United Kingdom: Sussex & Kent ME/CFS Society News

[Cinders66]

So sad that people who could be powerful ambassadors in the field were/are not because Colin patient rep has got in their first telling them how great BACME & rehab is for CFS & how good the nhs service is, despite it explicitly, when I last looked, excluding the severely affected and no Treatments have emerged for those devastsd by the illness over a time period where Multiple Sclerosis has seen 20 disease modifying meds.

 

[hotblack]

Oh dear. Awarding bodies need to do better investigation before giving out awards.

As far as I can tell it’s an odd organisation, that seems to be funded by but also promotes small businesses and has some sort of magazine. Their website is an odd one too

Prestige Awards Nomination Form and Winners | Prestige Awards

The prestige awards allow you to showcase your business achievements within your community. The process is simple, submit your nomination first....

prestigeawards.co.uk

Part of this media company

HOME - Fenice Media

Fenice Media is a UK-based media group with an international presence, the company provides news & resources to the legal and travel sectors.

fenicemedia.com

So I’m not sure I’d call them an awarding body as much as a self promotion club

 

[Peter T]

The charity that is considered to be a leader in the field has worked tirelessly for those who have been affected by Myalgic encephalomyelitis (ME) or Chronic fatigue syndrome (CFS) for over 35 years and continues to work closely with local NHS specialist services that the organisation
helped establish some years ago.

Considered by whom? Not by the other ME charities or the ME community as a whole.

Their parasitic relationship with a narrow group of partisan clinicians/researchers with an identifiable specific bias is illustrated by their high number of medical advisors, larger than most national charities. Why have they, a local charity, had/have medical advisors based in Bristol, in Liverpool, etc with no obvious local connections? Why does it seem that they provided patient endorsement and patient advisors for research nationally, some projects taking place a hundred miles or more away.

 

[Peter T]

Why would a Bristol based researcher say, seek input from adult patients based in Sussex or Kent, rather than from those based in the South West?

 

[CamTi]

So sad that people who could be powerful ambassadors in the field were/are not because Colin patient rep has got in their first telling them how great BACME & rehab is for CFS & how good the nhs service is, despite it explicitly, when I last looked, excluding the severely affected and no Treatments have emerged for those devastsd by the illness over a time period where Multiple Sclerosis has seen 20 disease modifying meds.

The service recently discharged me on the basis I am severely affected and they aren't commissioned for severe/very severe patients. They directed my friend who spoke to them on my behalf to the ME Association helpline (when she asked who was supposed to support me if they weren't).

 

[hotblack]

Sorry you’ve been through this experience @CamTi it is sadly not at all uncommon

 

[Cinders66]

The service recently discharged me on the basis I am severely affected and they aren't commissioned for severe/very severe patients. They directed my friend who spoke to them on my behalf to the ME Association helpline (when she asked who was supposed to support me if they weren't).

It’s astonishing that from 2007 these clinics were simply allowed to essentially put up a sign saying we don’t do severe m.e & get away with it. It would be interesting to know if it happens elsewhere in the NHS. I know dementia is poorly cared for medically and left to GP’s who are variable/ detached, I would be interested to know, when people become weak and housebound, with multiple sclerosis, What does their Care look like? And how comprehensive is it. Only by looking at other severe illness can we see what is standard and what is substandard

 

[Lou B Lou]

Sian Berry MP (Brighton Pavilion), 20th October 2025:

"To ask the Secretary of State for Health and Social Care, if he will hold discussions with the British Association of Clinicians in ME/CFS (BACME) on the geographical availability of regional specialist services for ME/CFS; and if he will undertake a mapping exercise to list the areas that (a) are and (b) are not covered."

Chronic Fatigue Syndrome: Health Services

Department of Health and Social Care written question – answered at 20 October 2025

www.theyworkforyou.com

Sian Berry, MP for Brighton Pavilion, yet another Brighton MP being a puppet for Colin Barton of the Sussex ME/CFS Society so-called patient group.

Colin Barton even drives a wedge between Brighton/Sussex ME patients and their own MPs. The MPs believing Barton's BPS drivel and doing his bidding, sidelining the actual constituents.

Barton has been recruiting Sussex MPs for promotion of his sham society/patient group, for his psycho-behavioural agenda, decade after decade.

When having to choose who to believe, constituents who try to inform/educate their own MPs about ME, or Mr Barton with his glossy-but-false charity facade - the MPs believe Barton!

When the CFS clinics first started up, back in the mid 2,000s Barton was in there, aiding Peter White in promoting them and woe betide any ME patient who pointed out the clinics were not in our interests.

And he's Still Doing It.

The Sussex ME/CFS Society perpetuates a Shameful Betrayal of ME patients in Sussex, and all over the country.

.

 

[Lou B Lou]

And the Under Secretary of State for Public Health and Prevention praising the Sussex Society:

So both the MPs' (Sian Berry) Commons Question AND the Under Secretary's Commons Response appear to have been mediated byColin Barton for his sham Patient group/Society.

35 Years + - Sussex & Kent ME/CFS Society

Colin Barton – Chairman Sussex & Kent ME/CFS Society marked it’s 30th anniversary during 2017. We were granted registered charity status in 2000 and have received support from the National Lottery. The charity became one of the most successful ME/CFS organisations in the UK and the chairman...

measussex.org.uk

AshleyDalton MP, Parliamentary Under-Secretary of State (for Public Healthand Prevention):

“I am impressed to read of Sussex and Kent ME/CFS Society’s work, including supporting people with fibromyalgia and long COVID. The government is aware of the devastating effect these conditions can have.”

.

 

[Peter T]

I had thought, perhaps wistfully, that Colin Barton would run out of steam and given the Society’s public face is very much him that it would gradually fade away too. Unfortunately he seems to have developed a fresh impetus and is reasserting his ‘bps’ biases on a nationally stage.

I hate to sound like a conspiracy theorist, but is he somehow being used as part of the ‘bps’ backlash against the ‘new’ NICE guidelines and the understanding of ME/CFS endorsed by virtually every other ME/CFS charity, particularly by all the national ones, and by researchers looking at the biological underpinnings of the disease?

 

[Lou B Lou]

This survey by MEActionUK 'Your experience of ME services' was submitted as evidence to NICE. If anyone can find it in the NICE Evidence page?

Unfortunately the link to the Survey results Report PDF from the MEActionUK site just takes me to a 'Page Not Found.
Looks like this page has been hidden or no longer exists.' on the MEACtion site.
https://www.meaction.net/wp-content...ence-of-ME-services-report-by-MEAction-UK.pdf


The survey Report document is also referenced on this MEACTion UK page (date 10/2019), but again, the link given goes to 'Page not found'.


SURVEY FINDS U.K. SPECIALIST M.E. SERVICES NOT FIT FOR PURPOSE

'#MEAction UK survey of 1900 people with ME found that UK specialist ME services are not fit for purpose. 83.3% of respondents felt their local service should be adapted or closed and rebuilt with patient input. The results were submitted to NICE as part of our response to their call for evidence'

On the Timeline, down the page:

NICE | #MEAction

The ME/CFS guideline published by the NICE defines the treatment that people with ME receive. #MEAction campaigns for accurate and compassionate guidelines.

www.meaction.net

 

[Nightsong]

The MEAction UK survey and its appendices can still be found via archive.org - the feedback Appendix VI is here:

Appendix 6: Your experience of ME services - report by MEAction UK