#stopGET Campaign @stopGETteam
After graded exercise therapy for ME some of the #MillionsMissing are missing more. Many patients report deterioration. #stopGET is an @MEActNet assoc campaign. meaction.net global Joined September 2016-
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#MEAction UK has sent out a press release to every major news outlet in the UK, emphasising the removal of graded exercise therapy from @NICEComms draft ME/CFS guideline. Read our press release below, or jump straight to reading the draft guideline. meaction.net/2020/11/10/u-t…
Have your say on the improvements and further possible tweaks meaction.net/2020/10/22/6-w… #MEAction
#GETisGONE! We campaigned and the NICE committee listened! Thank you to all the hundreds of #pwme and allies involved in this struggle to get #patientvoice heard. It has been a long struggle but this is a big turning point. #NICEguidelines #MyalgicEncephalomyelitis
GET is gone!! #GETLost "DO NOT offer people with ME/CFS: any programme based on fixed incremental increases in physical activity or exercise, for example GRADED EXERCISE THERAPY" ( @NICEComms draft guideline) Read the draft guideline 👇🏼meaction.net/nice #pwME #MyalgicE
@TweetTipsforME x.com/stopgetteam/st… Example of ME patient responses:
NICE have issued an interim statement clarifying that graded exercise therapy is not intended for #LongCovid and is currently under review for #MyalgicE The majority of #pwme report deterioration on GET in patient surveys #NICEguidelines #covid1in20 #coronavirusuk #stopGET
Recommendations for graded exercise therapy are seriously out of date for #MyalgicEncephalomyelitis (IMHO they were already outdated and inappropriate back in 2007!) But they were never intended for #LongCovid nice.org.uk/guidance/gid-n… It is safer to be cautious about activity
@PhysiosForME Well produced, informative video. Great to see @wellcometrust funding this type of project.
#MedTwitter #physio #stopGET #MyalgicEncephalomyelitis
Excellent video on why Graded Exercise Therapy is NOT a recommended treatment for people with ME "Deconditioning does not cause the problem and exercise won't solve it...Is deconditioning a problem? Yes. Can you fix it? No." dialogues-mecfs.co.uk/films/graded-e…
NICE continues to recommend graded exercise therapy in their existing ME/CFS guidelines whilst under review, despite delay Despite our campaign they allow this to stand with no interim warning of harms. Read more about #MEAction UK's work re NICE 👇 meaction.net/2020/06/17/nic…
#FirstDoNoHarm should be the primary aim of medical treatment Graded exercise therapy (GET) harms more people than it helps The #MillionsMissing demand an end to GET as treatment for ME RT & help us to stop this #SoMeDocs #MedTwitter #MedEd #stopGET x.com/stopGETteam/st…
Please see this article to understand the recent, large, UK ME patient survey. We need your help to raise awareness this issue in order to stop further deterioration. x.com/meactnetuk/sta… #MedEd #SoMeDocs #medtwitter #medicalstudenttwitter #Millionsmissing #stopGET
I got a virus, I didn't die, but I never recovered... Now more than ever, we need to stop recommending harmful treatment programmes, and start researching the biomedical causes of an illness that causes countless people so much harm #MillionsMissing #pwme #MECFS
I GOT A VIRUS, I DIDN’T DIE, BUT I NEVER RECOVERED. As a growing number of experts warn of a rise in ME following the #COVID19 pandemic, the need for treatments that help, not harm, is ever stronger. We are the #MillionsMissing & we need change now. A thread. #pwme
One patient with myalgic encephalomyelitis describes the long-term negative effects that following graded exercise therapy had on her. ☹️ heraldscotland.com/news/18437238.… #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyE #millionsmissing
New YouTube video re the perils of graded exercise in ME 🤞🏻the new #NICEguidelines will improve this situation but in the meantime it’s important to publicise the dangers of GET widely, especially in the context of post-COVID patients being at risk of #MyalgicE #stopGET #pwme
YouTube video on the harms of graded exercise therapy for #MECFS in the #PACEtrial: “"The whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane." youtube.com/watch?v=arsj2h…
GET = Graded Exercise Therapy From: Your experience of ME services - #MEAction UK survey report meaction.net/2019/10/17/me-… #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyE
@jackiescoones @NICEComms If so, change expected 2020.
@jackiescoones @NICEComms To be fair this survey is in response to a request for input from NICE, as part of the ME and CFS guidelines review process. Hopefully they’ll listen this time.
“Almost 9 out of 10 respondents deteriorated having followed this advice [to increase activity], compared to less than 1 in 10 who were told to rest. Healthcare professional’s initial advice had a significant effect on patient outcomes” Really important for new #pwme #stopGET
SURVEY: THE RESULTS ARE IN! Thread: RT & share ME Services in the UK are not fit for purpose. This Report analyses a survey conducted by #MEAction UK in response to a call for evidence from NICE in August 2019. Read all about it 👇 #MyalgicE #pwME meaction.net/2019/10/17/me-…
@MEActNetUK “Almost 9 out of 10 respondents deteriorated having followed this advice [to increase activity], compared to less than 1 in 10 who were told to rest. Healthcare professional’s initial advice had a significant effect on patient outcomes” Really important for new #pwme #stopGET
“Exercise deteriorates physical performance and increases lactate during exercise in patients with ME/CFS while it lowers in healthy subjects” #physio need to know this @thecsp #exercise #ME
Norwegian 2-Day #MECFS Exercise Study Adds Crucial Factor to Exercise Intolerance Findings healthrising.org/blog/2019/10/1…
Your experience of #MECFS services - Take the survey by #MEAction UK @NICEcomms are updating their guidelines on #MyalgicE & want more evidence. The survey asks about advice you've received, and what advice you would have found most helpful in hindsight. meaction.net/2019/09/23/you…
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308 Followers 147 Following I have severe #Myalgic #Encephalomyelitis, am one of the #MillionsMissing, disappeared 'n invisible. We need awareness, biomedical research, hope 4 #pwme. NOW!
MECFSCanada @MECFSCanada
464 Followers 593 Following Promoting Canadian patients, caregivers, physicians, researchers for a better understanding ME/CFS. Myalgic Encephalomyelitis - Chronic Fatigue Syndrome #MECFS
Hope 4 ME & Fibro NI @hope4mefibroni
1K Followers 968 Following All volunteer run patient charity, providing awareness/education events & campaigning for NHS ME Consultant Led services in NI-since 2011 #MEcfs #Fibromyalgia
Revolution Breeze @SueJonesSays
10K Followers 10K Following Public interest issues, policy, human rights, democracy, social sciences. Researcher, writer: Politics & Insights (home site). Progressive, anti-neoliberal
ME Advocacy Network A... @MEAdvNetAu
1K Followers 246 Following We fight for health equality for Australians with ME/CFS. We’re an independent group, not affiliated with any other group. Formerly #MEAction Network Australia.
Jane Young @theyoungjane
2K Followers 959 Following Disabled, semi-retired. Background in local Government & voluntary sector, especially disability equality, access and social care
David Gillon @WTBDavidG
2K Followers 1K Following Writer. Disability rights activist, campaigning against the scapegoating of disabled people. Also at FBook as David.W.Gillon and Dreamwidth as DavidGillon
Where's the Benefit? @wheresbenefit
2K Followers 455 Following Campaigning against the government's distressing war on disabled benefit claimants.
BendyGirl @BendyGirl
9K Followers 4K Following Former benefit scrounger now squeezed middle slummy mummy & occasional social justice warrior.
Sarah 👩🦼 @WolfydocS
2K Followers 1K Following Disability comments/news. Ex mathematician watching recent AI advances with fascination. Love gaming and wheelchair walks with my dog, but mostly housebound.
#chronicblogs @ChronicBlogs
4K Followers 3K Following Specialist blog outreach+supportive blog community. Connecting bloggers who write about chronic health issues with brands (UK+US)Run by @jennafarmerukTrends for United States
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