(Thanks again to Julie Rehmeyer for allowing Health Rising to repost her two part blog series originally published on The Last Word on Nothing.)
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.
Reading 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.
More shockingly, federal agencies have often impeded progress. In 2005, the CDCbroadened the definitionstill 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.
_________
Julie is working on a book about Chronic Fatigue Syndrome
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.
Would you share the measures you room to avoid mold?
Tomorrow she’ll be answering that in an interview on Health Rising 🙂
How did you avoid mold or discover where it was coming from? Would love more information on anything that helped you recover, marry, and go running !
I have the same questions :). Look forward to an interview tomorrow where she answers them.
Yes, mold, terrible stuff. I got 100 percent more symptoms and had to go on steroids during living in a garden flat which smelt of mold and if dropped something on the floor by morning it had mold spores on it. I am so glad you felt much better and was able to lead a more productive life.
This is a very good point. I suspect that even though I was sick already and sensitive to chemicals and other environmental things, this kicked my housebound state off properly.
Unfortunately mold is with me much of the time now from the old house, getting rid is not easy.
Take care
Dawn
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Interesting. I’m also a fan of Dr. Klimas also (but not a patient). Though I’m curious as to why you are confident of a solid, encompassing CFS/ME definition when her treatments were not able to help you? That makes me think that people with mold-mediated illness might be left out of a definition?
To be clear, I’m not confident of a solid, encompassing definition. It’s just that I personally have come to believe that it probably won’t be dangerously broad.
My symptoms were classic ME symptoms, and I’d be astonished if that core of ME patients were excluded. (Though I’d add that stranger things have happened — the Oxford definition, for example, might have excluded me, concluding my neurological symptoms precluded CFS.)
I don’t think they’ll be left out – because they do fit the characteristics of ME/CFS but I’m also pretty sure that they’re not going to be mentioned. I wonder if the IACFS/ME Treatment primer has mold in it? I’ll bet it either doesn’t or it’s mentioned in passing.
With the exception of Dr. Shoemaker I don’t know if any ME/CFS specialists really focus on mold. I know they’re aware of it but I would be surprised if they recommended the kind of mold avoidance Julie did.
This is mostly coming from patient experiences I think.
I got deathly ill from mold exposure while working in a water-damaged building in 2005. I developed a severe respiratory virus and my CFIDS symptoms went off the charts! I still have some lingering neurological symptoms to this day that hinder my functioning, even though I am no longer exposed to mold. There’s a simple test to find out if you have the “dreaded mold genome,” per Dr. Ritchie Shoemaker. I describe it on my mold page at http://www.fms-help.com/mold.htm – scroll down to my December 2011 update. You can do this at home in a few minutes. My results were amazing to me! I have heard from others who are sick from mold, and they all have the same test result as I do! I would be very interested to know if anyone does this test and if you are sensitive to mold. Dr. Shoemaker http://www.survivingmold.com says that 20% of the population is adversely affected by mold, which explains why 80% can live and work in moldy conditions and not get sick (and perhaps think we’re hypochondriacs). Those of us with the genetic predisposition are devastated by mold.
I’ve just started thinking about mould as an issue in my fatigue (I hate calling it my fatigue, but until I can persuade someone to take it from me, I guess that’s whose it is!).
I tried the test you describe, Dominie, and it turns out that I am wider than I am tall, so maybe I’m dealing with mould intolerance as well as gluten intolerance etc.
I’ve long wondered about my house being part of the problem, but from a toxic chemical aspect, having used ordinary paints and floor sealants over chipboard in the construction. But as I’ve never been able to afford to heat it since I built it 14 years ago, perhaps there’s mould around that I can’t see a sign of (though I try to keep it well-ventilated winter and summer).
I’m going to investigate further – any hints from those who’ve been through this?
What confuses me is that until this article, and another I read yesterday, I thought this is what all CFS/ME suffers wanted? Now that they are getting it, they don’t what it? Cort, am I mistaken, I read everything I can find on this illness, and I’m positive that I read plenty on ppl wanting a new name and a clearer definition. So why the fight now that they are getting it? You know the old saying, becareful what what you wish for? I guess it does make sense that the decision be made at the right time with the current ongoing research, and that the right people be involved in making the decision, which is why I believe these things should be included in the letter that they are asking people to sign. I do get confused easily now that I have CFS, so please let me know if I’m not recalling this correctly. Thanks Cort for once again, like always delivering a wealth of information. These were great posts, I appreciate Julie’s willingness to share her experiences with us.
I may be a minority, but I think the IOM clinical definition will be a huge win for the ME/CFS community. I’ve been thinking this ever since the makeup of the panel came out.
There’s no way that Nancy Klimas, Lucinda Bateman, Lily Chu, Ronald Davis, Betsy Keller, Martin Lerner, Benjamin Natelson and Peter Rowe are going to let the a screwed up definition come out of the IOM contract. Are you kidding me? Five of the members are doctors who’ve been seeing patients for decades. Another just proved that postexertional malaise is metabolically based. Another is an award winning geneticist who’s son is terribly will with ME/CFS. Another is a doctor who HAS ME.CFS. This is about the strongest panel for any project I’ve ever seen.
If you can’t accept that panel I don’t really know what you can accept. You never get the panel you really, really want in these projects- you get a mixed bag and this is about as good of a mixed bag as you can get. Plus you want outsiders to bring their expertise to the panel and to add legitimacy.
With the IOM involved the definition should spread and be accepted rapidly – and it will be believed. If they do it right and I suspect they will skeptics in the medical community will have a rigorously vetted description from a very respected institution.
That is a world of difference from a definition, no matter how good it is – and I think the CCC and ICC are superb at describing this illness – that comes from inside a community that is viewed with huge skepticism.
One definition will be listened to and that means many doctors will finally get and will accept a good description of ME/CFS. It’s a big step forward.
It’s a shame that there has been so little done in regards to CFS over the years. I was diagnosed in 1989 when CFS was still being nick named the “yuppy flu”. It was 2 years of sheer hell on earth. After the first 2 years I became functional again but never to return to a “normal” life. Several years later similar symptoms returned but this time pain was more prominent than the exhaustion. With similar experiences with getting a correct diagnosis, I researched on line and learned of Fibromyalgia. I took the diagnosis to the doctor which they agreed and confirmed. If I can recommend anything to those that suffer from either illness it would be to avoid any toxins. Mold, household chemicals, varnish, smoke, pesticides, etc. The best thing I did for myself was to have a health centered dentist remove my silver fillings from my teeth (8 of them). Which I had since I was a young child and was now in my 40’s. All replaced with white fillings. My health improved significantly. I had learned about this via internet research. Read mercury-free.com. Luckily for me the author/dentist office was a 1 hour drive from me. Our bodies are already fighting, don’t expose them to anything else…we can’t handle it. Also, just know that this is not “all in your head”, you are sick. For me I still struggle to live a somewhat normal life but I do work. Mostly because I’ve been blessed with a job that allows me to work at home 85% of the time. I do wish that doctors would stop suggesting that we have some responsibility for feeling so poorly. Yes we feel worse if we exceed our body’s limitations but we can’t avoid all stress, work, etc…that’s not how life works. Praying for a cure someday. Meantime, one day at a time.