Tuesday, February 10, 2015

IOM Report: Remarkably Positive for ME patients

The IOM report is in, and it’s remarkably positive for ME patients. The IOM committee has proposed a new name for ME: Systemic Exertion Intolerance Disease or SEID. OK, it’s a mouthful, and how do you pronounce the acronym? It’s possible that disbelievers will morph the name into: You’re Just Too Lazy to Exercise. Which no one would do had there not been the idiotic Chronic Fatigue Syndrome moniker for thirty years, drumming into the public’s collective head that sufferers had nothing really wrong with them, except perhaps indolence.

All that being said, SEID beats Chronic Fatigue Syndrome by a mile, and it trumpets—at long last—the most critical piece of this complex and catastrophic disease:  post-exertional collapse.

From the press release, issued along with the 235-page report: 

Diagnosis of ME/CFS requires that a patient have the following three core symptoms:

A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue—which is often profound—of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest

The worsening of patients’ symptoms after any type of exertion—such as physical, cognitive, or emotional stress—known as post-exertional malaise

Unrefreshing sleep

At least one of the two following manifestations is also required:

Cognitive impairment

The inability to remain upright with symptoms that improve  when lying down—known as orthostatic intolerance

These symptoms should persist for at least six months and be present at least half the time with moderate, substantial, or severe intensity to distinguish ME/CFS from other diseases

Astonishingly, especially given CDC’s long misplaced obsession with cognitive therapy, the IOM paid little attention to it, the major paragraph registering barely a whimper: “The efficacy of cognitive-behavioral therapy (CBT) in improving cognitive function in ME/CFS patients is unclear. Knoop and colleagues (2007) found a decrease in self-reported cognitive impairment following CBT, yet ME/CFS patients did not differ from a support control group on results of the subscale of alertness behavior of the Sickness Impact Profile (SIP-ab). These results do not preclude the use of CBT to mitigate cognitive impairment in ME/CFS, but do suggest that any effects of CBT may not be measurable by a single scale such as the SIP-ab.” 

Here are the committee's recommendations:

Recommendation 1: Physicians should diagnose myalgic encephalomyelitis/chronic fatigue syndrome if diagnostic criteria are met following an appropriate history, physical examination, and medical work- up. A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Edition (ICD-10) that is not linked to “chronic fatigue” or “neurasthenia.”

Even if patients do not meet the criteria for this disorder, clinicians should address their symptoms and concerns. Patients who have not yet been symptomatic for 6 months should be followed over time to see whether they meet the criteria for ME/CFS at a later time.

Recommendation 2: The Department of Health and Human Services should develop a toolkit appropriate for screening and diagnosing patients with myalgic encephalomyelitis/chronic fatigue syndrome in a wide array of clinical settings that commonly encounter these patients, including primary care practices, emergency departments, mental/behavioral health clinics, physical/occupational therapy units, and medical subspecialty services (e.g., rheumatology, infectious diseases, neurology).

One failing of the report is that the recommendations don’t include the pressing need for more research and funding into the disease. But later in the report the committee does touch on this failing: “Remarkably little research funding has been made available to study the etiology, pathophysiology, and effective treatment of this disease, especially given the number of people afflicted. Thus, the committee was unable to define subgroups of patients or even to clearly define the natural history of the disease. More research is essential.”

The inclusion of the word “remarkably” is especially welcome.

The report addresses accurate economic costs of this disease: “The direct and indirect economic costs of ME/CFS to society have been estimated at $17 to $24 billion annually (Jason et al., 2008), $9.1 billion of which has been attributed to lost household and labor force productivity (Reynolds et al., 2004). High medical costs combined with reduced earning capacity often have devastating effects on patients’ financial status.”

The IOM addresses pediatric ME as well.  From the report: “There is sufficient evidence that orthostatic intolerance and autonomic dysfunction are common in pediatric ME/CFS; that neurocognitive abnormalities emerge when pediatric ME/CFS patients are tested under conditions of orthostatic stress or distraction; and that there is a high prevalence of profound fatigue, unrefreshing sleep, and post-exertional exacerbation of symptoms in these patients. There also is sufficient evidence that pediatric ME/CFS can follow acute infectious mononucleosis and EBV.”


  1. Mindy,
    Thanks for getting this up so fast! I'm partway through the report itself, but so far, I think I'm ecstatic. After 20 some years of being somewhere on the spectrum of disappointment to outrage at the activities of the federal government, it is disorienting to allow myself to be pleased. But until I or someone else uncovers a fundamental problem, let's celebrate!

  2. I am going to second your take on it, Mindy. Imperfect, of course. Surprisingly positive, yes.


  3. What is most important is how will HHS react to this report and what will they do with it? Dr Bateman shared a tweet yesterday which said "make some noise". The battle is far from over I am afraid. It is only beginning.

  4. I'm generally pleased with both the new criteria and the report, which are far better than I expected. The report is also much better than the outrageously bad AHRQ report of last year, written by amateurs.

    I like that the name and the criteria focus on the cardinal symptom of our disease: post-exertional morbidity. (Wish we could get away from the psychiatric-sounding "malaise," though!)

    While I was attached to "M.E.," that name has already been drained of power, especially in the UK, by becoming synonymous with idiopathic mild fatigue. Anyone can say they have M.E.

  5. Mindy I'm surprised at the unexpected positive spin on this. If any doctor can diagnose this 'condition', which has no tests or treatments and doesn't exclude psychiatric conditions, its not the serious WHO neurological disease ME. An untestable and untreatable condition will not help genuine patients get disability payments.

    Exertion intolerance and malaise is as believable to the general public as fatigue/laziness. What serious disease has a toolkit? Does M.S. have a toolkit or do patients see appropriate specialists for diagnosis and treatment? I don't see how you can be so positive about this obvious political ploy. Have you not seen the public's reactions to this? We're doomed if this goes ahead.

    1. I have been concentrating on the big picture - what people are thinking about the existence of the report and the definition, without reading the 300 pages. This represents 95% of physicians and the public.

      While the embargoed announcement was really good and widely covered, the responses are the real measure of its effectiveness; and by that measure, the definition is a flop, because no one said "Oh, I see now" and comments consisted of the same old sarcastic "Yeh, I'm tired too". And I have an idea as to why. I think the IOM (in their definition, not the report) made the same error as the 1988 article; they defined the disease in terms of "fatigue" rather than in medical terminology. And the whole world already knows that fatigue means "lazy" and "malingering", no matter how many adjectives you use. Yes, they listened to the patients and made PEM central, but to the exclusion of all the medical abnormalities that are associated with it, which they called "co-morbidities" rather than prominent features of the illness.

      If they distribute literature without first obtaining public comment, "malingering" will only be further embedded in the public mind.

  6. I'm very unhappy with the SEID name. Our illness should be called by its rightful name, ME, and I don't trust the IOM Committee. Dr Bateman was a turncoat, who spit in patients faces when she took her name off of the experts list, criticizing the HHS.


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