United Kingdom News
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APPGs should collaborate on ME and Long Covid
#MEAction UK has highlighted three specific areas of overlap that could benefit from a collaborative approach by the All Party Parliamentary Groups.
Latest report shows people with ME have been failed by Scottish Government
The Scottish Government has said it must not wait to address the needs of the ME community, but its latest report indicates that this is precisely what it has done and continues to do.
UK government should add ME to vaccine priority list
#MEAction has written to the Chief Medical Officer and the Joint Committee on Vaccination and Immunisation to call for ME to be included on the vaccination priority list.
UK press team hits again with Mail Online article
#MEAction UK’s press team was instrumental in getting an excellent article published in the Daily Mail at the beginning of January. The article criticises the blanket advice of GPs to recommend exercise for long COVID patients without taking into consideration those with symptoms of ME, particularly post-exertional malaise.
Moving short film “This is ME” nominated for award – you can help it win!
Moving short film “This is ME” shares more in nine minutes than most people with ME can begin to share in words alone.
#MEAction UK response to draft ME/CFS guideline from NICE
#MEAction UK volunteers have worked to produce a robust and comprehensive response to the draft ME/CFS guideline from NICE.
New graded exercise warning on current ME/CFS guideline
#MEAction UK has just received a momentous email from the National Institute for Health and Care Excellence (NICE), advising us that they have updated the warning on the 2007 CFS/ME guideline, directing health professionals to the new draft recommendations on graded exercise therapy.
#MEAction Responds to the Observer Article Dismissing ME and Long Covid Patients as Hysterical
Last Sunday, the Observer published an article called, “Long Covid: Is This Now Me Forever?” that derides and stigmatizes both the long Covid and ME community as falling prey to a disease-mindset and catastrophic thinking. Just another hysterical women’s disease. #MEAction sent the following letter to the editor at the Observer, asking them to
Goodbye to graded exercise therapy but concerns about physical activity programmes – Community Discussion
There were significant concerns about the recommendation of a physical activity programme in the draft ME/CFS guideline, even with the caveats attached. The recommendation that a physical activity programme should be considered if patients would ‘like’ to start one, was felt to imply that there is a choice or a desire involved, rather than increased physical activity being impossible for many.
“Loopholes need closing” – ME/CFS draft guideline community discussion
At our first community call on the draft ME/CFS guideline from NICE, training in all areas of the guideline was seen as key if it is to have an impact on the health and social care professionals implementing these recommendations.
U-Turn on ME/CFS Guidelines Could Help Long Covid Patients – Press Release
Harmful graded exercise therapy for people with ME has been dropped in a new draft ME/CFS guideline from the National Institute for Health and Care Excellence (NICE).
Long COVID Patients Warned of Damaging Exercise Programme
#MEAction UK is highlighting the links between “Long Covid” and ME in the press. In particular, we want people at risk to know about the danger of exercise if they have post-exertional malaise.