United Kingdom: News from Forward-ME Group

https://twitter.com/user/status/1759966567696101658


Sonya Chowdhury
@SonyaChowdhury

Andrew Morris stepped back some time ago and Simon Chandlers took over. I don't know who is responsible for the website. We attend meetings when we can but the grouip is still active

3:41 PM · Feb 20, 2024


https://twitter.com/user/status/1759986719020200237


Dx Revision Watch
@dxrevisionwatch

Thank you for your response, Sonya. If no-one is currently managing the website, are summaries or meeting minutes not otherwise being published?

 

https://twitter.com/user/status/1759952504928764108


Action for M.E.
@actionforme

We’re pleased to say the APPG AGM has concluded and has been reconstituted with 4 officers and 16 ordinary members Minutes from the previous meeting have been approved and will be shared on the APPG website soon

2:45 PM · Feb 20, 2024

 

https://twitter.com/user/status/1759987537580359731



Sonya Chowdhury
@SonyaChowdhury
39m

I'm sorry, I'm not sure as I'm not involved in the secreatriat of the group at all. I know Simon has worked hard to ensure meetings continue but is a volunteer and has ME himself (which he is very open about hence sharing)

 

There is nothing that I can see on the website or on previous minutes that clarifies who the secretariat for Forward-ME is.

@Russell Fleming As someone who used to attend Forward-ME meetings on behalf of the ME Association, do you know who is currently providing secretariat support??

 

The ME association forgot to notify in advance too.

 

Everyone is sick and forgetful at once. We’re all in a lot of trouble aren’t we?

 

Moved post

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Key points from Forward ME meeting (on 22 May 2024):

· DHSC presentation of responses to IDP consultation given. Reassuringly reflects ME community views well. Election affects future actions & timelines.

· FME to write to all NHS Trusts/ICB heads to highlight continuing practices in contravention of NICE guidelines (Contaminated Blood scandal similarities).

· BACME conf (137 attendees 16 May) feedback highlighted launch of e-learning module and useful workshops, as well as concerns around claims for dysregulation model “as seen in NICE guidelines” when it is NOT. Question over attendance at FME by BACME requires discussion.

· Call for all FME members to share list key activities for shared access to assist co-ordination and clarity of priorities and timings.

· Consideration to consultancy project to pull together key issues summary, shared vision, aims and priority tasks for all to best achieve progress.

Please see notes for action points.
Next meeting date is Wed 3 July, 2pm - please make a note in your diary.

--------

I wasn't able to attend that meeting due to (professional) work commitments, but looking back at past emails, this is the meeting summary I received. I'll see if I can find anything more.
Minutes were missing for a while because of lack of resource, but thankfully this is now improving.

 

Thanks for the above:

BACME's response to a request from Trish asking if more PPI would be allowed to join the conference was: "There will be two Forward ME members attending who can share information with people living with ME/CFS. We have therefore decided that, for this year's conference, we are not able to accept more attendees who are not clinicians. We always include Patient and Carer videos in the Conference format."

Can we therefore ask for Denise's report to be shared @MBailey @PeterW

 

Hi @MEMarge , just to let you know I've emailed Simon Chandler (Chair of Forward-ME) to make sure he's aware of your request and to say #MEAction UK is happy for Denise's report to be shared publicly.
There might also be a report to Forward-ME from Russell Fleming (MEAssociation), the other attendee, I'm not sure.

I'm sure either Simon or @PeterW will let us know where and when they decide to share it.

 

Both Simon and I responded quickly to say that we are happy for these reports to be shared, and that we had no wish to withold these - have they been published now?

 

@MEMarge - apologies for the delay in getting these to you, we've been rather busy the last couple of weeks with all the various things going on, so thanks @PeterW for the nudge!

Attached are Denise’s notes made during the BACME conference and these were presented to Forward-ME for discussion.
Please note these are not formatted or presented in a way that was for public dissemination and are provided here raw and unfiltered. (Note - I have made 2 edits to remove personal information that could identify patients).

Needless to say MEAction UK have continued serious concerns over both BACME and their involvement with Forward-ME. Following a decision by some members, for Forward-ME to work closer with BACME, MEAction UK withdrew from the group.

 

I find this an incredibly worrying situation, how this has ended up:

It is 1. inappropriate that we've ended up with MEAction having to leave, and 2. A really indicative sign if we now have a group representing 'pwme' that includes BACME instead of MEAction that the other members of the group - whichever ones they were - who decided and didn't hear those concerns regarding BACME made the choice of 'working with' BACME over pwme and MEAction

What is Forward ME now after this development?

 

Perhaps notable that the first speaker, Dr Alan Stewart, who apparently began his talk by objecting to the name "ME/CFS", is also one of the Sussex & Kent group's medical advisors. (Also notable they have a new MP patron: do they have more patrons and medical advisors than active members yet?). Quoting from Stewart's biography from their website:

If things were sufficiently dire as for it to be necessary for ME Action to leave Forward-ME, why did they not share that with the whole ME patient community, and explain the rationale for it openly? Everything about us without us...

 

THIS - Is Deeply disturbing for the ME Community

.

 

I wonder what he prefers?

Medicine no longer follows 'common sense'. It follows reliable evidence.
What success of the service?
etc.

I don't know the answer to Trish's question.
Except of course produce our own S4ME educational literature. That could be done but it needs a lot of energy. I have just co-authored a response to Nath and Walitt from members which has involved a quite amazing amount of effort and skill (not on my part). Maybe the same could be applied to devising some educational materials. But we cannot expect the committee and moderator members who do so much hard work already to do any more.

About four people tends to be good for such a project.

 

A Vote of No Confidence in BACME and Forward ME?