United Kingdom: News from Forward-ME Group

Dx Revision Watch said:
For clarity, Forward-ME is not a charity organisation, nor can it be described as a "main UK ME/CFS charity". The main ME/CFS registered charity orgs (by membership and income) are AfME and the MEA.

Forward-ME was set up by the Countess of Mar as an informal group, membership of which was controlled by the Countess of Mar. She set up this group partly because she did not approve of members of the public attending APPG on ME meetings. Members of the public are not able to attend Forward-ME meetings, either.

The Countess of Mar stepped down as Chair of Forward-ME in Spring 2021 but according to the website, she continues to actively serve on the group's Steering Group.

The current Chair is Andrew B Morris; the current Deputy-Chair is Carol Monaghan MP.


https://forward-me.co.uk/governance-meetings/

"FORWARD-ME GOVERNANCE

Context​

The ME community in the UK is served by a considerable range of charities, with even the largest being relatively small. Recognising the benefit of being able to speak with a louder voice, Forward-ME was established as a coordinating body to provide a unified and perhaps louder voice for the ME community to reach key influencers and stakeholders – government, medical bodies etc..."​


There have been no meeting minutes posted on the website since 16 November 2022. I cannot confirm whether any meetings have taken place since then or whether any minutes (or meeting summaries) have been circulated but not posted on the Forward-ME website.

I might contact Chair, Andrew Morris and ask whether the group is still operating and if so, why no minutes are being published. However, since I am persona non grata with the Countess of Mar, it might be more productive if someone else were to volunteer to contact him and ask what the status of the group is and why no minutes or summaries are being published. I can provide an email address.
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I’m happy to contact Andrew. I have emailed him previously re Fwd-ME stuff when he first took over as chair and he was pretty responsive. Will try to do tomorrow and report back in due course.
 
Lou B Lou said:
ForwardME and the APPGME are looking more and more like just a drain on us. They do nothing for us - but their existence makes it look as though official groups with parliamentarians are actively advocating for us, when they are simply 'Looking busy, doing nothing' - though not even looking busy these days
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I don't think that's fair to the APPG in that they produced a good report that fed into the government setting up the process to try to get better provision for pwME. An APPG is just a few MP's whose constituents have persuaded them to focus on the topic. It has no official standing and no obigation to continue once it has done all the individuals in the group feel they can do. Carol Monaghan in particular did a lot leading them through parliamentary sessions that are recorded in Hansard and producing their report.

Similarly, I think Forward ME is, or was as I understand it, just an umbrella group for some ME organisations to coordinate activities. I don't think it has any funding or official status.
 
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Hutan said:
It makes me wonder why the main UK ME/CFS charities (e.g. Forward-ME) put up with the ongoing harm caused by BACME...
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Dx Revision Watch said:
For clarity, Forward-ME is not a charity organisation, nor can it be described as a "main UK ME/CFS charity". The main ME/CFS registered charity orgs (by membership and income) are AfME and the MEA.
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You are, of course, right. I used the 'e.g.' slightly wrong. 'i.e.' would have been closer to my intent. I meant the main UK ME/CFS charities, ideally acting altogether via Forward-ME, or alone.

As you note above, Forward-ME's context suggests it was set up to act in a unified way. It would be best placed to apply pressure to BACME. That is, if it is functioning. The lack of minutes does raise some doubt about that.
 
Trish said:
Similarly, I think Forward ME is, or was as I understand it, just an umbrella group for some ME organisations to coordinate activities. I don't think it has any funding or official status.
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Indeed, the group has no official status.

Since the new Chair took office, it has had a Governance statement and Terms of Reference etc at the bottom of this page:

https://forward-me.co.uk/governance-meetings/
 
Dx Revision Watch said:
Thank you, Fainbrog. I've asked Sonya Chowdhury, who is on the Forward-ME Steering Group, but she may not have time to provide a response.
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Have had an initial response from Andrew Morris, advising that he stood down as Chair in 'Spring 2023' and someone named Simon Chandler took over. Clearly, not a good sign that the website hasn't been updated to reflect these changes, so, have followed up with the new chair..
 
Fainbrog said:
Have had an initial response from Andrew Morris, advising that he stood down as Chair in 'Spring 2023' and someone named Simon Chandler took over. Clearly, not a good sign that the website hasn't been updated to reflect these changes, so, have followed up with the new chair..
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Thanks, Fainbrog. I agree with what you've said above. Would you mind if I post a paraphrase of your info on Twitter?
 
https://meassociation.org.uk/2023/03/remember-remember-end-of-an-era-for-award-winning-me-cfs-group/

Remember reMEmber – end of an era for award-winning ME/CFS group

March 18, 2023

"Among the guests last Saturday were chairman of The ME Association Neil Riley with his wife Mary and Simon Chandler [sic], interim chairman of Forward ME, the umbrella campaigning group."


Simon Chandlers has been involved with Forward-ME since at least October 2020:

https://meassociation.org.uk/2020/1...om-the-meeting-09-september-with-sean-oneill/


https://forward-me.co.uk/our-members/

Simon Chandlers MA CEng FIMechE MAPM
I am an independent member of the Forward ME having previously served as an NHS CCG Deputy Chair. After a viral illness, which developed into ME, I coordinated Deloitte’s UK Health account. I hope to use my skills and knowledge to help develop better services and thus outcomes for patients. Email: simon.chandlers@btinternet.com


In the Minutes of the September 9, 2020 meeting he was listed as a rep for the 25% ME Group:

https://forward-me.co.uk/9th-september-2020/

Present

(...)
Simon Chandler [sic], Tony Crouch (25% ME Group)
 
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There's some discussion about matters related to Forward-ME here (follow the arrow in the quote header)
Binkie4 said:
There is a letter in the Times today referencing Maeve's death but then expanding into other areas.

It is entitled Action for ME by Andrew B Morris who says he took over Forward ME as its Chair after the Countess of Mar....." with the primary goal of uniting the three main charities, Action for ME, ME Association and MEResearch UK. While each is well meaning, individually they are not sufficiently effective with a pitifully low combined income of less than £5 million. Sadly I was unable to persuade them to merge and become a fighting force so, frustrated, I stepped down."........" Now is the time to build on this......."
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Moved post

Trish said:
Hmm. Thanks @MBailey for clarification about the Forward ME rep and reporting.

I have been trying to follow this up but our thread has nothing about Forward ME minutes from 22nd May 2024
https://www.s4me.info/threads/united-kingdom-news-from-forward-me-group.16000/page-13

The Forward ME website only lists and links minutes of meetings up to November 2022.
https://forward-me.co.uk/governance-meetings/

I think further discussion of Forward ME should probably move to the relevant thread.
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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.

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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.
 
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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
 
MEMarge said:
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
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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.
 
MBailey said:
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.
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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?
 
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