United Kingdom: Sussex & Kent ME/CFS Society News

Dolphin said:
For what it is worth:

Source: Sussex & Kent ME/CFS Society
Date: August 9, 2024

[Press release]

Very Severely affected ME Patients ----------------------------------

Severe ME Awareness time this year coincides with a British coroner's report (9/8) on the death of a 27 year old woman while suffering from Myalgic encephalomyelitis(ME) also known as Chronic fatigue syndrome(CFS).

Around 20% of those affected by the often life changing illness are severely affected being housebound with a few being bedbound and reliant on others for care. While it is unusual for people to die with the illness it is not unknown and this has occurred a couple of times in Sussex over the years.

Those who are mildly or moderately affected are well served by an experienced specialist multidisciplinary team based in Haywards Heath that receives around 40 new referrals per month. The service is not however commissioned to accept severely affected patients.

The Sussex & Kent ME/CFS Society is calling for NHS specialist services for those who are severely and very severely affected across the county.

Those very severely affected were often referred to a specialist centre in Romford but that closed some time ago leaving nowhere for very seriously ill patients to be sent to.

Professor Leslie Findley who was the lead consultant at the Romford Centre says: 'Nothing new has come out of this case, and a coroners statement may alter the attitudes of the powers that be, but will not alter medical and scientific understanding. The whole issue of severe, and in particular, very severe CFS/ME was discussed in the 1990s. Indeed, the last labour government launched an ME initiative from the one NHS unit that was set up to manage those with severe and very severe CFS/ME. This unit did this successfully, but unfortunately funding was not continued. We were unable to get support from local health services, central government and in particular, from the charity sector. Nobody was interested. It is a myth to say that severe and very severe cannot be managed to the advantage of the sufferer, but it does require designated beds in specialist units with appropriate medical and therapeutic teams. Until this happens, the case we have before us is going to be repeated ad infinitum. The knowledge does exist how to manage these unfortunate people with very severe ME, but it cannot be done from general practice or general medical wards.'

Professor Leslie J Findley Previously Director National Centre for Fatigue Syndromes Essex Neurosciences Unit

The Sussex ME/CFS Society is calling for NHS specialist services for those who are severely and very severely affected across the county.

Colin Barton of the ME/CFS Society says: 'It would seem that those most in need are the most overlooked in Sussex and this cannot be right'.
Click to expand...


Ironic that Colin Bartons comment suggests he was unaware re severe and very severe til now

Colin Barton of the ME/CFS Society says: 'It would seem that those most in need are the most overlooked in Sussex and this cannot be right'.

Be careful what you wish for , specialist provision may be more old wine in new bottles .
If there's a need identified , and agreed as needing resourced, who oversees provision model and delivery ...
 

"Colin Barton of the ME/CFS Society says: 'It would seem that those most in need are the most overlooked in Sussex and this cannot be right'."



Yeah right. It's him and his Society who have overlooked severe and very severe ME patients for decades. When I was severe, all Colin Barton had to say to me was "Oh Dear, are you taking any medication?". I was Way too sick to get to cafe meetings, still too sick/cognitively disabled to be online, I gave up on the Sussex Society in frustration and despair after a number of phone calls to Mr Barton.



In 2019 Colin Barton, (Chair of the Sussex patient group and charity) spoke to the SMC associated journalist Kate Kelland at Reuters, he gave her ammunition for her ME patient-bashing article :

'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.'

https://www.reuters.com/investigates/special-report/science-socialmedia/





In 2010 Colin Barton got an article into the local Brighton paper, The Argus, about a survey his Sussex group ran.

'Working with the Brighton And Sussex Medical School, our organisation ran a survey about the experiences of those affected by Myalgic Encephalopathy or Chronic Fatigue Syndrome across the county. This is the first professionally run comprehensive study of its type and the findings are being seriously viewed by service providers and users alike....

..... findings show that a number of treatments and approaches are helping a lot of people affected by the debilitating illness

....Treatments such as specialist Cognitive Behavioural Therapy has helped 74% of those who have tried it

Lifestyle courses run by the NHS center and the Expert Patient Programmes are helping a lot of people, and alternative approaches such as yoga, nutrition, acupuncture and homeopathy along with the Lightning Process are rated highly by many patients who have benefited from them.'

https://www.theargus.co.uk/news/8171849.helping-me/




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, Sussex ME/CFS Society Chair Colin Barton, 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





Sussex ME/CFS Society News 2016:

'Paediatric Medical Advisor to the Sussex & Kent ME/CFS Society, Dr Esther Crawley has been promoted to Professor and appointed to the Chair of Professor of Child Health at the University of Bristol.

https://measussex.org.uk/esther-crawley-now-professor-july/




Current Sussex ME/CFS Society Medical Advisor Dr Alastair Miller wrote in the Guardian during the Inquest for Maeve Boothby-O'Neil, to promote CBT for ME.

Dr Alastair Miller:

'It is also clear to doctors in the field that the individuals who recover best from ME/CFS are those who steer a “middle road” between excess physical activity and excess rest. Patients can’t exercise their way out of the illness but neither will total inactivity deliver recovery. The fact that we use CBT and other behavioural approaches in no way implies that we do not believe this is a physical condition. After all, we use CBT and rehabilitation to relieve symptoms in cancer, in rheumatoid arthritis and following heart attacks. Nobody has ever suggested that those conditions are “all in the mind”.'

https://www.theguardian.com/comment...case-highlights-clashing-nhs-narratives-on-me

.
 
Last edited:
It's really a constant in all of this that those responsible for this disaster never feel responsible for anything. They have endless capacity to blame the people they failed for their own failures. Or general vibes. Or even completely fake delusional concepts.

In large part because being responsible for something means that someone should be holding them accountable, and the opposite is happening. It means enforcement, and here it goes the other way around: they are expected to do the wrong thing that is authorized, and will be stopped from doing the right thing that isn't.

People rarely do the right thing of their own volition. Most people are wrong about most things, it's only proper education that can make functioning adults, because millions of people worked for millennia to achieve better. And when professionals are taught the wrong thing, you get the worst possible combination: people doing the wrong thing while being absolutely convinced they are doing the right thing. The exact same problem as with a rigid ideology.

Experts generally don't do better than the average person just because they're well-trained. They do better because they are held accountable by systems and institutions that provide them with the resources they need. Those systems and institutions learn and improve. With us, it's forbidden. Hence they do no better than literally nothing.

When the whole system is wrong about something, experts will often do worse than a completely untrained random person. Worse yet, systems that are in the wrong almost always reinforce their positions to safeguard from oversight and embarrassment.

Human folly truly is as infinite as the universe.
 
rvallee said:
It's really a constant in all of this that those responsible for this disaster never feel responsible for anything. They have endless capacity to blame the people they failed for their own failures. Or general vibes. Or even completely fake delusional concepts.
Click to expand...
Goes with the territory. Good at soundbites though for the easily deceived.
 
Some discussion of experience with this group here:
https://www.s4me.info/threads/what-...-chowdhury-on-friday.40550/page-6#post-558609

RainbowCloud said:
@Lou B Lou I fully understand why you brought up the Sussex and Kent ME/CFS Society as I had an unpleasant experience with them around 4 years ago. I’ll post my personal experience below because it further highlights the problems you brought up but I understand if the comments are going off topic too much and are considered better moved or deleted by anyone moderating!


I called their service naïvely thinking they could help advise me because they were a charity and so wouldn’t be a proponent of the BPS model... unfortunately at that stage I was far less informed and had no idea of their troubling associations.

I spoke to someone who seemed quite high up in the organisation – I don’t know their name but they were an older well-spoken male that talked about their decades involved with the Society and that they’d also helped set up the NHS ME service in Kent. That comment started to ring alarm bells since my call was partly to ask whether the Kent service was still only offering GET and CBT, which was all that was open to me via my GP but I didn’t want because I was aware of the harm caused.

When I mentioned that lots of ME patients had talked about the harms GET could cause, I was essentially told that all ME patients on forums are a bit crazy and hysterical and that I should take no notice.

Further on in the conversation I mentioned that I hadn’t heard from the NHS ME service in a year but hadn’t chased them during that time for a number of significant reasons (GET and CBT being one major reason but I didn’t mention that or my other reasons). At this point he chuckled and told me ‘I think you could’ve done that by now’ implying that I was lazy and that was ridiculous. I was naturally thrown by his comments and attempted to explain why I hadn’t been in touch and that I wasn’t being lazy – something I shouldn’t have had to do. He then asked me point blank if I’d been to my doctor to get medication for depression. At that stage I said that I didn’t think that was a fair thing to say to me given he didn’t know my situation and I put the phone down.

I’m sure he thought I was ‘hysterical’ and ‘depressed’ and that my offence at his comments only served to confirm his views. It was a horrible experience because I didn’t expect to be confronted by that kind of attitude from an ME charity. Now I would fully expect that from that particular organisation but at the time it upset me a lot because I was much less informed and vulnerable.

I hate that this can happen to you when all you’re looking for is appropriate guidance and support. You shouldn’t need to be well-informed, experienced and ‘have your armour on’ before you ask a charity or organisation for help, but as we know that can be the reality.
Click to expand...
 
https://measussex.org.uk/medical-training/

MEDICAL TRAINING
By SMEAdmin On 16th December 2024

| No Comments


We have recently been working with a Doctor at Brighton and Sussex Medical School who has been doing some training on ME/CFS that two of our members have taken part in. There will be an update on this in the next Sussex & Kent ME/CFS newsletter.

—-
Colin Barton on MEA Facebook page:
The Sussex & Kent ME/CFS Society recently collaborated with the Brighton and Sussex Medical School in a medical students training session about people affected by 'invisible' illnesses: www.measussex.org.uk
 
Dolphin said:
https://measussex.org.uk/medical-training/

MEDICAL TRAINING
By SMEAdmin On 16th December 2024

| No Comments


We have recently been working with a Doctor at Brighton and Sussex Medical School who has been doing some training on ME/CFS that two of our members have taken part in. There will be an update on this in the next Sussex & Kent ME/CFS newsletter.

—-
Colin Barton on MEA Facebook page:
The Sussex & Kent ME/CFS Society recently collaborated with the Brighton and Sussex Medical School in a medical students training session about people affected by 'invisible' illnesses: www.measussex.org.uk
Click to expand...

The DHSC Delivery Plan should be published BEFORE parts are IMPLEMENTED on the ground! WTF
 
19/1/2025, Brighton Argus local paper

'Sussex ME Society celebrates 20 years of specialist service'

'The Sussex ME Society is observing the 20th anniversary of the NHS Sussex specialist ME/CFS service.'

'The service, which assists individuals suffering from Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), has been operational since 2005.
It was established in Haywards Heath following a widespread consultation with health authorities and the Sussex ME Society.

This was prompted by a survey of hundreds of affected individuals and GPs, who called for a dedicated service to aid in diagnosis and offer management courses.'

'The service, staffed by a team of seven including a specialist physician, occupational therapists, physiotherapists, and a psychologist, has handled more than 8,000 local referrals in the past 20 years.
It is recognised as a leading centre in the UK for ME/CFS.

Colin Barton, chairman of the ME Society, said: "We are immensely proud to have been involved in getting the NHS centre established and continue to work collaboratively with them.

They have helped many people to manage their illness and a good number to significantly improve, with some able to move on to lead reasonably active lives."

The centre's assessments reveal that over 30 per cent of referrals have alternative diagnoses.'

https://www.theargus.co.uk/news/248...lebrates-20-years-specialist-service/?ref=rss


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




The other side of the Sussex NHS CFS Services, and the Sussex ME/CFS Society:

That is the Sussex NHS 'CFS' Service whose 1st Clinical Lead (from 2005) was Dr Brian Marien, a former GP turned CBT specialist, who contributed to Professor PD Whites book 'Biopsychosocial Medicine'

https://books.google.co.uk/books/about/Biopsychosocial_Medicine.html?id=chwtWAt76JoC


'Dr Brian Marien 'gained a Masters in Health Psychology from Surrey University before going on to train in cognitive and behavioural psychology at the Institute of Psychiatry, London. 'I worked as a specialist in the Academic Department of Psychological Medicine, St. Bartholomew’s Hospital, where I was involved in clinical practice, research and education. Initially the main focus of my work was the causes and consequences of stress and I wrote my Masters thesis on ‘burnout’.

https://www.linkedin.com/in/brianmarien/?originalSubdomain=uk




The Sussex NHS 'CFS' Service's 2nd Clinical Lead was Dr Michael Broughton who involved himself with Lightning Process while Lead of the Sussex NHS CFS Services. By the end of 2009 though Dr Broughton was on record stating that Lightning Process doesn't help people who are ill, it only helps people who are not ill. The Sussex CFS Society rented a stand at their Annual Conference to local Lightning Trainer Linda Morgan .... read more below



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

.

The Sussex ME/CFS Society has had the same 3 Trustees (with Colin Barton as Chair) continuously for 25 years. Not in line with Charity Commission guidelines on length of tenure for charity Trustees.

.
 
Last edited:
The Linda referred to is an LP coach and the Swallows Retreat is still advertising itself as providing LP courses. (I won’t honour it with a link.)

@Trish the Swallow's website refers to 2009 visit, but I found no mention of any research based there. It does cite Dr. Bruun Wyller’s work in Norway and Esther Crawley’s terrible Bristol study.
 
Trish said:
Thanks, @Dolphin.

Does anyone know whether anything was published?
Click to expand...

@Trish

No actual research appears to have been published on Lightning by Dr Michael Broughton, or by Linda Morgan (Sussex LP centre owner). When Linda Morgan talked about research it looks like she meant vague observations of pwme (mostly teens) who passed through her LP centre.

I mentioned the first Sussex CFS clinical lead Dr Marien because he was BPS central, and the 2nd lead, Dr Broughton, because he bought into LP for a time. It's not clear who the subsequent 'specialist physicians' were, who Colin Barton says have been part of the Sussex CFS services (since Broughton left).
The Sussex NHS Service did not have any Dr Clinical Lead for years, they are all physios, OTs and Psychologists. .




On the 16th January 2025 Colin Barton wrote:

"We have recently been working with a Doctor at Brighton and Sussex Medical School who has been doing some training on ME/CFS that two of our members have taken part in. There will be an update on this in the next Sussex & Kent ME/CFS newsletter."
https://measussex.org.uk/medical-training/


I doubt if anyone who is not a Sussex Society member will discover anything more about this.




The current Sussex ME/CFS Society Medical Advisors are 5 in number, 2 not are not named:


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

2nd January 2025 'Top Medical Advisors'

'Our team of five highly qualified and experienced medical advisors includes:

Professor Neil Harrison is President Elect for the Psychoneuroimmunology Research Society, the leading international society for research into the bidirectional interactions between the immune system and the brain and sits on the Clinical Interview Committee for the Wellcome Trust.

Dr Alastair Miller is Deputy Medical Director at the Joint Royal College of Physicians Training Board.

Professor Leslie J Findley was the Clinical Director of a referral centre for patients with complex fatigue syndromes of all types. He has contributed to World Health Organisation and national guidelines on the subject of diagnosis and management of fatigue syndromes.'

.
 
Last edited:
Lou B Lou said:
2nd January 'Top Medical Advisors'

'Our team of five highly qualified and experienced medical advisors includes:

Professor Neil Harrison is President Elect for the Psychoneuroimmunology Research Society, the leading international society for research into the bidirectional interactions between the immune system and the brain and sits on the Clinical Interview Committee for the Wellcome Trust.

Dr Alastair Miller is Deputy Medical Director at the Joint Royal College of Physicians Training Board.

Professor Leslie J Findley was the Clinical Director of a referral centre for patients with complex fatigue syndromes of all types. He has contributed to World Health Organisation and national guidelines on the subject of diagnosis and management of fatigue syndromes.'
Click to expand...

Previously the five medical advisors were
  • Dr Alastair Miller
  • Professor Esther Crawley
  • Professor Leslie J Findley
  • Dr Alan Stewart
  • Professor Neil Harrison
Though Esther Crawley has retired from her jobs in Bristol/Bath, do we know if she was withdrawn as medical advisor to this group? Dr Alan Stewart was ‘medical practitioner to the NHS Sussex CFS/ME’, but I am struggling to find him on the NHS CFS/ME Services webpages.

[added - in May 2024 at the BACME conference he was still listed as leading the Sussex Service.]
 
Last edited:
Peter Trewhitt said:
Previously the five medical advisors were
  • Dr Alastair Miller
  • Professor Esther Crawley
  • Professor Leslie J Findley
  • Dr Alan Stewart
  • Professor Neil Harrison
Though Esther Crawley has retired from her jobs in Bristol/Bath, do we know if she was withdrawn as medical advisor to this group? Dr Alan Stewart was ‘medical practitioner to the NHS Sussex CFS/ME’, but I am struggling to find him on the NHS CFS/ME Services webpages.
Click to expand...



Esther Crawley stopped being Medical Advisor to the Sussex Society charity/patient group a few years ago.

Alan Stewart was still listed as Medical Advisor last year I think. His bio from last year is vague and waffly in relation to ME/CFS:

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


Also Dr Jessica Eccles was listed as Med Advisor in recent years. She trained in medicine but works on the academic side.
https://www.linkedin.com/in/jessica-eccles-6447a97b/?originalSubdomain=uk

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