Discussion in 'UK clinics and doctors' started by Adam pwme, Jul 1, 2022.
From the first post - BBC LookNorth item 1 Jul 2022
Stephen, an NHS heath professional, developed ME/CFS after an adverse reaction to a Covid vaccine. He explains why it is like to have ME/CFS, and the consequences of it - he no longer works, mostly housebound, some days he can't get out of bed.
Stephen: "Despite the devastating effect it has had on my life, I have received no medical treatment from the NHS. When I was finally diagnosed, nobody explained what it was or how it would affect my life. The only treatment option was a clinic led by a health psychologist. And ME is not, despite misconceptions, a psychological issue. Doctors are taught very little about our condition, so we are often written off as being lazy or suffering from a mental health condition. More research is desperately needed. It is time the medical system tackled this devastating disease."
Presenter: "Well, in a statement, the North Cumbria Integrated Care Trust tells us it would be happy to meet Stephen to discuss further treatment options. It says it will always listen to patient feedback and strive to improve patient experience."
From the second post - BBC 6 o'clock edition
Another presenter: "..the North Cumbria Integrated Care Trust which said in a statement, it would be happy to meet Stephen to discuss further treatment options. It says its service is made up of various medical professionals, and that a rehabilitative approach involving psychological therapies and physiotherapy-based support has been shown to have a positive impact. The Trust says that it will always listen to patient feedback and continuously strive to improve patient experience."
Seems as though the Trust will always listen to patient feedback. Sounds as though they need some.
Stephens short film was included in a segment in Today's Politics North programme.
Features Sonya Chowdhury.
So, Dr Alastair Miller, is based at the Trust which provides the "service" for Stephen Hocking (guy whose story is featured in Look North above).
This is the same Alastair Miller, who offered his "expert" opinion to the SMC when the new NICE GDL were launched last October. See below for his comments, alongside TChalder and PDW.
you are here: science media centre > roundups for journalists > expert reaction to updated nice guideline on diagnosis and management of me/cfs
OCTOBER 29, 2021
expert reaction to updated NICE guideline on diagnosis and management of ME/CFS
The National Institute for Health and Care Excellence (NICE) has published its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
Prof Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King’s College London, said:
“The NICE guidelines for CFS/ME are at odds with the research evidence. Researchers from different Institutions in different countries have found graded exercise therapy and cognitive behaviour therapy to be effective for some patients with CFS. Evidence has shown they reduce fatigue and improve functioning without harm, if delivered by trained therapists in specialist clinics. Being a clinician and researcher in this field I can’t help but think clinicians will be confused by this message from a respected organisation.”
Prof Peter White, Emeritus Professor of Psychological Medicine, Queen Mary University of London (QMUL), said:
“Having looked after many patients with this illness, I worry that this guideline seems to suggest that patients need to learn to live with CFS/ME, rather than be helped to recover from it. NICE have banned graded exercise therapy, in spite of it being found to be helpful in a major Cochrane systematic review, while recommending an energy management programme, which involves “staying within your energy limits”, for which there is little evidence for it helping, and some evidence that it doesn’t.”
Dr Alastair Miller, Consultant Physician in Infectious Disease and Internal Medicine, said:
“It is unfortunate that NICE continue to misrepresent GET as “fixed incremental increases in physical activity or exercise” whereas in practice, the approach in most CFSME clinics has always been to tailor increasing activity to individual’s needs and requirements in line with their current recommendations in section 1.11. It is also unfortunate that they say that exercise/activity cannot be regarded as a “cure” for CFSME and yet they accept that it may relieve symptoms. There is no such thing as asymptomatic CFSME therefore if you have no symptoms you have no disease. It is unfortunate that so much emphasis is given to working “within current energy limits” rather than a gentle and controlled pushing of those limits. However, it is to be welcomed that clinics will still be able to provide appropriate personalised activity and exercise programmes for those patients in whom it is felt to be appropriate.
Link to whole piece https://www.sciencemediacentre.org/...deline-on-diagnosis-and-management-of-me-cfs/
Vincent Deary, who is another familiar follower of BPS views, works in Northumbria.
"Vincent is a writer, researcher, and practitioner health psychologist. He started his academic career fairly late in life, completing his Medical Research Council (MRC) Fellowship funded PhD in 2011. Prior to this he worked mainly as a Cognitive Behavioural Therapist with an interest in researching new interventions. Thanks to the MRC funding, he made the transition from clinician to clinical academic and continues to focus on the development and trialling of new interventions for a variety of health complaints. He still works clinically one morning a week in the UK’s first trans-diagnostic fatigue clinic. When he was 50 he published his first book, How We Are. This is the first part of the How To Live trilogy, published by Penguin Press. These books bring together his clinical and academic interests, along with his interest in philosophy, literature and popular culture, to paint a portrait of human life, suffering and well-being."
I have a vague recollection that he works here: https://www.newcastle-hospitals.nhs.uk/services/chronic-fatigue/
There's more on Dr Alastair Miller's views on ME/CFS here:
(Not a recommendation) Alastair Miller on CFS
It's not clear to me how much involvement he has in the current North Cumbria ME/CFS Service, but he is certainly very involved in BPS circles.
Is this the same service?
Persistent Physical Symptoms Service (PPSS)
Woww. 'they say' interesting turn of phrase I feel indicates certain things (given it is the entire Nice process and all the professionals involved he is effectively 'calling the cat's mother' : https://en.wiktionary.org/wiki/who's_'she',_the_cat's_mother#:~:text=Phrase,the trip with us too!" ). When you have to lie about to tone down what you've been doing why do some people not realise themselves?
Anyway yes someone should publish this as who is behind it all - because it rather explains the video if he is behind what is being received.
I really don't quite get from his rhetoric quite what this man thinks this condition is - what exactly does pushing energy limits do according to him? Just that he is blooming sure he is going to keep forcing people to push themselves and limits are bad, anything 'they' say is to be belittled/dismissed and that tone is OK. What is the 'asymptomatic' nonsense he's tied himself in knots with - just throwing out words aggressively enough people think they must be points? Is it about him telling himself for so many years that exacerbation of symptoms is a good thing because it means they are 'curing the witch'? He doesn't fully explain this 'what'..
His rather unpleasant tone and attitude isn't even veiled. Is he angry? It's kind of 'this is deluded, not me, so I'm not going to stop or be told off, who is anyone to question me'?
"However, it is to be welcomed that clinics will still be able to provide appropriate personalised activity and exercise programmes for those patients in whom it is felt to be appropriate."
What does he actually mean by this - where is it in the guidelines? Or does he actually mean they've checked for loopholes etc?
What is a 'trans-diagnostic fatigue clinic'?
I get that you need to market things when it is books etc, and Nietsche's good life sort of gives lessons in this direction, but I say this frankly as a real question: who do you have to be to think you can tell others 'how to live' to the extent of writing 3 books on it?
Interesting. It is a good response.
Looks like we are getting to that point of 'when a service isn't for ME/CFS at all' but some amorphous PPSS or fatigue etc.
In theory this could be seen as 'a clean break' and investigations into funding come up ie (to avoid getting into the separate politics of these things) at least saying that this does not/cannot be something that can be chalked up as 'funded for ME/CFS' - but ... how does all this work in the politics of it?
Is there an assigned pot for conditions, or an assigned number of centres/geographic coverage or charter for what should be available?
What happens when things get fudged into symptom-based clinics, but the main condition that was their justification isn't well served is there a call for closure and said clinics have the argument with who about what? Or get investigated or audited for their 'usefulness' or anything?
Just putting this here as a counterpoint between "service" and "real world"
Letter sent 2 September 2022 to the chief executive of the Office of Gas and Electricity Markets (OFGEM) from the North East and North Cumbria Integrated Care Board.
Dear Mr Brearley,
I am writing to you in my capacity as Chief Executive of NHS North East and North Cumbria Integrated Care Board about the serious concerns I have that clinically vulnerable people, in our community, may have their electricity or gas services disconnected as a result of non-payment.
We serve a population of 3.2 million people covering some extremely rural and deprived communities. Whilst I appreciate the ongoing national and international context companies are operating within, it is not my role to comment on or be drawn into a debate regarding this. However, it is my duty to ensure we do all we can to reduce the health inequalities those across our communities' experience, improve their health outcomes and ensure the safety of our patients.
It has come to light that we are starting to see examples where clinically vulnerable people have been disconnected from their home energy supply which has then led to a hospital admission. This is impacting on people who live independently at home, with the support from our community health services team and are reliant on using electric devices for survival. An example of this is oxygen; there will be many other examples. There is also a similar concern for clinically vulnerable people with mental health needs who may find themselves without energy supply.
It is my understanding that those people deemed clinically vulnerable cannot have their energy supply disconnected. Based on some examples, along with the contact we are having with many clinically vulnerable people, it is clear that significant concern exists across our communities.
Put simply, the impact of having their energy supply terminated will be life-threatening for some people. All of this will place additional demands on already stretched health and social care services.
This increased demand not only limits the NHS ability to provide treatment to those who need help most but there is also evidence that unnecessary admission to hospital can negatively affect a person's quality of life and health outcomes.
I, therefore, call upon you the Regulator to work urgently with the energy companies to:
1. Ensure the clinically vulnerable patient lists they hold are fully updated frequently and checked before considering terminating supply.
2. Develop a fail-safe system to ensure new patients being added to a clinically vulnerable patient list are covered (have energy supply) immediately.
3. Embark on a proactive communications campaign to ensure the public are aware of their rights regarding this.
4. Supply the NHS with the information it needs to be able to advise patients if they are at risk of being disconnected.
5. Have a senior responsible officer in each energy company who will act as a lead for the NHS and social care to discuss concerns regarding clinically vulnerable people and their energy supply.
I am sure you will appreciate the importance of this work and the need to have a systematic approach to ensuring clinically vulnerable patients are never disconnected.
We need to do all in our collective power to support people to maintain their independence safely in their own homes and this should not be jeopardised by having their energy supply terminated.
Finally, as energy prices rise, we are all conscious of the impact this will have on those people who cannot afford to pay for their energy. This is of grave concern to everyone, I am sure, especially given the evidence relating to excess winter deaths and serious illnesses as a result of cold weather. I, therefore, ask you to reconsider the disconnection policy for all energy companies and mirror that which is in place within the Water Industry where domestic supplies cannot be disconnected. In doing so, I am confident that this will save lives.
I look forward to your urgent response. <unquote
You would think he would have had his legal department look up the statutory authority for such a statement, if there be one, and made more of the statutory duty.
Is it not the bureaucrat language of passively aggressive "begging the question" ? i.e "I know you know what the law is, so why are you ****ing well not following it ?"
Much better to not waste time on such niceties and indicate that you know exactly what the law is and the duties which are entailed. We have too much experience of regulators and their inclinations.
Separate names with a comma.