ME Association Statement on Exercise in ME/CFS and Long Covid, April 2021

How would a person contact them and ask them to do so? Is this UK or USA? I’m in the USA, so it would or at least might be meddling if I were to write to UK organization. On the other hand it seems that whoever wrote this has never had this disease and is short of a clue.

 

I have to admit I am worried because I know Dr Shepherd is part of the NICE guidelines committee, and it worries me if even our own charities and spokespeople are not getting this aspect right. I know the guidelines are a huge improvement already but there are gaps for CBT & GET lite to come in, for everything that has already been happening to continue. I’ve seen very similar posts from the ME association / Dr Charles Sherpherd before, like on this thread which I commented on, basically the same topic and issues as this:SCOPE : Q&A about chronic fatigue or Myalgic Encephalomyelitis (ME/CFS) with Dr Charles Shepherd. That was nearly 2 years ago, and I don’t think a lot has changed.

 

Dr Shepherd is an ME sufferer, a GP and Medical Advisor to the British MEA, who, despite the obvious concerns about this statement, is usually spot on. He is someone I have a lot of respect for. The MEA does a lot of good work and currently is very active in relation to getting people with ME prioritised for the Covid vaccine here in the UK. Also he played a role in getting the NICE ME guidelines reviewed, rather than the old ones just being readopted on the nod as initially looked like happening.

He is normally very open to debate about issues in general, and usually responds constructively, for example recently when their social media people have shared some potentially controversial material without any disclaimer or warning. I find him easy to disagree with on social media and he usually reads carefully what I have said when I have disagreed with him.

Dr Shepherd and the MEA can be less confrontational that some would want them to be and they are committed to working for change within the system.

Dr Shepherd does have an interest in the use of gentle exercise in ME such as yoga which I have reservations about, however I think it would be very useful for us to share our concerns with him and/or Russell.

[parts rewritten for clarity]

 

That really hasn't been my experience lol. But perhaps things have changed?

For example I'm remembering the time a couple of years ago where a Very Severe ME patient was trying to explain that something that the MEA were saying was harmful, and CS told her she should start her own charity if she didn't like the MEA's approach.

 

Amongst the Severe ME community in the UK it is pretty much common knowledge that the MEA can't be relied upon to have our (severe patients') backs. It would be nice if that has changed though.

Y'all remember the thread in here where an MEA person was defending statements they'd made about needing to get out of bed?