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Is Chronic Fatigue Syndrome an Autoimmune Disease?

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For decades, a heated debate has raged over the nature of the illness known variously as chronic fatigue syndrome (CFS) and/or myalgic encephalomyelitis (ME). Historically, the two warring camps have been divided between “it’s all in their heads” and “we’re still looking.” But while both sides have consistently referred to CFS/ME as an “enigma,” it turns out the source of the illness may very well have been under everyone’s nose the whole time.

In the May 2013 issue of Discover Magazine, an article by Jill Neimark bearing the intriguing title, “Are B-Cells to Blame for Chronic Fatigue Syndrome?,” chronicled a remarkable discovery: wiping out the B-cells of patients with CFS/ME can actually cure the illness.

In 2007 Øystein Fluge and Olav Mella, two Norwegian oncologists at Haukeland University Hospital in Bergen, Norway, accidentally discovered that rituximab, a drug employed to treat Hodgkin’s lymphoma (as well as autoimmune disorders such as rheumatoid arthritis and Wegener’s granulomatosis) cured several of their patients with CFS/ME. The news made instant headlines.

Inspired by their success, Fluge and Mella conducted a pilot study of rituximab on three patients with CFS/ME. All three patients experienced significant improvement, although in one case the response was delayed by six months. The positive results of this small study led to an open-label trial two years later, this time with 30 CFS/ME patients. Again, the responses to rituximab were significant. Sixty-seven percent of the patients reported global improvement. Notably, four of the rituximab patients showed improvement past the study period. 

The authors concluded that the delayed response, starting from two to seven months after rituximab treatment, “suggests that CFS is an autoimmune disease and may be consistent with the gradual elimination of autoantibodies preceding clinical responses.” The unprecedented success of these small trials has led to larger trials, the most ambitious of which is a $2.1 million privately funded initiative spearheaded by the Norwegian nonprofit group, ME and You.

This is all very topical, but is it new? Dr. Paul Cheney, an immunologist, and one of the physicians who treated CFS/ME patients during the Incline Village outbreak, stated nearly 30 years ago that CFS/ME was the result of immune system upregulation. In fact, the prevailing theory during the 1980s and 1990s was that the immune systems of people with CFS simply did not shut off after the initial infection, but remained on “high.” This was considered the driving force behind CFS/ME, and, not coincidentally, is the basis for autoimmune disease.

Nonetheless, the idea that CFS/ME was an autoimmune disease languished for decades, even though the on-the-ground evidence has been apparent all along. The waxing and waning symptoms that are typical of CFS/ME are also typical of autoimmune diseases. Frequent comorbidities of CFS/ME with at least two autoimmune diseases – Sjögren’s Syndrome and Hashimoto’s disease – were tip-offs that an autoimmune process was involved. And even if researchers didn’t care to take symptoms and comorbidity into account, there were dozens of studies documenting immune system abnormalities, particularly increased inflammatory cytokines, as well as a high incidence of markers such as antinuclear antibodies (ANA), and anti-cardiolipin antibodies (ACA), both of which are associated with autoimmunity.

The sad fact is that although the evidence was there, it was ignored. In a recent review of the accumulated evidence for autoimmunity in CFS/ME (in a chapter titled “Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Parallels with Autoimmune Disorders”) Ekua Brenu and associates site over 180 related articles. Their conclusion? “CFS/ME may have a potential to be described as autoimmune.”

Given the thorough nature of the review, Brenu’s conclusion, however cautious, was warranted. And, bearing out Brenu’s review, as well as the rituximab studies, in March 2013 a UK study by Bradley et al found an increased number of naïve B-cells in patients with CFS/ME. An increase in naïve B-cells is a hallmark of autoimmune disease. In short, if it walks like a duck, and it quacks like a duck, it’s a duck.

Apropos of the rituximab studies, and as an excuse for not noticing the duck-like nature of CFS/ME, Neimark quotes rheumatologist Jonathan Edwards as saying, “T-cells were in fashion for a long time. B-cells were just considered boring.” It is hard to imagine that the absence of  research on half of the immune system could be due to the whims of fashion, but whimsy is only part of the explanation for this exercise in mass denial. The other component is that the major players in our health care system – government agencies, researchers, physicians, insurance companies – have had a vested interest in perpetuating the myth that CFS/ME is an unknown and unknowable entity.

Norwegians, apparently, have less invested in the myth. When the results of Fluge and Mella’s rituximab study were made public, the Norwegian Directorate of Health Deputy Director Bjørn Guldvog was prompted to issue a televised apology. “I think that we have not cared for people with ME to a great enough extent,” he said. “I think it is correct to say that we have not established proper health care services for these people, and I regret that.”

We look forward to hearing something similar from the CDC.

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About Erica Verrillo

Erica Verrillo is the author of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition. She has published three middle reader fantasies with Random House: Elissa's Quest, Elissa's Odyssey and World's End. Her short stories have appeared in Million Stories, Front Porch Review, 180 Split and Thema.
  • http://cfsremission.wordpress.com Ken Lassesen, M.Sc.

    What seems to be missing from researchers view is the close association of specifics gut flora alterations with specific diseases. In the last few years there has been a few research papers that found that ~85% of a subset of illnesses may be correctly predicted by examining the patients gut flora alone.

    With CFS, the 1998 Manly Conference found such a pattern. For Crohn’s diseases there is a similar “fingerprint” pattern.

    Many items like rituximab and tetracycles are know to alter gut flora. This begs the question: are the improvement caused solely because of the gut flora alteration? If we look at reported remissions for several auto-immune conditions reported from Australia due to fecal transplants, the question importance is increased further…

  • Shewolfdc

    Ken Lassesen: I am so happy to read your comment. I have been diagnosed with various ‘autoimmune’ diseases since age eight starting with Hashimoto’s thyroiditis. I have thyroiditis, psoriasis, autoimmune diabetes and rheumatoid arthritis. During the doctor’s rheumatoid arthritis phase I was given Rituximab. It worked after the first treatment, but over the course of 2.5 years and multiple treatments, it stopped working so that I was as bad as I ever was. My current diagnosis is CFS. Autoimmune disease is a description and not any reason to be hopeful. I say, so who cares if CFS is autoimmune? Maybe the drug companies because they get to sell us a bunch of drugs that only help a little. What is autoimmune disease? An immune system attacking itself? Why is it doing that and what will help patients? I’m now 57 years old and have had a lifetime of autoimmune disease. I’ve studied this extensively. Right now the research I am most interested in is that a yet unknown virus or retrovirus is causing the immune system to stay on and the other research is the gut flora theory. The gut flora theory is amazingly interesting and hopeful. Gut flora has only been able to be studied with modern technology and what we are learning may be life changing.. So CFS is an autoimmune disease. Yawn. Knowing that and having $3 will get you a cup of coffee. The coffee will keep you awake so that you can watch drug companies make more money by selling their existing drugs to an ever wider group of patients. Drugs that are extremely expensive and provide limited relief to patients. Wake me up when you have some real news.

  • polly

    I am in the UK I have ME/CFS . The way patients are treated here is appalling . I have also gone on to develop hashimotos , I am also positive on the ANA test . I have all the signs and symptoms also of ehlers danlos syndrome / connective tissue disorder yet because I have the ME aka all in the head diagnosis as the UK portrays thanks to a group of highly influential psychologists I am getting sicker and not better . I have done the CBT been to the so called ME clinics and ive also exercised which made me a lot worse . I am convinced I have another autoimmune disease and also a connective tissue disorder however once diagnosed with ME/CFS in the UK it is nigh on impossible to get another diagnosis thanks to the stigma and presumptions made about this illness . I am seeing a private doctor shortly who specialises in ehlers danlos syndrome / hypermobility hopefully I will gain that diagnosis and perhaps some treatment which will help and I am hopeing he can either diagnose the autoimmune disorder too or if not point me to a doctor who can . I have given up hope of ever receiving adequate care or diagnosis on the NHS . I really hope this research is successful I have said since becoming ill that there was something wrong with my immune system I can feel my body is constantly fighting itself but as I say once you have A ME/CFS diagnosis in the UK they stop looking .

    • Sarah Benjamins

      Polly would you mind saying who you’re seeing and whether you got anywhere with them? I have a similar profile to you though thankfully for me the fatigue is as yet fairly manageable..Also please if you haven’t already consider autoimmune diet protocol -google mickey trescott.

  • John

    Although this is a very good and informative article and the author is to be congratulated for writing it, it does contain some inaccuracies-

    1. The 30-patient study described in the second Rituximab paper by Fluge and Mella following the initial case series of 3 was placebo-controlled, not open label. 15 patients got Rituxan and 15 got saline placebo. Also, to say that the patients were ‘cured’ is not quite accurate, IMO. Based on what I’ve read about the trial in various articles, I think the response varies from doing ‘something’ to some responders to major and global improvements in others, however I think very few patients have not experienced a relapse when the effects of the drug wear off, ie once their B-cells are replinished.

    After the results from the placebo controlled trial were published, I think the authors continued giving the responders Rituxan to see if the response could be sustained and also gave it to the 15 patients who got placebo in the original study, with the results from this follow-up open label study to be published sometime this year.

    2. The larger multi-center trial described in the article has not actually taken place yet. The authors were turned down for funding in late 2012 and have applied again in Spring 2013. In the meantime, the MEandYou Foundation has started a collection to raise the necessary funds but there still is a considerable amount of funding lacking for the full trial to take place since Fluge and Mella have stated that it would not be ethical to start the trial until they had the funds to finish it. I think the results of the second funding application are to be known sometime this summer.

  • jill neimark

    Thanks, Erica. There was much I didn’t have space to put in. Rituximab has to be given periodically in most cases, because once b-cells are approved to make a certain antibody, the progenitors go into the bone marrow and continue to generate daughter b-cells that make that antibody, for at least ten years. We don’t actually know how long. Thus a relapse is pretty common, and re-administration of the drug, while monitoring the immune system to be sure it’s still in safe parameters.

    Also, autoimmune is a generic word. This specifically posits b-cells in at least a subset of CFS/ME. The idea would be that there is actually an antibody that is targetting the CNS. A more targetted drug needs to be developed, that doesn’t as broadly wipe out all b-cells.

    There are probably all kinds of overlapping subsets. I doubt that gut flora is the driver in most cases, but in some, it might be, as evidenced by Borody’s work with fecal transplants and CFS. There are probably viral, bacterial and fungal, and mixed triggers for many folks. Tickborne disease is a major cause.

    Adsorbing the toxins some of these bugs produce can make a big difference to some people. The toxins themselves generate an immune response. I was told once by a scientist that anthrax killed by its toxin, and the immune response to that toxin, period. If you could neutralize that response, it wouldn’t kill.

  • support autoimmune research MS

    This paper supports the autoimmune disease theory (PDF) as well.

  • Joseph S Maresca

    The Alternative Medicine-Definitive Guide by Dr. Burton Goldberg places CFS as a constellation of conditions including nutritive deficiencies, poor coping, acquired infections, parasitic infections and sometimes too many silver amalgum fillings. Diet, nutrition, wheatgrass juice, stress management and acidophilus are all ingredients which constitute the road back to health.

    Medically, I would suggest tracking inflammation blood markers very closely. i.e. c-reactive protein, SED rate, white count

    A colonoscopy could be useful in finding out whether or not there is an autoimmune component to this condition. A diet rich in fresh fruits, veggies, nuts, water, herbal tea and soups is very necessary to rebuild the immune system.

  • Gail Kansky

    CFIDS and ME were proven to be an autoimmune disease in fully replicated research in 2008 (Journal of Clinical Laboratory Analysis) by Hokama et al. The same researcher took apart the blood of patients molecule by molecule and found ME to be identical to CFIDS/CFS. Like all autoimmune diseases, there are many overlaps.

  • Pat

    My lab test results this week were high for ANA Titer, indicative of an immune disorder. In my online search of immune disorders and CFS I came across this article. I was searching to see if information had changed since my acute symptoms of CFS in 1978. My severe symptoms occurred the same time as the Incline Village outbreak mentioned in this article. My research then, only from books on CFS, pointed to CFS being an immune disorder. Tests I had in the early 80’s showed I had an immune profile similar to an Aids patient. Interestingly, my healthy son has a similar profile and 2 other people I knew with CFS in the 1980’s had similar profiles. I also test positive for Epstein Bar Virus. I dealt with the symptoms of CFS before the illness was recognized by the medical profession. I am a Registered Nurse and was determined to find the cause of my debilitating illness because I did not believe it was “all in my head” as most doctors believed. My pursuit took me to Alternative medicine. Books written by William Crook in the 1980’s saved my life along with a brilliant doctor who knew exactly what I needed to do for my symptoms. Reading Crook’s first book, The Yeast Connection, I saw myself throughout his book. I was a classic case of Candida with the lifelong history that led up to my system collapsing in 1978. It took several years to get control of my symptoms with nutrition,supplements, environment, removal of mercury fillings and a prescription for Nystatin. I needed to lessen the overload of my immune system. I say “control” because CFS is never gone, just waiting to resurface under the right conditions. Fast forward to today. I am 69 years young today. Sugar is my downfall, creating the feeling of a bad hangover. Today I am in control of my body and how I want to feel, unlike 35 years ago when I had no idea what was causing my symptoms. When I eat what I shouldn’t, I suffer the consequences knowing I will feel better in 24 hours. I sell natural foods in our family run supermarket. I provide guidance for people with Candida and CFS. Unfortunately many people do not want to change their lifestyle. They are looking for that “magic” pill that will make them better. As a nurse, I was intimidated by my beliefs that were counter to the medical profession. I no longer feel that way because for 30 years I have seen the positive results of controlling CFS with lifestyle changes.

  • nikki dodd

    I’m very confused :-( can any body help me understand? I’ve had m.e for 29 yrs and ive always had inflammation in my blood but my anti nucular and auto immune has always been ok.can anybody help me understand whats going on and does anybody have the same thing?thanku :-) xxx

  • MegaJ

    I have been struggling with this disease for years. If I overdo it physically I feel like I am going to die and my memory and concentration levels are always subpar. What is worse is trying to convince a doctor that CFS is a real physiological, autoimmune disease. Even if they do believe you have it, there is no treatment they will offer. They always wind up sending me to every specialist in the book to treat the individual symptoms. When my blood it tested, my white cell count is always high, and I always test off the charts for Epsteins Barr. I currently try to exercise on a treadmill and lightweights as much as I can although I still sometimes go to far and make myself ill. I also have been experimenting with many different vitamins and supplements, and although I have tried a multitude of them, there are only two things that I can honestly say have helped me, and they are probiotics(such as lactobacillus) and pomegranate juice.

  • Sol

    Well, after the apology from, the now health director, Bjørn Guldvog, the big multicenter follow up study with Dr. Fluge and Dr. Mella, have not yet received sufficient funding… But ME-patients are helping out trying to raise as much money as possible to be able to get the study completed.

    To donate money for the follow up multicenter study,

    go to: http://me-forskning.no/english/about-this-fundraising/

    Or: http://www.meyou.no