UK BACME ME/CFS Guide to Therapy 2025
- Thread starter Nightsong
- Start date
Thank you @PhysiosforME for picking this up and taking action.
It would be wonderful if there could be a clinician led response to this stuff. I think it needs to go wider than just this particular document to look at the whole package of what is being rolled out for ME/CFS and Long Covid that I summarised here on the thread about an NIHR funded project led by Prof Manoj Sivan at Leeds who is leading the Long Covid side of the rehab story and has been funded to find ways to combine LC and ME/CFS rehab style services and apps:
I think it's still worth us trying to create a forum response that we can send to ME/CFS organisations in the UK and beyond, as well as to the bodies responsible for all this mess.
Sadly the MEA seems totally embedded in the whole project now, and is unlikely to support us, but maybe with other ME/CFS organisations disagreeing with them, they will start to see they have taken a seriously wrong turn. We can but try.
It would be wonderful if there could be a clinician led response to this stuff. I think it needs to go wider than just this particular document to look at the whole package of what is being rolled out for ME/CFS and Long Covid that I summarised here on the thread about an NIHR funded project led by Prof Manoj Sivan at Leeds who is leading the Long Covid side of the rehab story and has been funded to find ways to combine LC and ME/CFS rehab style services and apps:
Can we also get the psycholgists organisation people creating an ME/CFS guide that @Joan Crawford is involved in to join with an effort to get a clinician response published in a medical journal?
I think it's still worth us trying to create a forum response that we can send to ME/CFS organisations in the UK and beyond, as well as to the bodies responsible for all this mess.
Sadly the MEA seems totally embedded in the whole project now, and is unlikely to support us, but maybe with other ME/CFS organisations disagreeing with them, they will start to see they have taken a seriously wrong turn. We can but try.
Thanks. The current version is on the BACME website. I don't know whether it's the same one you found.
I have read it and it's all speculative and based on a very limited set of research papers clearly cherry picked to suit their hypothetical model.
What they can't and therefore don't explain anywhere I can see is why they think it's ethical to be giving patients fairy stories about what's causing their symptoms with the pretence it's settled science, while admitting in their documents that it's all just hypothetical, not settled science.
They compound this further by making the great leap without any scientific basis that these 'dysregulations' and 'central sensitisation' they hypothesise can be treated by the long list of behavioural changes they take the pwME through in their 'therapy', including gradual exposure to increased exertion and sensory stimuli to 'desensitise' and lead to improvement.
That is such a leap in the dark, completely unsupported by any clinical trial evidence, yet they run their whole therapeutic program on the basis of this mix of lies and fantasy, all justified because it's not the same as NICE's narrow definition of GET, and is based on a different biological model, and on the basis of 'lived experience', not clinical trials.
It's unethical, dishonest, unevidenced, wasteful of NHS resources, potentially harmful and wrong.
Feel free to make use of anything I have posted on this thread. The more we can get published and distributed to key people on this the better.
Let me know if any of your group want to join the forum efforts to produce some sort of position statement as well, though I know you're all busy and your efforts may be better directed at a clinicians group document.
Yes Please do this
Jonathan Edwards
Senior Member (Voting Rights)
Excellent thought. We already have a multidisciplinary team it seems!
And I agree that a clinician response in addition to a forum response would be a good idea.
Mild people will almost certainly notice the impact of the illness when they shower. Anyone claiming they know me/cfs who doesn’t yet and mention showers to demonstrate it is lying and not an expert it’s so clear a thing. Laypersons who came across one person or distant relative know this one.
That splitting the spectrum so severe isn’t required to always be discussed alongside as a spectrum instead of this pretence we keep having deliberately is a problem (although tbh a problem that allies do a lot too, whilst I know there are reasons I think needs to be stopped as policy for the following)
It is a deliberate ploy to misrepresent what the illness is and how it works. It has no good cure or treatment and anyone can get worse. Particularly given the hostile environment they create
The splitting off the ones they’ve already harmed to severe into a different doc is part of the fairy tale of them delivering something where they don’t care about the consequences on people’s health of what they are selling and imposing on them. But fgs don’t tell them what their future might look like if they do follow their suggestions - ie prevent informed consent
That’s what removing the spectrum for their documents and discussions is. And what psychosomatic is all about - an ideology focused on working out how to evade the informed consent obligation all medicine is required to do but some feel they should be above having that get in their way. Along with safety.
Because given how the illness feels and our intrained myths everyone has of push thru on exercise and work anyway then with the bigotry creating a hostile environment preventing access to anything else for the last decades for us
The one most important thing those who aren’t severe need to know for themselves and for advocacy and to be better allies to those further down the road is that severe and very severe not only exist but that those people aren’t ’exceptional cases different to them who had other whatever’ but that the progression if badly managed
It is the most important thing governments and public need to know - not the nonsense UN-nuanced can be cut and cherry-picked line of ‘if we had a cure they’d all be back to work’ inferring we aren’t all in agony scraping our way thru jobs where we often are not seen with the respect we should due to instead of then realising what we do despite the lies inferring the few slip-ups or adjustments we need are somehow indulgences and our own bad self management. And then we are eventually made so ill by keeping up the impossible we are cast out having had no chance to make preparations as other illnesses might and far far more ill than we ever needed to be.
By us letting them just talk on the mild, until they make them more severe and say ‘they are a different document’ we are perpetuating the ‘manage to destroy as pests, use and abuse non-medical abuse approach’ that this is. Where obsessing over not giving those mild reduced hours to allow them to have a life and career in order to put them thru misery for x years then when they are destroyed by it just en on the heap and refuse wheelchairs and medical care and tell them it’s their mind is what they’ve been doing. Harming people for the sake of not wanting to be disability friendly so destroying them and making them lose independence and everything for the rest of their lives just to extract 4yrs of ‘not giving adjustments’ for the sake of it and destroy their lifetime potential.
And their choice to do that is I’ve realised all purely ideological with no good intentions. ‘Why should they have it a big easy when we can make them hurt themselves’ is that ideology. They aren’t medics and I’d be offended if I worked in that discipline and these people used that term about themselves and these documents because of this truth. Once you start, which it’s now clear they do by choice, deliberately evading measures of safety or checking you aren’t causing harm or deterioration than you are just a danger and exhibiting ‘callous indifference’ to the consequences of what you push.
That’s why they have to fill their documents with lies that are fairy tales to bore readers into getting to the end and they hope people will be too ground down from that to notice any care about safety and it not harming ie the one thing if they were professionals or in medicine it should contain is something entirely evaded. And that it’s just propaganda and not nice propaganda at that.
It is also a way of PRing to those referring us or looking it up online that the illness 'is just mild and recoverable' so ensures those who are more severe don't get adjustments or equipment and the idea 'it must be something else like their mind' ends up being the presumption when they end up in front of a medical professional.
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PhysiosforME
Senior Member (Voting Rights)
I'm happy to join if it would be helpful so please keep me posted
Kitty
Senior Member (Voting Rights)
I've just read the thing again.
The GPs who are presumably supposed to do the "continued monitoring of the patient is important in relation to any new symptoms, which may or may not be part of the illness profile" would just laugh it out of the room, wouldn't they?
IF they bothered to read it, which is very unlikely. You only have to glance at the nonsense at the bottom of the second page to see it would be a complete waste of your time.
Once again, the section that made my blood run cold was "the World Health Organisation considers that access to rehabilitation is a human right."
It takes a twisted mind to use that as a justification for imposing unevidenced, inappropriate 'therapy' approaches on sick people. God alone knows how it got through the Concerning Echoes of Past Atrocities filter.
The GPs who are presumably supposed to do the "continued monitoring of the patient is important in relation to any new symptoms, which may or may not be part of the illness profile" would just laugh it out of the room, wouldn't they?
IF they bothered to read it, which is very unlikely. You only have to glance at the nonsense at the bottom of the second page to see it would be a complete waste of your time.
Once again, the section that made my blood run cold was "the World Health Organisation considers that access to rehabilitation is a human right."
It takes a twisted mind to use that as a justification for imposing unevidenced, inappropriate 'therapy' approaches on sick people. God alone knows how it got through the Concerning Echoes of Past Atrocities filter.
Peter T
Senior Member (Voting Rights)
I wondered about Rhonda Knight, listed as Patient Representative in the contributors.
BACME say this:
She also seems involved in ‘Mindfulness for fatigue’
Interestingly the Mindfulness for Fatigue site’s links/resources are only the Bristol ME/CFS service, BACME, BACME’s ‘An Introduction to Dysregulation in ME/CFS’ and the MEA. Repeating the same associations/grouping we are concerned about.
I don’t know if it would be worth having a separate thread to discuss the use of Mindfulness in ME/CFS or this specfic grouping promoting Mindfulness for Fatigue.
I am not rejecting mindfulness out of hand as part of a coping strategy, having been involved in mindfulness practices since the early 1980s well before it started being packaged and marketed as a health and well being commodity, however I am concerned about its current fetishisation as a panacea for all, and about how its use for ME/CFS without any appropriate trials or analysis of risk factors.
[edit - redrafted final paragraph]
BACME say this:
She also seems involved in ‘Mindfulness for fatigue’
Interestingly the Mindfulness for Fatigue site’s links/resources are only the Bristol ME/CFS service, BACME, BACME’s ‘An Introduction to Dysregulation in ME/CFS’ and the MEA. Repeating the same associations/grouping we are concerned about.
I don’t know if it would be worth having a separate thread to discuss the use of Mindfulness in ME/CFS or this specfic grouping promoting Mindfulness for Fatigue.
I am not rejecting mindfulness out of hand as part of a coping strategy, having been involved in mindfulness practices since the early 1980s well before it started being packaged and marketed as a health and well being commodity, however I am concerned about its current fetishisation as a panacea for all, and about how its use for ME/CFS without any appropriate trials or analysis of risk factors.
[edit - redrafted final paragraph]
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Kitty
Senior Member (Voting Rights)
It seems to be a support group for people who like making up stories, doesn't it. Encouraging and praising one another, and bringing buns to celebrate when someone takes a step forward.
I see what you mean about discussing mindfulness for fatigue, but I wonder if we might already be able to write the thread summary: Show us the evidence or you're wasting our time.
Utsikt
Senior Member (Voting Rights)
Thanks, I'll add you to the list. I'm hoping to start the private discussion in a day or two with a rough draft.
I agree. Taking that to its logical conclusion, everyone visiting a doctor should be provided with a course of rehab. The instruction is clearly meant to be 'for those who want it and for whom it is appropriate and has been shown to add value'.
That line isn't in there by accident or just for fluff
It is intended to be non sequitur to those who are commissioners and decision-makers currently having to rush around to put in place rehab in such a way to mislead them into thinking this solves a box they need to tick whilst there is a rush to have to suddenly implement all sorts of new initiatives with the 10yr plan I suspect and are even busier than usual. It feels like a 'trust me this will do the job on that ..' between the lines thing.
non sequitur in that it is pretending and inferring to those people that this is 'rehab for pwme' (which it isn't because sadly for us, this ideology has been debunked, and has evidence of harm - rebrand or not) and that 'rehab without treatment' works for ME/CFS rather than causing more harm to the original issue (which I suspect is the case with most serious illnesses if they were instead untreated then forced thru rehab and extra exertion).
I think they have a cheek calling it therapy in the context of ME/CFS given their mis-use of the term evidence has been outed by Nice analysis ie they have none and have done harm. Because therapy has to 'do good and not harm'. eg brainwashing programmes in the 60s for interrogations or whatnot don't call themselves 'therapy' just because it uses the same techniques. ANd therefore tbh have a cheek calling themselves 'therapists' for ME/CFS at all if this is confirmation of what they offer, therefore.
I think it is a good move taking out the dog-whistle guff from the manifesto sales prospectus to reveal this is an organisation that merely intended to conceal enforcing the same harmful stuff and asking others to fund it based on false promises of it not harming.
And underlining that they confirm their full intention to ensure it is again not monitored for safety like yellow card would and are gerrymandering the basic outcomes needed if they were interested in whether they deteriorated people's health rather than their made-up claims that it could even be anticipated to help these days.
These people know they have foreseeability, barring pretending to play dumb that their entire battery of therapist-delivered research was assessed and concluded to be low and very low quality - which means fundamental errors making it worse than unusuable, but propaganda because of bias.
They seem to think guff and burying said facts removes their obligations of hindishgt/foreseeability that they will harm that what they are suggesting is doing harm by being a propagandic document with inaccuracies that are slurs and could lead to harm in itself even if it wasn't implemented.
And it is probably all about that BS of plausible deniability by making it so poorly written that those who are being sold to can claim they were mis-sold whilst those who sold it what pretend they didn't understand anything or thought it was OK if someone else bought it - so somehow they are trying to make it hard as to who to hold culpable as if pretending to be incompetent is an excuse?
And when you think like that, the line confirming they intend to use very unusual measuring statistics vs any other normal medical ward for serious biomedical conditions - like 5yr and 10yr outcomes measured independently and using proper biomedical consultants expert in the condition, for a condition where because harm has been done for decades previously so they need to get it right and this exact problem is part of the cause of that having happened ... well I think it shows more than an issue of not wanting to learn the lesson that was flagged to them, but more one of seeing that lesson being heard as to make the measuring even more inappropriate leading to undermining those harmed being able to prove it?
You'd think real therapists who had actually heard and had a come to Jesus moment would have started this document off with a proper lessons learned which began with how they are going to be implementing yellow card system that is independent, and have begun their 'new leaf' with a genuine wish to hear about how harm might have been caused and not 'heard at the time' in the past.
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Kitty
Senior Member (Voting Rights)
I started writing notes on things I wanted to question, and the title of the document was the first one. What therapy?
(I gave up on page 3, by the way, as it was clearly going to take a month to note down everything I wanted to question.)
Kitty
Senior Member (Voting Rights)
No, it needs organising into categories, but that's a skill I lost to ME/CFS. I can't hold onto a train of thought; I've only got bandwidth for one vaguely defined item, so basically a third class carriage of thought.
It is starting to remind me of the 90s being limited on telly and having to watch programmes where each week it would be about a company that had closed itself down and then 're-appeared doing the same thing under a different name in a different part of the country'. except with a slightly different formula here.
the whole selling 'rehab without treament' has just made me think of another thing: first they harmed us with the same therapy under the claim 'rehab is treatment for cfs' and now they are trying to distract people from the important bit - that this 'therapy' harms and isn't the correct management of the condition - with the jangly keys of claiming it is OK because 'they don't claim it is treatment anymore, just rehab'. And of course during the new guideline was coming in and they were unable to block it these bps then claimed 'it was only ever rehab' with an immediate history rewrite: https://link.springer.com/article/10.1007/s11606-021-07188-4
20yrs ago rehabbing seriously ill people without making them more well or having a treatment first would have been thought inhumane until their debunked PACE trial claimed it was treatment and 'would work' based on calling us mad with false beliefs and deconditioning 'that had to be cured'. And it turns out they were right.
now we have an 'its called rehab so it must make people better not harm them and make them worse' fallacy being dog-whistled
but they've tried to make up a new fake cause of 'dysregulation' that they can't even make their story make sense on in order to claim they are 'addressing something' and yet - and this is rather pertinent given the history of the area basically being pulled up by the Nice analysis for not even making sure they were studying the right population in past research that they won't withdraw - they don't even believe that they need to demonstrate that what they claim their 'therapy' would actually address (merely by guff, no evidence anyway) has no test and isn't even exampled or evidenced to be the same condition.
is it rehab (contra-indicated for me/cfs) or 'unevidenced dysregulation therapy' for something that they haven't demonstrated anyone has? or just the same men and women wanting to get paid for delivering 'sessions' getting ill people to 'do more of this at the sacrifice of your other needs, even if it makes you more ill, with added motivation and gaslighting' underneath all of these different things.
the whole selling 'rehab without treament' has just made me think of another thing: first they harmed us with the same therapy under the claim 'rehab is treatment for cfs' and now they are trying to distract people from the important bit - that this 'therapy' harms and isn't the correct management of the condition - with the jangly keys of claiming it is OK because 'they don't claim it is treatment anymore, just rehab'. And of course during the new guideline was coming in and they were unable to block it these bps then claimed 'it was only ever rehab' with an immediate history rewrite: https://link.springer.com/article/10.1007/s11606-021-07188-4
20yrs ago rehabbing seriously ill people without making them more well or having a treatment first would have been thought inhumane until their debunked PACE trial claimed it was treatment and 'would work' based on calling us mad with false beliefs and deconditioning 'that had to be cured'. And it turns out they were right.
now we have an 'its called rehab so it must make people better not harm them and make them worse' fallacy being dog-whistled
but they've tried to make up a new fake cause of 'dysregulation' that they can't even make their story make sense on in order to claim they are 'addressing something' and yet - and this is rather pertinent given the history of the area basically being pulled up by the Nice analysis for not even making sure they were studying the right population in past research that they won't withdraw - they don't even believe that they need to demonstrate that what they claim their 'therapy' would actually address (merely by guff, no evidence anyway) has no test and isn't even exampled or evidenced to be the same condition.
is it rehab (contra-indicated for me/cfs) or 'unevidenced dysregulation therapy' for something that they haven't demonstrated anyone has? or just the same men and women wanting to get paid for delivering 'sessions' getting ill people to 'do more of this at the sacrifice of your other needs, even if it makes you more ill, with added motivation and gaslighting' underneath all of these different things.