United Kingdom: Sussex & Kent ME/CFS Society News

We are very fortunate in the UK to have the British Association of Clinicians in ME/CFS (BACME) that has a membership of around 200 experienced NHS clinicians who assess and manage hundreds of people affected by ME/CFS weekly helping many towards better health. These professionals work to the current NICE guidelines.


The specialist centres should be further developed and new ones established where there are none presently.


A good example of the specialist services is the Sussex-wide ME/CFS Service.
Click to expand...
:emoji_angry::mad:! Very much a sign of what is coming for ME patients in the UK. BACME has its model and this is what its going to roll out country wide. Rehab based on dysfunction, doesn't matter if its the same thing renamed its coming to you soon.
 
Suffolkres said:
measussex.org.uk

Build on the positives - Sussex & Kent ME/CFS Society

We are very fortunate in the UK to have the British Association of Clinicians in ME/CFS (BACME) that has a membership of around 200 experienced NHS clinicians who assess and manage hundreds of people affected by ME/CFS weekly helping many towards better health. These professionals work to the...
measussex.org.uk measussex.org.uk
Click to expand...
They have 200 members and this is the best they can do?!

I have seen plenty of material produced by a single person with no medical training that was infinitely better, and it wasn't even that good it's just that at least it was coherent with reality and not a bunch of blatant nonsense.
 
bobbler said:
This Neil Riley one is interesting to see
Click to expand...

@Sly Saint Wrote:
"this page on their site of congratulations is revealing:
https://measussex.org.uk/about-us/30-years-plus/


Pass the sick bucket. 27 accolades from the great and the good, all basically quoting or paraphrasing the Sussex ME/CFS Society's own perpetually self-aggrandizing self promoting postings about itself.

The actual Brighton/Hove/Sussex ME patients voices are never heard. Unless one means the handful who perform the role of 'good' Society members praising the society. The actual ME patients of Sussex are drowned out by the voices of MPs, famous people's and elevated professionals' voices endlessly praising the faux patient group.

.
 
Colin Barton claiming that Sussex ME patients are helped by Lightning Process as late as in 2020. Colin Barton's perpetually rosy message is 'timely diagnosis and receiving the best attention possible leads to people (ME patients) making significant improvements with some able to move on to lead active lives'.

That is the cosy fiction that the Sussex Society peddles to MPs and the media - repeatedly, year after year. But, as local ME/CFS clinics don't do long term follow ups, how would they know how many Sussex ME patients 'move on to lead active lives'?



The Sussex & Kent ME/CFS Society News​

By SMEAdmin On 7th January 2020

'Fortunately, The Sussex & Kent ME/CFS Society has seen a large number of its members obtaining a timely definitive diagnosis and receiving the best attention available. This has led to people making significant improvements with some able to move on to lead active lives. Regrettably, we are also aware of many that have been less fortunate and continue to be seriously ill and virtually housebound and in need of care.

It is indeed welcome that we have good NHS specialist adult services locally that have very experienced therapists working with clinicians Dr Alan Stewart and Dr Mario Vergara-Williamson. The Brighton based NHS Children and Young people’s service is also helping youngsters and their families. Other approaches such as Yoga classes and the Lightning Process have helped a good many as well.

Research continues to progress, with ME/CFS being the only medical condition for which Medical Research Council (MRC) has a dedicated Highlight Notice. In our area, the studies led by Prof Neil Harrison and Dr Jessica Eccles participated in by members of ours and those seen at the Sussex-wide CFS/ME Service are showing some interesting findings that will increase the biomedical understanding of ME/CFS/FM that could help management strategies in the future.

Colin Barton

Chairman

measussex.org.uk

Year Change - January - Sussex & Kent ME/CFS Society

Fortunately, The Sussex & Kent ME/CFS Society has seen a large number of its members obtaining a timely definitive diagnosis and receiving the best attention available. This has led to people making significant improvements with some able to move on to lead active lives. Regrettably, we are also...
measussex.org.uk measussex.org.uk






So, 5 years on from the 2020 Sussex News above, what were the findings from studies led by Prof Neil Harrison and Dr Jessica Eccles which were, supposedly, to increase the biomedical understanding of ME/CFS/FM and help management strategies in the future?

.
 
Last edited:
Sussex ME/CFS Society Medical Advisor Dr Alastair Miller on what severe ME patients need, along with Paul Garner in the BMJ, 14th May 2025. Sussex ME/CFS Society News, May 2025:

​

​

'Patients with severe ME/CFS need hope and expert multidisciplinary care'​

By SMEAdmin On 15th May 2025

'Patients with severe ME/CFS need hope and expert multidisciplinary care. Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, write Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen.'

https://www.bmj.com/content/bmj/389/bmj.r977.full.pdf


measussex.org.uk

Patients with severe ME/CFS need hope and expert multidisciplinary care - Sussex & Kent ME/CFS Society

Patients with severe ME/CFS need hope and expert multidisciplinary care Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, write Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen...
measussex.org.uk measussex.org.uk







Sussex ME/CFS Society Medical Advisor Dr Alan Stewart Commenting on the BMJ article by Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen. The Sussex Society calls Paul Garner an acknowledged expert in the field of severe ME/CFS.


Sussex ME/CFS Society News 19th May 2025.

Patients with severe ME/CFS need hope and expert multidisciplinary care​


By SMEAdmin On 19th May 2025

Dr Alan Stewart says: “This is a timely and useful opinion piece from acknowledged experts in the field who rightly emphasise the need for an individualised and focused approach especially for severe and very severe patients who are likely to need assistance from a number of specialists. Though the NHS Sussex ME/CFS service is not able to support such patients we are all well aware of the need to remain positive and avoid patients being under-stimulated and inadvertently making unwise and unhealthy choices that delay recovery.“


measussex.org.uk

Patients with severe ME/CFS need hope and expert multidisciplinary care - Sussex & Kent ME/CFS Society

Dr Alan Stewart says: “This is a timely and useful opinion piece from acknowledged experts in the field who rightly emphasise the need for an individualised and focused approach especially for severe and very severe patients who are likely to need assistance from a number of specialists. Though...
measussex.org.uk measussex.org.uk

.

.
 
Last edited:
Lou B Lou said:
Sussex ME/CFS Society Medical Advisor Dr Alastair Miller on what severe ME patients need, along with Paul Garner in the BMJ, 14th May 2025. Sussex ME/CFS Society News, May 2025:

​

​

'Patients with severe ME/CFS need hope and expert multidisciplinary care'​

By SMEAdmin On 15th May 2025

'Patients with severe ME/CFS need hope and expert multidisciplinary care. Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, write Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen.'

https://www.bmj.com/content/bmj/389/bmj.r977.full.pdf


measussex.org.uk

Patients with severe ME/CFS need hope and expert multidisciplinary care - Sussex & Kent ME/CFS Society

Patients with severe ME/CFS need hope and expert multidisciplinary care Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, write Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen...
measussex.org.uk measussex.org.uk







Sussex ME/CFS Society Medical Advisor Dr Alan Stewart Commenting on the BMJ article by Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen. The Sussex Society calls Paul Garner an acknowledged expert in the field of severe ME/CFS.


Sussex ME/CFS Society News 19th May 2025.

Patients with severe ME/CFS need hope and expert multidisciplinary care​


By SMEAdmin On 19th May 2025

Dr Alan Stewart says: “This is a timely and useful opinion piece from acknowledged experts in the field who rightly emphasise the need for an individualised and focused approach especially for severe and very severe patients who are likely to need assistance from a number of specialists. Though the NHS Sussex ME/CFS service is not able to support such patients we are all well aware of the need to remain positive and avoid patients being under-stimulated and inadvertently making unwise and unhealthy choices that delay recovery.“


measussex.org.uk

Patients with severe ME/CFS need hope and expert multidisciplinary care - Sussex & Kent ME/CFS Society

Dr Alan Stewart says: “This is a timely and useful opinion piece from acknowledged experts in the field who rightly emphasise the need for an individualised and focused approach especially for severe and very severe patients who are likely to need assistance from a number of specialists. Though...
measussex.org.uk measussex.org.uk

.

.
Click to expand...

Has any research in any condition meaningfully demonstrated that irrational hope has any medical or psychological advantage? My personal prejudice is that accurate realistic information is better than hope.

My previous work experience with people with neurodegerative conditions such as MS or MND (ALS), is that people cope better when given realistic explanations. In this field medical professionals largely abandoned false positivity and information censorship in the last century.

Certainly in relation to very severe ME/CFS prompt management of the symptoms is far more important than any attempt at brain washing. What use is a patient hoping that they might get better, if they die of starvation in total agony because of the failure to introduce appropriate non oral feeding soon enough and because of lack of a quiet space with reduced lighting?
 
Last edited:
Lou B Lou said:

'Patients with severe ME/CFS need hope and expert multidisciplinary care'​

By SMEAdmin On 15th May 2025

'Patients with severe ME/CFS need hope and expert multidisciplinary care. Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, write Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen.'
Click to expand...
That Sussex group should be banned, and their collection of doctors should be struck off for giving advice that kills people.
Do the MEA still support them? I have lost track.
 
Peter T said:
Has any research in any condition meaningfully demonstrated that irrational hope has any medical or psychological advantage? My personal prejudice is that accurate realistic information is better than hope.

My previous work experience with people with neurodegerative conditions such as MS or MND (ALS), is that people cope better when given realistic explanations. In this field medical professionals largely abandoned false positivity and information censorship in the last century.
Click to expand...
This framing is especially appalling because it's precisely the lack of hope caused by psychosomatic ideology that makes most people miserable. They can clearly see that this is getting nowhere and that instead of it literally kills all hope they have. They keep saying it, too. It's impossible to miss, to pretend this is not the case. The lies. The lies!

And what you say here is exactly what everyone prefers, as long as serious research is ongoing. We want to be told the truth, not foolish nonsense meant to reassure the professionals.

This whole disaster will be studied for centuries if our civilization makes it through the chaos, because it's like the perfect combination of every possible mistake and ineptitude.
 
Peter T said:
Has any research in any condition meaningfully demonstrated that irrational hope has any medical or psychological advantage? My personal prejudice is that accurate realistic information is better than hope.

My previous work experience with people with neurodegerative conditions such as MS or MND (ALS), is that people cope better when given realistic explanations. In this field medical professionals largely abandoned false positivity and information censorship in the last century.

Certainly in relation to very severe ME/CFS prompt management of the symptoms is far more important than any attempt at brain washing. What use is a patient hoping that they might get better, if they die of starvation in total agony because of the failure to introduce appropriate non oral feeding soon enough and because of lack of a quiet space with reduced lighting?
Click to expand...
agree and from what I have read of the position of any proper scientific psychology literature they agree that realistic optimism is a very different thing to this toxic stuff charading under the term 'hope' that is mainly used to take advantage of the very people they put in an impossible position where they have no support by spreading rumour they could just try harder and be more positive if they wanted.

everyone should be highly suspicious of wholesale claims 'being good for all' because every population of people will follow a distribution in their needs, and indeed may well vary in that at different times within themselves (I'm sure we all had times where we just needed xtime of not thinking about 'it'). Where with the truth and reality and fact and trying to be kind to others meaning a much messier story and not able to all be so in line as their aim is rather different - so the very fact that all these people are singing so word-for-word from the same songsheet even if it was 'just' in the real idea of 'hope' (rather than some ba*****ised version of the word being used for something very toxic) it is clearly being misrepresented

And that such people are often or become often highly organised and clever at it.

No real scientific psychologist who cared about not harming health or pschologically harming others would say that the answer wasn't situational and individual, but that misinformation is a breach of trust and undermining the person targeted from informed consent on their own life choices. You can't choose if you've been misled. Because saying anything else would just be stupid from a logic point of view frankly as well as all the rest.

Oh and PS I think this is a switch-and-bait phrase for me/cfs anyway, because I often think this is all about misleading (others around a pwme) in order to remove informed consent (in patients)

and the coercion used in me/cfs means that 'they can always say no' idea being sold as an excuse for dodgy treatments of course doesn't apply when this and propaganda charading as research is being used to push misinformation that causes and/or attempts to justify said coercion, and causes a huge problem in 'research' claims based on subjective responses under circumstances commonly used by certain researchers.

I think it is time that we acknowledge that pwme have been through whatever and for whatever reasons been made an extraordinarily vulernable group by the hostile environment spreading misinformation that undermines support network and adjustments. And there is a very unusual distribution of power.

And that it also is unusual in being a condition that has attracted more than its fair share of parasites and strange people - which adds to the cross that such a large number of very normal people who happened to get an illness that affects all of them physically have to bear.
 
Last edited:
Dr Alastair Miller:
'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.'


.
Sussex ME/CFS Society Medical Advisor Dr Alastair Miller on recovery. A bizarre statement by Alastair Miller because Sussex NHS has NO service for severe and very severe ME patients. And so all the Sussex ME/CFS Society offers severe/very severe ME patients is the fatuous advice that v/severe patients need "Hope" and Non Existent "expert multidisciplinary care".

Oh, and severe/very severe patients must "remain positive" and "avoid being under-stimulated and inadvertently making unwise and unhealthy choices that delay recovery.“ That last from another Sussex Society Medical Advisor Dr Alan Stewart.

So it's clear the Sussex ME/CFS Society Medical Advisors are really tackling the tough job of helping severe and very severe ME patients in the county.

Well, no they are not - there is NOTHING in Sussex for those patients. Just deceptive and fatuous empty words that strongly imply that ME patients could recover, but when severe/very severe ME patients don't recover that it's their own fault for "making unwise and unhealthy choices that delay recovery".

No. The fault lies with the Drs who have abandoned severe/v severe ME patients.



Dr Alastair Miller
June 2025
measussex.org.uk

Recovery - Dr Alastair Miller - Sussex & Kent ME/CFS Society

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...
measussex.org.uk measussex.org.uk


.
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom