Guest Post, pt. 2: Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome?

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This is Part Two of a post on myalgic encephalomyelitis/chronic fatigue syndrome — or just ME/CFS — which is a disease that 1) knocks people right out of the game and 2) doctors can help with (though not as well as one would like). But most doctors haven’t a clue, often even viewing the illness as psychosomatic and untreatable.  Part One was yesterday, and it left off puzzling about why doctors are so unknowledgeable.

dr klimas explainingReading about the history of the illness made the situation seem far less inscrutable. The Centers for Disease Control and Prevention first investigated it in the mid-1980s, when a few hundred people near Lake Tahoe suddenly got symptoms much like mine. A couple of doctors documented abnormalities, also much like mine, and noted that the malady fit the profile of myalgic encephalomyelitis (ME), an illness that had cropped up sporadically for decades.

Purported epidemics usually turn out to be nothing more than coincidences, though, and CDC investigators found the abnormalities peculiar and the symptoms suspiciously diverse. They performed a quick investigation and wrote up a report downplaying the illness. But concern continued to grow, and a manuscript outlining the abnormalities was being prepared for the Annals of Internal Medicine. So investigators created a definition for the illness, but they kept it broad, disregarding the specific findings and requiring six months of fatigue along with several picks from a grab-bag of other subjective symptoms, like sore throat, swollen lymph nodes, and brain fog. They named it “chronic fatigue syndrome,” and they tacitly subsumed myalgic encephalomyelitis within this new illness (which the federal agencies now often call ME/CFS).

With such a broad definition, CFS suddenly applied to widely varying patients with few shared abnormalities. As a result, many doctors came to view the CFS grab-bag as a psychosomatic illness. The triviality of the name “chronic fatigue syndrome” reinforced the skepticism. After all, aren’t we all tired? The name makes the illness that made it nearly impossible for me to stand up or talk or do my job sound very much like the everyday tiredness most folks push through.

Enough good science would dispel this notion, but the illness hasn’t easily yielded its secrets. Death Valley campsiteMore shockingly, federal agencies have often impeded progress. In 2005, the CDC broadened the definition still further, requiring low levels of symptoms other than fatigue, and the number of patients who qualified for the illness increased by six to ten times — including some depressed people, pregnant women, and people suffering from the side effects of drugs. This and other broad definitions have caused huge problems in the research, especially through confusing ME/CFS and depression.

The CDC has reinforced this confusion in a variety of ways. For example, a group of UK researchers primarily uses a still broader definition of the illness, requiring no symptoms at all other than fatigue. In 2011, this group released a large study in the Lancet evaluating graded exercise and cognitive behavioral therapy for CFS patients. Although the researchers claimed that the two were “effective treatments,” the study reported no improvements in employment, health insurance claims, or welfare claims. About 15 percent of patients reported feeling better, but after a year of treatment, patients were still unable to walk as fast as those in heart failure (on average), and there were no other objective signs of improvement. The finding was trumpeted in headlines around the world: “Got ME? Just get out and exercise, say scientists,” reported The Independent.

Rather than helping to clarify the muddle, the CDC increased it. It has long embraced graded exercise therapy, putting it prominently on its website and suggesting that exercise will restore even bed bound patients to daily functioning — though the UK study showed that such expectations are highly unrealistic. The website doesn’t point out the lack of evidence that exercise is safe or useful for severely ill patients (the UK study excluded them), and while it cautions against overdoing exercise, it doesn’t mention how difficult that can be to avoid and doesn’t mention the objective guidance patients might get from the findings from two-day exercise tests. On top of that, the website recommends cognitive behavioral therapy but almost none of the treatments I got from Klimas, like blood pressure regulation and increased monitoring for cancer. It is the primary source of information about the illness for most U.S. general practitioners, and as a result, many doctors recommend no treatments other than some symptomatic care along with therapy and exercise to all their CFS patients, without impressing on them the extreme care that is essential to exercise safely. For years, U.S. experts specializing in the disease have strenuously objected and pleaded for changes, but modifications have been only minor.

Little wonder, then, that doctors tend to be skeptical about whether the illness is real and have no idea how to treat it.

Money is the other big problem. In the late ’90s, the CDC diverted $13 million appropriated for ME/CFS research to other projects, lied to Congress about it, and was caught by a whistleblower. The government now spends a mere $5 million a year on this illness; by comparison, it spends $3 billion on HIV/AIDS (which also affects about a million Americans). Even Ian Lipkin, the famous “virus hunter” who helped disprove the theorized XMRV viral link to ME/CFS, couldn’t get the $1.2 million he needs to study the microbiome in ME/CFS patients from the government. He has now turned to crowdsourcing (with impoverished patients eagerly contributing).

This fraught relationship with the federal agencies is the backdrop for the revolt of the ME/CFS community in response to HHS’s latest plan to have the Institute of Medicine develop a new definition of the illness. The specialists who requested that the contract be cancelled argued that they had already developed a good definition themselves, one requiring exercise intolerance as well as abnormalities in neuroendocrine, immune and autonomic functioning. But HHS continues to use a broader definition and has instructed the Institute of Medicine to consider many definitions, including the very general ones that can make the illness appear psychosomatic. Furthermore, more than half the members of the Institute of Medicine committee have no professional experience with the illness. As Dr. Derek Enlander, an ME/CFS specialist at Mt. Sinai Hospital, put it, “Do you want a podiatrist to treat your grandfather with lung cancer?”

Klimas, my doctor (now at Nova Southeastern University), was among those who signed the letter requesting that HHS cancel its contract with the Institute of Medicine. I asked her why she was concerned. “I’m afraid they’re about a year early,” she said. If HHS had waited, she explained, they could have developed a disease definition grounded in data, and that’s what will give a definition the heft needed to change attitudes. Just a year would be enough: Several large studies are now collecting tissues from more than a thousand patients and controls, looking for the telltale biological indicators that most effectively distinguish the two groups. Furthermore, Klimas said, without that evidence, a skeptical committee might dismiss the results of the many small studies that are now most revealing — and could as a result develop a broad definition that would exacerbate the current confusion.

HHS has pushed forward despite the intense concern from patients, advocates and professionals in the illness, and their seeming disregard undermines their effort. “If you have a great review but you don’t have buy-in from the vested communities, you’ll have problems,” says Leonard Jason of DePaul University, the leading expert in ME/CFS definitions.

These squabbles are heartbreaking when the needs of ME/CFS patients are so great. Even the high quality treatment I got from Klimas helped me only slightly. Later, I heard from patients who had significantly recovered through assiduously avoiding mold, and though I considered the theory wacky, I was desperate enough to experiment. And for me, it worked. I’m nearly recovered. I can go running, write articles, travel with my new husband – and every time I do, it feels like a miracle.

My strange experience leaves me with a thousand questions. Is mold sickening others with this illness? If indeed exposure to mold triggered my ME, why did it make me so sick when many seem to tolerate it just fine? Do other environmental toxins contribute, or is mold the whole problem? Do only certain kinds of mold cause trouble, and if so, which ones? Could my experience offer a clue that would lead to a cure, or even better, prevention? And the many possible causes besides mold need to be investigated as well – viruses, autoimmune breakdowns, other toxins.

Personally, my confidence in the true experts on the panel (including, now, Klimas) is sufficient that I expect – guess – hope – that the Institute of Medicine will develop a definition that’s moderately specific. But it almost certainly won’t put the definitional controversy to rest or give rank-and-file doctors a current, scientific understanding of the illness. Doing those things will at a minimum require a definition that’s grounded in data — data that’s still being gathered.

And we need to do better than this. We shouldn’t be wasting so much money and energy on ill-conceived efforts. Patients should be treated with respect, both by their doctors and by the federal officers whose job is to guide the effort to research their illness. And our nation – for its own economic self-interest, if nothing else – should make an investment in researching this illness that is in proportion to the devastation it causes.

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Julie Rehmeyer is a math and science writer in Santa Fe, NM. She is a contributing editor for Discover Magazine and has written for Science News, Wired, Slate, Science, and other publications. She is working on a book about her experience with ME/CFS and the science and politics of confusing illnesses. She recently wrote about her father for Aeon.

The top photo, of Dr. Nancy Klimas, is a still from a movie about ME/CFS, called Canary in a Coal Mine, by Jennifer Brea, Deborah Hoffmann, Blake Ashman, and Kiran Chitanvis.

The bottom photo is by John Kadlecek and is of the campsite in Death Valley the author went to in order to get clear of mold.

 

 

 

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28 thoughts on “Guest Post, pt. 2: Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome?

  1. If Julie has piqued your interest in the science of ME(CFS), recognized as a neurological disease by WHO since 1969, the following summarize most of the science in the field.

    1. The diagnostic and treatment guidelines known as the Canadian Consensus Criteria (CCC) (2003) is the guideline for Canada, Australia, and I believe New Zealand. It is used by most expert clinicians and many researchers. It includes the definition of ME(CFS) [pg 2,3] that Julie refers to the over 50 experts writing a letter to HHS to say use the CCC now; do not contract out to the non-expert IOM to attempt to do what the experts in the field have already done. And it summarizes and references all the key research to that date.
    http://www.phac-aspc.gc.ca/dpg-eng.php#cfs.

    2. The ME ICC (2011), the international update of the CCC that recommends using only the name ME, is already being used by some researchers and clinicians. It is not yet adopted by any countries that I know of.
    http://www.investinme.org/InfoCentre%20Guidelines.htm#ICC

    3. The updated IACFSME Primer (2014), which states that they use the CCC and starts to address severity and the use of exercise a bit better than the 2012 version, is on the US National Guidelines link and on the Canadian guidelines as well. The updated primer link is http://www.iacfsme.org/LinkClick.aspx?fileticket=zYEzLn11Ej0%3d&tabid=509
    I don’t believe the guidlines.gov or Canadian links are updated yet.
    http://www.guideline.gov/content.aspx?id=38316

    4. Looking at the agendas of the 3 conferences this spring will give you an indication of the developments in research since then. There are numerous summaries of the first 2 already held conferences on the web.
    a) 2014 Stanford ME/CFS Symposium, March 19
    Advances in Clinical Care and Translational Research
    http://chronicfatigue.stanford.edu/documents/ChronicFatigueSyndromeCME2014-FORMS-r3a.pdf
    b) IACFSME Conference, March 20 -23
    Translating Science into Clinical Care
    http://www.iacfsme.org/Conferences/2014Conference/2014ProfessionalAgenda/tabid/535/Default.aspx
    c) Invest in ME, May 30 (this group is also funding a Rituximab trial)
    Synergising Research into ME
    http://www.investinme.eu/agenda.html

    5. And finally, if you are interested in how such a major disease severely affecting so many could still have so little research funding or accurate info disseminated by the CDC, Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson is an excellent piece of journalism.
    http://www.goodreads.com/book/show/2456255.Osler_s_Web

  2. Excellently written article. Thank you for all the work, time and energy you dedicated to this. — Rivka

  3. Unfortunately, it’s extremely difficult. Mold avoidance is not a good, large-scale solution. But the fact that some number of people who have been very sick with ME/CFS have substantially recovered using that technique certainly suggests that research in the role of mold in this illness would be a good idea.

  4. I forgot to mention that the CCC clearly states that CBT (pg 10,11) and GET (pg 12) are inappropriate to harmful for ME(CFS) patients and should not be used.

  5. EXCELLENT article! Thank you for ALL you continue to do for MOLD patients and MCS patients everywhere! I am with you on sooooo much of this- I have suffered since 1998 with EI-MCS diagnosis as well as 22 other diagnoses including: allergic
    rhino sinusitis, chemical exposure, food sensitivities, inhalant sensitivities, migraine, myalsia myofibrositis, seizures, vasculitis, thyroiditis, thyroid tumors, ovarian dermoids, possible mineral deficiency, stroke, T.I.A’s(transient ischemic attack), enlarged spleen, skin rash, abscessed lymph node, h.plylori, Candida, hiatel hernia, digestion issues, inability to conceive and fatigue. One doctor even suspected MS! Keep on KEEPING ON and THANK YOU for sounding the alarm ! Sincerely, Sharon Pawlak

  6. Thanks so much for your article Julie! I’m so glad to hear of another success story!

    I’ve been considering mold avoidance, but I’m not sure I can afford to ‘start over’.

    I was wondering if you had to get rid of all of your old clothes, furniture, and other things in order to recover? Could you please explain in a little more detail? Also, did you develop new sensitivities to chemicals as I’ve read others have experienced?

    Thank you!

  7. I’m afraid that this is a very long story, and the answer will have to wait for another article, or eventually my book. I did get rid of all my belongings, but I didn’t develop chemical sensitivities. It’s a very hard approach, and while I’m immensely grateful for my recovery, I certainly don’t advocate mold avoidance as a large-scale cure (even if it turns out to be a significant player for many people, which isn’t yet clear). It does seem to me, however, that there’s clear enough evidence that it works for some people that it is deserving of study, and hopefully, eventually, we can develop treatments that aren’t as overwhelmingly difficult as mold avoidance.

  8. Thank you for the illuminating article. What a perfect example of putting the cart before the horse! If all of the woefully small funds available were used to advance research and identify biomarkers, it would negate the need for a committee to “refine the definition” of the disease. In the world of clinical research five million dollars is a trivial sum. As a physician who has recently been felled by a mold exposure I have no doubt as to the pathogenicity of fungi, a class of organism that has barely been studied as a potential cause of illness in immunocompetent human beings. Sending some funding in that direction could produce a treasure trove of information vital for the understanding of neurologic illnesses as well as ME. Most likely, those involved in making this poor decision will have difficulty defending themselves in the future, but what a shame about the lost time.

  9. Thank you, Julie. What an excellent article! I certainly hope the federal government starts taking this disease seriously after all these years, so much is at stake, it’s criminal to not.

  10. Here is a graph showing the estimated funding by the US National Institutes of Health for various conditions:

    http://imgur.com/Gd9X7tl

    I have not done an analysis on the funding per patient that also takes into account the severity of the illness and the economic impact, but I suspect it will show indefensible underfunding and neglect. Besides being interesting, such an analysis could also be a powerful argument for more funding.

  11. Thanks for this – it is such an excellent and concise summary of the problems of definition, and why the name and definition of CFS has been so damaging to patients. I am in the UK, and I am one of those who was made worse after Graded Exercise (I went from being mildly affected to being severely affected ) which is a good reminder of why Graded Exercise Therapy should not be used as a treatment, even for those mildly affected. I too am writing a book of my experiences of what it’s like to har an illness that so few doctors believe exists. I’m hoping that at some point there will be a ‘tipping point’ in awareness, much like Dr Klimas is hoping for in terms of the scientific development.

  12. Hi – Sounds like we’re on the same wavelength – I am currently writing a Ph.D. project (at Lancaster University, UK) on the conflicting paradigms of ME/CFS and how the psychiatric model gains influence. (Look, for example, at the report Peter White and Anthony Komaroff wrote for the IOM in 2010, suggesting research into ME/CFS, with Peter White making it very clear that the object of the exercise was to promote the idea that it is a ‘functional’ disorder, and that CBT and GET are appropriate treatments. This will lead you to the powerful group of UK psychiatrists – who promote this concept. A 1996 Report from the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners, ‘Chronic Fatigue Syndrome’ spells out the position of the ‘Wessely Group’ psychiatrists (8 of the 16 members of this Commission were psychiatrists, and I don’t believe any of the people doing proper laboratory research into ME were included. The IOM group are being chosen on a ‘jury’ basis – in other words, anyone who has already expressed a view on ME/CFS is excluded – this effectively bans all the specialists who actually work with patients. Peter White was the lead research in the PACE Trial, in which you had to score 65 on a scale of disability to qualify for entry into the trial (as sick enough to qualify) – then the score for ‘recovery’ was lowered from 85 to 60, on the same scale – so you could have got worse during the trial and be rated as ‘recovered’. There is much more – but maybe you are already sussing this out in your own research. In the meantime, taking the cue from the fact that exertion makes it worse, conservation of muscular exertion, systematically practiced (for example, always keep your head supported- it weighs 10lb! Use recliners, lean back when you drive…is free, available to all, and will not do harm. Les Simpson has helped a lot of people through recommending things that can improve blood flow: 6 g of fish oil, or 4 g of genuine Evening Primrose Oil per day, for example. I’ve written a short article which is available at http://www.nhsmanagers.net/guest-editorials/a-radical-treatment-pathway-for-mecfs I’d welcome anyone getting in touch.

  13. Julie –
    Are any researchers yet investigating the possibility that ME/CFS is an emergent viral disease?

    My ex-wife contracted it in 1983 while doing graduate research in Tonga, when it was completely unheard of in America. Tongans recognized the cluster of symptoms as the disease “fakamahaki” (though they attributed the cause to hostile ghosts and usually blamed it on going too near graveyards at night.) The early appearance of ME disease clusters and the initial Western medical diagnoses in New Zealand, which has a huge Polynesian expatriate population, especially Tongan, should also suggest a possible Polynesian connection. Some of the other early US outbreaks were in Southern California, which again has numerous Polynesian expatriate communities.

    Needless to say, my ex got the “you’re crazy” diagnosis from all the doctors she went to in the early ’80s, including prescriptions of Valium as a proposed “treatment” – except for a few tropical disease specialists in Hawaii who treated it seriously, though they had nothing to offer for treatment.

  14. I’m an Apple Macintosh pro in Madison, Wi… Not a medical guy at all. I was married to a woman diagnosed with CFS in about 1997. The doctors had nothing at all for her. I read a lot and somehow I made a batch of Flora Essence tea for her. It worked for her. A batch would be good for 2 weeks and I made it a number of years. We aren’t married anymore but she still makes it once in a while when needed. I just needed to report this.

    Details: our home was dry, even the basement so there was no apparent mold problem. She managed a hotel & restaurant and I can’t speak about that place. That Flora Essence I mentioned above is actually a blend of 4 major herbs with 4 minor herbs. It is a form of a supposedly anti-cancer tea invented by native Americans. OK you’re thinking I’ve run off the road. I don’t remember why I even tried it. But it worked for my wife! And making a batch would make my collie rub himself along the kitchen cabinets. If you’re at the end of your rope just try this stuff. Everyone is different but maybe it will work for you! I don’t even know if they still make the stuff

  15. I’ve moved recently to Nashville where there are no doctors available to see ME/CFS patients even at the Vanderbilt Medical Center. Dr. Clayton, who heads the IOM panel on ME/CFS is from Vanderbilt and comes with no knowledge or experience regarding ME/CFS from a city and university that ignores it. She seems well-meaning and kind at the meetings but her experience living in Nashville could lead her to believe the illness does not exist or is unworthy of treatment or research. The one research study from Vanderbilt that mentions CFS confirms a study from almost 20 years ago by Dr. Peter C. Rowe of Johns Hopkins about the ME/CFS and Orthostatic Intolerance connection but I don’t know if they are aware of the earlier work or not. It is a wasteland here for ME/CFS patients and it disturbs me that the head of the IOM panel comes out of such an environment. Still she seems highly respected here and I’m hopeful she will keep an open mind.

  16. So do you recommend going camping in the desert for a couple of weeks to test out if I feel any better away from my home and possessions, before I go to the extreme of moving house and getting everything new? I guess the black mold in the aircon units in each room of my house is a clear suspect…

  17. I was diagnosed with CFS in 2003, when I was 60. My doctor, here in NYC treats CFS as being caused by Epstein-Barr virus. I have been getting shots of Hepapressin since 2003,and taking vitamin D (2000 units a day). My CFS is not very severe; I go out each day and get the paper and bagels, and often take long(ish) walks. I have prediabetic neuropathy in my legs, and have to be careful on slippery surfaces, lest I fall. I guess I am lucky as my CFS is not so severe as to totally sideline me. Do not try to get out of Jury Duty using CFS as a reason. Some Court Officer will say something like “I’m tired all the time.” Use the diagnosis of myalgic encepholomyelitis instead; that will do the trick. Good luck to all!

  18. Interesting.. If sporatically encountered molds are indeed the culprit, I’d expect a direct link between (large scale) digging- or agricultural operations, duststorms and such going on in an area and the development of CFS among a subset of inhabitants of those areas.

  19. My sister suffered through this, and other maladies. She had to use biofeedback because she couldn’t even use aspirin for pain. No anesthesia, so no dentist. Finally after years, she had a dozen teeth removed including the last of her mercury fillings. And that was the beginning. She is cured, now. Think mercury.

  20. Molds create toxins (antibiotics) to defend against bacteria. Antibiotics are sometimes made from molds. People take antibiotics to kill bacteria. Dead bacteria give no defense to molds. Molds gain more space in the body. At some point a threshold is reached where there are more mold toxins being produced than the body can deal with. This lingering mycotoxin/antibiotic production level is maintained by the molds which affects the body’s immune responses. Illness results.

  21. After two years of extensive medical tests that found nothing that would explain my symptoms, I was diagnosed, by means of exclusion, with CFS. Here in the SF Bay Area there are a number of medical practitioners (along with the usual woo meisters) who are studying and attempting to treat the disease.

    I hate to strike a discouraging note but I have experienced a number of remissions and relapses for which I have sought but not found a cause except that some relapses have been triggered by illness or, in one case, an infection due to injury. I have not considered mold sensitivity and would like to learn more about it.

    After four years on their waiting list, I am currently under the care of Dr. Montoya’s group at Stanford (http://chronicfatigue.stanford.edu/). They are offering a number of treatments focusing primarily but not exclusively on anti-virals with some but not complete success. Their current thinking seems to be that at least a significant subset of CFS is caused by an autoimmune disorder with viral involvement that affects the central nervous system. I have tried two antivirals: one did nothing and another made me more ill. I am waiting to recover enough before trying a third.

    For the more desperate and/or risk tolerant with lots of money there are experimental treatments using Rituximab and Ampligen. These are not being offered at Stanford. Before going down that road I would recommend dong some reading. Particularly concerning is an article by Harriet Hall at Science Based Medicine (http://www.sciencebasedmedicine.org/rituximab-for-chronic-fatigue-syndrome-jumping-the-g/). There is considerable commentary available online regarding Ampligen, and it’s manufacturer.

  22. Hi Julie,

    Thanks so much for this well-written article. I’d be interested to hear about how you avoided mold. I have heard about this several times, but never found any actual instructions on how to do it (other than the obvious such as make sure there is no leakage in the house etc.). I’d like to give it a try to see whether it improves my symptoms… could you explain how you did it?

    Also, I really recommend the website http://www.hfme.org (Hummingbird Foundation for ME). It is a huge website with so much information about ME and its history, which opened my eyes. The story does not start with the Lake Tahoe epidemic and the definition of CFS. There is so much more to it. I think it is vital for every ME patient to read what Dr. Elizabeth Dowsett and Dr. Melvin Ramsay have written about the similarities between ME and Poliomyelitis. There is also a lot of practical info on the HFME website. I also recommend the website of Dr. Byron Hyde, http://www.nightingale.ca , and his very informative definition of ME. He clearly distinguishes between ME and other fatiguing illnesses (which fall under the CFS umbrella). He diagnoses ME with SPECT scans and a variety of other tests.

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