ME/CFS services in the United Kingdom

Non-Recoverers are rediagnosed with one of the never ending faux diagnoses - Pervasive Refusal Syndrome (PVS), FII, FND, PPS, ETC.

Bath clinics objective is not to cure ME child sufferers, but to lose them in a sea of tired/fatigued patients. And to reinforce the psychologising of ME. And to feed the psychosocial research industry.

 

That is interesting. It shows the development of the illness. When I was diagnosed in 1984/5 they would have been the core ME sufferers. Intellectual integrity does not seem to be favoured in some institutions of "science" and learning.

 

I think the situation is not helped by the commoditisation of medicine. Most ME specialist services do not take on oversight of patient care as a whole, they are set up to provide specific time limited care packages (GET and CBT up till now) and then to discharge. Their purpose is not to treat or manage their clients ME/CFS as a whole but to process them promptly and efficiently.

They see their patients for say an eight week treatment block then that is it. The more immediately or more severely harmed just don’t complete the course, and those that later deteriorate or relapse when they try to combine sustaining their apparent improvement and real life are already discharged.

The ‘therapists’ will rarely have to face up to their medium and long term outcomes.

 

The amount of plain lying in this is shocking, truly death of expertise stuff. The LC community understood the basics within weeks. Mostly because of help from chronically ill people. Medicine is flat out incapable of understanding the most basic facts of this condition after decades of blatant lies and fraud. And still lying their ass off.

Theranos was toddler fraud compared to this mess. At least they had credible claims, this here is as delusional as scientology.

 

Succinct and accurate summary of Service provision........ a money spinning sausage machine.....

 

It is the specifics of it all in treatment that is 'intimate' and I think that is the right word given you are controlling what someone is allowed to enjoy,do, when they can sleep to minutiae is there another - particularly when it is diaries and intricate planning to this extent.

To put the 1hr and the 10-20% bla firstly you must be arrogant beyond belief (without using the word 'try starting at') but it is also inferring there is some science that relates to the body behind that - ie the very confidence is misleading readers into assuming it can't have come from nowhere. But shockingly it has. Then becomes a hard and fast rule to the point where someone who to their eyes can't follow that made up arbritrary thing is what 'not correctly ill' or 'not thinking right'?

It's terrifying that something like this can happen without science at a Workwell Foundation type level being behind it

Even an athletic's trainer would call it a plan to adapt and take data on a regular basis in order to do so - so this has nothing to do with health, (and little to do with 'rehab' or whatever building someone back up they might want to call it) and feels about 'getting people out of their bad behaviour'

This, this whole area of behaviourally minded people I feel should have no place in medicine - I can't name an illness that it is good for, and is based on outputting 'behaviour' and is sort of the opposite of what you'd expect in people who understand a disease and intend to treat what is underlying and it brutalises, dehumanises/depersonalises and is stigma in itself. It is psychological damage.

It is people who never got into their head that you fix the situation or the condition and the bit you see, behaviour-wise reduces on its own - because people don't engage in them (like they believe) for no reason one day because everything is fine. It is beyond old-hat. And putting in numbers to try and pretend it is rehab or science: a training programme 'tailored to the condition' doesn't take much effort to see is a panto, there are never any references to proving it even reduces deconditioning (at the expense of overall health) to 'work out' those with different levels of ME.

And laypersons just allow people to get hurt by this stuff by telling themselves the fallacy of 'oh of course they'll have checked for safety first' 'of course they've excluded those who are too ill for it'.

Just like when I read the chronic pain new guideline I new that the idea 'it will just be for those who don't have an injury of cause' was BS - that in reality noone would be checking when someone came in having had horrendous pain for 2yrs that was never investigated (rather than it being whatever that guideline might actually nichely work for).

You have to have been brutalised by the system to know it, and all these 'but of course' people say they need to stop, because no - at least a large number don't 'of course' and aren't interested and it is v sausage machine once rocking and rolling they close their eyes to the results not fitting in reality and rewrite the person as being the problem for not producing the desired theoretical results. And aren't positioned to question anyway.

And how 'that' can be well-described - it needs its own term it is that common (and in particular in the mental health and in anything that might have touched into being treated, whether rightly so or not, with a behavioural attitude) - because that is the context these writings are feeding into, they become edicts of what people will expect to see and many won't see past.

 

It is when you focus on these bits that it starts to remind of something that was a nasty, we've tried to forget to the depths of history, treatment of some condition in the old days - perhaps autism, but maybe something else.

I don't think ME is 'unique' over history and I think that this arm and this tendency needs to have whatever it is that structurally is underlying allowing its presence and power and not safeguarding and overseeing these things as they grow. I think it is public enquiry territory and I think said enquiry needs to have remit to split and have half about ME and what they are going to do about those impacted, but the other half focusing on those who did this and 'never again' lessons.

There are big power problems here that mean niches are handed over wholesale as guinea pigs if the sales pitch is good enough for whatever condition, and these phrases last decades at a time with the public not calling out the increasing callous and lack of common sense, nevermind evidence behind it. It feels time's up or should be for what has allowed this to grow and exist.

Just creeps me out the idea there is a big hospital with probably locked doors full of horrendously sick kids being treated behaviourally. Why the heck it doesn't the rest of the public out there - given there has always been some group that is vulnerable to quite similar 'pattern of action' nightmare threats over the decades I've been around - I find an issue of conscience and a long list of other questions.

None of the not even excuses but maybe even just 'reasons' for someone doing something bad/sub-optimal even apply when you look at it for these 'patterns of situations for certain illnesses' over these broader examples. The set-ups often cost far more money if someone actually did the book, certain in long-term impact and outcome and almost certainly in short-medium vs proper alternatives. And no 'science' or good develops from it. They are just dirty periods of history.

What I really hate is the idea that the same people run the same system that then calls the effect of such brutalising and lost opportunity 'trauma' of the kind to be treated not with making people feel safe and vindicated, but with CBT or whatnot and can write the narrative of these outcomes (noone independent is picking that up). I think the issue is the 'split' that kept psychology (situational-focus) with power and independence oversighting the worst of psychiatry (the split isn't as simple as that) got over-run with various power-plays so you don't have the 'it's the situation and there is a very different approach to healing' balance to the 'its a manifestation in the person' school at least keeping some of its running out of hand at bay. And preventing hubris and lack of critique etc.

Now we've had a niche knotweed-like spreading via 'need to know' short-course brainwashing through what are supposed to be safeguard areas like social services, teaching and so on with rules of 'pass it up the chain you are not positioned to make assessment yourself of who isn't/is' type level of power. That should never have happened. Maybe those departments need their own psychology depts who assess the validity of these things or something but there's something missing (and I'm not even sure this happened due to any bad intentions), and a hole I'm not sure the current structure can do anything more than keep digging on

 

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..
____________________

Copied to this thread:
United Kingdom: Sussex & Kent ME/CFS Society News

 

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

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“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

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“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

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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

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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

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“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

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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?

 

Have I missed a link?

 

I think that lack of responsibility for end outcome is important too. Currently no one has it in the way ME care is set up and would be if continued to be therapist run short courses.

why would a CCG/ICS/Trust change that to take on responsibility for ‘doing best by’ if ‘being seen to offer something’ is allowed to be OKed?

I’m unsure things will properly change to what they need to be without becoming a medical dept that has obligations for health rather than the KPIs based on busyness

 

Oxford, FWIW

 

Sussex Argus

'Lewes chronic fatigue woman 'forgotten' by health service'

'A WOMAN has told of her loneliness and isolation after becoming bedbound due to chronic fatigue.

Christine Halsey has suffered with Myalgic Encephalomyelitis (ME) for 25 years, but is now unable to leave her bed as the condition gets worse.

The 77-year-old from Whitesmith, near Lewes, is supported entirely by her husband and said she has been “forgotten about” by the health service.

“It has been difficult. It cuts you off from family and friends. It is very lonely,” she said'

'ME is a long-term condition that usually causes extreme tiredness, but can also bring on spells of dizziness, heart palpitations, feelings of sickness, and in Christine’s case “migraines that can last for days”.

'The Argus previously reported on a lack of provisions for people with severe ME, as only those with mild or moderate symptoms are able to access support at Haywards Heath Health Centre.


For those who cannot leave their home there is nothing, while many people still deny the condition exists at all.

“A so-called ‘ME expert’ in Oxford once told me to get out of my wheelchair and go on a world trip or holiday to Australia for six months, and this was a professional psychiatrist,” said Christine.

“How he thought I could do that – or even have the money to do that – is ridiculous.”

https://www.theargus.co.uk/news/20741373.lewes-chronic-fatigue-woman-forgotten-health-service/?ref=twtrec#comments-anchor



This is quite a long article. Shame the journalist calls ME chronic fatigue and extreme tiredness - yet again.

Responses that discuss the local ME group have been moved to:
https://www.s4me.info/threads/united-kingdom-sussex-kent-me-cfs-society-news.1906/page-8

 

That's just insane. I'm mild and a day trip made me crash for a week.
This is one thing that even well-meaning people can't wrap their heads around: ME sucks the enjoyment out of life, because formerly enjoyable things give you horrible PEM now. You do something fun, it makes you deathly sick for several days, during which you wonder "Why bother? Was it worth this crash?" Your memory of the event is stained because you also remember how sick it made you.
Then you go out and do it again, because sitting in your chair/laying in bed all day is incredibly boring. You know exactly what your energy envelope is, but you don't care, because you want to live a little.
You're so desperate to have fun, or get work done, or complete fun projects, that you find yourself putting off basic ADLs to do so.
Many pwME are constantly pushing themselves to do more, and systematically ignoring, or even denying, their symptoms. This is at complete odds with the BPS model.

 

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.