25% M.E. Group

25% ME Group stance on exercise

https://25megroup.org/25-me-group-stance-on-exercise

https://25megroup.org/wp-content/uploads/2020/08/25-ME-Group-stance-on-exercise.pdf

We are the 25% ME Group Charity, the only charity concerned specifically with the needs of those most severely affected by myalgic encephalomyelitis (ME). We were formed 25 years ago and have a wealth of experience. As such we are generally seen as an authority on severe ME, we are active in campaigning for better diagnosis, treatment and care of people with severe ME; for example we are a stakeholder in the NICE review, we support the use of International Consensus Criteria (ICC), we undertake surveys about various aspects of severe ME, we disseminate information, etc, and we are a respected voice for people who are the most affected by ME. [1]

We are extremely concerned that some medical/care professionals and sports/exercise specialists are still recommending exercise programmes and/or graded exercise therapy (GET) to people who suffer from ME without even adding very prominent warnings about the harm that exercise can cause to ME sufferers - especially those with severe ME…

 

They sent a letter to NICE in connection with the guidelines. The text of the Facebook post:

 

Does this make it more likely there will be a further delay?

 

There won't be another delay. They can only report one delay to stakeholders.

 

https://maldon.nub.news/news/local-...-town-hall-raises-ps830-for-me-charity-207223

NHS site definition of ME/CFS , 'extreme tiredness' again belittling seriousness of illness.