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

[Susan K]

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 ?

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]

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.

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.

https://www.ninds.nih.gov/About-NIN...NINDS-2021-Congressional-Budget-Justification