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#MEAction

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.

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Advocacy
Sian Leary

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.

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Doctor holds stethoscope bell with the Finnish flag. Healthcare in Finland
Advocacy
Millions Missing Finland

Advocacy Update from Finland

1. “Good practise” guidelines for ME/CFSThe Finnish Medical Society Duodecim published in November a draft for new guidelines for

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#MEAction

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.

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#MEAction

Meet the Volunteers: Karima and Pam

It was brilliant to find people who not only understood life with ME but were fighting to make it better. I soon realised there was a lot of work happening all year round, far beyond #MillionsMissing, and I’ve been helping where I can ever since.

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Actions
#MEAction

Sian: Stop. Rest. Pace.

At age 16 I got a virus. Back then I did the right thing: Stop. Rest. Pace. I recovered. At age 19 I got a virus. My GP told me not to stop. Not to rest. Not to pace. 8 years on I have not recovered.

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#MEAction

Meet the Volunteers: Paul and CJ

I look forward to our weekly office hour video call as this can be my only interaction with others outside of my family. It’s also the only meeting I’ve done where it’s still ok if you’re in your bed!

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United Kingdom
#MEAction

#MEAction UK’s membership of Forward-ME

#MEAction UK will continue to collaborate where we can be more effective together. We believe that each ME charity and patient organisation in the UK plays a vital role in working towards common goals.

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