25% M.E. Group

[Eagles]

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…

 

[Wyva]

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

Please note. Important. Email letter from 25% ME Group https://25megroup.org/memberships. I’ve been given permission to share.
(and other stakeholders - see bottom of the email) to NICE

From: 25% Me Group Enquiry <enquiry@25megroup.org>
Sent: 07 June 2021 17:02
To: cfsme@nice.org <cfsme@nice.org>
Subject: ME/CFS Guideline in Development [NG10091]

Dear NICE

In view of the further evidence being obtained in respect of this guideline in development and further analysis consequent on same, we consider it appropriate that there should be a further opportunity for stakeholders to comment on any revisions to the draft guideline that may result. We are therefore requesting that a draft be circulated for comment should changes result from this further consideration of evidence.

This request is being lodged on behalf of the following eight stakeholder organisations:

The 25% ME Group enquiry@25megroup.org
Blue Ribbon for the Awareness of ME (BRAME) brameinfo@yahoo.co.uk
Invest in ME Research info@investinme.org
LocalME
ME-Letterforce
reMEmber - The Chronic Fatigue Society me_cfs@hotmail.com
The Young ME Sufferers (TYMES) Trust https://www.tymestrust.org/contactus.htm
Welsh Association of ME & CFS Support (WAMES) mailto:enquiries@wames.org.uk

regards,
Simon Lawrence
chairperson

The 25% ME Group

(I don’t know why it shows Tymes Trust below and not 25% ME Group, but Tymes Trust were a signatory
- Jan)

 

[Ariel]

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

 

[InitialConditions]

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.

 

[Sly Saint]

Maldon Town Hall hosted a 'Charity Showstopper Dance' evening on Saturday (October 7) in aid of those affected by severe ME, raising £830.
Myalgic Encephalomyelitis (ME), or chronic fatigue syndrome, can cause extreme tiredness among those affected.

The Motown Chics entertained guests with a performance of hits from the 1960s. Guests included Maldon Town Mayor Councillor Andrew Lay and Mayoress Karen Lay.

It was all to raise funds for The 25% M.E. Group, a charity which helps those suffering from severe ME, who are bed-bound or stuck in their homes. There is currently no known cure for the disease.

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.