United Kingdom: Sussex & Kent ME/CFS Society News

bottom of NHS page = "This information was supplied by Serco Global Services on 27 July 2022" below which is a Report an issue with the information on this page hyperlink. Not sure what basis for a report would be but it's not clear how this 'service' could fit within the 2021 NICE Guideline.

 

Copied from the ME services in the UK thread.

Source: The Sussex Argus
Date: August 19, 2022
Author: Zac Sherratt
URL: https://www.theargus.co.uk/news/20662184.sussex-chronic-fatigue-patients-left-home-alone/


Sussex chronic fatigue patients 'left home alone'
-------------------------------------------------
A man who suffers from chronic fatigue syndrome said people with severe cases are left to deal with it alone due to underfunding.

Colin Barton, chairman of Sussex ME Society, said home visits are needed for people bed-bound by the condition, as many currently rely on family and friends to carry out everyday tasks. He said they are 'chronically overlooked' by the NHS in Sussex, which provides “fantastic care for mild and moderate” cases at the Princess Royal Hospital in Haywards Heath, but 'nothing at home'.

Myalgic encephalomyelitis (ME), also known a chronic fatigue syndrome (CFS), is a long-term condition with many symptons, the most common being extreme tiredness. 'These are people who are housebound,' said Colin, who lives in Brighton. 'Some of them are bedbound. The services in Haywards Heath are fantastic but they only cater for mild or moderate cases.' There are currently no home visits available for those unable to visit a treatment centre, which Colin said needs to change.

ME affects around 4,000 people in Sussex, of which about 20 per cent are housebound.

Colin, 71, set up the society in 1987 after he was diagnosed with ME in the same year. 'I wasn’t very happy,' he said. 'But as time goes on you get used to it, you live within the limitations. I have to avoid stress, but I am much better than I was. There was so little support for people with ME in the area at the time.”

Sussex ME Society is promoting new guidelines for healthcare professionals produced by the British Association for CFS/ME (BACME). The report covers all aspects of chronic fatigue syndrome, from diagnosis through to care, and echoes Colin’s calls for home care.

'Service providers should be proactive and flexible in delivering services to people with severe or very severed ME/CFS, who may have particular difficulty accessing services and articulating their needs,' the report said. 'This could include home visits, online or phone consultations, supplying written communication, and supporting their applications for aids and appliances.'

Exceptional cases of ME/CFS can see a person experience severe and constant pain, hypersensitivity to light, extreme weakness, reduced ability to speak, and many other symptoms.

University Hospitals Sussex, which runs the Princess Royal hospital, has been contacted for comment.

--------
Colin has finally admitted the shortcomings ...... years after we argued with him....

 

Colin Barton, Chair of the Sussex ME/CFS Society so called Patient Group changes his tune as often as it takes for him to hang onto power. ME sufferers in Sussex are perpetually betrayed by him and his Society (a registered charity).

See what Colin Barton told journalist Kate Kelland in her long article for Reuters called 'Online activists are silencing us, scientists say', which also interviewed Michael Sharpe. Quote and Link at the bottom of this post.





Colin Barton's Sussex and Kent ME/CFS Society 'Latest News' 16th February 2022:


'TOP MEDICAL ADVISORS – FEBRUARY'

'The Sussex & Kent ME/CFS Society continues to have the support of top medics in the field including three professors. Prof Leslie Findley, Dr Alan Stewart, Prof Esther Crawley, Dr Jessica Eccles, Prof Neil Harrison and Dr Alastair Miller who is Deputy Medical Director of The Joint Royal Colleges of Physicians Training Board. They are some of the most qualified and experienced professionals that have been dealing with those affected by ME/CFS for many years. Our medical advisory team is probably the best in the field.'

https://measussex.org.uk/top-medical-advisors-february/





PROF PAUL GARNER – MARCH
By admin On 15th March 2021

| No Comments


“I think early on, people need help to avoid relapsing, because the crashes are so severe they’ll need some guidance about not overdoing it, and pacing is central to this. But they need to know that largely the illness is not necessarily a result of organ damage, which is what everybody believes. And the explanation around disordered homeostasis in the brain makes complete sense, it explains postural orthostatic tachycardia syndrome (POTS), a blood circulation disorder, the skin rashes, the brain fog, it explains all of these things. I think people need hope, and to avoid catastrophic thought. It’s so important to read recovery stories, like the ones on a website called Recovery Norway, about people who have recovered from ME/CFS. In the media, the dominant narrative on long COVID is from biologists and immunologist, but nobody is interviewing chronic fatigue physicians, and more rational, clear-headed discussion that takes into account people’s lived experiences is what we need more of.”

https://measussex.org.uk/prof-paul-garner-march/





Sussex ME/CFS Society News:

BMJ EDITORIAL 16/12
By admin On 17th December 2020

| No Comments


“Complex interventions for complex conditions are becoming the dominant healthcare reality, and if NICE is to serve any useful purpose in this arena, it needs to develop a more appropriate way to evaluate evidence. Existing evidence shows that some patients with CFS/ME do benefit from various components of rehabilitation, and our first priorities should be to identify who is likely to respond to which intervention(s), and to ensure that each patient’s needs are met.”

Lynne Turner-Stokes, professor of rehabilitation, Derick T Wade, professor of neurological rehabilitation

https://measussex.org.uk/bmj-editorial-16-12/





CFS/ME AND COVID19, DR ALASTAIR MILLER – DECEMBER
By admin On 1st December 2020

| No Comments


Some people with COVID‐19 will need support for physical, emotional and mental symptoms long after they have recovered from the acute phase of the infection. Many of those with so‐called ‘long Covid’ are likely to have a post‐viral condition very similar to chronic fatigue syndrome/myalgic encephalomyelitis for which management guidelines and a network of NHS clinics already exist.

https://measussex.org.uk/cfs-me-and-covid19-dr-alastair-miller-december/






WHAT IS GRADED EXERCISE THERAPY? – NOVEMBER
By admin On 12th November 2020

| No Comments


The most used definition of GET is ” The GET programme is a specialised, structured programme involving developing routines, activity management, exercise, pacing, rest and sleep strategies to directly change his/her physiology and lead to improvements. It is a multi-factorial treatment that affects many aspects of fatigue and seeks to alter the fatigue and symptom response.” A graded exercise programme does NOT simply mean gradually increasing the amount of exercise you are doing.

It is quite clear that one of the principal features of ME/CFS is post exertion malaise and there has always been concern that uncontrolled and unsupervised exercise may lead to a worsening of the condition. However, it is equally clear that total lack of physical activity is at least as damaging and probably more so.

https://measussex.org.uk/what-is-graded-exercise-therapy-november/





Sussex ME/CFS Society Medical Advisor Dr Alastair Miller:

DR ALASTAIR MILLER ON ME/CFS AND COVID19 – SEPTEMBER
By admin On 14th September 2020

| No Comments


“It seems quite clear that a significant number of individuals who have had an illness with their Covid19 infection have developed post viral symptoms and these do not seem to differ significantly from the post viral syndromes seen after any other viral infections. It remains to be seen how many will go on and develop full-blown CFSME. There is currently no pharmacological treatment that will improve the symptoms of CFSME but despite some controversy over trial evidence, it seems that some behavioural interventions such as cognitive behaviour therapy and graded exercise supervised by appropriately trained therapists does help some people to recover and there is no reason to believe that similar approaches may not help with post Covid19 fatigue. It is gratifying to see that specific rehabilitation efforts are being set up for this condition and hopefully good quality research as well as clinical benefit will come out of them.” See full piece at the What is ME/CFS page of this website.

https://measussex.org.uk/dr-alastair-miller-on-me-cfs-and-covid19-september/






CBT AND GET FOR ME/CFS IN THE NHS – AUGUST
By admin On 18th August 2020

| No Comments


Cognitive behaviour therapy (CBT) and Graded exercise therapy (GET) are general terms for treatment approaches. The way they are delivered will vary dependant on the relationship established between the therapist and the patient. In some services they may be delivered in a group programme setting. They cannot therefore be considered in the same way as a drug treatment where every patient receives a standardised product. It is BACME’s clinical experience that many patients benefit from CBT and GET type approaches delivered in specialist services. It is essential to keep in mind that ME/CFS does not have any evidence-based drug treatments available, hence a positive therapeutic relationship with an experienced clinician when living with this condition, is an essential component of current treatment programmes.

British Association for CFS/ME (BACME)

https://measussex.org.uk/cbt-and-get-for-me-cfs-in-the-nhs-august/






Colin Barton interviewed by Kate Kelland for Reuters 2019:

'Online activists are silencing us, scientists say'

'Colin Barton, chairman of the Sussex and Kent CFS/ME Society – a patient group in southern England – said talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life. He told Reuters that in his experience, patients who talk about having been helped by psychological or graded exercise therapies come in for abuse just like the researchers. They face accusations that they were never ill in the first place; that their condition was misdiagnosed; and that their recovery is therefore fake, he said. As a result, he said, many recovering or recovered CFS/ME patients feel forced to withdraw from the debate.'

https://www.reuters.com/article/uk-science-social-media-specialreport-idUKKBN1QU1ET



With 'friends' like Colin Barton, who needs BPS psychiatrists to gaslight, malign and demonise us.

 

Lordy lordy.....Lou B Lou!
This reminder has spoilt my day......!

 

I'm not sure he is: "Sussex ME Society is promoting new guidelines for healthcare professionals produced by the British Association for CFS/ME (BACME)." is very different to accepting the Nice 2021 guidelines.

Maybe he is being politically polite in the 'great service' or maybe it is intended to read as the same service really has the only issue of not also being accessible for severe.

I don't want to jump to conclusions and parse an article because the points of the severe ME/CFS needs will have been written to bear in mind the audience, and he is right on what he has said and used the word 'service providers' (rather than it being a push for a specific clinic to expand). This 'there is literally nothing for the illest' is an important message to have got out to a local audience and one has to laud him for that.

But I'm wary of the 'switch and bait' in the action point (BACME guidelines) - as that is the BPS model trick where they say 'all these things contribute to someone's health' everyone nods, and then say 'ergo, remove functional support to deal with these situations and give CBT for false beliefs because the cause is the person trapping themselves in helplessness'. I've italicised the themselves (reason: helplessness) because that is where the switch and bait on the cause is vs 'person is trapped by the combination of an unyielding illness in a situation that does not accommodate these disabilities' (reason: exertion needed to fix situation, exertion makes illness worse)

- which, as an aside, has now given me an idea for critique could be someone scribbling additions onto their [BPS] diagram and adding in the exertion bit, that is now known/confirmed, with arrows, to say ... ergo the solution is one-stop-shop functional support and medical adjustments written etc.

Why did it need BACME to be mentioned in the middle of this, with their model etc?

 

The BACME paper (still in 'proposed' form according to title and dated Oct 2020): https://www.bacme.info/sites/bacme.... on the Management of ME-CFS October 2020.pdf

includes that it doesn't believe in the deconditioning model (although it may be a complicating factor) anymore but dysregulation (and a bit about the HPA axis).

It does then include a lot about it's beliefs in rehabilitation:

 

so much for Mr CB's flag ship Support Charity support for Sussex services.....

Medical Advisers
Professor Leslie J Findley
Prof Findley was a consultant neurologist and clinical lead at the Essex Neurosciences Unit at Queen’s Hospital. He was also clinical lead for the Clinical Network Coordinating Centre overseeing the NHS Kent & Medway CFS/ME Service.

Prof Findley received his undergraduate medical training at the University of Sheffield, graduating MB, ChB in 1968. Between 1973 and 1981 he undertook postgraduate training in neurology at the Institute of Neurology, London and St Mary’s Hospital Medical School. He was appointed consultant neurologist at the Essex Neurosciences Unit in 1981. He was visiting consultant neurologist to Queen Elizabeth Military Hospital until its closure in 1991 and was appointed Professor of Health Sciences (Neurology) at University of London, South Bank in 1996. Prof Findley was the Clinical Director of a referral centre for patients with complex fatigue syndromes of all types. He has contributed to WHO and national guidelines on the subject of diagnosis and management of fatigue syndromes.

Dr Alan Stewart
Dr Alan Stewart qualified in medicine from Guy’s Hospital in 1976 and underwent training in a variety of medical specialities, becoming a member of the Royal College of Physicians in 1979. He has worked in the independent medical sector since the early 1980s and wrote a variety of popular books on nutrition and women’s health. His interest in CFS/ME developed in the early 1990s and was appointed to the post of medical practitioner to the NHS Sussex CFS/ME service at the end of 2012. He maintains a broad awareness of medical problems and undertakes regular training through the Royal College of Physicians as well as through the various CFS/ME medical groups and societies. Whilst the cause(s) of CFS/ME remain uncertain Dr Stewart considers that there is now a clear and common-sense pathway to help many people with this diagnosis as well as other types of fatigue using a multidisciplinary approach. He considers that the success of the service is very much due to the presence of an experienced team of physiotherapists, occupational therapists and psychologists aided by the activities of patient support groups.

Professor Neil Harrison
Prof Harrison formerly based at Brighton and Sussex Medical School, now Clinical Professor in Neuroimaging at the Cardiff University Brain Research Imaging Centre. He completed a PhD in Neuroscience at the Welcome Trust Centre for Neuroimaging (UCL), and Psychiatry training at the Institute for Psychiatry and National Hospital for Neurology. His research investigates how inflammation in the body acts on the brain to impair mood, motivation and cognition and how it contributes to illnesses like ME/CFS.







Professor Esther Crawley
Esther Crawley, is Professor of Child Health at the University of Bristol and a Consultant Paediatrician with a special interest in CFS/ME. She is the clinical lead for Bath specialist CFS/ME service for children based at the Royal National Hospital for Rheumatic Diseases in Bath which currently provides assessment and treatment for over 500 children and young people per annum.

Prof Crawley completed her medical training in Oxford, and then worked in Birmingham and Liverpool before doing her PhD at University College London and Great Ormond Street Hospital. Esther then moved to Bristol and Bath and set up the paediatric CFS/ME service.

She was Chair of the British Association for CFS/ME (BACME, 2007-2010). She set up the Royal College of Paediatrics and Child Health special interest group for CFS/ME, was on the guideline development group for the NICE guidelines published in August 2007 and the MRC CFS/ME expert working group (2009-2010).

Dr Alastair Miller
Alastair Miller was a Consultant Physician in the Tropical & Infectious Disease Unit at the Royal Liverpool University Hospital and an Honorary Fellow at the Liverpool School of Tropical Medicine 2005 until May 2014. He remains an Honorary Senior Lecturer at The Institute of Infection and Global Health at Liverpool University. Prior to Liverpool he was a Consultant in the West Midlands and Honorary Senior Lecturer in Infectious Disease at Birmingham University. He now works part time as an acute physician at the Cumberland Infirmary in Carlisle and part time in London as Deputy Medical Director at the Joint Royal College of Physicians Training Board.

Alastair trained in medicine at Cambridge and Westminster and in infectious disease in the Royal Navy, Birmingham and London. He worked with the Royal Marines in Kurdistan after the first Gulf War and was a consultant and Professor of Medicine in the Royal Navy.

He has been involved clinically with ME/CFS since his time as a registrar in the mid 1980s. He has been Chair of the British Association for Chronic Fatigue Syndrome and ME (BACME) and Principal Medical Advisor for Action for ME (AfME).

Dr Jessica Eccles
Dr Eccles trained in medicine at University of Cambridge and University of Oxford, completing a BM BCh in The History and Philosophy of Science, sparking a keen interest in philosophy of mind and brain-body interactions, and since graduation from medical school has pursued a combined academic clinical path at Brighton and Sussex Medical School. As an MRC Clinical Research Training Fellow she recently completed her PhD in the relationship between joint hypermobility, autonomic dysfunction and psychiatric symptoms and is now an NIHR Academic Clinical Lecturer. She holds honorary clinical contracts with both Sussex Partnership NHS Foundation Trust and Brighton and Sussex University Hospitals NHS Trust.

 

It is interesting that this local group, of unknown membership size, has so many medical advisors, several based at a considerable distance from its catchment area, when such as the national group the MEA only has two medical advisors.

Often BPS researchers cite ME groups that support their research, and one wonders if this group’s purpose is in part to provide statements of patient support for such research.

 

You make a very plausible observation Peter.
What is sad though , with all the above "support", 'guidance" and 'expertise', very little seems to be benefiting the local ME community of either merit or worth, especially the severely affected.

 

https://www.s4me.info/threads/united-kingdom-sussex-kent-me-cfs-society-news.1906/page-8#post-433495

Colin Barton, Chair of the Sussex and Kent ME/CFS Society, interviewed by Kate Kelland for Reuters 2019:


'Online activists are silencing us, scientists say'

'Colin Barton, chairman of the Sussex and Kent CFS/ME Society – a patient group in southern England – said talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life. He told Reuters that in his experience, patients who talk about having been helped by psychological or graded exercise therapies come in for abuse just like the researchers. They face accusations that they were never ill in the first place; that their condition was misdiagnosed; and that their recovery is therefore fake, he said. As a result, he said, many recovering or recovered CFS/ME patients feel forced to withdraw from the debate.'

https://www.reuters.com/article/uk-science-social-media-specialreport-idUKKBN1QU1ET



With 'friends' like Colin Barton, who needs BPS psychiatrists to gaslight, malign and demonise us.

 

To be fair to Colin Barton anyone standing up and saying GET/CBT successfully treated their ME/CFS will be robustly challenged to the extent that in such as social media contexts they feel they are being accused of lying or even being personally abused. It is important that we on an individual level treat anecdotes of benefit as seriously as we treat anecdotes of harm.

However anyone taking on a public role of heading up an ME/CFS charity should also recognise the facts:

• that anecdotes of harm following GET/CBT far outnumber anecdotes of benefit, and that surveys indicate significantly higher levels of harm than of benefit
• that misdiagnosis of ME/CFS may be as high as 40%
• that only 6% are likely to recover
• that the majority do not display any long term benefit from GET/CBT
• that over 50% may be harmed by GET.

On a personal level I am happy that Colin Barton experienced significant improvement in his health and we are not in a position to say that his account anything but accurate, albeit atypical. However, we can roundly condemn his advocacy for an approach that may harm more than 50% of those who try it and insist anyone publicly advocating something that only anecdotally benefits a very small number of patients first establish a way of identifying who will be helped.

 

Being "fair" to Colin Barton is not the issue. Barton disparages ME patients who disagree with him and his stance on ME services. Barton's Society were involved in establishing Sussex CBT/GET Services in 2008, and are still involved in Brighton and Sussex NHS services for ME.




The first Clinical Lead of Sussex 'CFS/ME' Services was Dr Brian Marien of the Health Psychology Unit, King Edward VII Hospital, Midhurst, West Sussex. Brian Marien is a GP and Bart's trained CBT specialist who in 2008 had two private CBT Clinics in Sussex.

Dr Brian Marien was one of the many BPS doctors at the 2002 Novartis funded 2 day conference on Biopsychosocial Medicine at which the strategies for establishing BPS medicine in the NHS were thrashed out.

http://www.margaretwilliams.me/2005/proof-positive.pdf





The second Clinical Lead of Sussex NHS 'CFS/ME Services' was Dr Michael Broughton, a GP. Dr Michael Broughton, and Phil Parker, introduced Lightning Process to the Society's members.

The 2008 Sussex CFS Society Annual Conference hosted a Lightning Process stand by the owner of a local Lightning Process Centre, Linda Morgan, called the Swallows Retreat.



Lightning Process Trainer Linda Morgan hosted a get together for her LP graduates, who all seemed to be teenage girls, some stated they had recovered from ME by doing Lightning with Linda. At the get-together at the Swallows Lightning Process Retreat were Sussex NHS CFS Clinical Lead Dr Michael Broughton and Phil Parker:



Phil Parker at Swallows
Sunday, March 1, 2009 At 8:26PM

'Phil Parker visited Swallows Retreat to meet with Dr. Michael Broughton, Consultant Specialist ME/CFS Sussex, and Colin Barton of the Sussex and Kent ME Society.

They joined Linda for a Summer barbecue in Swallows garden, looking at its best in July, and thirty graduates of the Lightning Process for M.E. at Swallows, who enjoyed the opportunity to thank Phil Parker, Developer of the Lightning Process for the difference he has made in their lives.

Some took the opportunity to swim in the pool and the party went on after Dr. Broughton and Phil Parker had to return to their respective clinics.

Dr. Mike Broughton and Phil Parker are now in consultation about further clinical trials beyond the year long one currently being undertaken with Linda's Lightning Process participants at Swallows.

https://web.archive.org/web/2009071...uk/home/2009/3/1/phil-parker-at-swallows.html




2018:

'Sussex ME/CFS Society Patron, the actress Jenny Seagrove, added: “Sussex ME Society provides absolutely vital support to those people in society who suffer this debilitating and much misunderstood condition.

“At last research is being done into ME and also into the plasticity of the brain and nervous system, so perhaps hope will be allowed to shine its light into the darkness of some people’s lives.”

https://www.gscene.com/news/sussex-m-e-society-marks-30th-anniversary/





2015:
'During the October UK CFS/ME Research Collaborative conference in Newcastle, neurologist Dr Mark Edwards announced that a team of scientists wants to test a new theory for how functional symptoms can arise from the brain.

The project, which is being funded by the Medical Research Council will involve three scientists – Dr Mark Edwards, a neurologist at the Motor Neurosciences Unit, UCL Institute of Neurology, Dr. Neil Harrison from the University of Sussex and Dr James Kilner at University College London.

'Colin Barton, chairman of Sussex ME/CFS Society, says: “We are delighted to be able to assist with this important study.”

https://www.gscene.com/news/health/me-research-study-planned/

 

Indeed. I'd be intrigued to know what is going on with him, as it is one thing many living with hope and deluding themselves for a certain amount of time that they are going to get themselves better by forcing their way through the illness - I'm unaware of anyone who has succeeded longer term.

He's used the classic sophist technique the BPS do of 'priming' the reader to all the very reasonable questions someone might have and pretending 'these horrible people throw these out so watch out for them'. It is classic queen bee level playground nonsense repurposed for adults.

He's certainly made an identity out of this. Have I just missed it or is there any other 'local group' where the figure head is making a name for themselves rather than just the group, because I've noted this to be unusual? What is their governance set-up given this? It is a bit of a mysterious entity as far as I see it

 

Yes, Colin Barton's name is always out there.

The Sussex and Kent ME/CFS Society has been a registered charity since 2000. Their three Trustees have remained the same in that time:

COLIN NEIL BARTON Chair

STEPHEN VAUGHAN Trustee

DAVID PETER BUTLER


The Sussex Society Charity income has always been below the threshold required by the Charity Commission for them to submit Accounts and Annual Reports. That threshold used to be £10,000 PA but is now £25,000 PA.

So yes, the Governance of the Society is mysterious. The policies are not voted on by members and it is not clear if the members actually vote for who should be the Chair, Treasurer, etc. I think not.

https://register-of-charities.chari...ity-search/-/charity-details/3973095/trustees

 

Yes that is a good point that even if he does believe in it helping some that is a world away from dismissing all of these issues and the observable pathways of those it doesn't for all of those reasons. And that is unacceptable. And to layer on the gaslighting and other aspects is unconscionable.

He should probably rename it - perhaps the cfs-CBT and GET group. It seems it is about hangers on wielding power in order to access 'patients' pushing only their 'therapies' in any one-dynamic group like this, not about the illness or patients. Maybe it is a great thing if there are some people in his group for whom all this works and they get such small-ratio access to these eminent people.

That's fine - I guess he has a right to run that if it costs noone else money and he isn't using mis-selling or anything. But there are reasonable questions about representing patients with ME/CFS if he has been around so long and pays no lip service or acknowledgement to these issues.

I also on looking through it's website find it quite a strange set-up focusing on the people who don't have ME/CFS like patrons and medical advisors with one photo full of men (unusual because of the male-female balance in the condition) on the about us page. Does anyone know the governance of this group? It is strange in itself that it's leader has made such a name for himself whereas many groups have a variety of people in roles and a committee etc.

I do start to think that there probably does need to be guidance suggested by ForwardME charities on governance models for support groups in order for them to become listed 'groups for patients'. Particularly because those with ME are so uniquely vulnerable due to not just illness but the opportunism and bigotry and lack of access to (well rights actually) basic things others mightn't be kept from. There is a safeguarding issue if there aren't protocols on who can represent the 'patient voice' and what that must constitute to claim that.

Given the new guideline it seems optimal timing to look into this. There is a big clean-up needed, not least because this is what it is currently due to power imbalances - and voice and representation are a big issue. What is this lady in the profile hoping for vs what might be being suggested in the meetings with healthcare following on from her example being used etc?

 

Is Dr Findley the one who almost joined the ME Association a while back? Was he with this group at that time?

 

This has now been picked up on ME Association - with a facebook post on it, where COlin Barton has commented if you scroll down it is currently at the bottom of the comments.

I don't know whether anyone has been to Hayward's Heath as that post mentions that service not taking in severe ME as the issue, so far no comments on that fb post from anyone who says they have providing feedback. I guess a worry is that services need to be the right thing as much as anything and if it is another therapist led service would sort of expect that to be the discussion if a specific service being inferred as the one to offer it?

 

And do they note who the 'Group Officers' are? and who the trustees are? I'm intrigued by the power-base on decisions

 

All Charity Trustee information for England & Wales is available via the Online Register: https://www.gov.uk/find-charity-information

https://register-of-charities.chari...ity-search/-/charity-details/3973095/trustees

COLIN NEIL BARTON Chair

STEPHEN VAUGHAN Trustee

DAVID PETER BUTLER Trustee

It's not uncommon in small Charities for the Trustees to be the Officers. If an organisation isn't membership based there is no power base of decision making outside the Trustees/Officers who are answerable only to the Charity Commission and then only in terms of meeting the Charity's legal obligations. This structure does beg various questions around the capacity of an organisation to 'speak on behalf' of anyone other than the Charity itself, it is a well known issue in UK charity structure and has been a feature of disability rights activism focused on individual organisations in the past.

 

Post copied from United Kingdom: News from BACME - British Association of Clinicians in ME/CFS


Sussex ME/CFS Society (patient charity)

5th December 2022

ME/CFS EDUCATION FOR DOCTORS

Most of our medical advisors and ME/CFS specialist clinicians based in our region are members of the British Association of Clinicians in ME/CFS (BACME). The multidisciplinary organisation that provides information, resources, education and networking opportunities to UK professionals to deliver high quality care to people living with ME/CFS.

Their new website includes some excellent guidelines written by professionals for professionals that can be downloaded.

https://bacme.info/

https://measussex.org.uk/me-cfs-education-for-doctors-2/







30TH MAY 2023

GOOD PROGNOSIS POSSIBLE

'The Sussex & Kent ME/CFS Society that works for those affected by Myalgic Encephalopathy (ME) or Chronic Fatigue Syndrome (CFS) recently asked nine specialist doctors about their opinions on prognosis.

The experts said younger people tend to have a better recovery rate, according to one third of the doctors. A third also said that a rapid onset often indicated a rapid recovery was possible.

Nearly half felt that a swift diagnosis was a key factor in prognosis as this allowed speedy intervention. Again nearly half felt that any treatment should be tailored to the individual rather than simply standardised. This reflects the different symptoms that individuals may be dealing with. Factors were cited such as environment, practical situation, the support network someone has, friendships, and assistance in place can also affect prognosis. Medical factors can include the cause of ME/CFS, how quickly it occurred, severity, how long the person had symptoms before diagnosis, and whether there are other co-occurring conditions.

There was some disagreement around overall recovery rates with one person feeling the evidence indicated only 5% of patients will recover while another felt it was 33%. This was likely to be down to the research they based their views on. Most of the doctors recognised that recovery was realistically somewhere on a continuum and in fact people would not recover to their ‘old’ lives which may have contributed towards ME/CFS in the first place.

The findings show that overall the doctors associated with the charity have a positive and realistic attitude. They support early diagnosis and intervention and this fits with current research findings which suggest GPs would like more support. They encourage a pragmatic view of recovery and we would agree that it may not always be in people’s best interests to return to the life they had.'

https://measussex.org.uk/good-prognosis-possible/






The Sussex ME/CFS Society, as usual, strongly implying that ME is a stress or lifestyle illness. The 'nine specialist doctors' are not named in this news piece, but include the Sussex Society's own Medical Advisors (who are BACME Members according to the Sussex ME/CFS Society) :

Professor Leslie Findlay
Dr Alan Stewart
Professor Neil Harrison
Professor Esther Crawley
Dr Alastair Miller
Dr Jessica Eccles


'Dr Eccles trained in medicine at University of Cambridge and University of Oxford, completing a BM BCh in The History and Philosophy of Science, sparking a keen interest in philosophy of mind and brain-body interactions, and since graduation from medical school has pursued a combined academic clinical path at Brighton and Sussex Medical School. As an MRC Clinical Research Training Fellow she recently completed her PhD in the relationship between joint hypermobility, autonomic dysfunction and psychiatric symptoms and is now an NIHR Academic Clinical Lecturer. She holds honorary clinical contracts with both Sussex Partnership NHS Foundation Trust and Brighton and Sussex University Hospitals NHS Trust.'

https://measussex.org.uk/about-us/medical-advisors/




The Chair of BACME, Anna Gregorowski, attended the Sussex Society's 2021 Conference in Brighton

https://measussex.org.uk/medical-conference-2016/