United Kingdom: News from Forward-ME Group

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.

 

https://twitter.com/user/status/1759861718598013046


Dx Revision Watch
@dxrevisionwatch

Hi Sonya, when you've got a minute - what is the status of Forward-ME? The group has posted no minutes or meeting summaries since November 2022. Is it still operational?

 

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/

 

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.

 

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..

 

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)

 

No probs sharing. Thanks.

 

Thank you, Fainbrog.

 

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/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??

 

Moved post

-----

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?