UK - NHS Recovery College - information on ME/CFS

Sly Saint

Sly Saint

Senior Member (Voting Rights)
This post has been copied and following discussion moved from the UK ME/CFS services thread.

MEA
Update: The ‘Recovery College’ withdraws outdated information on ME/CFS
August 3, 2022
https://meassociation.org.uk/2022/0...rewrite-of-their-online-educational-material/

glad to see this bit:
The NICE guideline does not use the term ‘extreme tiredness' – as this is not a good description of the activity induced fatigue that occurs in ME/CFS and is strongly disliked by the ME patient community.
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now if only the main NHS site could be put right............
 
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Sly Saint said:
MEA
Update: The ‘Recovery College’ withdraws outdated information on ME/CFS
August 3, 2022
https://meassociation.org.uk/2022/0...rewrite-of-their-online-educational-material/

glad to see this bit:


now if only the main NHS site could be put right............
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NHS RECOVERY COLLEGE PUBLISHES NEW INFORMATION AND GUIDANCE ON ME/CFS
August 24, 2022

"A few weeks ago we asked the NHS Recovery College to remove and update their information and guidance on ME/CFS.

The outdated information was swiftly removed and we have been working with the NHS Recovery College to produce information and guidance that is based on the new NICE guideline on ME/CFS.

This has now been published on their website"

https://meassociation.org.uk/2022/0...ishes-new-information-and-guidance-on-me-cfs/

great improvement; however, there is a link to the main NHS site which is still the same and asfaics no link to the NICE guidelines. Mixed messages? similarly the User experience, which is quite long, and just the experience of one long-term patient
To give you an idea of the kind of person I am, I’d like to tell you a few things about myself. I’m a perfectionist, if I make one mistake on a piece of paper, I can’t just cross it out, I have to start over again – even if the mistake is the last word on the page. I have often been described as having O.C.D (so what if I have an A-Z CD collection, square up my ruler/pen/notebook and categorise tinned food!).

I have been interested in and very good at sports, right from junior school. I was the captain of the netball team and that was repeated at senior school, in fact I captained every girls’ team and was the first and only girl to be allowed on the football team. The P.E quote in my Record of Achievement states that I was an excellent sportswoman and always gave 110%, which I was and still am extremely proud of.

There’s a reason I’m telling you this, it’s because I want to emphasise the devastation I have felt, and very much still feel, at not being physically able to participate competitively in high intensity sports, such as squash, football and netball. Sport was always an outlet for my aggression, without it I have internalised so much anger. I manage to train now and again with a local netball team but man, do I suffer afterwards. By the next session, I still haven’t recovered from the last. I often get injured and spend weeks out at a time. The next day, I can hardly move and ache literally from head to toe, even my fingers hurt.
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It's just okay, except for this paragraph, which makes me uneasy:
The term psychosomatic is something I have heard over the years. With my limited understanding I used to think that meant I was a hypochondriac and that my brain was somehow inventing things. Later, I came to understand that it meant my mental health was affecting my physical health, that there was a knock-on effect. I have mixed feelings on this to be honest with you. There are times I feel that they are linked – following counselling, therapy and DBT I have thought that my physical symptoms have improved. Yet, other days I can feel on top of the world and still be in pain or exhausted. So, it’s very difficult to give a definitive answer. Maybe I would say that the mental wellness has improved the CFS/ME in an overall sense and reduced the intensity of symptoms, i.e. long-term. But on a day-to-day basis it fluctuates. What I’m trying to say is working on my mental wellbeing has helped but by no means has it ‘cured’ the physical side.
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It's one patient's opinion, but still.
 
Sly Saint said:
NHS RECOVERY COLLEGE PUBLISHES NEW INFORMATION AND GUIDANCE ON ME/CFS
August 24, 2022

"A few weeks ago we asked the NHS Recovery College to remove and update their information and guidance on ME/CFS.

The outdated information was swiftly removed and we have been working with the NHS Recovery College to produce information and guidance that is based on the new NICE guideline on ME/CFS.

This has now been published on their website"

https://meassociation.org.uk/2022/0...ishes-new-information-and-guidance-on-me-cfs/

great improvement; however, there is a link to the main NHS site which is still the same and asfaics no link to the NICE guidelines. Mixed messages? similarly the User experience, which is quite long, and just the experience of one long-term patient

"To give you an idea of the kind of person I am, I’d like to tell you a few things about myself. I’m a perfectionist, if I make one mistake on a piece of paper, I can’t just cross it out, I have to start over again – even if the mistake is the last word on the page. I have often been described as having O.C.D (so what if I have an A-Z CD collection, square up my ruler/pen/notebook and categorise tinned food!).

I have been interested in and very good at sports, right from junior school. I was the captain of the netball team and that was repeated at senior school, in fact I captained every girls’ team and was the first and only girl to be allowed on the football team. The P.E quote in my Record of Achievement states that I was an excellent sportswoman and always gave 110%, which I was and still am extremely proud of.

There’s a reason I’m telling you this, it’s because I want to emphasise the devastation I have felt, and very much still feel, at not being physically able to participate competitively in high intensity sports, such as squash, football and netball. Sport was always an outlet for my aggression, without it I have internalised so much anger. I manage to train now and again with a local netball team but man, do I suffer afterwards. By the next session, I still haven’t recovered from the last. I often get injured and spend weeks out at a time. The next day, I can hardly move and ache literally from head to toe, even my fingers hurt."
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That 'case study' is outrageous, these should always relate, rather than pull against the main message so their choice to include this is suspicious. It is clearly very old with regards treatment or diagnoses so it just a red herring:

"There are times I thought I was going mad. The term psychosomatic is something I have heard over the years. With my limited understanding I used to think that meant I was a hypochondriac and that my brain was somehow inventing things. Later, I came to understand that it meant my mental health was affecting my physical health, that there was a knock-on effect. I have mixed feelings on this to be honest with you. There are times I feel that they are linked – following counselling, therapy and DBT I have thought that my physical symptoms have improved. Yet, other days I can feel on top of the world and still be in pain or exhausted. So, it’s very difficult to give a definitive answer.

Maybe I would say that the mental wellness has improved the CFS/ME in an overall sense and reduced the intensity of symptoms, i.e. long-term. But on a day-to-day basis it fluctuates. What I’m trying to say is working on my mental wellbeing has helped but by no means has it ‘cured’ the physical side."

And then the list of generic symptoms and " This isn’t just a list of symptoms; this is a list of my symptoms. At least 10 of these that are co-existent, it’s like your whole system is dysfunctional." sounds like it is written by the people lobbying for FND.

I'm sorry but as someone who has been around certain schools, and enough relevant experience in the last few decades I can smell that this quote is either made up or has had words put into the mouth (either directly or via therapy) or edited. A person with all of these exact personality traits + these feelings just doesn't exist as far as my pretty strong experience stands. I can dissect why but to be kind I assume it is someone who has been told via therapy various of these perspectives 'to change about themselves' and seen their history in a certain 'set of words' (reminds me of some of the Loftus and Loftus work).

It simply is not relevant or accurate or anywhere near consistent with the guideline for them to have something pushing this - it is just trope-filled to the point I think it has been made up so can't be to any audience other than 'laypersons' (who use tropes about others like 'perfectionist' or 'always gave 110%') and of no help to even those with ME/CFS who might have anything where they have 'mental health' as well (who would not relate as it is manufactured).

I'm sorry but I've hesitated to say 'fake' for most of these, but as someone who has done enough profiles over the years this is at best 'influenced' and 'apparently' an advocate for someone who had old treatment for whatever reason and is advertising it. To have it as the only one makes it even more obvious and totally unjustifiable for inclusion. It adds nothing.
 
chrisb said:
Don't you suspect that it is there because they do?
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I don't just suspect. I'd want evidence it was anything other than a choice because of how website updating works (sign-off processes - which can by the way be FOI'd, to see who chose to include it)

Case studies are chosen, edited, briefed to fit a specific purpose. And to convey information that 'fills gaps'. None of this has information or tone that would connect with an actual 'patient' but laypersons who already believe or want to believe such tropes.

Having received the information they have this seems an act of defiance (EDITED to soften). It references old treatments and has no worth or relevance.
 
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Vacillating between conspiracy and cock-up theories.

Could be that somebody with ill intent made sure that patient story got included.

Could also be a well-meaning attempt at counteracting that other trope, the one of the lazy pwME. They want to make us look 'deserving' as opposed to workshy benefit seekers. In which case I suspect they genuinely don't realise they've just thrown us out of the frying pan and into the fire.

The high achiever trope is a story line supported by many pwME ignorant of ME politics - again, an attempt to appear worthy of support and not lazy - so the NHS writers may well think they're listening to patients by repeating the perfectionist nonsense. Or else they couldn't find a non-hyper-achieving pwME willing to put their personal slacker story up for public perusal?

To get them to change it it may be necessary to provide them with a compelling alternative patient voice. I doubt they'd agree to just taking it down without a replacement.
 
Ravn said:
Could be that somebody with ill intent made sure that patient story got included.
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Like everyone else I smell a rat.

No one with ME would be able to frame themselves so perfectly with the BPS false illness belief model or whatever it’s called.

True ME patient accounts talk about crippling fatigue and feeling as though they’ve been trampled on by elephants! I’ve never read a ME patient account that says anything like this and I’ve read many - like most of us have.

Who ever allowed this also needs to be educated about the false illness theory, so they also understand why people with ME know this is unacceptable.
 
Simbindi said:
Un1ess of course they've been 'groomed'. In other areas, grooming is c1ear1y recognised as abuse of a vu1nerab1e adu1t, young person or chi1d.
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That too, but it reads like a BPS model advertorial, it doesn’t come across natural. They’ve done too much of a good job to paint the full BPS patient picture precisely in line with the theory. That’s why we can all recognise it.
 
Ravn said:
The high achiever trope is a story line supported by many pwME ignorant of ME politics - again, an attempt to appear worthy of support and not lazy - so the NHS writers may well think they're listening to patients
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The perfectionist babble is also spoon feed to patients as part of the BPS model within the NHS fatigue clinics. That’s where I heard it first. “The perfectionist is pre occupied with all the things they can’t currently do (daily living activities) due to stress and deconditioning.” “With an exercise plan and CBT for anxiety they will recover.”

The new guidelines should now be making it clear it’s not the route for the NHS to take. Or am I missing something?
 
I’ve had enough of the NHS ‘mishaps’ when it comes to ME/CFS. First the dubious dealings within the fatigue clinics, then the support of the NICE guideline pause which ended up with substantial changes. Then not acknowledging PEM on their website and now this…….

I’m not confused as to where they stand at all.
 
livinglighter said:
Like everyone else I smell a rat.

No one with ME would be able to frame themselves so perfectly with the BPS false illness belief model or whatever it’s called.

True ME patient accounts talk about crippling fatigue and feeling as though they’ve been trampled on by elephants! I’ve never read a ME patient account that says anything like this and I’ve read many - like most of us have.

Who ever allowed this also needs to be educated about the false illness theory, so they also understand why people with ME know this is unacceptable.
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First and foremost it is about someone who must have engaged in an entirely now banned therapy. Which says a lot about the quality of this place if they think CBT is CBT and can't spot the difference.

Which leads me onto the second issue - what situation was this individual in when they wrote this, would they have felt safe writing anything else due to the power imbalance that is still massive today? Were they sat waiting to be set free or have letters written one way or the other and so on?

Thirdly we should keep a copy of this somewhere on here: it is creepy, almost scary to read, because if it isn't about 'the brief' and edited 'to fit', then it is about 'the therapy' - which isn't a surprise to me, but should be seen as an obvious evidence of what a 'not small thing' these courses are and how a proper investigation is required.

Someone has been made to view their entire life and being - to the point of apparently having a memory of lining up ruler and pens and tins in a cupboard, and apparently remembering some inane report of 'gave 110%' over if you did that much sport what would tend to be achievements like 'getting picked for county' or an award or whatever. Big questions crop up here for me. It smells of false memory syndrome, but is sort of even bigger due to the 'self-blame' and internalised gaslighting, so conversion course territory too?


Has this person been walked into basically taking entire responsibility 'for their own illness and how they are' and sought attributes in themselves to back up this narrative of apparent 'faulty whatever'. There are many people who probably do arrange things alphabetically who are fortunate enough to be fit and healthy all their lives physically and not be subjected to all this, in a therapy 'looking for this' who knows whether this person actually factored on the scale of that at all. Just had a false memory and worse identity of 'being a perfectionist' effectively 'implanted'. Ie someone who did that old therapy 'got told' what their history was anyway. And effectively 'how they were cured'.

This underlines the entirely inappropriate situation where those who engaged in this are still involved. People who have been through this need support from professionals who never believed in or engaged in this gaslighting and techniques in order to be allowed to recover from all of this gaslighting and rewriting of their own history and world. The chance of those holding on by their fingernails to their own belief-system because they built their careers on it (yes at every level it will be people who did the front line) ever acknowledging to the extent of the consequences of their actions and unpicking is impossible.

You have some parts of psychology that do 'normal psychology' in the sense of all those parts of it that understand individual differences in order that they can see people are 'individuals' and have environments that impact on them. Others who just pick the bits for the illness or that fit and 'look for them'. I have become increasingly concerned by the number of psych-related people I've met who cite weak correlations as if they are fact and worse 'therapeutic fact' - like 'oh no it's the parents as it's been shown there is a link with y and z' and you get even in talking therapy someone doing the cliche 'seeking certain things' even if you wanted to mention something entirely different is the issue.

That isn't appropriate for so many damned reasons and is worse than non-therapy in my book, really violating for people to decide before someone enters the door who they are and to feed that back to them. It's also incredibly damaging and given the vulnerable state someone would be putting themselves in via therapy, I suspect even more so if they had ME due to the 'surrounded by rejection and bigotry and gaslighting' and the sheer exhaustion to argue or think around pushy people, for such attitudes to be anywhere near those people.

The idea that these therapies aren't already flagged as areas for potential significant harm is utterly untrue: precedent was massively set with implanting of false memories scandal which did send ricochets through the subject area (they might now have latched onto CBT, but 'this' CBT - it was actually called changing 'false beliefs' based!!). So I find it all pretty astounding noone is watching out for it if unintended etc. But then those who report things have less than no power due to the label removing their self-testimony being believed these days, also due to changes that tend to mean someone not with any internal issues mentally could get labelled when it is the situation that should have been fixed and sorted or is a physical illness. We are still so far off in that area sorting it.
 
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livinglighter said:
The perfectionist babble is also spoon feed to patients as part of the BPS model within the NHS fatigue clinics. That’s where I heard it first. “The perfectionist is pre occupied with all the things they can’t currently do (daily living activities) due to stress and deconditioning.” “With an exercise plan and CBT for anxiety they will recover.”

The new guidelines should now be making it clear it’s not the route for the NHS to take. Or am I missing something?
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It is bigotry. Plain old. And really nasty level stuff too, incorporating misogyny and cliches and disability troping (not ablism, worse than that). The sort of trope someone really unpleasant would do in a close relationship to get someone to blame themselves for harm that happened to them. Not far off the homosexuality is a choice worst type trope stories you heard in the old days. Said with a crushing level of controllingness - 'can't cope with life' in permitted words.

The idea this is not only pushed so it is accepted as OK to be said by society, but actively marketed through workplaces and medical policies is frankly disgusting.
 
bobbler said:
a proper investigation is required.
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A proper investigation is required because ME is classified as a neurological condition. The SNOMED CT location says: structure of the nerves.

bobbler said:
Has this person been walked into basically taking entire responsibility 'for their own illness and how they are' and sought attributes in themselves to back up this narrative of apparent 'faulty whatever'.
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It’s either that or it’s made up.

bobbler said:
There are many people who probably do arrange things alphabetically who are fortunate enough to be fit and healthy all their lives
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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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