Lumping ideas:
1. Accept our invitation to open dialogue through quarterly meetings with patient organization representatives to discuss CDC policies in ME/CFS research.
2. Establish monthly conference calls with a panel of other ME/CFS researchers, such as those who are members of the International Association for CFS/ME, for the purpose of creating collaborations.
3. Change the diagnostic criteria for ME/CFS so they more accurately reflect the NeuroEndocrineImmune disorder discovered in the Incline Village and Lyndonville outbreaks. Study that illness. Use the Canadian Concensus Criteria.
4. For cohorts, use patients from well-known physicians who specialize in caring for ME/CFS patients and have done so for decades. As research history shows, finding the common denominator of an emerging illness requires the cohort criteria be narrow.
5. Use your influence and resources to support the Chronic Fatigue Syndrome Advisory Committee recommendation that the federal government establish and coordinate a network of specialized care / research enters.
6. Change the name of the illness to one that reflects the serious and debilitating reality that many patients experience. Correcting the misconceptions caused by the trivializing name, "chronic fatigue syndrome," rests with the CDC.
7. Establish a proactive physician education program through seminars and curriculum in medical schools, showing the biological findings in the majority of patients with this illness.
8. Request that Congress allocate more research funding for ME/CFS to bring it in line with funding levels of other disabling diseases.
9. Abandon the psychological research (such as the childhood trauma study) and, instead, study the possible connections to infections in ME/CFS. This is certainly much more appropriate for your branch, the Chronic Viral Diseases Branch.
Under 3, combine 4, 6, and 9.
Combine 5 and 8.
Combine 1 and 2.
Add the ICD-10-CM problem.
That leaves only 5 issues (summarized below):
I) Definition (3, 4, 6, 9): Change to use of an appropriate definition with a serious name, which will result in a narrow cohort criteria, and use that to study serious biomedical issues; no more psychogenic type research. Preferably, retract all studies published with Empiric criteria (or at least change the title and internal labels to "fatigue" rather than "CFS" and "chronic fatigue syndrome") and other badly-conceived, badly-designed CDC studies.
II)
ICD-10-CM (new): it should not have two separate listings for CFS (which is actually contrary to WHO guidelines as well as being really bad for us); the listing under vague and ill-defined symptoms of CFS, not otherwise classified, should be stricken from the classification; only the listing under neurological diseases (with ME and PVFS) should be used. Even with a new case definition (including adoption of CCC) and new name, this will require correction because it can be assumed that it will take time both to adopt the changes and that it will take time to disseminate this information among physicians.
III) outreach (1 and 2): regularly dialog with ME/CFS community and the biomedical research and clinical physicians. Actually implement recommendations.
IV) Physician education (7): Establish a proactive physician education program through seminars and curriculum in medical schools, showing the biological findings in patients with this illness. Carefully sort research studies for correct use of Fukuda, Holmes, Canadian, Ramsay, or similar. Teach that studies using Oxford, or Fukuda when pre-screened for patients with no neurological or immune signs, symptoms, or lab findings, denote chronic fatigue and not ME/CFS. Teach that studies using Fukuda or Holmes still do not select for ME/CFS and will not contain 100% ME/CFS patients.
V) Funding (8 and 5): Request more funding for research consistent with other poorly-understood debilitating diseases such as Alzheimer's disease (
offer grants if they don't know what to do with it themselves); hire molecular biologists, immunologists, virologists, retrovirologists, neurologists (
the sort that work with myasthenia gravis, multiple sclerosis, epilepsy, migraine with aura, and Alzheimer's patients), cardiologists, and endocrinologists (
the sort that work with Hashimoto's Thyroiditis), as well as a pulmonologist, an oncologist, and a rheumatologist or two, to work on studying the Disease (send the psychs off the team, send James Jones off the team); support establishment of specialized care / research centers.
The first three things are things that CDC is best positioned to do and should, itself, do.
The last two things are things that need doing very badly but would be better done by Dr. Mangan, unless Dr. Unger actually does I-III with good will and does the personnel change in V (and is allowed to do all this by her bosses).
I second what Anika and Dolphin said.
Thanks so much for seeking input.
