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

Andy

Andy

Retired committee member
I'm sure the MEA would claim that they are being a neutral broker of information that PwME might find interesting but personally I'm disappointed that they continue to aid a group that, to my knowledge, still supports PACE and has close ties to BACME.

'Thousands of people in Sussex suffering from the chronic long-term illness ME receive vital support from a Brighton-based group – and its yoga classes have proved a huge success.'
#MECFS #LocalCharities #LocalSupportGroups #Yoga #SussexMESociety #ColinBarton
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Andy said:
I'm sure the MEA would claim that they are being a neutral broker of information that PwME might find interesting but personally I'm disappointed that they continue to aid a group that, to my knowledge, still supports PACE and has close ties to BACME.


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Agreed this should at least have been posted with a comment on MEAs own position on LP. It is possible that it wasn’t picked up as it is in one of the quotes but literally everything from this group needs scrutinising for BPS BS
 
I'm truly shocked that the MEA would promote this article - could it have been in error? It's so bad on so many counts and potentially dangerous in its 'advice'.
He said yoga, as well as dietary improvements, herbal remedies, acupuncture and much later, the lightning process, helped his strength to return.
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Yikes. Dietary improvement can help, but the rest of it - just no.
“During this time, I began to become more confident about pushing myself physically and the fear of relapse diminished,” he said. “From yoga, I progressed first to playing tennis and golf and then to my real passions, football and running.

“Despite being in my late 40s, I made a return to Sunday league football after an absence of 21 years. At 50, I joined an athletics club in Lewes. I now run 35 miles a week, race for the club each weekend and have won medals in county championships, being East Sussex over 50s cross country champion two years in succession.”
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Wow, if only yoga really could accomplish all that. I used to do yoga regularly before I got ME and have occasionally done it in a much gentler form and very short bursts since then when possible, but unfortunately for me, it hasn't resulted in running 35 miles a week and winning medals and so on.
Symptoms include profound physical and mental fatigue, concentration and working memory difficulties along with mild confusion.
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Again, news article making the condition sound trivial and no big deal, where many healthy but a bit overworked people will identify with that set of symptoms. I wish the misrepresentation would stop.
 
The MEA’s position is incomprehensible to me.
How they can ‘advertise’ the Sussex group which promotes Pace style treatments, yet work with all the groups pushing for abolition of CBT and GET, both at the same time, is inconsistent.

They cannot write to the Times about Fiona Watt’s statement and advertise this group at the same time without losing coherence.

I agree with @Andy that Colin Barton seems a skilled political mover.

EDIT: one word substituted.
 
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This is just ludicrous....the MEA credibility will be compromised nationally if they don’t distance themselves from this group and their nonsense ...and as others have said they can withdraw advertising support for groups that “go rogue” and deviate away from their core advice just like that...no more leaflet support, no more Facebook postings, a statement on their website distancing themselves from the group etc?

That can be done tomorrow if they were so inclined. You don’t need to rewrite your policies or anything.

By sitting idly watching this happen they might as well open the door for all sorts of crackpot groups to set themselves up in their name.
 
Promoting this article without any comment is directly undermining the good work that Dr Charles Shepherd and the MEA have done in challenging the harm and damage caused by the LP and by GET/CBT.

Obviously there are people with an ME or CFS diagnosis that believe such as Neurolinguistic Programming and exercise has helped them, and this anecdotal evidence needs to be accorded some respect, just as we wish the anecdotal evidence of the harm caused by these approaches to be treated with respect. However it needs to also be put in the context of a lack any reliable supporting scientific evidence, the weight of contrary anecdotal and survey evidence, the problems of potential misdiagnosis in the first place and the variable nature of the condition meaning any improvement associated with a course of action could be purely coincidental, especially as the people reporting such cures have often tried a myriad of things, so if any spontaneous improvement occurs it inevitably happens whilst a 'cure' or a 'treatment' is being tried.

Is this issue of people who have recovered following a diagnosis of ME or CFS believing they found a cure and aggressively promoting it more frequent with ME/CFS than with other conditions? Or is it that they are accorded more credibility because they often the chime with an establishment belief in the psychological nature of the condition and because there are no demonstrably effective treatments?
 
adambeyoncelowe said:
My guess is that the social media person shares things without always reading them. I can't logically make sense of it otherwise.
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My guess is something like this also happened. Colin Barton sent me the article directly. But after I read it, I decided there was no way I was going to share it. I suspect he sent it to Marc Alexander Fluks as the latter has shared it today.
 
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There seems to be evidence that the MEA have 'hidden' my comment on Facebook
Why do you continue to help enable this BPS and PACE supporting group, with their tie-ins with BACME, and their unqualified support of exercise and, for God's sake, the Lightning Process?? Unbelievable.
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Which means only me and my Facebook friends can see it, nobody else.
 
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