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

[Trish]

Posts copied and moved from a thread about a BBC article


I agree it's a pretty good article. It's good to show a range of severities, particularly very severe.

Quote from the article:

Betsi Cadwaladr University Health Board in north Wales has expanded its Long Covid service to include ME patients, using funding from the Welsh government's Adferiad programme, external.

Consultant physiotherapist Claire Jones said the service ensured people with any severity of ME could now receive "individualised support".

Does anyone know what 'individualised support' they are providing?

 

[Eleanor]

I knew I'd seen the name Betsi Cadwaladr somewhere. From the ELAROS seminar:

Claire Jones, Consultant Therapist at Betsi Cadwaladr University Health Board’s Living Well Service, will share their progress to introduce an integrated service to support Long Covid and other infection-related chronic conditions, ME/CFS and Functional Neurological Disorder.

Post in thread 'The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app'

Jun 7, 2025

There is an assumption among us on this forum that the intention is for the Tyson materials to become part of the app? Do we have direct proof of this?

Is it related to the PROM and Tyson and Gladwell? Don't bother answering.

From earlier on this thread:

MEA & Elaros joint event
https://www.eventbrite.co.uk/e/inte...=ebdsshother&utm_share_source=listing_android

I think it's worth copying the information again here:

Webinar:

Quote:

Wednesday, July 2
Integrating ME/CFS and Long Covid Specialist Services

Attend to hear about advances in clinical...

• Trish

• 

 

[Kitty]

And national plans and specialist care are such obvious things to ask for, aren't they. But what people like Tomos actually get are so-called services for long Covid being expanded to include ME/CFS, and this is presented by the media as a positive development.

 

[BrightCandle]

And national plans and specialist care are such obvious things to ask for, aren't they. But what people like Tomos actually get are so-called services for long Covid being expanded to include ME/CFS, and this is presented by the media as a positive development.

It feels like the current climate however with BACME being heavily involved means we wont get what is actually necessary, we are going to get a rehab service that we all have to hide form, again.

 

[Kitty]

It feels like the current climate however with BACME being heavily involved means we wont get what is actually necessary, we are going to get a rehab service that we all have to hide form, again.

Yep, that's what I meant. We won't get what's necessary until they start developing services for severe illness, and much of that would only be basic healthcare delivered at home until we have a treatment.

A recognition that people are so ill they need domiciliary care would be a good step forward, though. Until they start seeing it in front of their noses, healthcare professionals are never going to grasp how disabling ME/CFS is and how long it takes people to recover from minor exertions or interactions.

 

[MrMagoo]

I knew I'd seen the name Betsi Cadwaladr somewhere. From the ELAROS seminar:

Post in thread 'The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app'

Jun 7, 2025

There is an assumption among us on this forum that the intention is for the Tyson materials to become part of the app? Do we have direct proof of this?

Is it related to the PROM and Tyson and Gladwell? Don't bother answering.

From earlier on this thread:

MEA & Elaros joint event
https://www.eventbrite.co.uk/e/inte...=ebdsshother&utm_share_source=listing_android

I think it's worth copying the information again here:

Webinar:

Quote:

Wednesday, July 2
Integrating ME/CFS and Long Covid Specialist Services

Attend to hear about advances in clinical...

• Trish

• 

Poor Betsi, this isn’t a good way to commemorate her.


I thought it interesting that the ME service came about from the LC service, indicating that there were no ME services prior to the pandemic? I don’t think there were as I looked into moving to N Wales and there were none. Also there’s no way I can learn a new language at this stage.

 

[MrMagoo]

I want to meme this

It feels like the current climate however with BACME being heavily involved means we wont get what is actually necessary, we are going to get a rehab service that we all have to hide form, again.

 

[BrightCandle]

A recognition that people are so ill they need domiciliary care would be a good step.

We appear to be in a minority on that point unfortunately. I completely agree however domiciliary care is critical and obvious once you accept the basics of PEM and it's consequences, research and healthcare should be seeking to minimise it.

 

[Nightsong]

The NHS job description for the Betsi Cadwaladr clinic lead is available here (link).

If you download the "JD PS English" PDF file, you can see the duties of the post holder, including:

To provide highly specialist clinical psychology services to individual ME/CFS clients within the East area with complex and enduring mental health problems, in various settings including where necessary in-patient facilities

To provide ME/CFS clinical assessments drawing on advanced specialist theoretical and practical knowledge of a wide range of psychological procedures and evidence-based practices

In collaboration with the Head of Health Clinical Psychology Services, to develop, oversee and deliver evidence-based psychological therapies in the ME/CFS Service in the East area

To develop, implement and lead individualised and specialist psychological therapy interventions (e.g. Acceptance and Commitment Therapy, Cognitive Behaviour Therapy, Compassion-focused Therapy, Interpersonal Therapy, Psychoanalytic Psychotherapy, Eye Movement De-sensitisation and Reprocessing)

Despite the fact that it is obviously run on psychobehavioural lines, and that was discoverable with 30 seconds Googling, the clinic's web page (link) carries an endorsement from the Welsh ME charity, WAMES.

An endorsement. For a psychobehavioural clinic.

What are these charities doing?

 

[MrMagoo]

The NHS job description for the Betsi Cadwaladr clinic lead is available here (link).

If you download the "JD PS English" PDF file, you can see the duties of the post holder, including:




Despite the fact that it is obviously run on psychobehavioural lines, and that was discoverable with 30 seconds Googling, the clinic's web page (link) carries an endorsement from the Welsh ME charity, WAMES.

An endorsement. For a psychobehavioural clinic.

What are these charities doing?

Begging for crumbs

 

[Hutan]

Despite the fact that it is obviously run on psychobehavioural lines, and that was discoverable with 30 seconds Googling, the clinic's web page (link) carries an endorsement from the Welsh ME charity, WAMES.

An endorsement. For a psychobehavioural clinic.

What are these charities doing?

Does anyone have the strength to ask them? This looks like a massive step backwards.

 

[Hutan]

@PhysiosforME, alerting you in case there is something you can do to inform Claire Jones who seems to be associated with the service.

 

[Hutan]

People with ME/CFS often have difficulty navigating the healthcare system; care co-ordination and support is therefore crucial. The service offers a wider range of support options including medical assessment as part of a holistic assessment, diagnosis and treatment from a range of health professionals in the community. Support is also available for those with severe symptoms including domiciliary appointments. Dedicated support for ME/CFS remains, but with access to a wider range of support.”

Claire Jones, Consultant Therapist for the Living Well Service

'People with ME/CFS often have difficulty navigating the healthcare system'! Our issues with navigating a healthcare system are tiny problems compared with the problem of the lack of appropriate services. There's no point navigating if there is nowhere decent to go to.

The Welsh Association of ME Support (WAMES)​

The WELSH Association of ME Support (WAMES) has welcomed the new model.

"WAMES’ is encouraged to hear that all adults with any severity of ME/CFS in north Wales will be offered a service that is being shaped by the ME/CFS NICE guideline (2021). We look forward to continuing to work with the Health Board and service users to enable the service to grow and improve, and be a positive source of information and support in the area."

Jan Russell, WAMES

Website: www.wames.org.uk

PLEASE NOTE: We are in the process of updating our website with up to date, relevant and helpful information, both for people with long COVID and ME/CFS. Please bear with us while we make these changes. In the meantime, if you have any questions please contact us.

Hmm. Maybe better things are coming, but that ad for a staff member did not seem to support that. Let's see how long it takes for the website to be better.

Physical activity

Physical activity is different to exercise. Activity is any muscle movement that uses energy. Exercise is planned, structured and intentional movement, aiming to improve strength or cardiovascular fitness. Graded exercise is often prescribed by exercise professionals following a period of illness which may have led to deconditioning or muscle weakness. The aim of graded exercise is to improve muscle strength and fitness. It can also help with improving well-being and quality of life.

Some patients with muscle weakness 12 weeks after COVID-19 infection require this kind of exercise programme, particularly those who have been hospitalised with the infection.

Importantly, the majority of patients with long COVID exhibit symptoms similar to Chronic Fatigue Syndrome. For some patients, symptoms worsen both during and in the days following increased physical activity or exercise. This is referred to as post exertional fatigue. In this instance, graded exercise is not recommended. Instead, pacing of activity is crucial to avoid what is known as the ‘boom and bust cycle’. This is when you might ‘do too much’ on one day and feel unable to do anything the next, due to your levels of fatigue.

Screening by a suitably qualified health professional is therefore recommended for patients with Long COVID to ensure any intended exercise prescription is safe.

What can you do to help yourself?​

Pacing is a strategy used to manage symptoms of post-exertional fatigue and avoid worsening of your symptoms. Avoidance of over-activity can help you to conserve your energy to participate in meaningful activities.

The following resources may help you to learn to effectively pace your activities:

• The Royal College of Occupational Therapists - Recovering from COVID-19: Post viral-fatigue and conserving energy
• The Royal College of Occupational Therapists - How to manage post-viral fatigue after COVID-19: Practical advice for people who have been treated in hospital
• The Royal College of Occupational Therapists - How to manage post-viral fatigue after COVID-19: Practical advice for people who have recovered at home
• CRESTA clinic at Newcastle Hospitals NHS Foundation Trust Information booklet “Managing Your Recovery from COVID-19 Related Fatigue”

That CRESTA clinic booklet from the Newcastle Hospitals NHS Foundation Trust about fatigue after Covid-19 is absolutely dire. So patronising. There is no mention of ME/CFS or post-exertional malaise. Julia Newton led the Cresta Clinic at the time the booklet was made. Julia Newton and Vincent Deary were both authors of the booklet.

Understanding why you have become fatigued can, quite naturally, feel very important.

The reality is that nobody knows exactly what sets off COVID-19 related fatigue or why some people are more prone to it than others. The best guess is that it is likely to be linked to the severity of the inflammatory response that occurs when the body tried to fight the initial Covid-19 infection. It can take far longer to recover from the impact of this inflammation than perhaps people expected.

It is normal for some people to take months to fully recover from fatigue, but recovery is possible. Experience tells us that whilst there are no shortcuts to quicken the recovery process, once you start to see measurable improvement in what you can do, you will begin to feel more optimistic about recovery.

It is also important to note that recovery from fatigue does not always mean a return to a pre-fatigue lifestyle.

 

[Nightsong]

The NHS job description for the Betsi Cadwaladr clinic lead is available here (link).

This reminds me of something. As I think most members are aware, it's not easy to find out what the NHS clinics are doing. Most, if not all, are run along psychobehavioural lines, and tend to misrepresent their "services" in public patient-facing materials.

There is a very useful way to monitor them, though: although they're often obfuscatory on their public websites about what they are offering, they cannot obfuscate in job adverts for their own staff. Setting up search alerts for the two main sites (the BMJ jobs site and the NHS's own) in Google Alerts provides a useful way to determine which NHS clinics are recruiting, what kind of clinicians they're looking for, and what the job descriptions actually say their duties will be expected to be.

Using Google's 'site:' and 'inurl:' specifiers and Boolean operators, you can set up suitable search alerts. These are the two I use - firstly, the BMJ one:

site:bmj.com (inurl:careers OR inurl:healthcareers) ("myalgic encephalomyelitis" OR "chronic fatigue syndrome" OR "me/cfs" OR "cfs/me" OR "long covid")

and for the NHS site:

site:nhs.uk (inurl:vacancy OR inurl:vacancies OR inurl:jobs) ("myalgic encephalomyelitis" OR "chronic fatigue syndrome" OR "me/cfs" OR "cfs/me" OR "long covid")

I've found that you need to set them as "Web" alerts, not "Automatic", and select "All" rather than "Best" alerts, or you won't receive all the results reliably. If you set these two up on the Google Alerts site (link), you'll get a small stream of emails alerting you to new ME/CFS & LC clinic jobs, usually with all the details about what psychological / physiotherapy-based interventions they want the candidate to deliver. You can also search manually, limiting the search to the last month or so. Usually I see about one a month. UCLH have tried to recruit both a physician and a nurse in the last couple of months.

 

[Utsikt]

It is also important to note that recovery from fatigue does not always mean a return to a pre-fatigue lifestyle.

It seems like words have lost their meaning.

 

[Hutan]

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,

 

[Kitty]

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.

Small wonder some of them get "emotive".

 

[Jonathan Edwards]

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

One might almost say that the bastards don't want to get better?