Tag: NIH

CFS Advisory Committee Meets

The CFS Advisory Committee meeting included reports from federal agencies and substantive recommendations from subcommittees. But public comments were a reminder that we are running out of time.

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UK ME/CFS Biobank opens for business

Dr Charles Shepherd of the ME Association has announced that the UK’s ME/CFS Biobank is now ready to send blood samples to researchers anywhere in the world. The biobank is run by a team headed by Dr Luis Nacul at the London School of Hygiene and Tropical Medicine and forms part of the main University

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NIH's Vicky Whittemore to speak at Invest in ME conference

Invest in ME (IiME) have announced that Dr Vicky Whittemore of the US National Institutes of Health (NIH) will give keynote speeches at the charity’s biomedical research colloquium and conference in London in early June. IiME described the events as “a fantastic gathering of researchers”. The charity had approached the NIH in order to invite

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Transcript: Solve ME/CFS Interviews Dr. Avi Nath

Dr. Zaher Nahle from the Solve ME/CFS Initiative recently interviewed Dr. Avi Nath, who is leading the intramural study on ME/CFS at the NIH. The intramural study on ME/CFS at the NIH has raised some concerns in the ME/CFS community: the appointment of Dr. Walitt, who has made statements implying that he views ME/CFS as

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Communications with NIH

We wanted to be clear about our communications with NIH since there has been some conflicting information. The founders of #MEAction have never met with Dr Collins, Dr Koroshetz, Dr Nath, or anyone else on the intramural study. We have requested several times to meet with Dr Koroshetz and Dr Nath so that we could share the

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HHS publishes revised responses to CFSAC recommendations about NIH initiative

After responding negatively to most of CFSAC’s recommendations for the ME/CFS research program, the NIH has now revised many of their responses to better address CFSAC’s requests. Following the announcement of the NIH’s new ME/CFS research program, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) submitted formal recommendations to the agency about how the program should be structured. These recommendations

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Petition: Keep psychiatry out of NIH study on ME/CFS

This is the first study on ME/CFS conducted by NIH in two decades. One million patients suffer from this disease, too long neglected by both CDC and NIH. It is critical that the Principle Investigators recognize existing biomedical research on the disease, as well as the results of recently commissioned studies by the Institute of Medicine for DHHS and the P2P (Pathways to Prevention) program at NIH.

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NIH to patients, “We are your partners”

The National Institutes of Health’s (NIH’s) ‘New Deal’ for ME/CFS, particularly the intramural study, has had a very mixed reaction from the patient community. Update: NIH gives update on consulting patients, and says RFAs will happen On March 30 NIH revised it’s response to the CFSAC recommendations saying its new plans include RFAs (plural) and

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