United Kingdom: News from Forward-ME Group

A new ForwardME website is live (https://forward-me.co.uk/). The CMRC PAG recently sent feedback to Andrew, the new chair, about the website, before it went live last week. We feel it needs significant improvement and numerous edits.

Minutes for the most recent Members Meeting on July 14 have been added to the site: https://forward-me.co.uk/14th-july-2021/

 

I've just had a look at the new Forward-ME website - the text is too small and the line measure far too long for ease of reading. Under "Governance", for example, (bottom of page: https://forward-me.co.uk/governance-meetings/), there are 20 to 30 or more words per line.

I note that #MEActionUK has been restored as members of Forward-ME.

I see that Doctors with M.E. are now members. Also Prof Sir Stephen Holgate is an individual member. Not sure whether Prof Holgate was already an individual member of Forward-ME prior to reorganisation of the group following the Countess of Mar's standing down as Chair.

 

!

https://forward-me.co.uk/faqs/

(...)

"The WHO classifies ME as a neurological disease in section G93.3 of ICD10. Please note CFS and PVFS are in different sections. ICD 11 section 8E49 includes ME and CFS under ‘Other Disorders of the Nervous System’.

 

I've emailed them via the Contact page.

I wonder who is drafting the textual content for the new website pages, and is no-one from the member orgs reviewing the texts before they go live with new pages and new content?

Edited to add: Sonya Chowdhury (Forward-ME Steering Group member) and Clair Ogden have also been informed. I am persona non grata with the COM, so I won't be discussing this error with her.

 

As I noted somewhere in this thread, we submitted lots of feedback on the website. It needs lots of work. We didn't know the test site was going live before our feedback and corrections had been considered. I think (hope) it's a work in progress.

 

That probably would have helped. I expect they've received lots of feedback from all member organisations of FME and now it's just a case of waiting for the site to be updated.

 

Why go live before all new content has been reviewed, fact checked and edited?

 

Sonya Chowdury has advised that she has taken up the error around ICD-10 coding with the new Chair.

 

Moved post

No, it is not a registered charity, registered community interest company, or any other form of registered organisation.

I know the name "Peter White" from Twitter but I don't know in what capacity he works as a "volunteer" for Forward-ME.

I'm not aware of Forward-ME having "volunteers" as such; reps for the 12 orgs listed as Members can attend meetings; there are a number of individual members; and a new Steering Group. According to a recent meeting minutes, they are considering having

Unless he is connected with, for example, the build and management of the new website, it's unclear whether and what relationship he has with Forward-ME or if this is a misunderstanding on the part of the journalist.

I've just noticed in the minutes of the 12 May 2021 meeting this note (I've bolded point 7):

"2021 goals & objectives: Andrew speedily summarised these which were previously distributed and are set out here.

1. New Chairman: Induction, training and introductions to key influencers
2. New Steering Group: Select team and become productive
3. Governance: Put appropriate checks, balances and processes in place to provide stability – paper to follow shortly.
4. Membership: Meet the members and develop eligibility criteria and formalise fees/agreements.
5. ‘Champions’: Agree individual specialists to champion our cause and activities
6. Decode ME: support sign-up of the 20,000 participants.
7. Consolidation: Review joining with other related organisations and merging existing charities
8. Website: Redesign and re-launch
9. Funding: Secure funding for operational expenses
10. New NICE guidelines: Review, respond and create media/medical awareness.
11. Annual Conference: Discuss merits and options going forward
12. Review progress against our 3 Pillars etc."

which begs the question - who might Forward-ME be considering consolidating with, and to what end?

 

Might this refer to the merger between AfME and the ME Trust?

 

I don't know, Adam.

The ME Trust is a member of Forward-ME. But the proposed merger/absorption of ME Trust with AfME is surely the business of ME Trust - not Forward-ME.

In the minutes of the 16 March 2021 meeting, incoming Chair, Andrew Morris said:

Point 7 is one of 12 points under Forward-ME's "2021 goals & objectives":

It's unclear to me what is meant by this if it does refer to Forward-ME, themselves.

However, the minutes of the 14 July meeting state:

1. May Member’s meeting – update

(...)

• ’21 Goals & Objectives – making good progress with no material slippage at present.

• CMRC – Dr David Strain is succeeding S Holgate as Chair so our two organisations will not come together and the PAG will remain with CMRC. However, we would like to retain Nina on the Steering Group if possible.

What does this bolded note mean?

Had there been discussion of the CMRC PAG potentially transferring from the CMRC to Forward-ME? Or of Forward-ME and the CMRC potentially merging and might this be what is being referred to in the May minutes, at point 7?

 

Hold on to your funds everybody. Someone wants them.

 

Following my contacting Forward-ME and a follow-up email to Steering Group member, Sonya Chowdury, an edit has been made to the text in the FAQ.

The text now reads:

https://forward-me.co.uk/faqs/

What’s the origin of the disease in the UK?

(...)

The WHO classifies myalgic encephalomyelitis as a neurological disease in ICD 10 under ‘Diseases of the nervous system’ at G93.3 under the parent ‘Post Viral Fatigue Syndrome’ and in ICD 11 under ‘Other disorders of the nervous system’ at 8E48 as an inclusion to ‘Post Viral Fatigue Syndrome’ with chronic fatigue syndrome but not as CFS/ME or ME/CFS.

​

which I still find somewhat clunky. I am pleased to see that the editor of the text has additionally inserted "but not as CFS/ME or ME/CFS."

I have asked Sonya if she will pass on my thanks for the correction and would she also mention that the "Concept Title" term, as listed in ICD-10 (at G93.3), in ICD-11 (at 8E49), and in all national modifications of ICD-10, is "Postviral fatigue syndrome" - not "Post Viral Fatigue Syndrome" as their text still has it.

 

I wonder, though, if the merger of AfME and the ME Trust is as a result of FME's aim to merge organisations where possible? So this may just be the first example we're seeing (a sort of test run), and FME might encourage/support other charities to merge in future?

 

@PeterW

 

I don't consider Forward-ME would have any business encouraging mergers or any other changes to the structure of other organisations if that were its objective. Forward-ME is not even constituted, itself, as any form of registered charitable org or community interest company.

If the incoming chair does consider there are, "Too many charities in the field already and should not add more into the mix. We should be more aligned to reduce the number of voices."

then I would view this as a personal opinion unless and until the entire stakeholder population of all the UK orgs had been consulted.

The smaller orgs offer very different services. Some have memberships - others don't.

I would consider it beyond the remit of Forward-ME to encourage mergers for the smaller groups - if that is what the chair is aiming for.



https://metrust.org.uk/the-m-e-trust-explores-merger-with-action-for-m-e/

The M.E. Trust explores merger with Action for M.E.
August 4, 2021

On 3 August 2021, The M.E. Trust Board of Trustees approved a decision to explore a merger with Action for M.E. after a process of due diligence started in June...



From the FAQ document in this announcement, above:

10. Were supporting members of Action for M.E. consulted about this decision?

As there has not yet been a formal decision to merger the charities there has not been specific consultation with supporting members of Action for M.E., as discussions were necessarily confidential. Both Boards of Trustees followed a due diligence process before deciding to proceed with exploring a merger.

Following the announcement, we will engage with stakeholders and respond to questions and/or concerns. This will inform the final decision.


11. Why did you choose this M.E. charity to explore a merger with, and not a different one?

Action for M.E. and MET have worked closely together for a number of years. Each charity offers unique services to the M.E. community that we believe could be strengthened further through a potential merger, enabling people with M.E. to access holistic, person-centred services through a single, merged organisation.​

 

Has it ever mattered what "members" of AfME think. It always used to br the case that their voice might be heard, but it didn't count.

And would not ForwardME, if it wishes to build empires, do better first to get itself properly constituted.

 

I suspect, as with AfME's absorbing of Westcare and more recently, AYME, that the ME Trust is struggling financially.

 

Thanks so much for elaborating on this.
I too have reservations about FME steer.
It was very much a personal set up, much appreciated but with a rather vague approach to who was invited to attend etc.
That was ok for what it was at the time to keep the agenda going through difficult times.
Voluntary groups and charities often have very different stances on matters.
They can both be valuable and necessary even when poles apart.
I remember Invest in ME was.not part of Forward ME.
I am of the opinion that diversity is good and mergers often mean unwelcome compromises......
Not a 'two legs good, four legs bad Orwellian situation!!!