#stopGET Campaign

After graded exercise therapy for ME some of the #MillionsMissing are missing more. Many patients report deterioration. #stopGET is an @MEActNet assoc campaign.

[#stopGET Campaign @stopGETteam]

#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

https://t.co/3WT9nn7C8C

[#stopGET Campaign @stopGETteam]

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.
https://t.co/4uN3TTLbvQ

#MedEd #SoMeDocs #medtwitter #medicalstudenttwitter
#Millionsmissing #stopGET

[#MEAction Network UK @MEActNetUK]

#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.
https://t.co/wI29w0mYux

[#stopGET Campaign @stopGETteam]

Have your say on the improvements and further possible tweaks https://t.co/QQiVBO7FqQ
#MEAction

[#stopGET Campaign @stopGETteam]

#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

[#MEAction Network UK @MEActNetUK]

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 👇🏼https://t.co/SyTh7pKzNE
#pwME #MyalgicE

[#stopGET Campaign @stopGETteam]

@TweetTipsforME https://t.co/Tc1mYYfvAH
Example of ME patient responses:

[#stopGET Campaign @stopGETteam]

“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

[Jenny Tips for ME 🥄😶‍🌫️🌈🧷 @TweetTipsforME]

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

[#stopGET Campaign @stopGETteam]

@PhysiosForME Well produced, informative video. Great to see @wellcometrust funding this type of project.

[#stopGET Campaign @stopGETteam]

#MedTwitter #physio #stopGET #MyalgicEncephalomyelitis

[Physios For ME @PhysiosForME]

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."

https://t.co/Hrq1abaraA

[#stopGET Campaign @stopGETteam]

#stopGET #patientvoice

[#MEAction Network UK @MEActNetUK]

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 👇
https://t.co/PYHZuwqSuV

[#stopGET Campaign @stopGETteam]

#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

https://t.co/3WT9nn7C8C

[Hattie Hodgson-Crome @H_Hodgson]

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

[Tom Kindlon @TomKindlon]

One patient with myalgic encephalomyelitis describes the long-term negative effects that following graded exercise therapy had on her. ☹️

https://t.co/1kzPkQFFUz

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyE #millionsmissing

[#stopGET Campaign @stopGETteam]

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

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

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."

https://t.co/SviVjsusVb

[Tom Kindlon @TomKindlon]

GET = Graded Exercise Therapy

From:
Your experience of ME services - #MEAction UK survey report

https://t.co/4wSONd6Wk1

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyE

[#stopGET Campaign @stopGETteam]

@jackiescoones @NICEComms If so, change expected 2020.

[#stopGET Campaign @stopGETteam]

@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.

[#stopGET Campaign @stopGETteam]

In hindsight only 0.4% of #pwme surveyed consider graded exercise therapy (without establishing a baseline) to be helpful advice. Only 10% would recommend graded activity increase, even after having found a sustainable level of activity to start with.

#stopGET #MyalgicE

[#stopGET Campaign @stopGETteam]

“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

[#MEAction Network UK @MEActNetUK]

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

https://t.co/vMkfG45I8v

[#stopGET Campaign @stopGETteam]

@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

[KarenLesliePhysio @karenphysiocouk]

“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

[#MEAction Network UK @MEActNetUK]

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.
https://t.co/dG7nzoxftf