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PACE: Objections, Challenges & Beliefs

I am writing this piece to offer Dorothy Bishop & Stephan Lewandowsky some patient perspective on their joint piece in Nature : “Research integrity: Don’t let transparency damage science”. Specifically, I would like to add some context to this line in particular:- “When people object to science because it challenges their beliefs or jeopardizes their interests, they are rarely committed to informed debate.”

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We All Have CFS, Like It Or Not

I’ve been inspired to write by Lucibee’s recent blogpost about the PACE trial (, She raises an important point about how patients can sometimes be received for reporting any sort of improvement from CBT or GET.

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10,000 signatures for more research funding in the UK!

Calling all British M.E. sufferers & allies, Inspired by our American friends and the progress that has been made over in the States with government funding and new research projects, we think it’s time for patients to put the pressure on the UK parliament. We are asking for an increase in budget to fund bio-medical research as well as the formation of a work group to represent the issues facing our community in government.

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Everest Challenge for ME Research UK

A team of climbers are taking part in a gruelling charity event with the aim of scaling the height of Everest (8,848m) in a single day, raising funds for much-needed research into ME/CFS. As the climbing wall is only 12.5m in height, the team will have to climb it over 708 times to reach their goal and it’s expected to take them between 6 and 9 hours. The Everest Challenge will be a real test of the team’s commitment, strength and endurance.

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

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.

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Announcing MEpedia: a knowledge base for ME science and history

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?

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Study proposes new name, definition and biomarkers

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.

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Complain about NIH's Claims on CBT and GET

Medline Plus, NIH’s web site for patients, just published an article from health news distributor Healthday, based on the recent, discredited U.K. PACE study. The new article states that “cognitive behavioral therapy and graded exercise therapy are among the best available treatments for extended relief” of ME/CFS. Fortunately, if you want to file a complaint about this article, it’s super easy.

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