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Study shows Epstein-Barr virus can infect human neurons

December 10, 2015 1 Comment

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

Norwegian researchers ask 'What exactly is M.E.?'

December 10, 2015 11 Comments

Norwegian researchers say patients with ME have more severe symptoms than those with chronic fatigue syndrome, but better mental health.

Charles Shepherd: It's time for doctors to apologise to ME patients

December 7, 2015 4 Comments

[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””] “I left medical school believing that ME was not a real disease and I would probably never see a case. I was wrong” [/pullquote] In this excellent piece in Monday’s Daily Telegraph, Dr. Charles Shepherd describes the history of ME’s neglect and says it’s time for doctors

Study finds evidence of downregulated immune system in ME/CFS patients

December 7, 2015 No Comments

Researchers analysed 100 blood samples from the Solve ME/CFS Biobank of patients and results included finding 3 clusters. The cluster of Interleukin-16 (IL-16), IL-7 and VEGF-A was both significantly downregulated and tightly correlated with each other. IL-16 is a pro-inflammatory cytokine and the reduction shown may indicate immunodeficiency. IL-7 is indispensable for the creation and survival of immune cells (T cells, B cells, NK cells). VEGF-A: stimulates new blood vessel and muscle growth.

Announcing MEpedia: a knowledge base for ME science and history

December 6, 2015 40 Comments

What if we could take all of the information we have learned from all of those years of hundreds of people reading and writing about thousands of news and research articles across all of our forums and blogs and Facebook pages, and create one massive, interlinked, and structured knowledge base?

James Coyne to PLOS One: Don’t let PACE make a mockery of data sharing

December 6, 2015 2 Comments

Professor James Coyne yesterday posted online his letter to PLOS One complaining about the PACE authors’ failure to provide him with data from a paper published in the journal. Coyne’s letter was premature because he had been misinformed that he would receive a response within 20 days rather than 20 working days. However, it indicated

Study proposes new name, definition and biomarkers

December 5, 2015 18 Comments

Researchers from Australia’s Deakin University have proposed a new name for ME/CFS: Neuro-Inflammatory and Oxidative Fatigue. An Australian university is suggesting a new name to replace ME/CFS. They studied 196 subjects with Chronic Fatigue Syndrome (CDC criteria) and 83 with chronic fatigue and found two distinct groups.

We Succeeded in Removing NIH CBT and GET Advice

December 3, 2015 16 Comments

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

Debunking the myth of the militant minority

December 3, 2015 1 Comment

In the British media, ME activists who have opposed cognitive behavioral therapy (CBT) and graded exercise therapy (GET) are often been portrayed as an unreasonable, militant “minority.” Members of the #MEAction Science and Treatment Policy and Media Working Groups have drafted this fact sheet to explain the real reasons why ME patients are opposed to CBT and

James Coyne declares “moral equivalent of war” on PACE

November 18, 2015 10 Comments

James Coyne gives a public talk on PACE Trial In a public talk in Edinburgh on Monday, psychologist Professor James Coyne declared the “moral equivalent of war” on the practices and assumptions that, he said, have allowed the “bad science” of the PACE trial to go unchallenged by scientists and the media. The authors of

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