rest, good balanced nutritional diet, and stress reducing activities such as meditation / mindfulness.
I also take a lot of recommended vitamins and Supplements;
– Magnesium; a large dose before bed helps with restless legs
– 5-HTP; before bed helps to sleep and is apparently good for reducing stress /depression /anxiety.
– B vitamins; essential for immune system
– omega fish oils
– Vitamin E
– Acidophilus (digestive enzymes)
– d-ribose; to help with energy levels
My question is regarding Rhodelia; as M.E/CFS is not completely understood, I have no idea if my cortisol is high or low.
I not only suffer from long bouts of severely low energy/illness, but I also suffer greatly after exercise in a way that I’ve not heard described before by fellow ME/CFS sufferers… A few hours after exercise I start to feel very uneasy, uncomfortable in my own skin, agitated, anxious, hot, EXTREMELY thirsty, unable to sleep.. This will last for 24 hours or more. It really feels awful and I become convinced that there is something potentially live threatening going on inside me. I have put this down to a spike in cortisol.
I have read some theories that say ME/CFS sufferes have low cortisol and some that say we have high cortisol. Either way I put this down to completely messed up adrenal glands. I am now terrified to exercise, even on a good day, out of fear of this feeling returning.
I am worried that taking Rhodelia could potentially make me worse if my cortisol is already high? But at the same time so desperate to find something which balances my cortisol, to then be able to exercise! Even a jog around the park with my dogs for 15 minutes!
If anyone could share their experiences or give any input I would be ever so grateful.
Cassie 🙂
The reason for the conflicting information … DISINFORMATION campaign has been waged for over the last 50 years coordinated here and internationally. Most people with the disease, stick their head in the ground to what is going on hence most people with disease remain ignorant. Many ME/CFIDS groups forums are heavily censored. Many ME/CFIDS doctors themselves have helped cover it up.
I already gave information above on what you need to do to determine if you have the disease – get a ciguatoxin test.
It isn’t expensive. It will help you determine if you have the disease for sure. If you are positive, it will explain why you have all the symptoms you do.
I followed the cortisol stuff a couple of decades ago regarding CFIDS – it is bogus. It was carried out for disinformation purposes by the NIH. You are going down a dead end. if you got ME/CFIDS, it is irrelevant.
I was personally helped by the late great endocrinologist William Jefferies, one of the first clinical researchers to work with hydrocortisone, following his stint as WWII flight-surgeon where he became fascinated by the effects of various stress/trauma on the adrenals. I first contacted
Jefferies after my own accidental CFS “cure” following aggressive hydro. meds for unrelated respiratory infection/asthma. I maintained my recovery for 7 years, finally able to stop low-dose prednisone treatment which was a life-saver.
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
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.
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.
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.”
That is what Guptaprogramme based on. Step by step.
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.
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.
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.
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.
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.
Gareth, CBT in itself is not harmful nor is it a cure for any disease including CFS or heart disease as you mentioned. The difference is someone with heart disease will never be told that CBT will cure them. Imagine if you had heart disease and your doctor offered you no treatment other than CBT. You take the program but when your health continues to get worse you are just told that its your own fault. That would be a harmful treatment for anyone.
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.
the introduction of CBT for ME/CFIDS/CFS treatment was absolutely appalling. It also designated CFS a purely mental health problem.
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.
To clarify my previous post-I copied and pasted the info from the email I received.
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.
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.
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.
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. )
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.
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.
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.
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.
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.
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.â€
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.
here is permission link
http://www.remedyspot.com/showthread.php/1688633-Reply-to-Lucy-Duchene-on-Cigua
The MMR link to Autism has now been proven to be correct by further studies, and Dr. Wakefield who was demonised for his research has been vindicated… Just FYI. Vaccines contain potent neurotoxic preservatives and adjuvants, I personally know many people who have have acute and also chronic problems directly linked to their receiving vaccines.
Dr Wakefiled’s research paper is now routinely used in University’s for students to come to their own conclusions as to whether it was good research and of course it never stands up well. It is a thoroughly investigated and totally discredited study, i checked it out myself.
Please cite this new research.
Personally I find the anti vaccine stance misleading and outright dangerous. It’s like the conspiracy theory that says that hiv doesn’t cause aids- it leads to death and unnecessary suffering and anyone who glibly perpetuates the myth better have some hard evidence. It’s playing with peoples lives and that’s just not nice.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.