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?

 

Today's APPG on ME meeting is its AGM:


https://twitter.com/user/status/1759857371369615503


Sonya Chowdhury
@SonyaChowdhury

It is my fault there has been no posting on this. With sickness/vacancy, we have had virtually no comms capacity & this slipped off my radar. The APPG is today and the AGM. I will ask Carol to do recorded summary of meeting to share as mins not approved until the next mtg

8:27 AM · Feb 20, 2024

 

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.

 

https://twitter.com/user/status/1759896515420570030


There is then a full APPG meeting after the AGM according to AfME.

This grates my gears somewhat; I appreciate that they are busy and short of resource as noted (and, I know a lot will have gone into the C4 News piece last night), but, these last minute awarenesses of meetings, don't allow anyone time to try to mobilise their MP to attend (even though of course, most of us know their MP won't attend despite being asked).

And they wonder why many will have little confidence in the APPG and the charities who are the secretariat - there will of course also be no live stream or recording of the meeting that pwME have been asking about for a long time either. These are the sorts of things that pwME will share and do some of the leg work in getting awareness out there.

This might be more for a different thread and I'll probably get roasted by some for being negative about AfME..but there is a recent history of cock-ups with scheduling, iirc, a room booking issue rescheduled one of the last meetings.

 

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..

 

The APPG on ME's AGMs are usually held in May or March. Unclear why this one is being held so early - unless it is pre-empting the release of a date for a general election.

 

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://www.ipt.org.uk/Newsroom/details/What-happens-once-a-general-election-has-been-called

"As is laid down in statute, the dissolution of Parliament must take place 25 working days before the proposed polling day...

"House of Commons

"Once Parliament has been dissolved, all the seats in the House of Commons become vacant. This means that there are no MPs until after the general election. All business in the House comes to an end."

 

If memory serves, APPGs have to be re-formed (or whatever the appropriate parliamentary terminology is) after every election too. Wonder how many of the members have already decided to step down at the next election - don't have the energy to look..