United Kingdom: Sussex & Kent ME/CFS Society News

Their work is credited with helping to establish NHS specialist services for adults and children with the condition across Sussex.

Colin Barton, chair of the ME/CFS Society said: "The support of Sussex MPs has done a lot to make the county a leading area for NHS and voluntary provision for the over three thousand people affected by this often life changing illness."
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I was dissecting this but what’s the point. It’s all nonsense. Do they mean three hundred thousand or 3000 in the region or what? The county has abysmal support. The NHS service is worse than useless. There are no charities representing us in the region.
 
Dolphin said:
Chris Ward MP for Brighton Kemptown says: 'The work of the Sussex ME/CFS Society is truly inspiring. Their commitment to advocacy, research and supporting those living with ME and CFS has been a guiding light to many. Winning the prestige award in 2025 underlines this and I look forward to seeing the continued impact of their much needed work in our community.'
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God help the people of Sussex.
 
It would be interesting to know how the costings work, if a GP refers one of their patients to the Sussex service. Who pays?

If it's the GP's own budget there might be an opportunity. Why are they spending their money on interventions that are actually worse than useless?
 
Dolphin said:
Source: The Sussex Argus
Date: March 26, 2026
Author: Samanta Gladkauskaite
URL:
https://www.theargus.co.uk/news/25965063.sussex-mps-back-cfs-charity-supporting-patients/


Sussex MPs back ME and CFS charity supporting patients
------------------------------------------------------
Two more MPs have pledged their backing to a charity supporting people
with a chronic illness.

Mid Sussex MP Alison Bennett and Horsham's John Milne have joined the
Sussex ME/CFS Society. The Brighton-based charity supports people across
the county who live with Myalgic Encephalomyelitis (ME), more commonly
known as Chronic Fatigue Syndrome (CFS) and Long Covid. The society has
a long history of cross-party political support, beginning with Sir
Andrew Bowden MBE.

Chris Ward MP for Brighton Kemptown says: 'The work of the Sussex ME/CFS
Society is truly inspiring. Their commitment to advocacy, research and
supporting those living with ME and CFS has been a guiding light to
many. Winning the prestige award in 2025 underlines this and I look
forward to seeing the continued impact of their much needed work in our
community.'
Click to expand...


Thanks for posting that @Dolphin . I can't bear to read Colin Barton's advertisements for his Psycho-Behavioural aligned Society, that so totally betrays ME patients.

It's unbearable, it leaves ME patients with no hope whatsoever, seeing MPs signing up. Colin Barton does a hard-sell of his Society to MPs, who think they are helping ME patients by becoming Patrons.

Generation after generation of Sussex ME patients being sacrificed to Colin Barton's ego.
 
Just a suggestion: if there are a few dozen pwME in Sussex & Kent willing to put their names to one, a joint letter/petition to the MP might do the trick. While a single letter from a single critical constituent might fail, collective ones can have far greater impact. I doubt the MPs who have signed up realise precisely what they've signed up to, how little organic support Barton's group has amongst patients, and just how many pwME oppose what they're doing.

If you're an MP, and 50 of your constituents write to you asking you to withdraw your support for something you hadn't given much thought to & which you presumably thought was a wholly beneficial charitable endeavour...
 
Nightsong said:
Just a suggestion: if there are a few dozen pwME in Sussex & Kent willing to put their names to one, a joint letter/petition to the MP might do the trick. While a single letter from a single critical constituent might fail, collective ones can have far greater impact. I doubt the MPs who have signed up realise precisely what they've signed up to, how little organic support Barton's group has amongst patients, and just how many pwME oppose what they're doing.

If you're an MP, and 50 of your constituents write to you asking you to withdraw your support for something you hadn't given much thought to & which you presumably thought was a wholly beneficial charitable endeavour...
Click to expand...


That Pulse removed the section on ME/CFS Management by Alastair Miller from their free virtual event for GPs, while Pulse investigates it's suitability (24th March 2026) - could be a relevant part of any letter.

'ME/CFS diagnosis and management among topics at free Pulse virtual event for GPs, Dr Alastair Miller, 24th March 2026'​

Beth

Thread 'ME/CFS diagnosis and management among topics at free Pulse virtual event for GPs, Dr Alastair Miller, 24th March 2026'

Posts moved from
UK Government Delivery Plan for ME/CFS, published 22nd July 2025

I wasn’t sure where to post this, but the article infers it’s part of the plan? A lot of people understandably furious on twitter/x, how on earth did this happen and who knew about it? Is these anything we can do? Does any one know any more about the content? https://www.pulsetoday.co.uk/news/c...g-topics-at-free-pulse-virtual-event-for-gps/
  • Like
Long Covid Advocacy reply from Pulse
Beth

Thread 'ME/CFS diagnosis and management among topics at free Pulse virtual event for GPs, Dr Alastair Miller, 24th March 2026'

Posts moved from
UK Government Delivery Plan for ME/CFS, published 22nd July 2025

I wasn’t sure where to post this, but the article infers it’s part of the plan? A lot of people understandably furious on twitter/x, how on earth did this happen and who knew about it? Is these anything we can do? Does any one know any more about the content? https://www.pulsetoday.co.uk/news/c...g-topics-at-free-pulse-virtual-event-for-gps/
  • Like





Another response from Pulse today:
'Ok, so I got a response from Pulse after I thanked them. They say they “always strive to ensure that our Pulse programmes for GPs remain aligned with current guidance and educational standards”.
This is a good opportunity for me to reply with some contacts or links. Help pls?'




.
 
Source: Sussex World
Date: March 30, 2026
Author: Lawrence Smith
URL:
https://www.sussexexpress.co.uk/new...arity-that-is-a-guiding-light-to-many-6528589


Sussex MPs support 'truly inspiring' chronic fatigue and Long Covid
charity that is 'a guiding light to many'
-------------------------------------------------------------------

Two Sussex MPs have pledged their backing to a charity that supports
Sussex residents with myalgic encephalomyelitis (ME) or chronic fatigue
syndrome (CFS), as well as long Covid.

Mid Sussex MP Alison Bennett and Horsham MP John Milne, who are both
Liberal Democrats, have joined the Sussex ME/CFS Society. The charity
said it 'has a long history of cross-party political support', which
began with Sir Andrew Bowden MBE (Conservative).

Chris Ward, Labour MP for Brighton Kemptown and Peacehaven, said: 'The
work of the Sussex ME/CFS Society is truly inspiring. Their commitment
to advocacy, research and supporting those living with ME or CFS has
been a guiding light to many. Winning the prestige award in 2025
underlines this and I look forward to seeing the continued impact of
their much needed work in our community.'

The Sussex ME/CFS Society said former MP Dr Des Turner was chairman of
the first All-Party Parliamentary Group for ME in Westminster and was a
patron of the charity. It said regional MPs have tabled parliamentary
questions and written letters to the Secretaries of State for Health and
Social Care advocating on behalf of people living with ME/CFS. The
charity said their work helped establish NHS specialist services for
adults and children with the condition across the county.

Colin Barton, chair of the ME/CFS Society said: 'The support of local
MPs has done a lot to make Sussex a leading area for NHS and voluntary
provision for the over three thousand people affected by this often
life-changing illness.'

Visit http://www.measussex.org.uk to find out more.
 
This is really disheartening. How can MP's be so hoodwinked by one maverick campaigner who completely misrepresents the situation with ME/CFS, leading to ongoing harm. What can we do about it. Maybe those of us with MP's from the same party (and any other parties they garner support from) send them some better information and a warning that their colleagues are being misled.
 
Alastair Miller's 2025 piece on 'Recovery' on the Sussex ME/CFS Society site has just gone '404 Not Found'.

I wonder why? A glitch? Or timely convenient track covering? The Society keeps a tight rein on the narratives promoted on it's site. And Alastair Miller is now the public media face of the 'ME is a Psycho-Behavioural condition' movement, certainly since NICE 2021 was published. The loss or removal of this article by Alastair Miller deprives ME patients of evidence of the Sussex Society's slippery stance and collaboration with the Psycho-Behavioural movement.



Fortunately I have a copy of this (slippery) article, which can no longer be read on the Sussex ME/CFS Society site, but can be read here:


https://measussex.org.uk/recovery-dr-alastair-miller/

'Recovery– Dr Alastair Miller'

'BySMEAdmin On 30th June 2025


'Recovery from illness is an important concept that implies an individual has achieved the same state of health, function and well-being that they enjoyed prior to the illness or event that made them unwell. Both physical and psychological aspects of health are involved. Recovery may be partial, meaning that they are better than they were at the peak of their illness but still have some adverse health issues or total/complete, implying that their health, functional and well-being status is exactly as it was prior to the illness.

Many factors will contribute to recovery and these can be divided into those related to the illness, those relating to the patient and those related to external contextual forces. Illness features, would include the natural history of the disease, the availability and acceptability of treatment and the acute or chronic nature of the illness. Patient factors would include previous physical or mental health issues (often referred to as comorbidity) and external factors would include social factors such as relationships, financial pressure etc.

Recovery from MECFS is extremely variable and will be affected by all the above factors. It is essential that those affected by MECFS are aware that full recovery is possible whatever the severity of the condition notwithstanding the negative messages propagated by some organisations and websites.

Many individuals who suffered with Covid (particularly with severe infection) developed so-called “end-organ damage” giving rise to lung fibrosis, kidney damage or heart muscle damage. Many emerged from intensive care units with post-ICU syndrome. However, the vast majority of those with protracted symptoms after Covid (Long Covid)actually have MECFS and there is no reason to think that their recovery will be any different from those with MECFS arising as a sequel to flu or glandular fever or any other viral infection.

Recent publications are useful as they describe the different experiences of illness and recovery affecting those with post ICU Covid and those with Long Covid. They make the point that recovery in one group was aided by the fact that theirs was seen as a “legitimate disease” as opposed to those with Long Covid. This feeling of striving for legitimacy will be well known to many with MECFS and important lessons are to be learnt from these differing experiences.'


Ref: Rethinking ‘Recovery’: A comparative Analyses of Experiences of intensive care with Covid and Long Covid in UK – '
 
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