Some questions that CDC did not answer -
CDC did not answer these questions – among many others:
Question for Dr. Bateman – from Gabby Klein
You were an author of the 2011 International Consensus Criteria (ICC) which recommended removing CFS from ME. The ICC states the following: “Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric”.
You were an author of the IOM criteria as well which stated regarding coding: “A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Revision (ICD-10), that is not linked to “chronic fatigue” or “neurasthenia.”
Since the IOM report did not ask to replace the WHO classification of ME, do you, therefore, agree that the IOM criteria do not define the disease Myalgic Encephalomyelitis (ME)?
Question for Dr. Bateman – from Colleen Steckel
The IOM panel was charged by its sponsor, HHS, to ”recommend clinical diagnostic criteria that would address the needs of healthcare providers, patients, and their caregivers.” In addition, in an interview with Phoenix Rising regarding the IOM criteria, Dr. Bateman stated: “SEID criteria are intended for current use, for doctors to do better at making the diagnosis in a clinical setting. There was no discussion of anything but using them for this purpose.”
Yet, NIH is currently recommending the use of the IOM criteria for their new ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) competitive consortium grants. Can you explain why new clinical criteria will now be used for research?
The expert criteria ICC would ensure the disease myalgic encephalomyelitis would be the focus of any studies.
Question for Dr. Unger – from Colleen Steckel
Are there any plans to address the concerns raised by MEadvocacy.org in their recent blog labeled “CDC’s Website Revision is No Reason for Celebration”?
Patients continue to be told by doctors that this is just a fatigue illness and refuse to look into immunological, cardiology, and neurological issues. Patients continue to fend for themselves with little care from mainstream doctors. This continues to lead to despair and suicide within the community. The CDC needs to do much more in order to change this reality.
Questions to Dr. Unger – from Eileen Holderman
What are the official case definitions for ME that CDC endorses for research and clinical?
As former CFSAC member and Chair of Subcommittee for CDC Website Review, when will CDC take down Toolkit and Resource Guide from the CDC website Stacks?
Questions from Guido Den Broeder
(1) Will you please once more distinguish between ME and CFS, as you did before?
Myalgic encephalomyelitis (at G93.3 in the ICD-10) is a specific post-viral brain disorder. Much is known about its causes, diagnostics, and treatment.
Chronic Fatigue Syndrome (R53.82 in the ICD-10-CM) is a term for unexplained fatigue and malaise. It is not a disease. In clinical practice, patients with a variety of diseases start out with a diagnosis of CFS, even though this is not a clinical diagnosis.
(2) What are you going to do to prevent ME?
Will Coxsackie B be added to polio vaccinations?
Are you going to follow mononucleosis patients and test their immune system for post-mono abnormalities?
(3) What are you going to do to reduce the clinical use of the CFS label?
Will you increase awareness among physicians of diseases such as ME, EDS, Lyme, Hashimoto, etc.?
Are you going to promote the clinical use of the SEID label as defined by the IOM?