United Kingdom: News from Forward-ME Group

Code:

https://twitter.com/TheWestonMale/status/1323269077918429189

https://twitter.com/user/status/1323269077918429189

 

I see that S4ME is not a linked organisation (http://forward-me.co.uk/linked-organisations-and-associates.html):

I appreciate that most people here don’t have much spare capacity but would it be worth enquiring if S4ME could become a linked organisation with a nominated member invited to attend Forward-ME meetings?

 

A nice idea but I believe that it's invitation only.

 

https://www.meaction.net/2020/10/20/meaction-uks-membership-of-forward-me/

 

Here we go again.

 

I think the forum would be well advised to retain its independence.

 

Here is the full statement:

https://www.meaction.net/2020/10/20/meaction-uks-membership-of-forward-me/

October 20, 2020

#MEAction UK are sad to announce that we are no longer part of Forward-ME.

#MEAction UK worked hard on and fully supported the Forward-ME statement on spinal surgery and ME. Some Forward-ME members felt that #MEAction co-founder Jennifer Brea’s personal interest in and advocacy for people with mast cell activation syndrome, connective tissue disorders and structural and/or neurological diagnoses conflicted with their aims. Despite co-producing this statement, our name and logo has been removed from the statement by Forward-ME. #MEAction UK disagrees with this decision and stands by the joint statement that we helped prepare.

Additionally, our membership of Forward-ME has been revoked. We have to accept that decisions on membership of Forward-ME lie solely with the Countess of Mar, who informed us last week that she had withdrawn #MEAction UK’s membership of the group. We are proud of the work that we have contributed to as members, including the survey on CBT and GET for NICE, providing volunteers for the Royal College of GPs’ conference information stall and working with the community to make the ME parliamentary debates as successful as they were. We encouraged the ME community to invite their MPs to attend the APPG and will continue to lend our support to any initiative that helps people with ME.

We will continue to work with individual members as we approach one of the most important events for the ME community in well over a decade: the NICE draft guidelines consultation.

#MEAction UK is first and foremost a grassroots organisation led by volunteers with ME, carers, and other allies. We are proud of the work we do to publicly give voice to people with ME across the UK, and promise that this will continue. Together we can make change happen.

We believe that each ME charity and patient organisation in the UK plays a vital role in working towards common goals. We will continue to collaborate where we can be more effective together.

As people with ME and carers volunteering with #MEAction UK, this is not a job for us, but a fight for our own futures and that of our loved ones.

If you want to be part of that fight and help steer #MEAction UK, please consider volunteering with us. Our aims over the coming months include submitting a robust response to NICE as part of their draft guideline consultation; continuing to reach out to the media to highlight the link between long-COVID and ME; and becoming a UK charity in our own right.

20th October 2020

Forward-ME Spinal Surgery and ME Statement

 

This is a bit of a shame because Forward-ME brought together the main/larger charities. It seems there may be some discord between those that run the US and UK camps of ME Action.

 

https://twitter.com/user/status/1323383842355482627

 

I believe a request could be considered based on the site wording, but not sure S4ME joining Forward ME would be prudent.

There are some kernels of relevance in the overexcited analogy(!) of the judge, jury and executioner being kept separate. Less dramatically, the separation of powers and/roles between 1) advocates/politicians/law makers, 2) the enforcers/police, 3) the prosecution, 4) the defence, etc etc etx, further over-stretched analogies...(!). You get the idea.

Which party equals S4ME from the above motley crew is not the point. But the need for split seems analagous, especially as I aways write about this site as a crowdfunded public health thinktank, which makes it less akin to the advocacy party.

Even 'Vatican observer status' may be awkward on a human level.

Just some half baked food for thought.

 

Regarding S4ME and membership of tge Forward ME group.

One can collaborate and work toward the same aims without being a member of a group.

Sometimes being "inside the tent" obliges you to follow etiquette that can be restrictive and hinder your goals.

Splitting away or leaving a group can cause arguments and division that distract from primary goals.

It can be very useful to have different groups who do different things well, can offer each other balance and achieve things that the other groups can't.

 

PRINCIPLES OF WORKING
We seek to maximise consensus but respect those who have differing views.

Members are free to opt in or out of specific group activities

These are the stated practices. It makes no mention of a requirement to respect those with shared views.

MEAction UK seem to have taken a commendable and bold step. The reasons for their being treated in this manner require explanation.

This seems to be an example of "One step FORWARD and two steps back ME".

 

Indeed. #MEAction UK had also worked closely on briefing documents for (the now Vice-chair of Forward-ME) Carol Monaghan MP. What will happen to that working relationship now #MEAction UK is persona non grata?

I found myself in a similar situation, in April 2018, as documented on this forum. My understanding was that few of the org reps had the courage to speak out against a unilateral decision to terminate my advisory relationship with Forward-ME - which resulted in a number of ongoing projects around classification and coding being set aside, unresolved; or against the content of a letter circulated to all "Linked Organisations and Associates"; or against an edited version of that letter being published on the Forward-ME website before I had had any opportunity to respond privately or publicly to claims made in that letter.


If this forum wishes to remain a platform where academic papers, briefing documents, letters to journals etc can be freely discussed and criticised I do not see how that can be compatible with applying for membership of Forward-ME.

 

The setting up of 'Forward ME' was specifically designed to keep out patients/patient activists. I attended all of the APPGs at the HoC between April 2006 and March 2010 and the CoM disliked us being there. She even tried to get my friend and colleague arrested after one meeting.

 

A PDF of the revised position statement (which is still dated 30 September 2020) can be downloaded from the site of ME Research UK:

https://www.meresearch.org.uk/wp-co...-Statement-Spinal-Surgery-and-ME-15.10.20.pdf


The original, jointly signed PDF (dated 30 September 2020) which includes the MEAction UK logo and the names "Laurie Jones, Managing Director, #MEAction UK Denise Spreag" is attached to this post and a copy archived on my site here:

https://dxrevisionwatch.files.wordp...-statement-spinal-surgery-and-me-06.10.20.pdf

 

Could anybody summarise the differences between the two, please? (I'm too brain fogged to work it out.)

 

The dates remain the same - both PDFs are dated "30 September 2020".

The differences are:

1 The original text of the position statement is signed:

"Yours sincerely, Margaret Mar and Denise Spreag
On behalf of Forward ME"


the revised version is signed:

"Yours sincerely, Margaret Mar
On behalf of Forward ME"


2 The original document includes the MEAction UK logo and personnel names, as per the screenshot below. This has been redacted from the revised version:


https://dxrevisionwatch.files.wordp...-statement-spinal-surgery-and-me-06.10.20.pdf



The revised, redacted version:

 

As far as I can see, just MEAction UK's logo and signatories have been removed.

EDIT: Cross-posted with @Dx Revision Watch. I hadn't noticed the removal of Denise's name...

 

Thanks!