Forward-ME Group Minutes - 10th July 2019

Sly Saint

Sly Saint

Senior Member (Voting Rights)
http://www.forward-me.org.uk/10th July 2019.htm

write up at MEA
The ME Association is an active member of Forward ME which is a collaboration of ME/CFS charities and individuals who meet regularly under the chairmanship of the Countess of Mar in the House of Lords.

The following are the most recent minutes from the meeting held back in July. You can also find these minutes and more information about Forward ME by visiting their website.

The minutes relate to the discussion the group had with Clare Owen, assistant Director of the Medical Schools Council, about improving knowledge and understanding of ME/CFS among medical students.

Also discussed was an application made by the group to a Public Relations company in an attempt to raise greater awareness and acceptance through a national publicity campaign. Unfortunately, the bid was unsuccessful.

And they debated the NICE guideline review, the DWP initiatives, the pending Royal College of GPs conference, recent research developments and CMRC initiatives.

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https://www.meassociation.org.uk/20...ians-to-listen-to-patients-11-september-2019/
 
My eldest daughter's friend is training to be a GP - I've sent @Adam pwme 's video re children to her via Whatsapp and she was truly shocked - needless to say she knows nothing about the condition. She is now open to discussion.

It's very relevent in interactions with medics, particularly consultants as to how much the psychosocial model is entrenched here.
 
This was quite an eye opener for me, particularly the bit I have bolded.
Clare Owen (Medical Schools Council) said:
There are 40 medical schools, with each setting their own curriculum. Getting all 40 to change in the way we might wish could be difficult. In her view nothing was likely to change until NICE had reported.
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And there I was assuming, in my ignorance, that there would be some sort of standardised curriculum.
 
More detailed than the usual minutes. I'm afraid I finished reading it with the impression that it was all pretty pointless. A disparate bunch of people faffing about. I don't suppose that's remotely fair, but wasn't that all a bit of an unfocused waste of time? Please someone tell me I'm wrong.
 
Isn't it rather odd that there seem to be 40 English and 5 Scottish medical schools all seemingly taking a similar, wrong, approach. What are the chances of that? It would be interesting to have details of the strategic planning meetings and those present at them. If they are independent would it not be expected that one or two showed independence? It is not as if this issue has been unknown for the last thirty or forty years.
 
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Combine the current NICE guidelines, the push to MUS, and the awful RCGP training course on ME, the influence of Sharpe, Crawley, Wessely etc etc and it's not that surprising that ME is so badly misunderstood in medical schools. The question is what can be done about it.

I have no idea. But I don't think Unrest is the way to go. It's too confusing and non scientific. The lack of consultant level ME experts in the UK makes it so difficult to even get started.
 
1) education situation is terrible . Why was it not tackled more before
And clear Illustration that we are NOT on an even playing field with comparable illnesses we are competing on research with.

2) first I’ve heard of the PR idea. In theory , good, but as a decades long sufferer I personally am not enthused by a campaign around being “believed”, treated with respect etc or perhaps I should say it’s extremely depressing that in 2019 pwMEs money is being used to reach this first base of good care from health professionals. I would hope education around severity and devastation could be included rather than showing how someone’s life can be transformed by having a positive GP encounter which can undermine one need whilst helping another.

3) what news is there on the NICE severe group, I have only heard about children and adolescents as special interest.

A huge number of groups


The research discussion summary was a bit odd. I don’t think any diet has much general use.
 
Trish said:
More detailed than the usual minutes. I'm afraid I finished reading it with the impression that it was all pretty pointless. A disparate bunch of people faffing about. I don't suppose that's remotely fair, but wasn't that all a bit of an unfocused waste of time? Please someone tell me I'm wrong.
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Without funding or support from institutions, talking is all people can do.

Nearly everything is a waste of time until the problem is taken seriously. Judging from what medical schools think, things are significantly worse than before the CFS debacle began, confident aggressive disinformation is the norm.

Which isn't the same as useless, it's important to keep this alive until the time this disease is taken seriously, but most efforts being a waste of time is pretty much the norm and this was no exception. Like trying to build a whole space program with $200. Lots of talk, not much going to space.
 
There’s been no campaigning on this though. The Scottish FOI was 2017. Did forward ME just decide nothing could be done until 2020 and a NICE review, make that decision and we just wait? . Surely waiting for the establishment to evolve doesn’t have to be our charities course of action. It’s like when MRC refused charities request 2012 for continuing ring-fenced funds. Unless you read the minutes I doubt members of charities were even told or certainly not in a “they’ve refused what we asked so we are starting this campaign” way. Or when we need better services but we wait until the day research will prove our true medical home.

For an illness as down trodden ,misrepresented, neglected, under resourced, the representational charities (excluding #MM) are so passive And acquiescent. Why haven’t they reformed an Appg. Why isn’t there a national call for an ME/CFS strategy instead of that just being something in the Scottish #MM manifesto, who by the way refer to the Tymes foi findings in their section on education. Their document is great but why don’t we see something similar from mea or AFME who just speak vaguely about a desire to inspire & inform as their own strategy.? I can only recall a campaign in 2017 regarding NICE ( after America had published some groundbreaking stuff regarding GET I think) and then there was the PACE petition 2005.

I know some people argue that charities can do what they like but we are unfortunate to have the main two deciding that campaigning isn’t something they will do because many other major charities do. For example this BELOW is from Parkinson’s uk and it’s a charity leading a network of patients and volunteers in endlessly campaigning every month until they are satisfied with their lot.

Join our campaigns network today
Our Campaigns Network is made up of over 11,000 people, all working together to make a real difference for people living with Parkinson's.

How does it work?
We will contact you (normally monthly) with a campaign action for you to take. This could include:

  • contacting the Government, your local decision maker or service planner to support a campaign or to resolve a problem
  • sharing your experiences
  • completing a survey
  • joining forces with others to bring about change
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It’s positive, it’s inspiring and it both helps patients feel they can make a difference whilst proving leadership & mobilising them to make that difference. with the mea I think that it would be best if they got a CEO to bring it up to fulfilling its expected role and Dr Charles Shepherd had the medical advisor position .



Moderator note:
This post has been copied and replies to this one about the ME Association have been moved to this thread
https://www.s4me.info/threads/the-future-and-funding-of-uk-me-cfs-charities.11315/page-2#post-202859
 
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I put in an FOI with Uea medical school on CFS education

Two points-
1) they don’t provide any education on CFS at all
2) it’s really easy to put in FOI requests. I hadn’t realised a lay person like me could easily do it. In my naivety my request was all about the nature of what they taught, when the simple fact was there was no information to share as they taught nothing. I don’t understand why our charities seemingly hadn’t got this basic information before, unless they had and Nina muirheads info seeking was just more in depth eg gaining feedback on what info they would be open to but why are we at this basic place in 2019? .it’s hardly surprising there’s no interest in ME as a career choice or research basis if it’s not even taught in many medical schools at all.

edit I also question how /why is it that ME& CFS are not taught.?. Is it because People who decide the syllabus think it’s not a medical matter but a behavioral matter? I assume there’s some teaching around MH/psychology, I had previously assumed CFS was being taught there. Or is it that they think as it’s unexplained there’s nothing scientific to teach about it?

edit I think that it Would be useful if the info as to which medical schools taught what was put in the public domain because it could be useful to local campaigning eg #MM
 
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This is the link to the latest UK General Practitioner curriculum:

https://www.gmc-uk.org/-/media/documents/gp-curriculum-2019_pdf-79017777.pdf

Just glancing through it, it doesn't cover specific medical conditions, presumably because all the ones a GP should be able to diagnose should have been covered in medical school. The curriculum covers skills and competences needed for general practice.

I haven't read through it, but somewhere in it I presume it will say something like: For patients with 'medically unexplained symptoms', send them off for CBT and forget about them.
 
Simbindi said:
I haven't read through it, but somewhere in it I presume it will say something like: For patients with 'medically unexplained symptoms', send them off for CBT and forget about them.
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At a quick look through, I'd say it is not about how to handle specific conditions at all. It is about how to be a GP, and the different aspects of assessment for trainee GP's.
 
If ME CFS arent taught Because They’re seen as psychological behavioural then that in itself is teaching drs to think of it in a certain way, ie it’s not serious or medical because we aren’t taught about it.
I had assumed MUS would be taught, with CFS lumped under that. But perhaps it’s all just left to psychology? Perhaps its worth looking at the syllabuses for health/ clinical psychology?
 
Cinders66 said:
If ME CFS arent taught Because They’re seen as psychological behavioural then that in itself is teaching drs to think of it in a certain way, ie it’s not serious or medical because we aren’t taught about it.
I had assumed MUS would be taught, with CFS lumped under that. But perhaps it’s all just left to psychology? Perhaps its worth looking at the syllabuses for health/ clinical psychology?
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Undergraduate medical students all do psychiatry as far as I know so some conditions that might describe ME or CFS patients may turn up there alright. However, I doubt there is a requirement that every single one of the thousands of conditions are taught.
 
Dolphin said:
Undergraduate medical students all do psychiatry as far as I know so some conditions that might describe ME or CFS patients may turn up there alright. However, I doubt there is a requirement that every single one of the thousands of conditions are taught.
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Would it be the case that conditions aren’t taught until they specialise so MS Isnt taught until neurology, then again GPs have to have knowledge enough I would have thought, on every major condition. I would still like to know if it’s not taught because there’s no proven science to teach they might say , unlike MS, or because it’s considered psychological.

I can understood not teaching every rare illness which are the realm of specialists and the average GP might not often see but CFS isn’t in that category and is supposed to be managed in primary care. My FOI just came back as there’s nothing to share as nothing is taught at all. Again it would be interesting to know for example is sjogrens taught, is autism taught. Is CFS only ever taught in context of MUS and some medical schools simply don’t bother but again that’s hardly preparing drs for something which is often presented as a lot of GP workload. Or maybe GPs are just supposed to do a non scientific “how to manage those depressing frequent flier patients without organic illness “ module once they graduate.

it would also be interesting to know if and where is taught about FND at Medical school.
 
I’m not an expert on undergraduate medical education but I get the impression it is a bit ad hoc so as I say not all of the thousands of conditions are covered (just because something is rare doesn’t mean it is not important). My guess is neurologists, endocrinologists, etc. give lectures but ME or CFS could fall through the cracks as doesn’t neatly fit in one. Undergraduate education has to cover huge areas between all the science and then specific areas. My impression from medical school friends in the past was the last two years were divided between surgery, psychiatry, general medicine and a fourth area (maybe paediatrics?).
 
Trish said:
At a quick look through, I'd say it is not about how to handle specific conditions at all. It is about how to be a GP, and the different aspects of assessment for trainee GP's.
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I was being sarcastic when I wrote:

'I haven't read through it, but somewhere in it I presume it will say something like: For patients with 'medically unexplained symptoms', send them off for CBT and forget about them.'

I probably should have used an emoji to show this.
 
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