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The IOM's failure to identify subgroups. Implications?

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Part of the task assigned to the IOM was to distinguish between subgroups, which they were unable to do:
Although there was sufficient evidence with which to carry out the first steps of its task, the committee was struck by the relative paucity of research on ME/CFS conducted to date. 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.
In achieving the first part of their task - recommending clinical diagnostic criteria for ME/CFS - PEM became mandatory, where as under Fukuda it had been optional. Therefore, intentionally or inadvertently, the committee did subgroup. This is the result:
  • Fukuda patients without PEM do not have ME/CFS (SEID).
  • Fukuda patients with PEM are likely to have ME/CFS (SEID). In effect, what they have is what many of us (but not all) would already have understood by ME but with simplified criteria. Note that this does not automatically imply a single disease.
Obviously we can only speculate about this but do you think it was an intentional act by the committee, to ditch a portion of the original group of patients? Ditch is a harsh word, I know.

Have the committee done a favour to people without PEM? If they are fortunate, they will be medically reassessed and this may lead to the diagnosis of hitherto missed conditions. If they are unfortunate, they'll be treated to the same contempt that they currently 'enjoy'. Will they end up being stigmatised even by us? (See how easy it is to slip into 'them' and 'us' language? It's a painful thought.)

The recommendation to make PEM mandatory is what many patients have been asking for. The 2 day CPET already provides evidence for PEM and no doubt biomarkers will follow. ME/CFS (SEID) must surely now be accepted as a serious, life altering / life demolishing disease with a biological basis. Given this and the under-diagnosis that the committee highlighted, increased research activity must follow. Somebody reassure me about that, please!

What implications might the new clinical criteria have on research if any? Does anyone think this is now the end of the story as far as subgroups within ME/CFS (SEID) are concerned? Does it still make sense to include non PEM Fukuda type patients, who don't have an alternative diagnosis, as a discrete group within research of ME/CFS (SEID)?

BOX 1-1
Institute of Medicine Study on Diagnostic Criteria for ME/CFS:
Statement of Task

An Institute of Medicine (IOM) committee will comprehensively evaluate the current criteria for the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The committee will consider the various existing definitions and recommend clinical diagnostic criteria for the disorder to address the needs of health providers, patients and their caregivers.

The committee will also distinguish between disease subgroups, develop a plan for updating the new criteria, and make recommendations for its implementation. Any recommendations made by the committee will consider unique diagnostic issues facing people with ME/CFS, specifically related to: gender, across the lifespan, and specific subgroups with substantial disability.

Specifically the IOM will:

• Conduct a study to identify the evidence for various diagnostic clinical
criteria of ME/CFS using a process with stakeholder input, including
practicing clinicians and patients;
• Develop evidence-based clinical diagnostic criteria for ME/CFS for use by
clinicians, using a consensus-building methodology;
• Recommend whether new terminology for ME/CFS should be adopted;
and
• Develop an outreach strategy to disseminate the definition nationwide to
health professionals.

Over the 18 months, the committee will consider 4 topic areas and produce a consensus report with recommendations. The recommendations will have a domestic focus; however, major international issues may be identified. As the committee reviews the literature, efforts that have already been completed on this topic area will be considered, including the 2003 ME/CFS Canadian Consensus Criteria, the 2007 British National Institute for Health and Clinical Excellence (NICE) Clinical Guidelines for CFS/ME, the 2010 Revised Canadian Consensus Criteria, the 2011 ME International Consensus Criteria, and data from the ongoing CDC Multi-site Clinical Study of CFS. In an effort to minimize overlap and maximize energy, the committee will seek input from the NIH Evidence-based Methodology Workshop for ME/CFS.
 

anciendaze

Senior Member
Messages
1,841
You have raised a good question. Those boxes on the flowchart saying "consider another diagnosis" are not at all informative, nor is the question of differential diagnosis likely to be resolved without clinical tests for known diseases which have (so far as I've seen) been almost passed over in silence. If you are not advised even to test, and you are not given better diagnostic criteria, it is not at all clear on what basis differential diagnoses can be made. The unstated implication, from my outsider's viewpoint, is that these patients, now said to really have something wrong with them, are not worth the cost/effort of careful diagnosis because all you can do is try to relieve symptoms.