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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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#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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#MEAction Scotland

#MEAction Scotland Petition: Achievements and Agenda-setting

#MEAction Scotland submitted their petition to the Scottish Parliament in May 2018. In June, Emma Shorter, #MEAction Scotland’s volunteer leading the petition, made a powerful speech to the Petitions Committee describing the desperate need for support for people with ME in Scotland.

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#MEAction

ME/CFS and Long COVID: What’s the Connection?

#MEAction hosted a seminar for post-COVID-19 “long haulers” on Friday, August 7, to learn more about ME/CFS as a potential diagnosis after viral infection, in partnership with Body Politic and the COVID-19 Working Group New York. Watch the seminar now!

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#MEAction

RESOURCES FOR COVID-19 “LONG-HAULERS” FROM THE ME/CFS COMMUNITY

A growing number of people report persistent symptoms long after being infected with the SARS-CoV-2 virus. The “long-haulers,” a name coined for long-term COVID-19 patients, experience ongoing fatigue, headaches, shortness of breath, muscle pain, sleep disturbances, cognitive impairments, intermittent fevers, and more.

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Actions
#MEAction

Take action: graded exercise harming people with ME and COVID long haulers

#MEAction UK has sent an open letter to Matt Hancock asking him to recognise the harm caused by graded exercise therapy. We are calling on him to ensure all advice for people with ME, and those at risk of developing ME post-COVID, warns of the harm from graded exercise therapy. Join us by asking your MP to write to Matt Hancock too and telling them about your experience of ME.

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Advocacy
#MEAction

Graded exercise therapy not recommended for post-COVID fatigue, say NICE

The National Institute for Health and Care Excellence (NICE) have released a document entitled “interim findings”, stating that the recommendation of graded exercise therapy for mild and moderate ME/CFS should not apply to people with fatigue following COVID-19. They note that the existing guideline was published in 2007, many years before the pandemic, and that they are aware of concerns around graded exercise therapy.

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£3.2million granted for largest ME/CFS DNA study ever

Funding for the world’s largest genetic study into myalgic encephalomyelitis (ME), led by a partnership of patients and scientists, has been announced. Thanks to £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, the ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.

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