Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

[Ysabelle-S]

I recently found out about Sophie Scholl an activist who was executed in WWII. She said



If only we could get more medics to make waves! What about occupational therapists and physiotherapists?

Sophie was very brave. There's a very good film about her - I'd recommend it.

But yes, far too many people opt for the easy way, not rocking any boats, etc.

Just to add, we know this site is being monitored. I hope some of those who are following the threads who have also been pushing the MUS ideology actually take some time to reflect on the lack of science, the disability denial, and ultimately the harm it causes. You cannot wish someone else's illness away. Magical thinking doesn't work. The illness only progresses, and in the case of an illness like ME, the far end is horrifying. The question is whether the aim is to further the best interests of the therapists, or the best interests of the patients. If the latter, then the science coming out of Norway, Columbia, Stanford, San Diego and elsewhere is what should be getting people's attention.

 

[Jenny TipsforME]

Of interest? https://medium.com/@CripTheVoteUK/2...ntroductory-tweets-and-questions-39230b88daac

Crip the Vote UK hosting twitter chat on ME and the psychosocial agenda.

 

[MEMum]

I think for GPs time is a critical factor. They only have time to read what is being fed to them. The medical narrative on ME coming from the media and the medical establishment is CBT, GET and MUS.
Though how anyone with common sense can accept EDS, mitral valve prolapse and asthma (to name but a few) as being treatable with CBT is beyond my grasp.
If PACE can be discredited and true science promoted, progress will be made.

 

[slysaint]

This has a thread of its own but thought it very relevant here
https://www.inclusionlondon.org.uk/campaigns-and-policy/act-now/millionsmissing/

"The scandal of PACE affects not just pwme but other poorly understood and under-researched conditions lumped together as psychosomatic under the umbrella of Medically Unexplained Symptoms. And the team behind PACE was involved in developing the biopsychosocial model of illness and disability underpinning many of the DWP’s welfare reforms. The ramifications of PACE can be seen in the biases in the WCA and PIP against invisible illnesses."

 

[Jo Best]

I think for GPs time is a critical factor. They only have time to read what is being fed to them. The medical narrative on ME coming from the media and the medical establishment is CBT, GET and MUS.
Though how anyone with common sense can accept EDS, mitral valve prolapse and asthma (to name but a few) as being treatable with CBT is beyond my grasp.
If PACE can be discredited and true science promoted, progress will be made.

The worrying part about the MUPP(ET)S meeting is that it was aimed at paediatricians and while it's likely that some (perhaps more recently qualified or others with less capacity for critical thinking) will accept what they heard as current received wisdom, I do hope that others had the experience or good sense to see it for the nonsense that it is. Of course, that won't help their patients if they start to be restricted by their hospital's policy or NICE guidelines, etc.

 

[Jo Best]

I will be forwarding all emails received to the ME association tomorrow and have forwarded all emails also to the officers of the club for them to respond.

Dr Stella Imong

Did she mean "by"? I would be furious if my private email to her was forwarded to any organisation or person other than those representing the intended recipient or those responsible for the cause of my complaint.

I noticed that too. Does she mean any e-mails sent to her about the conference will be forwarded to the MEA? How odd. They are addressed to her, and by implication to her organisation, not to the MEA.
@charles shepherd, can you enlighten us.

I get the firm impression from my correspondence with Dr Imong that she does not want to have any further involvement with what has happened here and is therefore handing any further correspondence from members of the public over to the various people who are now dealing with it

@charles shepherd did Dr Stella Imong forward all emails to the MEA?
If this is the case, how thas the MEA dealt with this breach of privacy?
Perhaps all correspondents were members of the MEA or had put their email address and content in the public domain or perhaps not and if they did not see her reply to you they are unaware of this breach of their privacy?
Thanks in anticipation of clarification as I would like to know if I need to follow up my concern.