United Kingdom: Sussex & Kent ME/CFS Society News

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/

 

Peter White who Colin Barton has been close to has used similar wording. Basically it seems like he likes to claim people are recovered when they are not and people have unrealistic ideas of what is a healthy amount of activity. Also blaming the patient for the illness.

Peter White said things like accommodations were bad and could interfere with the recovery process.

This whole piece is too vague.

 

Sussex ME/CFS Society: All About ME
July 30, 2023

https://www.gscene.com/news/health/all-about-m-e/

hmm
guidelines (that they opposed , and one of their medical advisors A. Miller is still opposing), are available for both professionals and patients.

 

This is the first Annual Report of the Sussex ME/CFS Society that I have seen on the Charity Commission website



'Sussex ME/CFS Society

Chair’s Annual Report 2021/22'


'Our organisation remains one of the most successful regional ME/CFS charities in the UK. We have during the last twelve months continued to inform, support and represent our membership through newsletters, information lines, town contacts, website, Egroup and regular meetings.

The society’s work across the area continues to be overseen by our Management Committee working with our medical advisors and volunteers.

The NHS regional steering groups that we sit on in Sussex and Kent oversee the continual development of the Local Multidisciplinary Teams that are providing confirmation diagnosis, symptom control and appropriate management strategies at several locations. We are supporting the services and working with the steering groups and attend regular meetings with the CCG and specialist services reps. We also have linkage with the British Assocciation of Clinicians in ME/CFS (BACME). We continue to be involved in the overseeing of the local NHS Services.

We work with national organisations including and cooperate with the NHS Expert Patient Programmes and a network of Yoga teachers across the counties that are improving the lives of those affected by ME/CFS.

Working with the Brighton & Sussex Medical School we have run a survey about the experiences over two years of those affected by the Chronic Fatigue Syndrome – ME across the region. This is the first professionally run comprehensive study of its type and the findings are being seriously viewed by service providers and users alike. We are planning to hold a South East ME/CFS Conference that will attract medical professionals and patients who will hear presentations from top specialists and researchers from our area.'



Link on this page to download the Sussex Society Accounts and Trustees' Annual Report (TAR) 30 June 2022 06 June 2023
https://register-of-charities.chari...y-details/3973095/accounts-and-annual-returns





I cannot find any details of the Sussex Society Management Committee, who they are, who selects them, on the Society's website.

 

Brighton Argus, article on ME by Colin Barton/Sussex ME Society, 2010 - the article is for ME Awareness Week 2010, entitled 'Helping ME', and is all about the Sussex ME Society.

There are over a dozen excellent Comments from knowledgeable ME advocates in response to this article, the comments are critical of the article content.

Colin Barton responds (in the Comments below the article) to the many critical Comments to the article (scroll down the article to read the Comments to it). Note Colin Barton does not mention GET.





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


Colin Barton:
'Specialist CBT can help some with ME/CFS

Amongst the national ME/CFS community we sadly still have a few advocates who seem not to appreciate how some people with the illness can be helped by psychological approaches, such as Cognitive Behaviour Therapy (CBT). This has even led to some calls for them to be boycotted, meaning that patients who could be helped at various stages of their illness may miss the opportunity to try this approach.

Therapists must of course have appropriate qualifications and experience, and an open flexible approach that is shared with the patients, as well as a strong understanding of the issues related to ME/CFS. CBT is not a single or imposed model of therapy, but something that uses certain general principles to address specific problems that are identified and agreed by patient and therapist.

The aim behind specialist CBT in ME/CFS is to support a sustainable improvement in functioning and adaption to illness, via gradual steps that are mutually agreed and regularly reviewed by patient and clinician. Applied appropriately, CBT can often help patients cope confidently with their illness, to minimise the impact of some symptoms, to help them adjust to some of the consequences of being unwell, and to feel more in control of their illness and their lives. As with other illnesses such as cancer or AIDS, where it has been successfully used, its use does not imply that the cause of the illness is psychological. It uses psychological processes to assist them in dealing with the effect of physical illness.

Most NHS multidisciplinary teams across the UK successfully use specialist CBT and pacing alongside medical care as part of their offered treatment packages including the English specialist centers that have dealt with over 39,000 referrals since 2004.'

Colin Barton
Chairman Sussex ME/CFS Society
www.measussex.org.uk

 

Sussex ME/CFS Society News 9th October 2023
(May as well be called 'the chronic fatigue society'):

Neil Harrison on 'Perceived Fatigue'



https://measussex.org.uk/interoception-and-fatigue/

'Prof Neil Harrison et al: The subjective experience of fatigue impairs an individual’s ability to sustain physical endurance performance.

However, precise understanding of the specific role perceived fatigue plays in the central regulation of performance remains unclear.

Here, we examined whether the subjective intensity of a perceived state of fatigue, pre-induced through prior upper body activity, differentially impacted performance and altered perceived effort and affect experienced during a sustained, isometric contraction in lower body.

We also explored whether (cardiac) interoception predicted the intensity of experienced perceptual and affective responses and moderated the relationships between constructs during physical activity.'




From:

'Effect of the subjective intensity of fatigue and interoception on perceptual regulation and performance during sustained physical activity'

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0262303


Conclusions
'A perceived state of fatigue limits endurance performance, influencing both how effortful activity is perceived to be and the affective experience of activity. Though awareness of interoceptive representations of bodily states may be important to the subjective experience of fatigue, interoception does not modulate the relationships between perceived fatigue and other perceptual (i.e. effort) and affective constructs.'




Can Anyone make sense of that?

 

Not a recommendation:
IS LONG-COVID ME/CFS?
By SMEAdmin On 23rd November 2023



Leading ME/CFS specialist Dr Alastair Miller has said that it seems that the overwhelming majority of long-Covid cases is post-viral chronic fatigue syndrome.

Continues at: https://measussex.org.uk/is-long-covid-me-cfs/

 

Leopard changing his spots ...... ?

 

A medical advisor (Dr Alastair Miller) to the secretive Sussex ME/CFS Society - whose long term unelected Chair Colin Barton is on public record (Reuters) saying that he returned to 'nearly normal' by doing CBT and GET.....


Dr Alastair Miller :

".... It is important that patients make compromises in their recovery and steer a middle ground between ‘pushing themselves too hard’ and partaking in negligible activity. For complex cases, referral to a local CFSME clinic will allow them to be assessed by a multi-disciplinary team that will be able to exclude alternative pathologies by appropriate investigation and supervise rehabilitation by properly trained therapists.

Dr Miller’s complete article is available to members of the Sussex & Kent ME/CFS Society.'



Looks like Dr Alastair Miller thinks that being too sick with LC or ME to do housework, shower, or even move is merely ... "partaking in negligible activity"

 

Sussex ME/CFS Society News 9th October from Sussex Society Medical Advisor Professor Neil Harrison -


'Interception and Fatigue'

'Prof Neil Harrison et al: The subjective experience of fatigue impairs an individual’s ability to sustain physical endurance performance. However, precise understanding of the specific role perceived fatigue plays in the central regulation of performance remains unclear. Here, we examined whether the subjective intensity of a perceived state of fatigue, pre-induced through prior upper body activity, differentially impacted performance and altered perceived effort and affect experienced during a sustained, isometric contraction in lower body. We also explored whether (cardiac) interoception predicted the intensity of experienced perceptual and affective responses and moderated the relationships between constructs during physical activity.

https://measussex.org.uk/interoception-and-fatigue/

http://dx.doi.org/10.1371/journal.pone.0262303





'Effect of the subjective intensity of fatigue and interoception on perceptual regulation and performance during sustained physical activity'

Conclusions
'A perceived state of fatigue limits endurance performance, influencing both how effortful activity is perceived to be and the affective experience of activity. Though awareness of interoceptive representations of bodily states may be important to the subjective experience of fatigue, interoception does not modulate the relationships between perceived fatigue and other perceptual (i.e. effort) and affective constructs.'

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0262303



Can anyone interpret that word salad please?

 

Both those links are to the same study, which is discussed here, Effect of the subjective intensity of fatigue and interoception on perceptual regulation and performance during ...activity, 2022, Greenhouse-Tucknott

 

For what it is worth, this was shared to a mailing list I'm on

Subject: Praise for charity

Source: Sussex Argus Date: February 19, 2024 URL: https://measussex.org.uk/praise-for-charity/

Praise for charity ------------------

In a recent letter from the Minister for Health and Secondary Care our Brighton based charity along with the Sussex NHS specialist ME services who deal with over forty new GP referrals per month are praised.

The Rt Hon Andrew Stephenson MP said: 'The Government is grateful for the amazing work being done by NHS clinicians in ME/CFS services across the country as well as the invaluable contributions of the Sussex & Kent ME/CFS Society.'

The Department of Health is presently working on a delivery plan to improve the treatment available to people affected by this often life changing illness that affects nearly 4,000 adults and children across Sussex.

 

Colin Barton, long term Chair of the Sussex and Kent ME/CFS Society - here quoted in the 2019 Reuters article written by former Science Media Centre associate Kate Kelland:


The Article
'A REUTERS SPECIAL REPORT
Online activists are silencing us, scientists say'
https://www.reuters.com/investigates/special-report/science-socialmedia/


'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.'


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



As a former member of the Sussex and Kent CFS/ME Society I was shocked by Colin Barton's casual attitude to the severe ME I suffered at the time, and by his casual dismissal of the medical neglect and abuse I had been subjected to. Mr Barton told me: "What our members say is - things are getting better", 2002/3.
I replied that I was a member of his Society and I was telling him that 'things' were Not getting better.
I eventually left the Society in utter frustration and despair that my illness and bad experiences in the NHS were not being taken seriously by the Society's Chair.



Edit: Also I was not happy being a member of a Society/Charity whose members were never allowed to vote for who would be Chair, or allowed to vote for any other of the Charity Officers, because that indicates absence of accountability.

The Charity Trustees have remained the same since the Charity was first registered

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

https://register-of-charities.chari...ch/-/charity-details/3973095/charity-overview

 

(Not a recommendation)
This was shared to a list I’m on

Source: Sussex & Kent ME/CFS Society
Date: March 14, 2024
URL: http://www.measussex.org.uk


Long COVID Awareness Day – March 15th
-------------------------------------

International Long COVID Awareness Day aims to raise awareness about the
symptoms and impact of long COVID. Several studies suggest a significant
proportion of individuals with long COVID have symptoms consistent with
ME/CFS.

Leading ME/CFS specialist Dr Alastair Miller who is medical advisor to
the Sussex ME Society said: 'it seems that the overwhelming majority of
long-Covid cases is post-viral chronic fatigue syndrome. The symptoms of
long-Covid are identical to those of ME/CFS and have all the cardinal
features of that syndrome – fatigue, postural symptoms, brain fog,
unrefreshing sleep and post-exertional malaise.'

'The important thing is that clinicians listen to patients, believe
their stories and reassure them that their symptoms are real and due to
a physiological cause – albeit one for which the basic mechanism remains
unidentified. It is important that patients make compromises in their
recovery and steer a middle ground between ‘pushing themselves too hard’
and partaking in negligible activity.'

For complex cases, referral to a local ME/CFS clinic such as the one in
Sussex will allow them to be assessed by a multi-disciplinary team that
will be able to exclude alternative pathologies by appropriate
investigation and supervise rehabilitation by properly trained
therapists.

 

I thought the current estimates of those with Long Covid meeting the diagnostic criteria for ME/CFS was in the region of 50%.

It is perhaps not surprising that Dr Miller continues to echo the BACME party line of emphasising recovery and trying to sneak in some form of GET disguised as something else.

However more broadly to be fair some form rehab may be relevant to some of those with Long Covid that do not have ME/CFS, for example though I can not speak from any knowledge base I am assuming those with say lung damage from from the acute phase might benefit from work on lung function. But I assume a specialist ME/CFS service is not the relevant venue for this.

Is there a danger here of going from one extreme of denying any overlap between Long Covid and ME to the other of assuming Long Covid is purely a subcategory of ME?

 

I really doubt it. Work on lung function basically means breathing and our brains are pretty good at making sure we breathe enough. Interestingly that does not seem to apply in acute Covid where hypoxia occurs with few symptoms but there are complex reasons for that. I have had scores of patients with episodes of lung damage from infection and autoimmune disease and have never been aware of any benefit from rehabilitation beyond the acute phase of lung clearance and assisted respiration if necessary.

 

(Not a recommendation)
This was shared to a list I’m on

Subject: Press release: Around 1/4 of ME/CFS patients may fully recover spontaneously

Source: Sussex & Kent ME/CFS Society
Date: March 28, 2024
URL: http://www.measussex.org.uk

Around 1/4 of ME/CFS patients may fully recover spontaneously
-------------------------------------------------------------

Recently research published in Nature says: 'Validation of diagnosis and course of illness on longitudinal follow-up: Within four years of participation, four of the 17 ME/CFS participants had a spontaneous full recovery. No other new medical diagnoses were reported by the ME/CFS participants.'

We are aware of quite a number of strictly diagnosed people who have been associated with our organisation and reported their spontaneous recovery often after some years.

Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome: https://www.nature.com/articles/s41467-024-45107-3

 

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'.