United Kingdom: News from Forward-ME Group

MBailey said:
@MEMarge - apologies for the delay in getting these to you, we've been rather busy the last couple of weeks with all the various things going on, so thanks @PeterW for the nudge!

Attached are Denise’s notes made during the BACME conference and these were presented to Forward-ME for discussion.
Please note these are not formatted or presented in a way that was for public dissemination and are provided here raw and unfiltered. (Note - I have made 2 edits to remove personal information that could identify patients).

Needless to say MEAction UK have continued serious concerns over both BACME and their involvement with Forward-ME. Following a decision by some members, for Forward-ME to work closer with BACME, MEAction UK withdrew from the group.
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Thank you so much @MBailey
 
Jonathan Edwards said:
Vikki McKeever raises the point of inadequate medical input to services which seems good. I agree that the use of a dysregulation model as a 'basis for therapy' is worrying. The only basis for therapies when we actually have some will be reliable evidence, not any form of theory.
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In Wales we could really use a sound critique of the Dysregulation theory. We have been objecting to its use in the new post viral services (for ME, CFS PVFS, & LC) that are being developed. We have been desperate enough to speak out publicly against one service, after our offer of co-production was refused twice. https://wames.org.uk/cms-english/cwm-taf-uhb-primary-fatigue-service We are not scientists and my cognitive abilities fluctuate, so we need more info. I agree an alternative service model is also needed. While the physios for ME book is really useful, a NICE based template would fill a gap and is the only thing that mght be seen as a valid rival to BACME. Jan
 
WAMES enquiries said:
While the physios for ME book is really useful, a NICE based template would fill a gap and is the only thing that mght be seen as a valid rival to BACME. Jan
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There are two problems with the NICE guideline. One is that it does not intend to cover service provision, just treatment modalities. The other is that it caved in and di make some recommendations for service provision that aren't very good. Charles Shepherd wanted consultant led clinics. That was not written in. The bit about multidisciplinary teams is meaningless.

If you want a sensible 'template' I think it has to be created from scratch. I am happy to try to help with all these things but I am not very good at organisational things.
 
Jonathan Edwards said:
There are two problems with the NICE guideline. One is that it does not intend to cover service provision, just treatment modalities. The other is that it caved in and di make some recommendations for service provision that aren't very good. Charles Shepherd wanted consultant led clinics. That was not written in. The bit about multidisciplinary teams is meaningless.

If you want a sensible 'template' I think it has to be created from scratch. I am happy to try to help with all these things but I am not very good at organisational things.
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'I hope the here's one we did earlier, released soon might be useful'
Servic3 proposed provision, 2 years in the making...... now resting with the ICB under April 2022 Health Act.
 
There was a ForwardME research subgroup meeting today to discuss the DHSC delivery plan. There was a lot of consensus that many of the proposals were unlikely to produce anything much and that we needed some tangible evidence that the MRC research grant strategy had changed usefully.
 
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Useful ForwardME service subgroup meeting today. The government may be in cloud-cuckoo land but the advocacy groups are talking constructively and some useful suggestions emerged about contacting key people. Sonya has a lot going on so Clare Ogden joined us and I think she found it useful to get up to speed on the group discussion. I shall be seeing Sonya next week. If everyone knows what everyone else thinks I think it will make it easier to grasp real opportunities when they come along.
 
Am glad that Forward ME is alive and contributing. There have been some losses of personnel but pleased to see you there @Jonathan Edwards.
The Countess of Mar is retired and Janice and Bill Kent of ReMEmber also retired and ReMEmber closed down I think. Charles used to attend regularly and Sonia. Good to hear useful suggestions are emerging and contacts being made.
 
meassociation.org.uk

Forward ME: AGM and Guest Lecture, register to attend! - The ME Association

Forward ME's upcoming AGM will take place on Zoom on […]
meassociation.org.uk meassociation.org.uk

Upcoming AGM and guest lecture

​

Date: Thursday 5th March 2026

Time: 14:15 – 14:45 (GMT) – Annual General Meeting

15:00 – 16:00 (GMT) Talk by Tahlia Ruschioni on the Bateman Horne Center Clinical Care Guide.

(People are welcome to join at 15:00 for the talk)

Location: Zoom meeting

Note that the register to attend button links to a url that needs editing. The correct link should be https://us06web.zoom.us/meeting/register/8NQ6EMUqTMWt2gN54JDGtg#/registration
 
As far as i can see, the provenance quality of this Bateman Horne Clinical Care Guide is uncertain.

The World ME Alliance Pilot for a Medical Education Hub uploaded it - with many other materials - as "needed" by doctors everywhere. All endorsed as from trusted reputable sources. Their pilot hub is "designed to guide healthcare professionals to reliable, evidence-based resources".

It offers several languages, inviting feedback with a contact form. But I doubt the Alliance vetted it all. That would be a massive job. A NICE-scale procedure.

The S4ME discussion thread for this got sidelined in some other business at that time. So this Hub pilot remains to be discussed. Meanwhile it places the Bateman Horne Care Guide at the top of the top four. Then the CDC Toolkit, then the Mayo Clinic Proceedings, then the UK's NICE Guideline.

Where does Forward-ME stand on this Guide?

In New Zealand the dire global need for Hospital-Care Plans appeared drastically adulterated, with no overdue evaluation of the evidence relied on, nevertheless. The resulting document links through to another document by the Bateman Horne Center.

"We need that clinic to be a shining star of rationality about ME/CFS, but it seems to be a long way away from that". Discussion needs to fathom why some of us people won't evaluate evidence. As if denying over-valued evidence is aligned with heavyweight denial of illness.

Edit: The clinic does good things but its a mixed bag.

Edit - replaced "provenance" with "quality" as my sense of "provenance" is obscure
 
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bicentennial said:
As far as i can see, the provenance of this Bateman Horne Clinical Care Guide is uncertain.
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If by provenance you mean where is it from, I assume it is genuinely from Bateman Horne. If you mean quality assurance then, having just looked through, I think it is terrible. It is a sort of BACME Guide to Therapy for biobabblers. It rambles on about politically correct concepts and then plunges in to make believe pathology and treatments.

bicentennial said:
Where does Forward-ME stand on this Guide?
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A good question. I don't know where this talk originated from. I can see if someone knows this afternoon.
 
Thankyou. I wasn't so sure last year when I tripped over the reputable World ME Alliance endorsements, and the reputable Bateman-Horne publications. Then I could not say it is tripe.

But these endorsements appeared to rely on reputable, authoring ownership. Rather than rely on any laborious, independent, scientific evaluation for quality of evidence. Clinical vetting fell short. As if reputable ownership was substituted for the scientific vetting of its evidence-base.

To me, the authentication of scientific and clinical claims requires evaluation of evidence. So many endorsements in question seem to rely instead on the reputation of owners & authors.

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  1. Place of origin; derivation.
  2. The history of the ownership of an object, especially when documented or authenticated. Used of artworks, antiques, and books.
  3. The records or documents authenticating such an object or the history of its ownership.
Provenance is the chronology of the ownership, custody or location of a historical object.

The term was originally mostly used in relation to works of art, but is now used in similar senses in a wide range of fields, including archaeology, paleontology, archival science, economy, computing, and scientific enquiry in general.

The primary purpose of tracing the provenance of an object or entity is normally to provide contextual and circumstantial evidence for its original production or discovery, by establishing, as far as practicable, its later history, especially the sequences of its formal ownership, custody and places of storage Continued in Wikipedia

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Like a citation, then
 
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