Briefing paper for parliamentary debate.

I know about 1500 people have used the 'contact your MP' feature on the #MEAction website, so that's a lot of MPs who will now be seeking case studies and info!

The next really useful thing to have would be a PDF of case studies. A selection of adults and children from across the different severities, each chosen to highlight a specific problem area in ME treatment and research. Real people, real faces, real problems. So a child taken from her parents for worsening under the GET regime. An adult sectioned for whatever reason. Another who went from mild to severe because of poor treatment.

That might require a lot of work, though, so maybe it's something to plan for a future main hall debate in Parliament.
 
adambeyoncelowe said:
The next really useful thing to have would be a PDF of case studies. A selection of adults and children from across the different severities, each chosen to highlight a specific problem area in ME treatment and research. Real people, real faces, real problems. So a child taken from her parents for worsening under the GET regime. An adult sectioned for whatever reason. Another who went from mild to severe because of poor treatment.

That might require a lot of work, though, so maybe it's something to plan for a future main hall debate in Parliament.
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The 2015 ME Association report on their poll also includes lots of patient testimony from respondents: http://www.meassociation.org.uk/wp-...No-decisions-about-me-without-me-30.05.15.pdf
 
Esther12 said:
The 2015 ME Association report on their poll also includes lots of patient testimony from respondents: http://www.meassociation.org.uk/wp-...No-decisions-about-me-without-me-30.05.15.pdf
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Yes, I've seen that one. I keep referring to the part on most/least appropriate source of care (GP and psychiatrist, respectively). That's mainly the source of Keith's 2017 paper on harms. Though unique individual stories with a picture of the person affected would be more compelling/persuasive, I think.
 
adambeyoncelowe said:
Yes, I've seen that one. I keep referring to the part on most/least appropriate source of care (GP and psychiatrist, respectively). That's mainly the source of Keith's 2017 paper on harms. Though unique individual stories with a picture of the person affected would be more compelling/persuasive, I think.
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both AFME and ME Association have in recent months been asking people to come forward if they are prepared to share their stories - could ask them to share with MEAction
 
NelliePledge said:
both AFME and ME Association have in recent months been asking people to come forward if they are prepared to share their stories - could ask them to share with MEAction
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i was just about to post the same; but also that a lot of these stories were in the press in May (also maybe on both AfME and MEA FB). I think as @adambeyoncelowe said maybe draw up a list of 'categories' and then see if any of the stories fit the bill.
 
I think if you want a brief patients' story to ask your MP to watch, Emma Shorter's testimony at the recent Scottish parliament petition hearing was a perfect example. If you want to shock them with the most harrowing stories, Voices in the Shadows, in one of its shortened versions is ideal.
 
MSEsperanza said:
The S4ME PACE summary linked in the briefing contains a typo in the two figures on p. 3+4 ("prelanned" instead of preplanned).

Code: 
https://www.s4me.info/docs/PaceBriefing3.pdf

Is there another URL to the revised paper with the correct figure titles?
@adambeyoncelowe

edit: wrote "tables" instead of "figures" :asleep:
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I've corrected the version attached to the start of this thread and also the one in the https://www.s4me.info/docs/PaceBriefing3.pdf URL.
 
Seems some people really didn't like the briefing document, or at least AfME's part of it and involvement.
AFME public complaint
Public Complaint to Action for ME (AFME) June 2018
  1. Petition of support for patients (with anonymous option) here:
    https://you.38degrees.org.uk/petiti...bout-charity-action-for-me-charity-commission
  2. To AFME CEO Sonya Chowdhury for a response (questions are at the bottom of each separate part).
  3. To AFME Board of Trustees Chair Jonah Grunsell for a response.
  4. To Charity Commission to investigate.
....
COMPLAINT PART 1
JUNE 2018 PARLIAMENTARY BRIEFING PSYCHOLOGY ERRORS
SUMMARY
1. PACE trial funded by AFME (see part 2).
2. Parliamentary Briefing (PACE errors) template written by AFME as well as final sections e.g. children’s and severe.
3. Parliamentary Briefing had psychology errors e.g. children.
4. We were told not to criticise, highlight or publicise these errors.
5. Parliamentary debate speeches had psychology errors e.g. children.
_
Recently in June 2018, MP Carol Monaghan created important parliamentary debates in both Scotland and at Westminster. The main focus was to highlight problems with psychology and deconditioning-focused treatments of Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) following the PACE trial errors and subsequent NICE guidelines flaws.
However, this very positive achievement has been heavily criticised by myself and an overwhelming number of patients because of problems with the parliamentary briefing.
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https://memanchester.wordpress.com/afmecomplaint/
 
However, this very positive achievement has been heavily criticised by myself and an overwhelming number of patients because of problems with the parliamentary briefing.
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The fact that this refers to 'myself' suggests it was written by one person, not 'an overwhelming number of patients'. Do we know anything about the organisation who produced this?
 
Trish said:
The fact that this refers to 'myself' suggests it was written by one person, not 'an overwhelming number of patients'. Do we know anything about the organisation who produced this?
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Not me, I just stumbled across it on Facebook, it was the first time I'd seen anything by them.
 
This is where Karen Morris' public resignation from MEAction was published so I think it's her public complaint to AfME. I don't know who ME Manchester are and if it's made up of more than one person.

Using myself instead of me makes my teeth itch.
 
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