UK - NHS Recovery College - information on ME/CFS

livinglighter said:
A proper investigation is required because ME is a classified as a neurological condition. The SNOMED CT location says: structure of the nerves.



It’s either that or it’s made up.



Arranging things alphabetically is a sign of OCD. OCD is also part of Bodily Distress Disorder because the patient is also obsessed and distressed by normal bodily sensations such as the normal aches and pains a healthy person feels after exercise, or the ones felt with light exertion if they are deconditioned.

I still don’t think someone could frame themselves so well to include the perfect BPS analogy of a CFS patient.
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I meant a proper investigation into whether this type of CBT should ever have been offered and is harmful - doubly bad that the cause is biological. The rest of it notes about false memory scandal - which was huge at the time for the psych world, because it talked of people having false memories 'implanted'. It should have been a cornerstone moment for the profession. All this just reminded me of how those 'concerns' have gone unheeded or old habits of not caring about ethics have crept back in.

Arranging things alphabetically is not 'pathological' ie something that you'd diagnose someone clinically for - or should diagnose them. My point is that if you surveyed the entire population you'd find many more people do this or have done this than are ill with any of these things. I really resent people using such significant terms without good cause for a multitude of reasons.

And what the heck it has to do with ME other than rumour-mongering intended to harm by having people with a serious illness taunted with perfectionism lies on top of bad treatment from medics I don't know. In all the offices I worked there were people who arranged their pens/desks or whatever - maybe 1 in 10, and probably 1 in 50-100 I worked with had ME. There was absolutely no overlap between the two, which is extraordinary given probability not one of the neat-freaks (self-called) also had ME. And yes I think such tropes need to be made clear in any media guides under that term. Certain pieces of work are likely to think they can get away with it more sliding it through supposed 'case studies/personal stories'.

And yes there is a great possibility that this has had quite a bit of input to 'create and shape it' - my curiosity is we don't forget the potential different ways (not forgetting that putting the thoughts into someone's head in the first place is hardly different but actually more disturbing) this could have happened.

What on earth it has to do with ME and a clinic offering medical support for that physiological condition I don't know. Says everything that apparently all they can offer is something for 'mental health' that I personally think actually significantly harms psychologically rather than helps anyway, and they aren't ashamed of that dearth. I think being happy to not reassure people that their only treatment is going to be a fishing expedition for an accusation of perfectionism should be reason to strike off any contracts.
 
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Trish said:
Can someone provide a link to the case study? I can't find it on the NHS pages about ME/CFS and the Recovery College seems to vary from region to region.

Edit: Correction, it was linked from the MEA article above:
https://www.recoverycollegeonline.co.uk/recovery-wellbeing/diagnosis-types/me-cfs/
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are we allowed to 'hard copy' the whole thing for posterity or archive/cache this somehow? I think it is an important 'piece of history'. Remembering the sudden change to claims of 'it was never fixed increments' and 'was just rehab' rebrand of GET around the time of the guidelines I'm conscious that these things are retained to show where stigma was perhaps created or reinforced from certain sources etc. But also examples for the future of what not to see happen again
 
I would like to know why the Recovery College, whose focus is on Mental health disorders, lists ME/CFS at all. It's basically none of their business.

They don't list MS, or Parkinson's Disease or asthma or diabetes or other chronic physical diseases, so why ME/CFS?

Persistent physical symptoms, with examples of FND and chronic pain, is listed too.

Here's a link to their list of conditions:
https://www.recoverycollegeonline.co.uk/recovery-wellbeing/diagnosis-types/
 
chrisb said:
It was he that NICE went to in the course of discussions about the "pause". You can check it out. ME falls within his directorate, unless it has recently changed.
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I also recall this as I was so shocked that ME/CFS was in this section and under his purview at all. I often wonder whether this has been changed and what the mechanism to change it might be, as I don't recall hearing anything about it changing in terms of organisational structure. And parties seemed pretty resistant to change.
 
I recall the events now. I wasn't aware it was a mental health professional who was having the discussions.

Ariel said:
I don't recall hearing anything about it changing in terms of organisational structure. And parties seemed pretty resistant to change
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bobbler said:
It shouldn't be anywhere near that directorate.

And if it is being forced there that is the very centre of the issue
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chrisb said:
...and the recollection has come to me that he thought it might be better if the guideline were pulled altogether, rather than merely paused.
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If this is the case, then it could be at the centre of the issue. However, I did a quick check, and there is no NCD for neurology, so it can be said that someone had to answer. Still, It's a coincidence that the person responding is NCD for mental health and believed the guideline so bad that all of it needed to be pulled entirely. The word 'neurological' appeared throughout the draft, but all mentions were removed. That was a significant loss because it would have quickly stopped the deconditioning narrative, and tests that could potentially find abnormalities could have been more successfully requested.

The issue with ME is there is no neurological involvement. It's a recorded neurological condition without neurological practice.
BPS models are applied to nearly everything, but it doesn't ignore the biomedical cause of the condition as if it doesn't exist. With ME/CFS, a biomedical knowledge gap urgently needs addressing for the BPS model to include it.

I know there is great emphasis on attending a ME specialist fatigue clinic, but unless they recognise PEM, I'm not sure such clinics exist. I know I attended one many years ago, but that was by luck because one of the physios I saw was a charted neuro-physio who could write about ME biologically. I needed proof for disability claims even though the lead clinician said they couldn't provide them. I was pushy and requested them during all my appointments until the physio I was told couldn't do it gave in.

One of my letters mentions the significant impact of CFS/M.E on the body's physiological responses. I've had a lot of health care professionals try to rephrase my condition as purely mental, but when they read my letters, they tend to be surprised and "back off."

Based on my experience, do I think the NHS ME services need probing? The answer is yes.
 
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