ME/CFS services in the United Kingdom

Many thanks for this heads up, I have used it as follows to alert our local NHS Alliance Commissioning & Contract Team :


'Dear Nicola and Carrie,
I hope the recent Suffolk/North Essex Alliance (CCGs) position paper meeting on Me and CFS further service developments was a positive experience regarding our local petition for adequate local services.

The topic of ME services within the NHS was recently discussed at a ForwardME meeting.

https://forward-me.co.uk/14th-july-2021/

Please note following;

https://forward-me.co.uk/
Baroness Scott of Needham-Market

Ros Scott has been a member of the House of Lords since May 2000, and has a particular interest in the Voluntary and Community sector, and the environment.

She is keen to foster better understanding of ME, and is a member of the All Party Parliamentary Group for ME.

Email: ScottRC@parliament.uk

regards,


B

Suffolk Youth & Parent Support

and

Norfolk and Suffolk ME and CFS Service Development Group.

reMEmber’s observations on the ME/CFS services in the NHS
This was led by the charity reMEmber, who made some good points. I'm going to duplicate here

These services were set up more than ten years ago but there has been no national review of them. The model was not to our liking from the start.

Our preferred model would have been along the lines of that formerly run by Professor Tony Pinching at Barts, with a consultant who would see all patients referred to the service, who could prescribe medicines, and backed up by a small team of experts eg occupational therapist, community nurse.

There is not comprehensive coverage. Some places have never had a ME/CFS service. In other places there was once a service which has now closed down. We believe that there is no service at all in Wales and not much in Scotland.
Some clinics have no doctor attached. In others there is a doctor but he or she may be only part-time. GPs with a Special Interest have been shown not to be the answer; patients need to see an expert doctor, but many do not see a doctor at all at their ME/CFS clinic.
The deficiencies in these services were highlighted in two important reports in 2017. “Specialist treatment of CFS/ME; a cohort study among adult patients in England” by Bristol University found that two-thirds of patients seen by those services reported, after one year, that their condition was only a little improved, unchanged or worse. Five years after being seen 85% of these patients reported they still had CFS/ME, 9% said they were uncertain and only 5% said they no longer had the condition.
The second study “Spotlight on specialist services; UK healthcare for people with ME”, produced by AFME found that less than half of the Clinical Commissioning Groups (CCGs) and their equivalents in Northern Ireland, Scotland and Wales commissioned a specialist service for CFS/ME and less than a third recorded any data on how many people in their area had the illness.
Early, accurate diagnosis is essential, but patients are not seen early enough and there is a high rate of misdiagnosis by GPs (40% at Newcastle and Barts for example)
Many centres have no domiciliary service or provision for the severely affected who cannot get to an out-patient facility. There is nowhere with an in-patient facility for ME/CFS patients and the ME/CFS clinics do not provide for children with the illness.
Therapy in the centres is almost entirely CBT or GET (because of NICE and PACE). There are some exceptions; when Dr Amolak Bansal (Immunologist) led the South West London and Surrey service they offered Vitamin B12 by injection, Vitamin D3, mindfulness meditation, hormones including melatonin for sleep disorders, antivirals, antibiotics and Pacing – the therapy preferred by most ME/CFS people. A key point was that these therapies were offered on a personalised basis (not “one size fits all”). We attended their tenth birthday party in 2016; a number of past patients were there, and all said how improved they felt in mind, body and spirit – they knew they were not cured but they were able to manage their condition much better.
reMEmber has, on a number of occasions, brought these shortcomings to the attention of the DHSC and NHS England. Sir Nicholas Soames, when an MP, and the Countess of Mar have both asked Questions on our behalf in Parliament, but the answer is always the same – that provision for CFS/ME is a matter for the local Clinical Commissioning Groups (CCGs). Our attempts to engage CCGs on this subject have been unsuccessful; looking at ME provision seems to be very low down on their list of priorities.
However, with the re-organisation of Forward-ME and with the new NICE Guideline in mind, now may be a good time to focus the Health Departments once more on this subject.
A united Forward ME would carry much more weight than an individual charity. We suggest pressing for a thorough review of the ME/CFS services within the NHS with a view to establishing a comprehensive, nationwide service. reMEmber recommends:

All patients to be examined by an expert consultant physician
Prompt, accurate diagnosis
A domiciliary service for the severely affected
A dedicated service for children and young people with ME/CFS.
Multi-disciplinary teams in all centres'

 

Job ad

NHS
Highly Specialist Psychologist in Pain & ME / CFS

https://restless.co.uk/job/nhs-highly-specialist-psychologist-in-pain-me-cfs-clapton-916647429/

either they still haven't got the memo or ACT is the way to get around the possible removal of CBT from the guidelines issue.

 

It will be interesting to see the final wording, but the latest 2020 draft NICE guidelines could be interpreted as recommending CBT for ME/CFS. They clearly state it is not a curative treatment, but do suggest it is a useful supportive intervention.

It is sad if they do leave the draft as it is, as there is no research at all on the value or otherwise of supportive CBT in ME/CFS; at best NICE should only be recommending appropriate psychological support should be available to those that need and/or want it not highlighting just CBT without any objective justification. There continues a worry that the new guidelines will allow current specialist services to just rebrand CBT and GET as supportive therapy and activity management, but continue as they are under a ‘pacing up’ umbrella.

From this ad, given it is also a pain clinic, it is not clear how this service envisages the ongoing use of CBT, ACT, mindfulness or compassion focused approaches with ME. They are not necessarily a bad thing if they are solely supportive and presented as unevidenced experimental options, and as long as they are not offered to the exclusion of the management of all the other symptoms of ME, such as hypersensitivities, food intolerances, orthostatic intolerances and many others.

 

A bit too many social media posts on how this is interpreted for chronic pain. ...
Along the lines of being discharged as no room for a " mindfulness nook" in a living room and suggestions of " journalling" as a pain option...

I'm sure there must be some clinicians working wonders somewhere but too many anecdotes along these lines to not raise red flags .

 

Sounds like they've never seen a patient with actual ME/CFS...

It contradicts the importance of people being given an early diagnosis and being supported to manage their 'energy envelope'.

Given that people are most likely to recover in the early years, are they aiming ACT at people who have had the condition for several years? Surely, the long timers wouldn't want to waste their precious limited energy and health attending clinics who are going to tell them to accept their serious and chronic ill health? Bizarre and definitely implies they think ME/CFS is a mental health, 'MUS' or 'functional' condition.

 

I really hate the term 'living well', it completely trivialises how difficult it is to suffer from a serious chronic illness. There is a big difference in managing ones ill health as best as possible to have the best quality of life you can within the confines of severe pain or severe energy impairments (not to even mention all the other debilitating symptoms of ME, social isolation, lack of support, financial difficulties etc.) and 'living well'.

 

Wish I could give that post multiple likes.

This "living well" business is insidious. The implication that it is wholly within the power of the person suffering chronic illness to change their lot.....simply by a change of attitude.

This is seriously regressive stuff. Can you imagine the outcry today if it became known that someone who belonged to an ethnic minority or was gay, or transgender was sent to ACT when they complained they weren't being treated fairly, that obstacles were being put in place to prevent them participating in society?

So why is it acceptable to do this to people living with long term health conditions?

 

Yes. They've just cut & pasted the stuff about chronic pain and added ME/CFS. They seem to have no sensitivity to the idea that illness can be severely limiting such that human needs cannot be met without additional support.

 

They have a special permit.

 

Even worse, consider the extreme whininess of most of those people having to deal with minor inconveniences to their privilege, like Clare Gerada ranting for months about how she hates wearing masks, as if her opinion held any value on whether they are useful. They can't even deal with minor criticism, the mere suggestion that they are not perfect is basically an attack on their person and everything they represent.

This minor trivial adaptation is too much, and these people go around telling people to suck it up dealing with 1000x worse, as if they are perfectly equivalent. If they'd live a single day in our bodies they would collapse into depression, they clearly cannot endure this much hardship, the worst thing they've clearly ever endured is having their drink served in the wrong type of glass.

 

Looks like a fairly typical HR exercise of squeezing a new responsibility into an existing service, or shifting personnel across from one service area to another, or circumscribing a new position as the best fit for a preferred candidate. None of which is very promising from a service user perspective.

Acceptance is likely a necessity for anyone faced with life changing experiences if that person is not to substantially limit the options (such as those might be) that they have for the best available outcome of that change. The principle in health terms is - "yes compared to where you were, your life is now crap, now what are your options for the crap not to overwhelm you ?"

ACT as an intervention for chronic pain is primarily concerned with just a single dimension of disease (pain) and if the patient has ongoing illness which is the source of pain, then the patient will likely have access to specialist support and/or treatment that will form a large part of the ACT area of reference. That specialist support and/or treatment is currently absent for ME/CFS and the therapist is free to expand their area of reference to every dimension of disease the patient reports, with a strong possibility that their illness will be reduced to a behavioral problem, irrespective of any lip service paid to 'organic disease'.

The reality for most PwME is that across the multiple impairments they have, that for sheer necessity they are living somewhere close to the optimal/maximal activity they can achieve and making substantial behavioural changes requires exceptional investment of resources that are in short supply. Yet ACT demands:

and

 

Seems so:

https://www.healthwatchhackney.co.uk/news/mental-health-trust-pulls-out-of-chronic-fatigue-service/

 

Does anyone understand what is going on here? ELFT were the people who put out a ridiculous video with Rona Moss-Morris on CBT etc. that I think I quoted in my NICE report. It sounds as if they have withdrawn from ME as not part of their core business?

 

They set up the new 'Chronic Fatigue' service by merging with the existing pain clinic in 2018 apparently. But the new service does include 'Chronic Fatigue Syndrome' patients. The news article was from 2018, I quoted it to show the CFS/ME treatments are simply an add on to the pain approach.

https://www.hackneyicare.org.uk/kb5/hackney/asch/service.page?id=JL22oAmw39M

 

interesting, this might be what is happening elsewhere also(?)
see
https://www.s4me.info/threads/royal...nic-fatigue-cfs-aug-5-2021.21719/#post-361100

 

This is one of the many papers Professor Crawley had to correct based on the investigation that the Health Research Authority requested be undertaken.

 

When they have poor follow-up, they seem to overlook this and tend to report results without taking them into account. This was what Brian and I found with the CBT paper published by Chalder, Wessely and company based on clinic data.

 

Merged thread
No idea of the content and not a recommendation.

https://www.sussexcommunity.nhs.uk/...eople-with-long-term-health-conditions/499431

eta: interesting that they use ME rather than CFS.