Forward ME Group Minutes – 17th October 2017

Andy

Andy

Retired committee member
Present: Countess of Mar (Chairman); Janice & Bill Kent (reMEmber); Hannah Clifton (ME Trust); Jane Colby & Anita Williams (TYMES Trust); Tony Crouch (representing 25% Group and TYMES Trust); Clare Ogden (Action for ME); Dr Charles Shepherd (ME Association); and Dr Paul Worthley (ME Trust).
In attendance: Dr Max Davie (Paediatrician).

  1. Apologies had been received from Christine Harrison (BRAME) and Sue Waddle (MERUK).
  2. Dr Max Davie
    1. The Chairman welcomed Dr Davie who explained he was a Consultant Paediatrician with Evalina London Children’s Healthcare, Guys and St Thomas’s NHS Trust working in the community in Lambeth and based at the Elephant and Castle. He was also Assistant Officer for Health Promotion at the Royal College of Paediatricians. He had a particular interest in “unexplained illnesses”. Although not an expert in ME/CFS he had acquired a lot of knowledge of that condition. He then invited our questions.
Click to expand...
Read the rest at http://www.meresearch.org.uk/news/forward-me-group-minutes-17th-october-2017/
 
Odd that the meeting should discuss Paediatric ME without any mention of EC and her claims to be a world expert on the subject. I hope the subject was raised and the problems explained to the paediatrician, even if this was not thought suitable for minuting.
 
He had a particular interest in “unexplained illnesses”. Although not an expert in ME/CFS he had acquired a lot of knowledge of that condition.
Click to expand...
Why was Max Davies there at all? ME is not in the realm of mental health, no matter which euphemism is being used to sound less like an ignorant jackass. And Max Davies has a history of endorsing the view that researchers don't want to get involved with the "furore," "abuse," and "intimidation" around ME/CFS. He also claimed that the PACE authors had addressed criticism of their work, though eventually conceded the point that they hadn't in regards to using a standard deviation of a scale (SF36) with non-normal distribution to create a recovery threshold.

He engages (which is better than most), but uncritically accepts and promotes psychosocial causation of ME/CFS. It's all very holistic, in the most anti-science sense of the word :p Though at least he thinks ME patients shouldn't be discriminated against any more than mental health patients.
 
I'm probably not appreciating some detail in the right way but in reading these minutes they don't seem to to match the enthusiasm that the TYMES Trust expressed. Can anybody suggest what I might have missed?
Code: 
https://www.facebook.com/tymestrust/posts/2058077487810716
 
I’m confused (whats new?). They had a meeting on the 17th October and another on the 31st October? The link above says their next meeting is on the 31st October 2018. I thought they were changing how they work and only meeting occasionally. Or disbanding or something . . . Sorry no brain at all. I would normally keep this to myself but there are so many things I don’t get at the moment. Any light? Anyone?
 
Moosie said:
I’m confused (whats new?). They had a meeting on the 17th October and another on the 31st October? The link above says their next meeting is on the 31st October 2018. I thought they were changing how they work and only meeting occasionally. Or disbanding or something . . . Sorry no brain at all. I would normally keep this to myself but there are so many things I don’t get at the moment. Any light? Anyone?
Click to expand...
I think the 31st October meeting is with Mark Baker from NICE and that 2018 is wrong, it should be 2017. Normally the gap between meetings would be longer but this was arranged in order to meet with him.

And yes, I thought that changes were going to be made with Forward-ME but I can't recall what exactly and there is no sign, that I can see, on the Forward-ME website itself, http://www.forward-me.org.uk/default.htm
 
Somewhere it was suggested that the current NICE guidelines have been withdrawn rather than standing until the review comes out in 2020. Is it in these minutes? (I haven't read them yet)

Does any one know?
 
It’s kind of understandable that there are several charities

I previously was involved in dementia charities and there are different ones. Cancer has several as well

Always seems to be some with more a support/care focus and others for research. And politics.
 
Andy said:
I'm probably not appreciating some detail in the right way but in reading these minutes they don't seem to to match the enthusiasm that the TYMES Trust expressed. Can anybody suggest what I might have missed?
Code: 
https://www.facebook.com/tymestrust/posts/2058077487810716
Click to expand...

I’m assuming they had a cards on the table discussion of which the details wouldn’t be set out in public document like these minutes which would always be a more diplomatic version.
 
I wouldn’t put writing a joint leaflet as top priority for the charities joint working. Need to focus on putting together some decent education for GPs, pushing for research funding, pressure on CCGs so severe patients get equal access to NHS/social services to people with other illnesses
 
Andy said:
I'm probably not appreciating some detail in the right way but in reading these minutes they don't seem to to match the enthusiasm that the TYMES Trust expressed. Can anybody suggest what I might have missed?
Code: 
https://www.facebook.com/tymestrust/posts/2058077487810716
Click to expand...

I think from memory that AFME writes these minutes and there can be a battle from different sides trying to control the contents as it's felt AFME leaves out anything they feel
uncomfortable with
 
ukxmrv said:
I think from memory that AFME writes these minutes and there can be a battle from different sides trying to control the contents as it's felt AFME leaves out anything they feel
uncomfortable with
Click to expand...

Sonya does the CMRC ones which never seem to address anything much.

Max Davie does seem to have said some really ill-informed things in the past, and from the minutes, it sounded as if he wasn't saying much.
 
You must log in or register to reply here.
Back
Top Bottom