By David Tuller, DrPH
In late October, the UK’s National institute for Health and Care Excellence (NICE) released its new ME/CFS guideline, which specifically recommend against graded exercise therapy (GET) and a specialized form of cognitive behavior therapy (CBT). Last week, I wrote about how King’s College London continues to host a page on “CBT and chronic fatigue syndrome,” which boasted that “our researchers were among the architects of bespoke talking therapy for chronic fatigue syndrome, which is now one of two treatments recommended in the UK.” (This page is still live as of this writing.)
It seems some branches of the National Health Service around England have been similarly slow to react to the news. it is not clear how widespread this problem is, but someone should check out the sites of all the NHS trusts to assess if they have kept up with the changes.
As of today the North & East Formulary and Referral page for its “Chronic Fatigue/ME Service” includes this sentence: “Our service is commissioned to provide the treatment strategies outlined in the NICE guideline for this condition.” The link from the sentence goes to the now-inoperative 2007 NICE guideline, which recommended both GET and CBT as the treatments of choice. The page does not appear to indicate when it was last updated.
The website for the Barking, Havering and Redbridge University Hospitals NHS Trust declares this: “Our approach is based on principles of Cognitive Behavioural Therapy and Graded Activity/Exercise Therapy.” (Again, it is unclear when this page was updated)
And here’s the current language describing the Newcastle Hospital NHS Trust’s “Chronic Fatigue Syndrome/ME therapy psychology service” on a page indicating that it was last updated on October 29, 2020—just before publication of the draft NICE guideline last November:
“Our team provides individualised care for patients to:
- Sustain or gradually extend their physical, emotional and mental capacity
- Manage the physical and emotional impact of symptoms and loss of physical capacity.
We offer Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) to people with CFS/ME, mindfulness, relaxation and acceptance therapy.”
Some sites have apparently made recent note of the change on their websites, although whether practice has also shifted remains unknown. The Oxfordshire University Hospitals NHS Trust website, for example, indicates that “our treatment approach is informed by current guidelines including the NICE guidelines for ME/CFS and BACME [British Association for CFS/ME] ME/CFS Guide to Therapy.”
The sentence links to the new NICE document and one produced by BACME a year ago that incorporated some similar changes. The page seems to have been updated on November 15th—one day ago.* [Correction: I originally wrote “two days ago,” even though this was posted on Nov 16th.] However, the page still includes the following text under the heading of “Cognitive Behavioural Therapy”:
“CBT is an individualised therapy approach which aims to support you to work towards changes that feel meaningful for you.
It recognises that the way we think about things (thoughts), feel about things (feelings) and what we do (behaviour) are related to each other and how we feel physically.
Understanding this can help you to create helpful patterns and responses which in turn support improvements in your day-to-day life.
Our CBT sessions often involve themes such as optimising activity levels, understanding more about factors that can impact on CFS/ME, and managing the changes involved with having CFS/ME.
As well as using traditional CBT approaches, we often also draw from other modern CBT based approaches including Acceptance and Commitment Therapy (ACT), Compassion Focused Therapy (CFT) and mindfulness.”
The new NICE guideline allows for CBT as supportive care as long as it is not presented as a means of recovery and/or based on the notions that patients are deconditioned and harboring “unhelpful” beliefs about having an organic illness. While the new Oxford phrasing does not mention “cure” or “recovery,” it provides little evidence that clinicians have actually alleviated themselves of their own “unhelpful” beliefs about the condition.
Comments
14 responses to “Some National Health Service Branches Fail to Respond to New NICE Guidelines for ME/CFS”
The MEA and Forward ME, I believe are monitoring the situation, it’s a sign of resistance that could backfire on clinics in terms of litigation. Are they really willing to take this risk?
There’s talk among pwme that they will write to their local CCGs to complain about this.
I noted that one of Chalder’s video’s was removed by a health trust after Doctors with ME wrote a complaint.
Perhaps if enough people complain it might start to make waves. Here’s hoping!
Pwme are not going to stand for this.
my local ME/CFS clinic’s website – Cambridgeshire and Peterborough – says they are guided by the 2007 NICE guidelines. https://www.cpft.nhs.uk/service-detail/service/myalgic-encephalomyelitis-me-chronic-fatigue-syndrome-cfs-70/
They say ME/CFS is a: “condition is characterised by extreme fatigue and tiredness that does not go away with rest and cannot be explained by an underlying medical condition.” So apparently ME isn’t an underlying medical condition.
I’m not surprised they are so out of date. When I first went to them in 2014 they were medical doctor-led and I was advised to rest and to take Omega 3, vitamin B12 and Co-enzyme Q10. When I contacted them again (I think 2016?) to ask for help managing flare-ups impacting my work, they were psychiatrist led. I was told that as I’m severely ill I should give up work and then I’d be less worried about managing my symptoms so carefully. I ignored their advice and am still working safely and effectively, 8 years after I first got severe ME.
It’s worse than I thought. They actually say:
“Although the National Institute for Health and Care Excellence (NICE) 2007 guidelines for the management of ME/CFS are under review, there is evidence that activity management, relaxation, improving sleep and diet, exercise/physical activity, managing stress, unhelpful thinking patterns and setbacks can support improvement.”
Does anyone else think it’s odd/rather schizophrenic to employ Acceptance and Commitment Therapy (ACT) that seems devoid of all compassion alongside Compassion Focused Therapy (CFT) that has compassion at the heart of it? I don’t see how a “Tough luck, mate, now you’ve got to make the best of a bad job” approach fits with one that has being kind to oneself and others at its core.
Some people might decide to try an ACT- style approach off their own bat but it’s so heartless for others to tell them to do it. Any compassionate doctor faced with a patient with symptoms for which there is currently no treatment should be fighting on their behalf for the biomedical research that could offer them hope. They should not leave them without hope by so clearly throwing in the towel.
“The new NICE guideline allows for CBT as supportive care as long as it is not presented as a means of recovery and/or based on the notions that patients are deconditioned and harboring “unhelpful” beliefs about having an organic illness. ”
During the NICE process, I didn’t see anyone raise the issue of why CBT was the only contender as a supportive therapy, which was a great shame. The focus seemed to be on trying to remove CBT as a treatment – OK, I get that – but is it really the best supportive therapy for ME patients? There are many different therapeutic approaches that could be helpful for patients who want/need psychological support but CBT is the only one mentioned in the NICE guideline, I think. (Please correct me if I’m wrong.) Different people have different needs and respond to different approaches and yet, in the UK, we’re all now stuck with CBT because the IOP(now IOPPN)’s CBT-ers with their behavioural approach appear to have won their power battle with the psychoanalytic school of thought via a strategy of making out that their way would lead to significant reductions in physical healthcare spending. (I’d recommend that UK patients/advocates read this-https://www.researchgate.net/publication/276465880_Paradigms_politics_and_pragmatics_psychotherapy_in_primary_Care_in_City_and_Hackney_-_a_new_model_for_the_NHS)
Patients are the losers, but it doesn’t seem to be about good patient care anymore.
Relaxation Acceptance Therapy, anyone else smell a rat.
I am not sure the Leopard is capable of changing its spots. The Leopard doesn’t believe ME exists and that the chronic fatigue has a psychological cause. I would advise anyone who has or thinks they have ME/CFS to avoid all NHS CFS clinics and find a supportive GP and private General Medicine Consultant if they can afford it. Without PACE supported GET/CBT the NHS may well remove funding and close the ME/CFS clinics and they may well pivot to long covid patients instead advocating GET and CBT. The Lancet may already have a paper to publish.
The Devon and Exeter ME clinic (they refer to it as ‘Chronic Fatigue/ME) still link their services to the 2007 NICE guidelines. Doctors in the hospital are quite emphatic that they believe ME to be a mental health condition and display open hostility to patients if they attend A&E for other conditions or if they are admitted to a ward for unrelated illnesses. They appear quite resistant to any information that challenges their fixed beliefs.
“Bristol M.E. Service: Supporting people with M.E./CFS and PVFS across Gloucestershire, Bristol and North Somerset
We have renamed our Service from “Bristol CFS/ME Service” to the “Bristol M.E. Service”, in line with the change to the name of the condition (from CFS/ME to M.E./CFS) suggested by the updated NICE Guideline . We recognise that many patients and patient charities prefer the term M.E., which was the original term used in the UK.”
https://www.nbt.nhs.uk/our-services/a-z-services/bristol-me-service
Another UK NHS supposed specialist Service that has not updated the website. I wrote complaint to the NHS website and it was just lost in their automated response that it was not their problem as it was web content, but they are the web content publishers. Ridiculously poorly managed or rather totally unmanned or managed.
https://www.nhs.uk/Services/hospitals/Services/Service/DefaultView.aspx?id=107536
Our departments and services
CFS / ME Management services
This Department is managed by Epsom and St Helier University Hospitals NHS Trust
Our Chronic Fatigue Service (CFS), based at Sutton Hospital, with clinics at St Helier Hospital, provides management and support for people with CFS.
As there is currently no cure for chronic fatigue syndrome, treatment is presently based on the management of symptoms to improve function and quality of life.
Management of symptoms will not necessarily take the symptoms away; however, there is evidence which supports a significant reduction in symptoms with improved quality of life through the implementation of lifestyle management strategies. We use a combined bio-psycho-social and cognitive behavioural therapy models in teaching you to manage your symptoms.
We provide one-to-one consultations, lifestyle management and education groups.
Please be advised that due to limited resources we can only provide advice and information regarding the management of chronic fatigue syndrome to patients currently in the service. If you have any queries of a general nature we advise you to contact your local support group or other voluntary CFS/ME organisations.
We do encourage local support services to contact us for information on management of CFS/ME in general and to liaise with us in the management of patients who are being seen in their services and ours.
https://www.epsom-sthelier.nhs.uk/chronic-fatigue-syndrome
My local service (Oxford) is run by two Psychologists and a Physiopherapist which tells a story.
It’s blatantly obvious that nothing has changed. It’s run by exactly the same people (one of whom was involved in PACE). The only change has been minor tweaks in the language on their website to try and ameliorate the underlying service offer. I’ve been ill for twenty years and their service does nothing for me. Just put the money into proper research so that we can make some real progress.
I’ve highlighted some of the text from their webpage below.
Recovery is a really important part of what we hope to offer to people who attend our service, though the term ‘recovery’ can mean different things to different people.
There is no set number of sessions with the service though as a guideline people tend to attend four to six sessions of specialist physiotherapy or six to 12 sessions of CBT with a Clinical Psychologist.
Cognitive Behavioural Therapy (CBT)
CBT is an individualised therapy approach which aims to support you to work towards changes that feel meaningful for you. It recognises that the way we think about things (thoughts), feel about things (feelings) and what we do (behaviour) are related to each other and how we feel physically.
Understanding this can help you to create helpful patterns and responses which in turn support improvements in your day-to-day life.
Our CBT sessions often involve themes such as optimising activity levels, understanding more about factors that can impact on CFS/ME, and managing the changes involved with having CFS/ME.
19 November 2021
The Oxford Service even still calls itself the Chronic Fatigue Service, which is a catch all pot for anyone who is fatigued. There is no recognition or seeming requirement to include any clinicians other than the Psychologists and Physios who have delivered the CBT and GET in the past…. It’s interesting to constrast this to the very recent Mayo paper where 21 Clinicians specialising in ME/CFS described their best practice approach to management. They concluded the following:
‘The United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/CFS……Even after diagnosis, patients struggle to obtain appropriate care and have often been prescribed treatments, such as cognitive-behavioral therapy (CBT) and graded exercise therapy (GET), that could worsen their condition………In the past, CBT and GET were studied and recommended for ME/CFS on the basis of the disease theory that “the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviors (avoidance [of activity]),” leading to considerable deconditioning. However, GET and CBT studies have been widely criticized for their methodology, inadequate tracking of harms, and a disease theory that conflicts with the evidence of multisystem biologic impairment……The largest of these studies is the 2011 PACE (Pacing, graded Activity, and Cognitive behavior therapy; a randomised Evaluation) trial. PACE reported that these therapies were safe and resulted in recovery for 22% of participants and improvement for 60% to 61%…… However, outcome measures were modified midtrial without a clear rationale. When the data were reanalyzed with the original protocol, improvement decreased by a factor of 3 and recovery rates decreased to 7% for CBT and 4% for GET, not significantly different from controls. The US Agency for Healthcare Research and Quality reported that many of these studies used definitions that could have included participants with other conditions and found little or no evidence of efficacy once these studies were excluded from the analysis.Finally, contradicting safety claims, 54% to 74% of patients have reported experiencing harms after GET.
The Oxford Service even still calls itself the Chronic Fatigue Service, which is a catch all pot for anyone who is fatigued. https://www.ouh.nhs.uk/chronic-fatigue/research/ There is no recognition or seeming requirement to include any clinicians other than the Psychologists and Physios who have delivered the CBT/GET in the past. Their team comprises two Psychologists (who of whom was involved in PACE) and a Physio. The only difference seems to be a watering down of some of the language on their website to placate NICE. They do still talk about recovery and while I like to remain optimistic, I’ve had this disease for twenty years and tried pretty much everything. I am not deconditioned. I am not depressed and I am not de-motivated. I am fed up with this dead in the water paradigm about CBT/GET resolving my illness beliefs and deconditioning. I would far rather the money go into biomedical research than this ongoing charade.
It’s interesting to constrast this position to the very recent Mayo paper where 21 Clinicians specialising in ME/CFS described their best practice approach to management. They concluded the following: ‘The United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/CFS……Even after diagnosis, patients struggle to obtain appropriate care and have often been prescribed treatments, such as cognitive-behavioral therapy (CBT) and graded exercise therapy (GET), that could worsen their condition………In the past, CBT and GET were studied and recommended for ME/CFS on the basis of the disease theory that “the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviors (avoidance [of activity]),” leading to considerable deconditioning. However, GET and CBT studies have been widely criticized for their methodology, inadequate tracking of harms, and a disease theory that conflicts with the evidence of multisystem biologic impairment……The largest of these studies is the 2011 PACE (Pacing, graded Activity, and Cognitive behavior therapy; a randomised Evaluation) trial. PACE reported that these therapies were safe and resulted in recovery for 22% of participants and improvement for 60% to 61%…… However, outcome measures were modified midtrial without a clear rationale. When the data were reanalyzed with the original protocol, improvement decreased by a factor of 3 and recovery rates decreased to 7% for CBT and 4% for GET, not significantly different from controls. The US Agency for Healthcare Research and Quality reported that many of these studies used definitions that could have included participants with other conditions and found little or no evidence of efficacy once these studies were excluded from the analysis.Finally, contradicting safety claims, 54% to 74% of patients have reported experiencing harms after GET.
My local Oxford Chronic Fatigue Service ttps://www.ouh.nhs.uk/chronic-fatigue/ looks very much like a catch all service for anyone who is fatigued. It’s still run by two psychologists and a physiopherapist. One of the psychologists was involved in the PACE trial.
It’s peculiar that given that the PACE trial and their approach and stated outcomes have been completely discredited, they continue to offer what looks to be an identical service to the past.
The only thing that seems to have changed is some wording on their website to placate NICE.
In their ‘what therapy involves’ section, they state that ‘recovery is a really important part of what we hope to offer to people who attend our service, though the term ‘recovery’ can mean different things to different people.’ Having been ill for twenty years, I have tried pretty much everything to improve or recover. I am not deconditioned, nor am I depressed or holding any dysfunctional illness beliefs. Why on earth would (or should) we persist with an approach which does not deliver any real benefit.
The dominance of the bio-psychosocial model has held back biomedical research for the past twenty years. Despite this, researchers have now conclusively demonstrated the biological underpinnings of this disease. They should be congratulated.
It is shocking that clinicians and others in the UK medical profession are allowed to continue to behave in such a way and disregard the sentiment in the recent NICE guidance. They don’t agree and are sitting in post, so the best practice is ignored or they simply navigate around it. In any other profession, you would be fired for behaving in that way. We seem to have unaccountable clinicians who, in many cases, are paid fabulous sums of money from the public purse.
Best wishes to the fatigued who have benefitted from talking to psychologists and physios about their beliefs and stamina. I wouldn’t have anything to do with them. I say shut these units down and start again with a true multi disciplinary team or put the money towards biomedical research which is the only way we will make any real progress towards effective treatments.
Wendy