United Kingdom: Sussex & Kent ME/CFS Society News

Miller, as I read him , considers long coviders in the absence of evident organic damage to have ME ( without, as far as I can discern, considering the possibility of damage not yet evidenced ). It's just a symptoms game and matters such as 2 day CPET worsening found in some with ME but not so far (I think) in LC are not addressed as possible differential factors. Just a list of symptoms, which would also allow post sarcoid fatigued to pile in too, despite reason to believe the aetiology may be (partially) different. Miller hob nobs with Garner who is famously an advocate of sth which sounds rather like LP. And what has happened traditionally to LP failures - they were either told they had the wrong attitude or they didn't have ME in the first place , despite the symptoms being ME consistent. So question to Miller/Garner if sb has failed LP, was it a misdiagnosis in which case symptoms are not all and the equation of LC with ME is not necessarily valid, or are symptoms adequate to diagnose in which case either LP does not work for all sufferers or it is indeed a question of bad attitude. Straight answers may not be available since "does this encourage recovery mindedness?" may be the primary consideration. They may be honest men with fair answers but their thought might be clarified by engaging properly with the matters raised above --"but would that encourage recovery mindedness???!!!???!!).
 
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2 Lib Dem MPs have now become Patrons of the regressive Sussex and Kent ME/CFS Society.

This is worrying, because All 72 Lib Dem MPs had backed pwME by signing a letter to Wes Streeting MP to raise their concern about a lack of funding for the Final Delivery Plan for ME/CFS.

www.disabilitylibdems.org.uk

All 72 Lib Dem MPs sign letter on ME/CFS

Is the government's plan viable?
www.disabilitylibdems.org.uk www.disabilitylibdems.org.uk


And Tessa Munt, Lib Dem MP has been very pro-active for improving conditions for pwME.



It's worrying because the new Lib Dem MPs who have become Patrons of the Sussex Society may well believe, have been given the impression by Colin Barton, that the BACME-supporting Sussex Society's values align with the rest of the ME population nationwide. But that is not the case.


The Sussex and Kent ME/CFS Society (charity and so called patient group) does not represent ME patients, the Sussex Society represents BACME and it's GET-Lite 'Pacing Up' and 'Building up your Baseline', the dangerous ideology and practice of increasing activity as treatment for ME..




Alison Bennett is the Liberal Democrat MP for Mid Sussex, and John Milne is the Liberal Democrat MP for Horsham.



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measussex.org.uk

MPs for ME - Sussex & Kent ME/CFS Society

Alison Bennett and John Milne are the latest Sussex Members of Parliament who have joined the Sussex & Kent ME/CFS Society that works for those affected by Myalgic encephalomyelitis (ME) or Chronic fatigue syndrome (CFS) and Long-Covid (LC) across the region. The award-winning charity based in...
measussex.org.uk measussex.org.uk

Sussex ME/CFS Society News

'By SMEAdmin On 17th March 2026

| No Comments

'Alison Bennett and John Milne are the latest Sussex Members of Parliament who have joined the Sussex & Kent ME/CFS Society that works for those affected by Myalgic encephalomyelitis (ME) or Chronic fatigue syndrome (CFS) and Long-Covid (LC) across the region.

The award-winning charity based in Brighton has enjoyed the support of a number of MPs over the 35 years since its inception starting with Sir Andrew Bowden. Former Brighton Kemptown MP Dr Des Turner became chairman of the first All-Party Parliamentary Group for ME and along with others became patrons of the charity pressing for better services for people across the county who were badly affected by the debilitating illness that can render many virtually housebound and in need of care.'
 
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Both AFME and the MEA have long abandoned Sussex and Kent patients by acquiescing to the Sussex ME/CFS Society's promotion of psycho-behavioural ideology and the practices of Sussex local NHS ME/CFS Services.

ME patients in Sussex and Kent are silenced twice over - once by Colin Barton and his Society's Medical Advisors such as Alastair Miller, and silenced again by the casual obliviousness of the main charities to the plight of Sussex and Kent ME patients.
 
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Lou B Lou said:
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2 Lib Dem MPs have now become Patrons of the regressive Sussex and Kent ME/CFS Society.

This is worrying, because All 72 Lib Dem MPs had backed pwME by signing a letter to Wes Streeting MP to raise their concern about a lack of funding for the Final Delivery Plan for ME/CFS.

www.disabilitylibdems.org.uk

All 72 Lib Dem MPs sign letter on ME/CFS

Is the government's plan viable?
www.disabilitylibdems.org.uk www.disabilitylibdems.org.uk


And Tessa Munt, Lib Dem MP has been very pro-active for improving conditions for pwME.



It's worrying because the new Lib Dem MPs who have become Patrons of the Sussex Society may well believe, have been given the impression by Colin Barton, that the BACME-supporting Sussex Society's values align with the rest of the ME population nationwide. But that is not the case.


The Sussex and Kent ME/CFS Society (charity and so called patient group) does not represent ME patients, the Sussex Society represents BACME and it's GET-Lite 'Pacing Up' and 'Building up your Baseline', the dangerous ideology and practice of increasing activity as treatment for ME..




Alison Bennett is the Liberal Democrat MP for Mid Sussex, and John Milne is the Liberal Democrat MP for Horsham.



...........................................................................





measussex.org.uk

MPs for ME - Sussex & Kent ME/CFS Society

Alison Bennett and John Milne are the latest Sussex Members of Parliament who have joined the Sussex & Kent ME/CFS Society that works for those affected by Myalgic encephalomyelitis (ME) or Chronic fatigue syndrome (CFS) and Long-Covid (LC) across the region. The award-winning charity based in...
measussex.org.uk measussex.org.uk

Sussex ME/CFS Society News

'By SMEAdmin On 17th March 2026

| No Comments

'Alison Bennett and John Milne are the latest Sussex Members of Parliament who have joined the Sussex & Kent ME/CFS Society that works for those affected by Myalgic encephalomyelitis (ME) or Chronic fatigue syndrome (CFS) and Long-Covid (LC) across the region.

The award-winning charity based in Brighton has enjoyed the support of a number of MPs over the 35 years since its inception starting with Sir Andrew Bowden. Former Brighton Kemptown MP Dr Des Turner became chairman of the first All-Party Parliamentary Group for ME and along with others became patrons of the charity pressing for better services for people across the county who were badly affected by the debilitating illness that can render many virtually housebound and in need of care.'
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Agreed - someone from the community needs to have a word with eg Tessa Munt to explain that you can't be both supporting pwme and supporting this society and why. otherwise we will watch the same revolving door we've seen with that con over and over just happen again.

Interesting looking at these two that they are both representing a part of Sussex. So there is the question whether they realise that a lot of those running the group and directing it perhaps aren't constituents. Of course I notice there are eg green party MPs as patrons so I don't know the complication there

Is there any another ME/CFS group that covers the area?

But also one went to Cambridge and the other Oxford, and I've seen loose connections that aren't as stratightforward as 'the uni' or 'the education' but I don't know about friendship groups and connections with colleges etc
 
bobbler said:
Agreed - someone from the community needs to have a word with eg Tessa Munt to explain that you can't be both supporting pwme and supporting this society and why. otherwise we will watch the same revolving door we've seen with that con over and over just happen again.

Interesting looking at these two that they are both representing a part of Sussex. So there is the question whether they realise that a lot of those running the group and directing it perhaps aren't constituents. Of course I notice there are eg green party MPs as patrons so I don't know the complication there

Is there any another ME/CFS group that covers the area?

But also one went to Cambridge and the other Oxford, and I've seen loose connections that aren't as stratightforward as 'the uni' or 'the education' but I don't know about friendship groups and connections with colleges etc
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Colin Barton courts new Sussex MPs to become Patrons of his regressive Society. The MPs think they are 'doing good by supporting people with ME'.

When the MPs become Patrons of the Sussex ME/CFS Society they then get their info from Barton.

Then there is a disconnect between what Barton tells the MPs (BACME is Great, the Sussex NHS service is Great, Improvement Great, Yoga Great, Recovery Great, Positive Positive, Forget Severe patients we don't talk about them much (Negative), Yada Yada) - which is different from what the MPs actual ME patient constituents tell them.

ME patients are then disenfranchised when their MPs listen to Barton foremost who says one thing (promoting BACME and Pacing Up, Positive Positive etc), but not listening to their actual constituents who are rightly critical of BACME, and who may well have had terrible and damaging experiences in the NHS (which Colin Barton sweeps under the carpet) .....


I had that horrible experience years ago. Educating my MP, who then listened to Barton instead.

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Nancy Blackett said:
The Sussex Cfs society is a registered charity, not merely called a Society.

That Society does harm to ME patients nationwide, by collaborating with AFME, and previously with AYME, by publicly supporting psychosocial treatments, and by giving Esther Crawley and Alistair Miller credibility, so they can say they have patient support.

Can it really be the case that just one man is dictating all the policy and statements of an ME patient group and charity?
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Yes! He's made it his life's work......... :rolleyes: :unsure:
 
A reminder for anyone thinking of writing to their Sussex MP about what the Sussex NHS ME/CFS Service actually consists of, Links Below to the NHS Service. Please note this NHS program is approved by Colin Barton and his Sussex Society, with the Society's Medical Advisors running the NHS service.

Colin Barton 2025:
"We are immensely proud to have been involved in getting the NHS centre established and continue to work collaboratively with them."
https://measussex.org.uk/nhs-service-marks-20-years/




Lou B Lou: The Sussex NHS ME/CFS Service is clearly a goal oriented 'get fit' program which consists of 'Building Up Your Baseline' by doing increasing activities (increasing by 10 to 20% regularly), especially walking, which is recommended.



Sussex NHS:
'Building Up Your Baseline' -

'The key is to find any activity that is meaningful to you and/or that you enjoy and would like to work on as a goal. Write down your goal and make it specific, measurable, achievable, relevant to your life/situation and with a timescale.'





Lou B Lou: The NHS Service also tells ME/CFS patients that activity/exercise can 'help generate energy', and that 'the body needs stiff and tired signals for the body to adapt positively'.

The NHS Service unrealistically expects new patients to be able to tell the difference between 'stiff and tired signals' and PEM. The Sussex NHS ME/CFS Service does not even mention PEM.


There are a lot of pages to the NHS Service, with only lip service to 'do this only if you feel ready' but encouragement to create activity goals, and to engage in increasing activity and exercise, encouragement to 'get fit'.









The NHS Service protocol states
  • a manageable stiffness and tiredness after physical exertion or activity is a positive sign that your body is adapting and strengthening
    Click to expand...
  • the body needs these mild to moderate 'stiff and/or tired' signals for muscle fibres to develop and for the body to adapt positively
    Click to expand...
  • if there are no physical feelings at all, there is no strengthening
    Click to expand...




https://www.sussexcommunity.nhs.uk/patients-and-visitors/resources/patient-resources/building-up-your-baseline/increasing-your-activity-and-the-benefits
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'The benefits of regular movement and gentle physical activity'

Regular movement and gentle physical activity can help people with ME/CFS in many ways (not all may apply to you), for example, it can:
Click to expand...



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Suffolkres said:

Colin Neil BARTON personal appointments - Find and update company information - GOV.UK

Free company information from Companies House including registered office address, filing history, accounts, annual return, officers, charges, business activity
find-and-update.company-information.service.gov.uk find-and-update.company-information.service.gov.uk
View attachment 31192
So he was a director. Was he remunerated in 2000?
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Doesn't look like it from the Charity Commission records on the Society.

The Sussex Society Financial History on the Charity Commission website:
register-of-charities.charitycommission.gov.uk

SUSSEX ME/CFS SOCIETY - Charity 1082681

Charity details for SUSSEX ME/CFS SOCIETY - Charity 1082681
register-of-charities.charitycommission.gov.uk register-of-charities.charitycommission.gov.uk


For most of it's history the Sussex Society's financial accounts were not on the Charity Commission site because the income was below the threshold that the Charity Commission set as the amount of income requiring public access. That threshold used to be under £10,000 per annum. The charity commission has recently increased the threshold to £25,000 per annum.


Also note - the Sussex ME/CFS Society has had the same 3 Trustees since it became a charity in the year 2,000 (Colin Neil Barton, David Peter Butler, Stephen Vaughan). Colin Barton has been the Society Chair since 2,000. Though the Society existed as a patient group since 1987/8/9.

register-of-charities.charitycommission.gov.uk

SUSSEX ME/CFS SOCIETY - Charity 1082681

Charity details for SUSSEX ME/CFS SOCIETY - Charity 1082681
register-of-charities.charitycommission.gov.uk register-of-charities.charitycommission.gov.uk


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Sean said:
They clearly are utterly incapable of change.
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There’s no motivation for them to. Things seem to work for them, they get to feel involved and important, etc. I am interested in why they have been so resistant to accepting there may be problems though. It’s not as if people haven’t highlighted them. I guess there’s always people new to the condition who are ready to accept any help and fall for their line. I did.

The sad thing is so many have been negatively impacted by this across Sussex, both directly by the service and indirectly by its effects on wider healthcare. And soon will be in Kent by the sounds of the service being set up there.
 
hotblack said:
There’s no motivation for them to. Things seem to work for them, they get to feel involved and important, etc. I am interested in why they have been so resistant to accepting there may be problems though. It’s not as if people haven’t highlighted them. I guess there’s always people new to the condition who are ready to accept any help and fall for their line. I did.

The sad thing is so many have been negatively impacted by this across Sussex, both directly by the service and indirectly by its effects on wider healthcare. And soon will be in Kent by the sounds of the service being set up there.
Click to expand...


When I was a Sussex Society member I had about 8 phone conversations with Colin Barton. He appeared to be intent on *him* telling me 'How it is' for ME patients. He refused to hear or acknowledge about NHS medical mistreatment or abuse, he just repeated "Oh Dear, Oh Dear" and kept switching to talking about 'The Positive'. He would say
"What our members say is - things are getting better".

Well, I am a patient and from where I was (and still am) things are not getting better - things are getting worse.

Oh, and when I told him about the serious medical neglect and abuse I had been subjected to - Barton refused to acknowledge that one bit - he just asked me if I was taking any medication! When I said I had been prescribed a specific antidepressant (despite not suffering from depression) and that I'd had really horrific side effects from it ..... Colin Barton didn't acknowledge that either. He just said "Oh, lots of our members take that, and they say that helps"

It came across as 'Shut up and take the pills'

I eventually got the strong impression that the Sussex Society is simply Colin Barton and his partner David Butler (Trustees), plus their small inner circle - and that all the other members are on the outside and have no say unless they agree with Barton. It's a dictatorship.

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I don’t know if any one writing to MPs would gain any traction by mentioning the surprisingly large number of medical advisors to the charity most of who are not connected to Sussex or Kent in any obvious way. It has more medical advisors than any of the National charities and all the medical advisors are advocates of the misnamed bio psychosocial approach (rather being being psychosomatic) to treatment pushing an approach that is in conflict with all the other UK patient organisations and conflicts with the NICE guidelines.
 
Peter T said:
I don’t know if any one writing to MPs would gain any traction by mentioning the surprisingly large number of medical advisors to the charity most of who are not connected to Sussex or Kent in any obvious way. It has more medical advisors than any of the National charities and all the medical advisors are advocates of the misnamed bio psychosocial approach (rather being being psychosomatic) to treatment pushing an approach that is in conflict with all the other UK patient organisations and conflicts with the NICE guidelines.
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Some ME patient/advocates have resorted to using the term 'psycho-behavioural' instead of BPS, because it's more self explanatory.
 
Lou B Lou said:
Doesn't look like it from the Charity Commission records on the Society.

The Sussex Society Financial History on the Charity Commission website:
register-of-charities.charitycommission.gov.uk

SUSSEX ME/CFS SOCIETY - Charity 1082681

Charity details for SUSSEX ME/CFS SOCIETY - Charity 1082681
register-of-charities.charitycommission.gov.uk register-of-charities.charitycommission.gov.uk


For most of it's history the Sussex Society's financial accounts were not on the Charity Commission site because the income was below the threshold that the Charity Commission set as the amount of income requiring public access. That threshold used to be under £10,000 per annum. The charity commission has recently increased the threshold to £25,000 per annum.


Also note - the Sussex ME/CFS Society has had the same 3 Trustees since it became a charity in the year 2,000 (Colin Neil Barton, David Peter Butler, Stephen Vaughan). Colin Barton has been the Society Chair since 2,000. Though the Society existed as a patient group since 1987/8/9.

register-of-charities.charitycommission.gov.uk

SUSSEX ME/CFS SOCIETY - Charity 1082681

Charity details for SUSSEX ME/CFS SOCIETY - Charity 1082681
register-of-charities.charitycommission.gov.uk register-of-charities.charitycommission.gov.uk


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Interesting that it was a patient group before - it’s a long way back to be asking about 2000 but does anyone know if it was always run by these three and if not what it was like prior to them and how it ended up with them etc ?

It’s worth knowing that history as a lesson to be learned about what can happen and how?
 
bobbler said:
Interesting that it was a patient group before - it’s a long way back to be asking about 2000 but does anyone know if it was always run by these three and if not what it was like prior to them and how it ended up with them etc ?

It’s worth knowing that history as a lesson to be learned about what can happen and how?
Click to expand...


Colin Barton has been the Chair of the Sussex and Kent patient group since 1987. Though according to @Graham (RIP) Colin Barton took over an existing patient group and there was 'some unpleasantness'.

I am grateful to Graham for giving this insight into the running of the Sussex Society (on the link below) and on an additional online forum that Colin Barton ran (which was called Imega-e).

Graham's post, link below, and do read the next post, a follow up post by @Dx Revision Watch



Graham

Post in thread 'United Kingdom: Sussex & Kent ME/CFS Society News'

Actually the Sussex and Kent ME/CFS society was running before Colin Barton took over, and I gather there was some unpleasantness. Certainly neither Barton nor the society is very open about how it runs, and does not like to be challenged. Bob and I did try to find out how the subscription money was spent, but got nowhere. There is no voting for chairman or treasurer.

Several of us were very opposed to the promotion of the Lightning Process: that didn't go down well.

There was an online forum, but people were only allowed to talk about ME, so Bob set up a "sister" forum for general...
  • Like

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Peter T said:
I don’t know if any one writing to MPs would gain any traction by mentioning the surprisingly large number of medical advisors to the charity most of who are not connected to Sussex or Kent in any obvious way. It has more medical advisors than any of the National charities and all the medical advisors are advocates of the misnamed bio psychosocial approach (rather being being psychosomatic) to treatment pushing an approach that is in conflict with all the other UK patient organisations and conflicts with the NICE guidelines.
Click to expand...
I would hope some Sussex disenfranchised patients would contact MP'S so they see the light as opposed to the hype?
 
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