United Kingdom: Sussex & Kent ME/CFS Society News

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.
 
Trish said:
Oh dear. Awarding bodies need to do better investigation before giving out awards.
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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 prestigeawards.co.uk
Part of this media company
fenicemedia.com

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 fenicemedia.com

So I’m not sure I’d call them an awarding body as much as a self promotion club
 
Dolphin said:
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.
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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.
 
Cinders66 said:
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.
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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).
 
CamTi said:
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).
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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
 
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."

www.theyworkforyou.com

Chronic Fatigue Syndrome: Health Services

Department of Health and Social Care written question – answered at 20 October 2025
www.theyworkforyou.com 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.

.
 
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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.



measussex.org.uk

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 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.”

.
 
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?
 
This survey by MEActionUK 'Your experience of ME services' was submitted as evidence to NICE.




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'


chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://web.archive.org/web/20210203203506id_/https://www.meaction.net/wp-content/uploads/2019/10/Appendix-6-Your-experience-of-ME-services-report-by-MEAction-UK.pdf

.
 
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Cinders66 said:
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.
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To be fair that is a problem with those doing the commissioning of services not the clinics (the clinics have a whole load of other problems).

Getting the Integrated Care Boards to both understand the needs of the populations they serve and what services are appropriate may be the best route to change. Things like the AfME Big Survey could help here.
 
The deeply worrying Sussex NHS ME/CFS Service protocol. Heaven help new ME patients in Brighton/Hove and the rest of Sussex.

'Building up your Baseline, Increasing your activity and the benefits'

'Sussex NHS ME/CFS Service uses the term 'Building Up Your Baseline', with detailed instructions. Edit Add - there is No Reference to PEM in these NHS ME/CFS Sussex Services Pages.


Read extracts here:

Lou B Lou

Post in thread 'UK BACME ME/CFS Guide to Therapy 2025'

Sussex NHS ME/CFS Service uses the term 'Building Up Your Baseline', with detailed instructions. Edit Add - there is No Reference to PEM in these NHS ME/CFS Sussex Services Pages.

The Building Up Your Baseline link is at the bottom of the page on this link.

https://www.sussexcommunity.nhs.uk/...lomyelitis-me-and-chronic-fatigue-service-cfs
Building up your Baseline (Page 1)

'A diagnosis of mild-moderate...
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  • Like

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I am not surprised to see Anna Gregorowski (Chair of BACME- when I last looked) praising them.

But Dr Vicki McKeever as well ...

You will not be surprised to know that Graham McPhee and Bob Courtney were kicked out of Colin's group. This was prior to me joining Graham's Crowborough group (now High Weald).
 
Source: Sussex Express
Date: November 24, 2025
Author: Colin Barton
URL:
https://www.sussexexpress.co.uk/community/nhs-service-marks-20-years-5414128


NHS service marks 20 years
--------------------------

During November the Brighton based Sussex ME/CFS Society that works for
those affected by Myalgic encephalomyelitis (ME) or Chronic fatigue
syndrome (CFS) across the extended Sussex area is highlighting the
twenty year anniversary of the NHS Sussex specialist ME/CFS Service that
has been operational since 2005.

The ME/CFS centre was established following months of consultation
between the Sussex ME/CFS Society and the health authorities after
hundreds of people affected by the debilitating illness and their GPs
were surveyed and clearly called for a specialist service be set up to
assist with diagnosis and run management courses.

The service that has a staff of seven including a specialist physician
and occupational therapists along with physiotherapists and a
psychologist has dealt with over eight thousand referrals during the
past 20 years and is considered to be a leading regional ME/CFS centre
in the UK.

Dr Alan Stewart, ME/CFS specialist says: 'Successful treatment depends
upon a correct diagnosis and matching the treatment to suit the patients
circumstances. This ideally address all of the predisposing,
precipitating and in particular perpetuating factors in the ME/CFS.
Accordingly the response rate and time frame are very variable. That
said, for some patients whose illness has followed an acute infection
recovery may be relatively quick. Having an experienced and well-staffed
team is essential.'

Colin Barton, chair of the ME/CFS Society says: 'We are immensely proud
to have been involved in getting the NHS centre established and continue
to work collaboratively with them. They have helped many people to
manage their illness and a good number to significantly improve with
some able to move on to lead reasonably active lives.'
 
Dolphin said:
Source: Sussex Express
Date: November 24, 2025
Author: Colin Barton
URL:
https://www.sussexexpress.co.uk/community/nhs-service-marks-20-years-5414128


NHS service marks 20 years
--------------------------

During November the Brighton based Sussex ME/CFS Society that works for
those affected by Myalgic encephalomyelitis (ME) or Chronic fatigue
syndrome (CFS) across the extended Sussex area is highlighting the
twenty year anniversary of the NHS Sussex specialist ME/CFS Service that
has been operational since 2005.

The ME/CFS centre was established following months of consultation
between the Sussex ME/CFS Society and the health authorities after
hundreds of people affected by the debilitating illness and their GPs
were surveyed and clearly called for a specialist service be set up to
assist with diagnosis and run management courses.

The service that has a staff of seven including a specialist physician
and occupational therapists along with physiotherapists and a
psychologist has dealt with over eight thousand referrals during the
past 20 years and is considered to be a leading regional ME/CFS centre
in the UK.

Dr Alan Stewart, ME/CFS specialist says: 'Successful treatment depends
upon a correct diagnosis and matching the treatment to suit the patients
circumstances. This ideally address all of the predisposing,
precipitating and in particular perpetuating factors in the ME/CFS.
Accordingly the response rate and time frame are very variable. That
said, for some patients whose illness has followed an acute infection
recovery may be relatively quick. Having an experienced and well-staffed
team is essential.'

Colin Barton, chair of the ME/CFS Society says: 'We are immensely proud
to have been involved in getting the NHS centre established and continue
to work collaboratively with them. They have helped many people to
manage their illness and a good number to significantly improve with
some able to move on to lead reasonably active lives.'
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Hum, our Specialist Clinic in 2014 was running at 1,400 referrals a year!

In earlier days, 2006, Dr Mitchell focused on the severely affected, which amounted to about 1/3 of referrals. Referral rate then was 300-400 per year, so approx 100 patients and domiciliary support home visits were possible.

So fo Kent and Sussex do domiciliary and severely affected?
What are their stats and annual change audits I wonder?
 
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