The ME Association's continued support of the Sussex ME Society

Wow! Can any other facebookers check that? Not to doubt you, Andy. Just to double check it's not visible to other users.

That kind of behaviour by them would certainly undermine faith in them fairly fast.

 

Perhaps they fear that a significant part of their membership believes in such remedies. I think they always did.

 

AfME tactic right there! Recommend what they think is popular, rather than what's actually effective.

Never mind people spend money they don't have, may make themselves worse.....

 

Yeah, two people who aren't Facebook friends with me say they can't see it so it seems fairly certain. It's something the MEA can reverse, should they want, but it's certainly pushing me away from renewing my membership with them.

 

An argument could be made that we are currently seeing progress with AfME, but are seeing signs of the MEA going backwards, at least in my opinion.

 

I find it impossible to have confidence in either organisation since their respective failures to intervene over the Forward ME website publication of edited material as a copy of an original letter.

 

Hopefully that’s what happened. I will be awaiting the apology.

 

I don't think Colin Barton understands or cares about the harm he does. The MEA should make it clear that he is untrustworthy when they report on something he has been doing/saying.

 

Charles Shepherd has given this statement as a comment to MEA's Facebook post.
I am surprised he doesn't seem to understand why posts like this are upsetting.



Comment from Dr Charles Shepherd:

As we have stated on MEA Facebook on numerous occasions we normally publish information from medical papers, copies of news items, magazine articles, and any other items on ME/CFS that have been placed in the public domain as soon as we receive them

We believe that people with ME/CFS have a right to see what is being written about them, or this disease, even if we do not agree with the content

I aim to provide comment, where necessary, as soon as I am able to do so

And to state, as some people are doing, that I/we do not provide comment on items that are inaccurate or misleading or contain statements that the MEA disagrees with is just not true

This week I have been at the CMRC conference in Bristol from Tuesday afternoon till Thursday evening - I arrived home at 9pm

On return from the conference I was dealing with MEA work till shortly after midnight on Thursday

On Friday I worked from approx 9am to 8pm on MEA work - all in my voluntary capacity

This morning (Saturday) I have been dealing with family matters but will now be spending several hours on the research we are funding this afternoon

So my comments here have had to wait for a few hours They are set out below:

1 The MEA position on CBT, GET and the Lightning Process is very clear. If anyone is not sure where we stand please see our report on CBT and GET, our submission to NICE calling for GET to be removed from the current NICE guideline, and our complaints to the ASA regarding clams for success being made by Lightning Process Practitioners

2 We do not recommnd or endorse CBT, GET or the Lightning Process as treatments for ME/CFS

3 There is a wide spectrum of severity associated with ME/CFS and approaches to activity and energy management have to reflect this

4 For people with mild or moderate ME/CFS, who are able to increase their activity levels a variety of approaches can be helpful, including the possible use of yoga. On a personal basis I find swimming in a warm pool and walking to be perfectly appropriate for my level of disability - provided this is done on a flexible basis

5 Where activity levels can be safely and flexibly increased, anecdotal evidenve indicates that gentle yoga, where this is involves tuition from a yoga teacher who understnds ME/CFS, can be helpful for some people with ME/CFS

6 For people with mild or moderate ME/CFS, a significant proprtion will make some degree of improvement over the course of time. Complete and persisting recovery from ME/CFS does sometimes occur and is more likely to occur in children and young people. But there is no evidence that any specific form of management - orthodox or alternative - will lead to complete recovery. And that includes yoga

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

I can see you posts now, and we are not Facebook friends.

 

Would be nice if he provided a reference for this. Does anybody know if this is supported by any evidence?

 

Promoting puff pieces about Colin Barton, who is presented as a representative of patients, is quite different from posting dodgy research articles from White/Crawley/etc.

 

Hi I think i need to add this; me and my mum have had to beg MEA to share things about Merryn if we had done something (one media piece was our BBC Radio 5 Live interview, they didn’t put anything on about it till way after even though it had been arranged by their PR person) but then they go and share stuff like this? Often they would either ignore what we sent or share it before immediately sharing tons of other stuff to do with CBT and GET etc. Makes you wonder what their thinking is with it all.

 

No one doubts that Charles Shepherd has a heavy workload or that he has done a great deal of good over the years.

However, I worry that (apart from Russell Fleming) he appears to be all alone at the MEA. If they have a person putting this stuff on their Facebook, surely this person is also capable of posting a nice big caveat along with the offending item.

ME patients are ill, they may not read through to the fine print to discover that actually, the MEA doesn't endorse this.

Relatives, friends and maybe even employers certainly won't either.

The MEA is unintentionally advertising this stuff by not posting a caveat along with it.

Edited - typos

 

MEA has a history of sitting on the fence and taking their time to get their act together and do their job, usually once patients have led the way.

 

In the absence of any specific comment, the republication of the material gives the appearance of being an endorsement by the MEA. This is not about CS and his very real commitments. This is about the authority of someone to post potentially controversial material in the name of the MEA. Clearer guidelines need to be issued.

 

I'm not sure I understand what you mean with this. Is it that you aren't objecting to the MEA posting it because you don't consider it as bad as a BPS research paper? I would argue that, in many ways, it's worse, especially where we are with the NICE guidelines. BPS papers can be shot down by looking at their scientific methods, yet here we have one patient organization supporting exercise therapy and the Lightning Process, and a larger, more influential, patient organization, who have actually previously argued against both therapies, have now implicitly endorsed the article, and therapies contained within, by sharing it.

It weakens any argument the MEA makes against physical therapy and the Lightning Process, it's a politically silly act to take.

 

I meant that it was worse. There's more good reason to inform patients of junk-science, and patients are more likely to be aware of problems and read such things sceptically. I think a puff piece about Colin Barton is of less interest and more likely to be misleading. Sorry - I now realise my first post wasn't clear.