UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

bobbler said:
ForwardME need to begin a register and put it somewhere very public
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FowardME is a discussion forum for various ME groups, as opposed to any kind of coalition with staff to take any action.

While we would all assume that they are best placed to take this on, they are not actually an action group.

What might be helpful would be to get Not Recovered (the billboards group), The Chronic Collaboration (who created the twitterstorm about severe patients) , Foggy Dog, ME Local Network (network of local friendship and support groups) and Long Covid Support all together (all run by patient volunteers) and then have their resolutions backed and amplified by the charities and potentially talking to George Monbiot.

Unfortunately the charities don't seem keen to engage with some of the work done by these groups (Sally Callow / Foggy Dog's yellow card work for example and various petitons raised)

@bobbler is absolutely right we need to have a list of strong questions and speak up about the psychwashing of ME and make this very public.

However, I know there is a lot of work going on in various places to try and make changes through existing channels so it is balance between making some noise and not alienating those already working with us.

I don't think we are going to overthrow any empires, as the structures in place have had 40 years to get themselves into place and into some very prominent positions and we have thst pesky militant activists tag to contend with, but I very much agree with the ideas.

The execution needs careful thought.
 
bobbler said:
But I've found the following paper (not sure if it is the one I actually read at the time or another one they laid on top, which I suspect it is as this one has White and Chalder too): Evidence-Based Care for People with Chronic Fatigue Syndrome and Myalgic Encephalomyelitis | Journal of General Internal Medicine (springer.com)

It was released on 7th November 2021 and was basically a rebrand of CBT+GET as rehab and clearly selling it as safe. Just after the new guidelines.
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Look at this from that paper:

"However, it seems likely that any harm reported from patient community surveys reflects poorly implemented therapy, as well as possible misdiagnosis of CFS/ME.31,

reference 31 is this paper Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME: Disability and Rehabilitation: Vol 36 , No 5 - Get Access (tandfonline.com) Gladwell, Pheby Rodriguez and Poland Pages 387-394 | Received 21 May 2012, Accepted 16 Apr 2013, Published online: 04 Jun 2013 [paywalled so I can only see the abstract]

It used an online Action for ME survey in 2008 (76 patients) to look at two things, the second was this:

"Second, to review patient experiences of two related rehabilitation approaches, Exercise on Prescription (EoP) and Graded Activity Therapy (GAT)"

Note: my bold and paragraph spacing for ease of reading.

"Method: An online survey conducted by the charity Action for ME generated qualitative data about 76 patient experiences of rehabilitation undertaken during or after 2008, examined using thematic analysis.

Results: Both positive and negative experiences of rehabilitation were reported.

Positive themes included supportive communication, the benefits of a routine linked with baseline setting and pacing, the value of goal setting, and increasing confidence associated with exercise.

Negative themes included poor communication, feeling pushed to exercise beyond a sustainable level, having no setback plan, and patients feeling blamed for rehabilitation not working.

Conclusions: The negative themes may help explain the negative outcomes from rehabilitation reported by previous patient surveys. The negative themes indicate rehabilitation processes which contradict the NICE (National Institute for Health and Clinical Excellence) Guideline [2007 version] advice regarding GET, indicating that some clinical encounters were not implementing these. These findings suggest areas for improving therapist training, and for developing quality criteria for rehabilitation in CFS/ME."


  • "Implications for Rehabilitation
  • The insensitive delivery of rehabilitation support for people with CFS/ME can explain negative outcomes reported in patient surveys.

  • Therapist–patient collaboration, establishing a sustainable baseline and agreeing a setback plan are all examples of higher quality rehabilitation indicated by this research.

  • Greater awareness of the positive and negative experiences of rehabilitation therapies should enable avoidance of the potential pitfalls identified in this research. Positive experiences of rehabilitation therapies include supportive communication with a therapist, treatment which included routines and goals, and value attached to baselines and controlled pacing. By contrast, factors leading to negative experiences include poor communication and support, conflict in beliefs about CFS/ME and rehabilitation, [my bold] pressure to comply with treatment, worsening of symptoms, baselines experienced as unsustainable, and feeling blamed for rehabilitation not working."

This is circular research sustaining an unevidenced model of intervention which it has been shown to cause harm. As you point out was published a month after the revised NICE Guideline NG206 was published in 2021.

Clinicians are neither using best available evidence, nor are they using evidenced based guidelines if they are following advice given in the 2021 paper. They're simply doing whatever the hell they like.

Why don't they do an online survey of Bath patients and compare those who were still managing to do some work at the time of treatment and those who were not?

Bath adult service overseen by Crawley, White, Sharpe and Chalder were involved in the creation of the NHS Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline (nhshealthatwork.co.uk) Oct 2006.

Both papers surely can't be suggesting that Crawley and her Bath team needed improved therapist training on what was at the time called CFS/ME Management!

This is what is called forensic examination of the evidence. In the world of psychogenic attribution it is called [insert relevant descriptors from any research papers indicating conclusive proof of the conflict in beliefs about CFS/ME and rehabilitation]. This inter-changeability of terms is overt. just like "CFS and its syndromes" in the 2021 paper referred to above.

ETA: None of these reported 'negative' experiences were informed to me when I gave consent in Bath at the end of 2011 and was subsequently and permanently harmed.
 
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JellyBabyKid said:
FowardME is a discussion forum for various ME groups, as opposed to any kind of coalition with staff to take any action.

While we would all assume that they are best placed to take this on, they are not actually an action group.

What might be helpful would be to get Not Recovered (the billboards group), The Chronic Collaboration (who created the twitterstorm about severe patients) , Foggy Dog, ME Local Network (network of local friendship and support groups) and Long Covid Support all together (all run by patient volunteers) and then have their resolutions backed and amplified by the charities and potentially talking to George Monbiot.

Unfortunately the charities don't seem keen to engage with some of the work done by these groups (Sally Callow / Foggy Dog's yellow card work for example and various petitons raised)

@bobbler is absolutely right we need to have a list of strong questions and speak up about the psychwashing of ME and make this very public.

However, I know there is a lot of work going on in various places to try and make changes through existing channels so it is balance between making some noise and not alienating those already working with us.

I don't think we are going to overthrow any empires, as the structures in place have had 40 years to get themselves into place and into some very prominent positions and we have thst pesky militant activists tag to contend with, but I very much agree with the ideas.

The execution needs careful thought.
Click to expand...

indeed but as a coalition would they be well-placed for surveillance/getting the info from the different throughputs and then potentially the question of where the register is located and making it public etc would need to be someone within that or if you can think of another that isn't part of ForwardME?

I just think that keeping an eye to see if numbers are suddenyl increasing of this happenning to pwme is important and making it public so that register publicly ticks up is important as an issue. As well as that detail of who and how so that it can indeed be traced back to its cause/locus.
 
Maat said:
Look at this from that paper:

"However, it seems likely that any harm reported from patient community surveys reflects poorly implemented therapy, as well as possible misdiagnosis of CFS/ME.31,

reference 31 is this paper Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME: Disability and Rehabilitation: Vol 36 , No 5 - Get Access (tandfonline.com) Gladwell, Pheby Rodriguez and Poland Pages 387-394 | Received 21 May 2012, Accepted 16 Apr 2013, Published online: 04 Jun 2013 [paywalled so I can only see the abstract]

It used an online Action for ME survey in 2008 (76 patients) to look at two things, the second was this:

"Second, to review patient experiences of two related rehabilitation approaches, Exercise on Prescription (EoP) and Graded Activity Therapy (GAT)"

Note: my bold and paragraph spacing for ease of reading.

"Method: An online survey conducted by the charity Action for ME generated qualitative data about 76 patient experiences of rehabilitation undertaken during or after 2008, examined using thematic analysis.

Results: Both positive and negative experiences of rehabilitation were reported.

Positive themes included supportive communication, the benefits of a routine linked with baseline setting and pacing, the value of goal setting, and increasing confidence associated with exercise.

Negative themes included poor communication, feeling pushed to exercise beyond a sustainable level, having no setback plan, and patients feeling blamed for rehabilitation not working.

Conclusions: The negative themes may help explain the negative outcomes from rehabilitation reported by previous patient surveys. The negative themes indicate rehabilitation processes which contradict the NICE (National Institute for Health and Clinical Excellence) Guideline [2007 version] advice regarding GET, indicating that some clinical encounters were not implementing these. These findings suggest areas for improving therapist training, and for developing quality criteria for rehabilitation in CFS/ME."


  • "Implications for Rehabilitation
  • The insensitive delivery of rehabilitation support for people with CFS/ME can explain negative outcomes reported in patient surveys.

  • Therapist–patient collaboration, establishing a sustainable baseline and agreeing a setback plan are all examples of higher quality rehabilitation indicated by this research.

  • Greater awareness of the positive and negative experiences of rehabilitation therapies should enable avoidance of the potential pitfalls identified in this research. Positive experiences of rehabilitation therapies include supportive communication with a therapist, treatment which included routines and goals, and value attached to baselines and controlled pacing. By contrast, factors leading to negative experiences include poor communication and support, conflict in beliefs about CFS/ME and rehabilitation, [my bold] pressure to comply with treatment, worsening of symptoms, baselines experienced as unsustainable, and feeling blamed for rehabilitation not working."

This is circular research sustaining an unevidenced model of intervention which it has been shown to cause harm. As you point out was published a month after the revised NICE Guideline NG206 was published in 2021.

Clinicians are neither using best available evidence, nor are they using evidenced based guidelines if they are following advice given in the 2021 paper. They're simply doing whatever the hell they like.

Why don't they do an online survey of Bath patients and compare those who were still managing to do some work at the time of treatment and those who were not?

Bath adult service overseen by Crawley, White, Sharpe and Chalder were involved in the creation of the NHS Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline (nhshealthatwork.co.uk) Oct 2006.

Both papers surely can't be suggesting that Crawley and her Bath team needed improved therapist training on what was at the time called CFS/ME Management!

This is what is called forensic examination of the evidence. In the world of psychogenic attribution it is called [insert relevant descriptors from any research papers indicating conclusive proof of the conflict in beliefs about CFS/ME and rehabilitation]. This inter-changeability of terms is overt. just like "CFS and its syndromes" in the 2021 paper referred to above.

ETA: None of these reported 'negative' experiences were informed to me when I gave consent in Bath at the end of 2011 and was subsequently and permanently harmed.
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so when the treatment makes people more disabled long-term this sets it up that if any of the measures are capable of showing this then the rehabber would get fired because they will claim it 'must be the delivery, can't be the treatment' even though the research confirms it is the treatment.

To me, given one of the inventors of the PROM is a rehabber it makes it clear they are keen to only measure the failure part of the coercive aspect of communication to get people to say at the time maybe they do feel a bit less tired I don't know, and not whether the treatment is harmful or helpful and leaving them more disabled within the year than they ever ever needed to have become.

talk about disregard for the safety and potential for harm of what you are doing. in full knowledge and foreseeability.

this isn't 'but maybe you could have caught covid anywhere, even if you do claim that you only ever came into contact with another human being at work', it is again people walking into a clinic and coming out in wheelchairs and callous indifference as a choice from those who chose to push a treatment fully aware of its potential to harm. With no surveillance or yellow-card. And this time I'd say those listed in this have full intention in what they are doing/pushing others to do to patients as being 'despite' risk to patients. I would hope that personal liability is applicable for these reasons.

It to me seems like someone making brakes that were found to be great idea for the first ten miles and then a certain, important % totally fail and a scientific report confirming that and the harm done then those who profited from it deciding that it 'must have been the fitting/delivery' and not even changing mechanics or garages just rebranding them and monitoring delivery for those first 10miles. again. focusing measures on advising people not to drive too much for the first weeks and asking them how satisfied they are with their service. then thinking when it crashes they can try and blame the drivers, who at that point had been forced to use that brake brand, again? or the fitters? again? and trying to claim there was no need for them to measure harm or have a reporting system. again.
 
bobbler said:
indeed but as a coalition would they be well-placed for surveillance/getting the info from the different throughputs and then potentially the question of where the register is located and making it public etc would need to be someone within that or if you can think of another that isn't part of ForwardME?

I just think that keeping an eye to see if numbers are suddenyl increasing of this happenning to pwme is important and making it public so that register publicly ticks up is important as an issue. As well as that detail of who and how so that it can indeed be traced back to its cause/locus.
Click to expand...

Oh. I see! Apologies, totally misunderstood the question(s).

If i have understood correctly, we want to find out:

• is there any kind of centrally held list of pwSevereME who have been/are currently in hospital?
• Is anyone keeping a note of number of pwme being diagnosed with FND? how do we (as community) monitor this shift?
• how do we monitor clinics switching from ME to general "fatigue" clinics?

These are good points. I have asked some questions outside of this forum as a starting point.
 
A more serious version of my earlier post to join the dots I currently see:
  • Culture of disbelief (Govt & healthcare): only see through the lens of their own experience
  • Not counting Long Covid and dismissing it as anxiety
  • Dismissing rise of anxiety & depression as the "normal stresses of life" and "over medicalising"
  • Renaming ME as FND: stops further investigations & and bypasses the NICE guidelines
  • Using research that is pre-NICE to justify changing method of assessing patients/clinics and also presented as a treatment "toolkit" (PROMS)
  • Renaming ME clinics as general "Fatigue" clinics; ignores PEM & bypasses the NICE guidelines
  • Presenting rehab as treatment and discharge from clinics as treated
  • No consultant or reviews so lack of evidence
  • Ignoring diagnoses of SevereME in hospital and bypasses the NICE guidelines allowing DOL/sectioning
  • Changes to the benefits system: "everyone capable of some work" & removal of substantial risk
  • Refusal at all levels to listen to patient experience or any criticism, even where justified
There is a systemic erosion of equality, justice and consideration and the wilful deafness of privilege and power

I would be interested in putting evidence against all of these points. Some we already have e.g PROMS and my correspondence with ministers around the DWP & the rise of the culture of disbelief, but if anyone else can help with the rest, this might be useful to pull together, along with figuring out measures around FND numbers and SevereME in hospital.

This post has been copied to a new thread:
UK: Collecting evidence on problematic UK approaches to ME/CFS and Long Covid
 
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bobbler said:
And to quote Michael Sharpe himself straigh after the new guideline was released he said that PACE and the treatment they oversaw in the clinics 'was only ever rehab'
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And there was also Wessely's comment that 'we're in the business of rehabilitation' in a BMJ podcast back in 2010:
“We’re not going to go on doing more and more tests to find what was the virus, because frankly even if we found it there’s nothing we’re going to do about it, we’re in the business of rehabilitation.”
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He says it just after 11:15 of the podcast: (ETA: I can't seem to stop the link from autoembedding - in case anyone can't see it, it's on Soundcloud, on the BMJ Talk Medicine channel, title Chronic Fatigue Syndrome)

 
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JellyBabyKid said:
Not helped by the charities not seeing this stuff and believing that their ongoing diplomatic approach is working.

I think we need to point at the emperor and very loudly say that he has no clothes on.

The BPS/rehab folks have had 40 years+ to prove their idealogy and it just isn't working so they need to just admit it and let someone else have go.
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I think that, in the UK anyway, the charities have been successfully bullied into being non-confrontational that they don't dare do anything anymore. The campaigns of demonization in the press and academic literature did not just target the patients, they very explicitly named and blamed the charities for doing nefarious... something, and causing much of the trouble. I'm sure that behind the scenes there were very explicit threats to their existence. Elsewhere, aside from MEAction, charities are almost non-existent, or too small to be heard.

But as for the BPS ideologues and their decades of failure, unfortunately they are currently at the peak of their success. Despite producing nothing but failure, in a time where their failure is so prominent it can literally be seen negatively affecting national GDPs. It can only be interpreted that the failure was actually always the goal. And it seems that what Long Covid did more than anything is give more fuel to the ideology, prodding governments and insurance companies to go even further in reattributing chronic illness as mental illness, where outcomes are irrelevant and science is nowhere to be seen. There they can boast of cost-effectiveness while dividing by zero, and this fits perfectly in the dominant neoliberal ideology.

Beyond the recent attacks on disability as a scourge that must be met by forcing people to work, we have the other side of this coin, the ideologues doing better than ever:
Michael Sharpe said:
We live in the greatest of times . . . Mental Health is the rage. This is boom time! We have a product that is selling like hotcakes everywhere. How are we going to make enough product?
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Quote from: https://www.s4me.info/threads/hole-ousia-its-boom-time-michael-sharpe.8701/.
 
JellyBabyKid said:
Oh. I see! Apologies, totally misunderstood the question(s).

If i have understood correctly, we want to find out:

• is there any kind of centrally held list of pwSevereME who have been/are currently in hospital?
• Is anyone keeping a note of number of pwme being diagnosed with FND? how do we (as community) monitor this shift?
• how do we monitor clinics switching from ME to general "fatigue" clinics?

These are good points. I have asked some questions outside of this forum as a starting point.
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No worries no my point is that we need to be logging numbers of pwme who are having DOLs or sections or deprivation of liberty placed on them. We need to be keeping an eye on whether this is suddenly something that is being done a lot more than it used to

and we need to be doing so with a log of who the ‘doer’ ie source of that is.

if these are being used more but the numbers turn out to be from a small number of clinicians each behind a lot or an edict is related to that we need to know
 
JellyBabyKid said:
I have said it before, but we need to keep asking; how do we change this?
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"UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023"
That is a well-established patient charity using funds it has gathered, presumably primarily from people with ME/CFS and their families, to support research that is quite likely going to prop up harmful (well-washing) approaches to ME/CFS care. It is using those funds to support researchers with track records in FND and psychosomatic medicine.

Frankly, if we can't stop this sort of thing from happening, then we've got very little chance of achieving wider advocacy objectives. We need to hold our patient charities to account; we need to improve the quality and performance of trustees and the staff, making sure that they are well informed and acting in our interests. We need to give our funds and our membership to charities that make good decisions (or that at least respond in a reasonable way* when stuff-ups are made).

Better charities will produce better informed ME/CFS communities. And better informed ME/CFS communities have political power.

*'A reasonable way' does not involve blaming people who bring the bad decisions to their attention. It involves acknowledging the problem and doing something to fix it.
 
bobbler said:
they've just had rehab genericise the whole thing 'for all'

and 'all' being chronic illnesses for which 'there is no illness that doesn't benefit from exercise' is the ideology for. Forgetting to mention that idea came from dodgy research into CFS in the first place.
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I have long thought that ME/CFS was their doorway to applying GET/CBT type 'rehab' across the board. And so it has proved to be.

It is one of the reasons (maybe even the main reason) that they have pushed the 'transdiagnostic' and FND type stuff so hard. They want to apply it to [checks notes] everybody who walks into a clinic.

A lucrative employment scheme for the providers. Maybe not so useful for their captive audience.
bobbler said:
It seems we are still in the phase of denial and bargaining from those with their false beliefs not wanting to seek their own 'therapy'/ re-education.
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And are likely to be for some time yet, I suspect. They are showing no signs of backing down, beyond superficial tweaking of marketing.
 
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Rehabilitation, including CBT and GET, for CFS/ME assumes that disability and symptoms, once established, are at least in part maintained by factors that are reversible.

"assumes"

Don't they think that they should actually, you know, establish if their assumptions hold up to scrutiny? I mean that is the whole damn point of scientific assessment, to test the assumptions underlying an hypothesis.

Jonathan Edwards said:
I am afraid that PROMS are largely designed to assess how well people-washed people are.
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This. Lack of robust control for subjective measures is never going to end well, and sometimes is not intended to.

Keela Too said:
Psychwashing however is much more catchy, and delivers the clear implication that everything is now being washed in their psych approach.

Frankly it’s not just ME but the whole medical profession that is being psychwashed. :(
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Psychwashed is a good term. Clear and punchy.
 
Andy said:
Previously posted: Social media posts linking to the two letters sent by the committee.


Facebook: https://www.facebook.com/sci4me/pos...Yk3YHh1cjgsNUByaos5WvvCfDFmXHszGDnU3hnX6GkFXl
Mastodon: https://med-mastodon.com/@s4me/112252304846115728
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Thanks Andy
Can we use social media as a drip feed with different aspects ? Might get more interaction
Some will not click into this but might forward/ promote short sentences .but that's work for someone .


Do Monbiot and The Canary know the gist of this stuff ?
I
 
Amw66 said:
I've lost the gist on this thread a wee bit.
Have we had any further feedback from MEA
If not
Are we attempting any further engagement with them
If not
How do we put these very valid points into public arena ?
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The letters and MEA reply are on this thread:
https://www.s4me.info/threads/open-...ct-developing-proms-led-by-sarah-tyson.37937/

I'm considering a response to the unsatisfactory reply. I think we need to look at the wider context, not just the problems with the PROMs themselves, but the way they are intended to be used which seems to be to maintain the status quo in clinics with just a few tweaks.

A new thread has been started to share ideas of where the problem lies, collect evidence, and discuss what to do next.
UK: Collecting evidence on problematic UK approaches to ME/CFS and Long Covid
 
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