The #MEAction community has dug in deep this fall to undertake the incredibly important work – and heavy lifting – of ensuring that our health agencies create guidelines that will improve the lives of people with ME. We are holding our government officials accountable for their decisions that affect our daily lives. We continue to
The end of September was a whirlwind! Between the CDC’s website work, the CDC’s awarding of a sole contract, the planning sessions for the NIH meeting, and the Stanford symposium, there wasn’t much time to devote to breaking down the science. If you’d like to see a quick run-down of what’s been going on lately
On Thursday, 8th November, the Scottish Parliament Public Petitions Committee met to review evidence submitted in support of various petitions, including #MEAction’s petition: PE01690 Review Treatment of People with ME in Scotland. Submitted by Emma Shorter, on behalf of #MEAction Scotland, in June this year, the petition called on the Scottish Parliament to urge the
What’s been happening at NICE? The National Institute of Clinical Excellence (NICE) is re-writing its guidelines on ME/CFS. Health professionals in the UK base their care of people with ME on these guidelines, and they are influential globally. Since their inception, patients and their families have found the current guidelines detrimental to care. Last week,
Carol Monaghan MP presented her application for a debate on ME to the Backbench Business Committee on Tuesday October 30th supported by Nicky Morgan MP, Steve Pound MP and Kelvin Hopkins MP. The application was also supported by over 30 other MPs from across the political divide at a crucial time for people with ME
It appears that Cochrane will NOT temporarily remove a review from its database that claims exercise therapy is effective for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME), as a report in Reuters had indicated last week. Instead, Cochrane editors have added an editor’s note (that is all but invisible unless you really go searching for it)
After many, many months of writing, editing and revising, #MEAction Scotland is finally ready to launch its manifesto! Thank you to all the volunteers and members of the community who have added their ideas and thoughts to shape this document. The purpose of this document is to highlight those areas where we feel our lobbying
Cochrane has temporarily removed a review from its database that claims exercise therapy is effective for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME). Cochrane is a database of medical reviews and meta-analyses, which medical providers around the world rely on for diagnosing and treating disease. Their review, Exercise Therapy for Chronic Fatigue Syndrome, covers
N.b. We wrote this article prior to more of the appointments for the guideline development committee being made. Some of these appointments are inappropriate and we are working on a response to that. There are still some committee vacancies that have yet to be filled. We’ll update everyone as soon as possible. In the meantime
A productive and extremely positive meeting on the current developments on ME in the UK took place on Monday, 22nd October in the UK Parliament. Carol Monaghan, MP, and David Tuller, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health, University of California, met at
