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?'




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