United Kingdom: News from Forward-ME Group

When I was diagnosed here in the UK in the early 1990s, I seem to recall both ME and CFS being used. If I remember correctly the Infectious Disease Consultant who formally diagnosed me used ME whereas my GP was strongly in favour of CFS. He was surprisingly aware of current research, but argued that ME was inaccurate because there was no evidence for neuro-inflammation and that CFS was a neutral term about aetiology making it preferable given our current state of knowledge. I am not sure that CFS was, even given our knowledge then, ever a particularly accurate description, but my GP then saw it as totally neutral rather than implying a psychogenic origin.

Given both were in general use I felt able to use the one I personally preferred, ME.

 

The Royal Colleges report in 1996 recommended the name be CFS and ME be dropped. CFS on its own was what then used almost exclusively from then to more than a decade later. Sometimes there were sops and CFS/ME was used. The BPS school pretty much never used ME/CFS. Around 2011 ME/CFS started to be used in the US and it has taken over internationally in the last number of years. For 15+ years up to 2011, ME was pretty much never used in formal US publications/research papers.

 

Pediatrics was exclusively CFS until very recently

 

2001 - my diagnosis was Post Viral Fatigue Syndrome (PVFS), following a sudden onset viral infection
Improvements, and a recovery of sorts was made over 5 years. But I never returned to 100% pre infection health.

2013 - following ‘relapse’, caused by Sepsis, my GP has only ever referred to cfs - that is plastered all over my medical records.
The clinic did, however, diagnose me with CFS/ME

and I use M.E.

 

Minutes from April Steering Group meeting: https://forward-me.co.uk/13th-april-2022/

 

"APPG Report. Charles advised publication is due to be launched on May 25th at 1530 at Portcullis House, Westminster."

I don't know anything about this.

 

When the APPG was restarted, they were investigating 4 or more topics, for info see thread entitled
"UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward"

See #5 for first topic info Biomedical Research and funding March 2020

#52 re Children and the problems they encounter

Other topics incuded Medical Education, DWP/benefits IIRC

 

Presumably this report will be a summary of their findings from these topics that they have investigated.


ETA: Summaries of meetings can be found on MEA website eg https://meassociation.org.uk/2020/0...dical-research-meeting-summary-17-march-2020/

and info on subjects covered eg
https://meassociation.org.uk/2020/10/appg-on-me-invite-your-mp/

 

The APPG pages haven't been updated in a while and minutes are not routinely published there.

 

Interesting:

1. Comparable Funding Research:

• Peter issued a paper on his recent research into funding compared to other charities supporting western chronic diseases.
• This clearly illustrated how radically under-funded we are based on expenditure per person, such as..
• Multiple Sclerosis @ £311 per person
• Parkinsons Disease @ 300
• Cystic Fibrosis @ £1,500
• ME @ £10 !
• Further studies are to be carried out and we will then submit the findings to the boards of our main charities to open up further strategic discussions.

Edited to add: I've heard that there is an error in the minutes:
This is not research funding as stated - it is charity spending.

 

With regard to the last point, I have to wonder whether this is the best approach. I would have thought there are more important battles.

1. DSHC:

• Positive discussions with Dr Jenny Wenman, Claire Stewart and Wendy Lippman have taken place.
• This is primarily an engagement exercise and they were unable to provide dates on publication of their findings and conclusions.
• In summary we are seeking (1) A National Strategy (2) Detailed Proposals/Plans (3) Programme (4) Budgets, and (5) Senior Leadership, addressing the short, medium and long-term approach to research, support/care and advocacy/education.
• We specifically requested regional ‘centres of excellence’ where PWME can receive expert, specialised support and advice from a multi-disciplinary team. We pointed them towards Suffolk, Essex and the Isle of Man as potential examples of this.
• We also requested that their project refers solely to ‘ME’ and not ‘CFS.’

 

Well, it looks to be a continuation of a policy decision of theirs that was made previously, https://www.s4me.info/threads/united-kingdom-news-from-forward-me-group.16000/page-8#post-404442

 

OK, but in this case it appears to be not just internal but also telling the Dept of Health and Social Care how to do things. NICE didn’t use ME alone.

 

I wonder does the following suggest any internal divisions/disputes? The former could easily be down to workload issues; that could be the case with the latter too of course:


Back

1. 1. New Steering Group Members:
   • Nina Muirhead has stepped down and Opal Webster-Philp attended this part of the meeting in order to recommend we consider seeking a replacement who can continue to provide professional medical input.
   • Sonya Chowdury has stepped down and is replaced by Helen Winning, heading up support and care.

Edited to add: I didn't recognise that the person replacing Sonya is also from her charity which suggests it's less likely there is a rift than if the charity was stepping back from the project

 

It is mostly due to workload issues in the case of Nina, but there have been some disagreements. PAG (through Opal) rightly raised the issue that having a clinician involved in the NICE implementation work is vital given Nina's departure.

 

As I recall, there are no doctors involved in the plans for the Isle of Man services. Not uptodate on the other two: years ago, Essex was terrible (under the influence of Peter Denton White with members of Essex service writing to the BMJ making suggestions ME was a meme, generally wouldn’t support disability claims; Chaudhuri was seeing some patients for a while but he’s gone). Have to wonder whether these should be promoted as ideals to aim for.

 

I suspect it is also work volume with Sonya as well. Plus I think Helen may live nearer London and used to be on Forward ME for ME Trust in Countess of Mar's days.

Would be great to have more medical input than just Charles, but who is there who would have time? It may be more productive to ask for input on particular issues.

 

I didn't recognise that the person replacing Sonya is also from her charity which suggests it's less likely there is a rift than if the charity was stepping back from the project

 

I've heard that there is an error in the minutes:
This is not research funding as stated - it is charity spending.