Category: United States

NIH's intramural study protocol raises many questions

Recently, the US National Institutes of Health (NIH) announced its protocol for a new intramural study examining post-infectious fatigue. The community has been eagerly awaiting the publication of the protocol since the October announcement that the NIH was finally making ME/CFS a priority. Numerous patients and organizations have attempted to initiate a dialogue with the

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Solve ME/CFS Initiative Grades HHS on CFSAC Response

Solve ME/CFS Initiative Grades HHS on CFSAC Response The Solve ME/CFS Initiative has created a report card for HHS’ response to the recommendations made by the Chronic Fatigue Syndrome Advisory Committee (CFSAC) after its August meeting. The grades the organization gave on the HHS response to the 13 CFSAC recommendations range from A- (one) to F (four).

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Over twenty US organizations and advocates announce new working group

Help us build a powerful, participatory voice for change in Washington #MEAction is thrilled to announce that we are coming together with over twenty organizations, bloggers, and independent advocates to form a US Action Working Group. We aim to create a powerful, participatory voice for change in Congress, across our federal agencies, and in medicine. Read the

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NIH considering Ampligen and Rituximab trials

Basic research and drug trials under discussion at the NIH In October, the National Institutes of Health (NIH) announced it was stepping up its commitment to ME/CFS and would be expanding its intramural and extramural research programs. Francis Collins, director of the NIH, told Science that his colleagues were “determined to move pretty fast on this.”

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Tell Congress to Increase ME Funding

Have you always wanted to email your Congressmen/ women about ME/CFS but don’t know what to say? Or maybe you’re too sick to draft a letter? We’ve made it easy! Just go to the listed website and copy and paste the sample letter!

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What the CDC needs to know about the $5.4 million funding restoration

In a budget agreement announced early Wednesday morning, funding for the US Centers for Disease Control’s (CDC) ME/CFS program was restored to the full $5.4 million. The omnibus budget bill is expected to pass both houses on Friday. CDC funding for ME/CFS had previously been cut to $0 in the proposed 2016 budget. [pullquote align=”right” cite=”” link=”” color=”” class=””

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Study shows Epstein-Barr virus can infect human neurons

A new study has found that two human herpesviruses: Epstein-Barr virus (EBV) and Kaposi’s sarcoma-associated herpesvirus (KSHV), previously only proven to infect B cells, can also infect neurons. For years there has been indirect evidence that gammaherpesviruses like EBV and KSHV could infect nervous tissue. For example, EBV viruses have been found in the cerebrospinal fluid and brain tissue

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We Succeeded in Removing NIH CBT and GET Advice

NIH has now removed its Medline/ National Library of Medicine (NLM) article promoting CBT and GET for ME/CFS treatment. It was taken down just DAYS after we began filing complaints. I received a response from NLM explaining that they “removed the article since it did not provide a balanced view on the topic.” Although the

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