UK North Wales - Living Well Service for ME/CFS and Long Covid, Betsi Calawadr University, Claire Jones

[Hutan]

The ideal candidate was expected to have an 'ability to overcome psychological resistance to potentially threatening information' and there was a suggestion that the appointee may have to work in a 'highly emotive atmosphere'.

Well, there's a neat summation of the evidence-free and frankly bigoted ideology that's being imposed on sick people. At the expense, by the way, of taxpayers.

Wouldn't it be nice if they were actually recruiting for a psychologist to assist health care professionals to move on from their unevidenced beliefs about ME/CFS - and, from previous experience, anticipated 'psychological resistance to potentially threatening information' and emotive reactions?

But yeah, I guess that's how they see us: us fiercely clinging on to our false illness beliefs even though we could recover if only we would listen to their valuable information about sleep hygiene and thinking positively.

 

[Hutan]

I have missed where the link between this and CRESTA is? is this service getting its ideas from that or something?

Yes, sorry, I didn't make it clear that that post was quoting parts of the North Wales Living Well service website. Under the information on Physical Activity, there is a link to the Cresta Fatigue Clinic booklet on fatigue by Deary and Newton et al.

 

[MrMagoo]

Does anyone remember 2-3 years ago, the MEA went through a phase of spotting this type of job ad/person spec and writing to the Trust about it? It happened a few times in what seemed like quick succession.

I think most of the time the response was that the lead clinician would have to fill in/oversee any type of psych call at times so would be dealing with sections, drug and alcohol misuse etc as well as their “day job” hence the wording related to that more than “ME patients will need to be convinced they need help and it causes them to kick off”

 

[Hutan]

That makes no sense to me - at all. Does the lead clinician of an MS service need to be a psychologist for the same reason - because their clients might occasionally have a need for formal psychological support?

I would have thought the rates of drug and alcohol misuse and rates of needing to be sectioned among people with ME/CFS would be no higher than in the general population. Possibly less, due to the issue with alcohol intolerance.

 

[Nightsong]

In my view no new NHS psychobehavioural clinic should be brought into being without a campaign against it. MPs and councillors and local NHS chiefs should have been contacted; one could try to get the local media on side with some personal stories about how desperate patients are for proper supportive medical care & how retrograde and out-of-touch the proposal is - it should have been made abundantly clear that psychobehaviouralism or BACME-style clinics are very far indeed from what patients actually want.

Patients have absolutely nothing to lose by opposing them. Once they are established they will be very difficult to dislodge but strong, sustained opposition beforehand may tip the balance.

 

[Kitty]

Patients have absolutely nothing to lose by opposing them.

Absolutely not, but they're up against it if ME/CFS charities are supporting the provision. It could easily make the patients sound a bit hysterical to people who know nothing about the issue.

 

[MrMagoo]

That makes no sense to me - at all. Does the lead clinician of an MS service need to be a psychologist for the same reason - because their clients might occasionally have a need for formal psychological support?

I would have thought the rates of drug and alcohol misuse and rates of needing to be sectioned among people with ME/CFS would be no higher than in the general population. Possibly less, due to the issue with alcohol intolerance.

Sorry, I meant they would say the post would have to stand in across the whole of the psych services at times, not just the ME part, so basically they mostly do ME - but not exclusively.

 

[Turtle]

In my view no new NHS psychobehavioural clinic should be brought into being without a campaign against it. MPs and councillors and local NHS chiefs should have been contacted; one could try to get the local media on side with some personal stories about how desperate patients are for proper supportive medical care & how retrograde and out-of-touch the proposal is - it should have been made abundantly clear that psychobehaviouralism or BACME-style clinics are very far indeed from what patients actually want.

Patients have absolutely nothing to lose by opposing them. Once they are established they will be very difficult to dislodge but strong, sustained opposition beforehand may tip the balance.

Even in The Netherlands these kinds of LC clinics were closed down, because they didn't work.

 

[Hutan]

I've received a very good information-filled response from Jan of WAMES:

**********
Hi XXX,

No I have not had time to follow the S4ME forum thread until this morning. Too much advocacy work to do!

Thank you for bringing it to my attention. And well done for having the ‘strength’ to ask us ‘What are these charities doing?’, as Hutan puts it. We can only speak for ourselves.

Hutan is wrong. WAMES has not endorsed the service. We support the aim of the management team to transform the previous CFS services and offer additional support. What we said at the launch of the expanded service in July 2025 was that

WAMES is delighted that the ME/CFS service in north Wales aims to offer all adults with ME/CFS a service that is shaped by the ME/CFS NICE guideline (2021).​

​

The development of the service will be an ongoing process, so please contact us with your experiences of the service, so we can get a good picture of its strengths, weaknesses and gaps and we will then feed back to the Health Board with constructive comments.​

​

North Wales Health Board launches expanded ME/CFS service | WAMES (Working for ME in Wales)​

WAMES has engaged with Betsi HB as well as many other Services in Wales, plus the Welsh Government officials who issued the remit from the previous Health Minister. We have many concerns about the remit HBs were given and we are actively working to have that improved and we have also been reinforcing with the management teams the need for implementation of NICE and especially for services that are PEM/PESE friendly. Everyone is on a steep learning curve and I believe Claire Jones in Betsi is in contact with Physios for ME and many others in the ME world, and is keen to learn more about how to implement NICE guidelines. We hear from participants that the new ME course offered by Betsi is much improved on the previous CFS courses they ran.

The lack of medical leadership in the specialist teams is one of our concerns. We do not know if it would be possible to recruit informed medical leadership even if Welsh Government were to agree to fund that. Recruitment for AHPs to be part of Service Teams has been difficult for many of the Services. There appears to a shortage of suitable applicants in some parts of Wales. Each of the services have to cater for a number of conditions and so staff usually need to acquire knowledge about some conditions they are not familiar with, but will be expected to support.

BACME publications are influential across Wales and WAMES would like to see well produced alternatives and a rigorous challenge to the unevidenced hypothesis that underlies their approach. I believe I mentioned something about this in the S4ME forum last year.

Part of our advocacy work involved the recent publication of our survey of the services ME/CFS Services Wales Report 2026 now available | WAMES (Working for ME in Wales) which clearly showed the variations and gaps. The next step will be to enable each service to present what their services believe they can offer pwME and to give prospective participants the opportunity to ask questions. That way we will hopefully find out more about the content of the services. That is under development. In May the new government will be elected and we will continue our advocacy with them.

You may post my email reply and I would ask everyone not to jump to conclusions based on snippets of information gleaned from a variety of sources. Both advocacy work and the development of services are surrounded by limitations and restrictions that are not apparent from the outside. If anyone who lives in Wales would like to join us as we campaign for appropriate services, we would love to hear from them.

Best wishes, Jan

***********************

 

[Hutan]

Hutan is wrong. WAMES has not endorsed the service.

That's interesting to hear. The quote that the service has used on the website (see the post upthread) and its covering note
"The WELSH Association of ME Support (WAMES) has welcomed the new model." does make it easy to get the impression that WAMES is endorsing the service, although I guess there are many levels of involvement ranging through conditional support to whole-hearted endorsement.

Certainly it sounds as though Jan is well informed and working to make things better.

BACME publications are influential across Wales and WAMES would like to see well produced alternatives and a rigorous challenge to the unevidenced hypothesis that underlies their approach. I believe I mentioned something about this in the S4ME forum last year.

It looks as though there is a need for decent detailed clinical guidelines that can be an alternative to the BACME materials.

Part of our advocacy work involved the recent publication of our survey of the services ME/CFS Services Wales Report 2026 now available | WAMES (Working for ME in Wales) which clearly showed the variations and gaps. The next step will be to enable each service to present what their services believe they can offer pwME and to give prospective participants the opportunity to ask questions. That way we will hopefully find out more about the content of the services. That is under development. In May the new government will be elected and we will continue our advocacy with them.

This is sounding really great; it sounds as though WAMES is working hard to make the services accountable. I think this is an important way to get improved care while we wait for a research breakthrough. That is, advocating, preferably through well informed patient charities, directly with services for people with ME/CFS, making it clear what is acceptable, evidence based, and helpful, and what is not. We are well enough connected now that we can use the power of our numbers to push for better care.

If anyone who lives in Wales would like to join us as we campaign for appropriate services, we would love to hear from them.

I've copied that sentence just to emphasise it. It sounds as though WAMES could make good use of help.

 

[Nightsong]

to ask us ‘What are these charities doing?’, as Hutan puts it. We can only speak for ourselves.

That (frustrated, rhetorical) question didn't come from Hutan; it came from me, and was in the context of posts about the ongoing debacle over MEA, Elaros, and MEA's increasing collaboration and alignment with BACME.

I would just gently point out that the clinic's web page says that WAMES has welcomed the 'new model'. I'm not going to argue as to whether a welcome constitutes an endorsement, and I don't know the backstory here, but I do think the average Welsh patient casting around to see what local provision is available would look at that quote and think that the clinic has the support of a nation-level patient group.

I hope we can agree that group courses run by therapists don't represent suitable provision. There is really no need for physiotherapists to be involved at all. It's true that there are a few who have learned considerably more about the seriousness of our condition and about patients' needs, and that is welcome, but fundamentally it's in the nature of a physiotherapist to exercise people, and the last thing that we need is exercise.

The recent job advert for a clinic lead talking about mental illness and all manner of psychobehavioural interventions is, at the very least, a really bad sign. Anything called "Living Well" is also a bad sign. Proper medical provision for serious conditions is never called something like "Living Well". Hopefully there is scope for it to be changed for the better.

the need for implementation of NICE

One more point, about the NICE guideline: most pwME do not seem to realise that it is very feasible to construct a wholly NG206 compliant clinic run by a therapist that offers CBT and graded exercise activity management.

I'm uncertain if WAMES has a position on the guideline, but the wholehearted, uncritical welcome that AfME & MEA gave it - that persists to this day - was and remains a very serious error. It has allowed our opponents to falsely portray it as an activists' wishlist, and it has given many pwME a rose-coloured view of what it actually contains. MEA, in particular, seems to now be advocating for NG206 congruence along the lines envisaged by BACME, even though that is wholly contrary to what patients need. In my view the guideline should be used as a cudgel where it is in patients' interests to do so, but it is in no way binding on patients or charities, and it has many limitations and flaws, some of which are serious.

It sounds as if WAMES has a difficult task. At least we know that there is one national-level charity out there that opposes the BACME model. Good advocates in the ME/CFS world are rare. I'm not in Wales, but hope they find some additional support for their advocacy work.

 

[Hutan]

You are so right @Nightsong. I could not agree with you more.

I also sent an email to the psychologist who seemed to have the job of recruiting another psychologist to be the clinical lead of the service in 2025. I asked some questions and linked to the S4ME Fact Sheet 3 with information for health professionals. Hopefully there will be a response.

 

[Jonathan Edwards]

Absolutely agree.
Jan has provided a very reasonable response but the truth is that compliance with NG206 is very far from what is wanted. And for an 'ME course' to be better than a 'CFS course' seems to illustrate exactly what the problem is. Care for ME/CFS is not about courses about activity management based on folklore.

When I sent the suggested service format we put together here to ForwardME, Charles Shepherd objected that it was not NICE compliant - presumably because a doctor and a nurse was not a 'multidisciplinary team'. If NG206 does not allow for that it is not fit for purpose. I personally think it does allow for it and said so. I got no response.

We need to call spades spades.

 

[Lou B Lou]

I do think WAMES need to be *much* clearer and less ambiguous in stating their stance on the ME/CFS Clinic and 'Living Well' program.

It may be the case that WAMES ' ..... support the aim of the management team to transform the previous CFS services and offer additional support.'

But ME patient readers need to be clearly informed that WAMES Does Not support the Psycho-Behavioural ME/CFS service.

Cognitively disabled patients cannot easily translate any 'softly softly' style texts to extract what is actually meant.
.

 

[Suffolkres]

I've sent this to Jan Russell of WAMES this morning:

Dear Jan,

Have you seen the Science for ME thread about the Betsi Cadwaladr University Living Well Service for ME/CFS and Long Covid?

The Living Well Service's website suggests that WAMES and you personally endorse the service. The website currently contains information suggestive of a psychosomatic interpretation of ME/CFS. It also says that the website is being updated, so it is rather hard to know what to make of the content. Surely, given the harm it can cause, removing inappropriate content should be a priority.

More indicative of the Service's intentions are probably its hiring decisions. Last year the Betsi Cadwaladr University Health Board advertised for a 'Consultant Clinical Psychologist and Clinical Lead' for the ME/CFS Service. It is clear that this service was intended to promote a psychosomatic etiology, for example, in the choice of a psychologist to lead the service. The ideal candidate was expected to have an 'ability to overcome psychological resistance to potentially threatening information' and there was a suggestion that the appointee may have to work in a 'highly emotive atmosphere'.

It is not clear how this ME/CFS service relates to the Living Well Service operated by the same University Health Board.

Can you please shed some light on what is happening with services at the Betsi Cadwaladr University Health Board, and WAMES' interaction and endorsement of them? Would it be okay if I post your reply in full on the Science for ME forum?

Kind regards,

Many thanks for this speedy intervention for clarification.

I noted Rob Messenger's piece on Facebook for the severely affected, and the dearth of services in Wales this week.

Rob was enlisted by MEA Eleros July 2025 on line showcase!

Yes the one I and Trish etc were signed up to but denied entry!

The one which erroneously spoke of Suffolk ICB service development (and their/ her and her management 'rejection' of 'original' Development Group as 'lone voices' ....2022-2024.)......