News from NIH: ME/CFS Webinar - October 17, 2019

Susan K · Dec 16, 2019

Simon M said: ↑

I think Koroshetz is referring to something rather different. The key point is that here are people who meet the criteria for me/cfs, appear to have me/cfs, but deep exclusionary diagnosis during a week-long in-patient admission at what is probably the best diagnostic facility in the world (the NIH clinical centre at Bethedsa) showed that they have other disorders that present as mecfs. I think Koroshetz was implying we might be able to learn from this e.g do they have some shared pathophysiology with mecfs ?
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Did anyone who heard or read this transcript get an idea of what percentage of these newly diagnosed (<5 years) pwme were found to have an active infectious agent or an autoimmune disease?
Maybe this is what people are saying above - that we don't know what percentage.

I go to a doc in an infectious disease practice at MGH. ANA and one or two autoantibodies have been tested for, 3 HHV species (PCR & serology), several bacterial species (serology). It's supposed to be (one of) the best hospital in the world, but this isn't really comprehensive.

Sly Saint · Feb 12, 2020

NINDS 2021 Congressional Budget Justification

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): Researchers do not yet understand the causes of ME/CFS, and diagnostic tests and treatments are not available. Along with the National Institute of Allergy and Infectious Diseases (NIAID) and other NIH Institutes and Centers, NINDS supports ME/CFSnet, a network of collaborative research centers that are applying innovative approaches to study disease mechanisms and engaging the ME/CFS patient and advocacy community in their programs. NINDS will support new funding opportunities for ME/CFS research, and a working group of the National Advisory Neurological Disorders and Stroke (NANDS) Council has outlined additional opportunities to expand research on this complex disease.
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NINDS clinical research benefits from the NIH Clinical Center, a hospital devoted exclusively to clinical investigation. NINDS studies are underway on ME/CFS, Parkinson’s disease, epilepsy, multiple sclerosis, dystonia, brain tumors, neuropathies, and several other rare and more common diseases, including early stage clinical trials using drugs, brain stimulation, and gene therapy.
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https://www.ninds.nih.gov/About-NIN...NINDS-2021-Congressional-Budget-Justification

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News from NIH: ME/CFS Webinar - October 17, 2019

Susan K Established Member

Sly Saint Senior Member (Voting Rights)

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News from NIH: ME/CFS Webinar - October 17, 2019

Susan K Established Member

Sly Saint Senior Member (Voting Rights)

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