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.