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

I think the idea for a Jigsaw of insidious double-speak treatment is a good idea.

 

On the note of clinical assessment, I've just looked up @Caroline Struthers brilliant article for a thread elsewhere ( It is not only drugs and devices that can harm - HealthSense (healthsense-uk.org) )


And the following paper was referenced, which has its own thread and I think is worth linking to from this thread due to its pertinence to this topic:
Monitoring treatment harm in [ME/CFS]: A freedom-of-information study of National Health Service specialist, 2019, McPhee et al | Science for ME (s4me.info)


Particularly if we are thinking about the aims of any 'PROMS' needing to work as red flags both for individuals in adjusting care when their health degrades but also in surveillance

I haven't seen the bit on these PROMS - despite it saying it will be looking at how well clinics do - that covers how these will be checking for safety?

and given the after-effects of 'treatment' or 'mistreatment' or 'mismanagement' or just overdoing it because someone is in a situation that wasn't helped to be managed from over-exertion etc hit later eg 6months, 12months and then can be lasting for years

How these are actually going to be being used to make sure that - as per the clear message when the analysis of research for this area was done for the Nice guidelines noted was a major methodological issue: not looking at long term - these patterns are going to be being prioritised

Is 'PROMS' going to be making sure that someone is realising that someone being pushed to do more for 6months is being looked at 12months after that ends to see if it has made them more disabled for example?


Because if there is a similar allergy to measuring harms from this 'industry' we have an issue here?

EDIT: surely, whether it is done by clinics or not - and I think it should be surveillance done from beyond clinics due to independence / conflict issues but also because of appropriateness of sample issues in who those clinics do or don't serve - SOMEONE needs to be doing surveillance of HARMS and long-term outcomes of pwme, including where they are given 'support' or 'treatments' so we do have prognosis data and this 'recovery' stuff isn't possible to be manufactured by claiming 'trajectory' based on small short-term coerced responses (from very carefully selected and niched patient samples who are new and mild and perhaps don't even have PEM), instead of long-term monitoring.

 

I was also starting to think that there are a number of strands that seem to be knitting together, so I am grateful for someone else saying it out loud. I appreciate knowing it is not just me that is seeing a rather alarming picture starting to come into focus.

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.

Likewise the charities need to understand that if they keep going at their tortoise like speed of politely persuading people to stop permanently harming us pwme they are allegedly treating, the sun will have reached it's heat death before anything changes.

I have said it before, but we need to keep asking; how do we change this?

 

I'm probably going to blow things now and ask whether you are on the wavelength enough that you would know what I mean when I say I'm tip-of-tongue reaching for a term that is something like 'greenwashing' going on

and yes some getting used as useful idiots as part of this process.

Partly because they are only being shown part of the picture (or a different picture) when being sold / brought on board etc.


Discussions about a term like 'greenwashing' have been moved to a new thread:
What's a term like 'green-washing' for the rehabilitation approach to ME/CFS and similar diseases?

 

Personally, I think one straightforward starting point is to put this picture together. To show what the 'reaction' has been to the new Nice guidelines ie what seems to be 'being built' vs what we were given the impression was required and would be instituted. ie make the 'context' that is becoming apparent as clear as it can be - so we know we are all looking at the same landscape / big picture that is shaping up.

And in terms that are not vulnerable to the thesaurus and 'it's a different dept' hidey nonsense being played. Like the edict from the RCPs saying 'we acknowledge it is probably best to change the name/terminology 'GET', but those 'treatments' mustn't be discontinued' to commissioners. I hope that there is some liability involved with them suggesting that its safe and effective the day it was confirmed it wasn't to those who were commissioning services. Whichever dept and name they wish to switch them under.

And I think that someone who can needs to write a list of very direct questions, that can only be answered directly, to be asked publicly to eg charities. SO that those who donate for example can see the responses. And reply on them. And there is no longer equivocation on certain topics.


Thinking about PROM specifically then the issue that strikes me is that as soon as the new guideline came out I knew that BPS wanted to attack 'PEM' as a concept. I think we need to define that very clearly indeed and ask them to confirm they agree that it is the cardinal feature and if measures are taking place and diagnoses being made/numbers and prognoses collected this needs to be correct. ie there is no lingering agreement with the BPS that 'there might be a load of people with 'CFS' who are going to be 'abandoned' if these GET treatments and fatigue clinics discontinue'.

And the pattern/trends needing to be measuring the 'long-term impact' so if any measures are being signed off they are not done so without a protocol of who is being measured, who is doing the measuring and how they will be used and how they should not. 'pacing up' for example would hit 12months later, so I'd probably be looking for an understanding that they 'get' the condition is one of potential longer-term deterioration and not 'fatigue'.

And so on.

tbf I can only ramble my way to any description so it might require team work to translate it into a 'brief'

I think at this point it might be best to focus on the things they can change and not satisfy the BPS by all out disunity, because the point is to gain unity and agreement again not the other way around - by getting everyone to pull back to remembering the page we need to be on? and ticking anything being signed off against a 'does it achieve this, or does it undermine it' question?


So I'm hoping these questions, and this suggestion, come across as 'constructive' as they are intended to be?
And yes maybe we need to ask the direct question


EDITED to add: I think when asking "and ticking anything being signed off against a 'does it achieve this, or does it undermine it' question?" then it is fine for us to acknowledge that they are not psychic, but they are expected to promptly 'get with' the updated picture as it shows.

So these questions might need to be repeated regularly even for the same things in the same processes due to how ingenuine/how unforthcoming information has been resulting in a changing context or big picture being just as capable of changing the answer to that question vs it necessarily meaning something on said project has actually changed?

 

and this is a sidenote to this thread so I paused. But another urgent to start one (even though it might not change things for those experiencing it right now, although it might) is:

ForwardME need to begin a register and put it somewhere very public of the number of pwme who are attempted to, and succeeded in being deprived of their liberty through one form or another. Whether section, DOLs or anything else

We need to be seeing if there starts being a huge uptick. And who it is coming from. Making these things about the 'doer' and not the victim/done to. To find out more.

This should be logged for who does it, and the trust, occupation/specialism of the person doing it, person doing it, their boss (ie who is behind it) as well as what dept meant they entered said hospital. eg if it is a liaison psychiatrist 'hawking' wards and picking up those who entered for eg a gastro appointment.

One thing I have noticed from looking through certain articles is that it is made to look often like eg there are loads of references on a topic ergo there must be lots of people in agreement, but it actually comes down to the same groups of individuals in different groups, societies and on different papers. That is an important myth to bust if it is just a few individuals behind a lot making it look to others like it should be their 'norm' or the old 'everybody is doing it'.

Or maybe there are certain 'edicts' being enacted by certain colleges or professions/it is an issue in a certain specialism or area. WHich aids in education.

 

I think I said elsewhere, ME (and suspected ME/“meets the criteria for, etc) needs to supersede everything else. Because there’s a lot of double-speak, and in UK hospital now, Millie McAnish isn’t treated in line with NICE guidelines because the ME diagnosis was from “another doctor” and she’s been sectioned I think.
If I was sectioned but having chemo, I’d expect to still get chemo.
If I get sectioned and I have ME, I don’t get treated as if I have ME?

 

I note the PEM / PESE one and this is pertinent because when they are trying to con another dept to take this on - despite there now being a whole different ball game with regards foreseeability - I think that this (PEM) and long-term deterioration are where the 'liability' lies for someone taking this on.

If you aren't asking, aren't checking if those coming into your now 'fatigue' clinic even have PEM ... then are you liable that your treatment is associated with long-term deterioration in those you are giving it to might be what some are thinking.

Degrading this concept into 'symptoms' to move it away from a specific condition for which it is known 'symptom exacerbation' is more than 'hurt not harm' and to do with long term outcome feels like potentially muddying and deconstructing this liability?

 

I’m thinking more social media campaigning, going viral with a slogan, then releasing a press release

what is “psychwashing”? The disturbing medical trend which disproportionately affects women and people of colour. Not only denying treatment, but actively causing harm.

I’m not a scientist though, I’m more of a humanities background.

 

I suspect that date has been a distracter and waiting for it might mean other things have cemented in

It's absolutely reasonable that we should be asking questions as soon as there are obvious problems foreseeable to check that these are indeed being dealt with before they become such

 

post copied to the thread on a greenwashing-inspired term

I think we need to be confirming our 'ask' and clarifying the picture so they don't just get to make it look like 'noise'. I think we need to be careful not to be kneejerk in just doing things. We don't go on social media just because we've got a slogan, but we get the picture showing what is happening and then describe it accurately as an issue with a slogan appropriate to that. And use it to draw light on looking at what they've done not on our being unhappy but them being able to muddy why (and us not all having the same simple, consistent answer to it).

I think what they've done here is recycled the issue through 'rehab' by using research done for 'CFS' to claim it works for the generic long term conditions

and then when the ME/CFS guidelines flagged that research was nonsense and PEM etc made them liable if they shoved people into psychologically injurous psycho-education saying we had false beliefs and GET programmes

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.

I think we need to drop the generic use of terms with psych, except where it is absolutely specific and appropriate / be careful with that one. Even though I absolute agree with your definition you've posted and it being relevant I think the chosen wording needs to be better. ANd because on this occasion I think linking it to the tactics used in greenwashing puts it 100% on the 'doer' (like big companies who invest in greener companies to front something looking greener) and not making it about 'maybe there is a bit of mental health causing it' type debate.

I think the crookery is better pointed out by making comparisons to the same tactics used by other industries to hide the same old 'toxic waste' being rebranded, put under another company, and sent back out to the market 'looking clean'.

Rather than labelling it 'psych' and going through the same old-worn debate they want us to. I don't want to end up with the community trapping this into that same rut again.

So that the stuff that is 'plain sight' and really obvious for laypersons to understand as 'scandal' without having to question the victims as deserving or not, and our mental health doesn't get used as the only topic of debate instead of the same old switch and bait

And Because it is behavioural (the ideology and the dodgy treatments). Always was. They just used the 'psych' aspect as a weapon. Let's not give them that one for free this time.

We need to be so much more precise when we do mention psychology.

 

Yes and here is the safeguard Rehabilitation (who.int)

"Misconceptions about rehabilitation

Rehabilitation is not only for people with disabilities or long-term or physical impairments. Rather, rehabilitation is an essential health service for anyone with an acute or chronic health condition, impairment or injury that limits functioning, and as such should be available for anyone who needs it.

Rehabilitation is not a luxury health service that is available only for those who can afford it. Nor is it an optional service to try only when other interventions to prevent or cure a health condition fail. [my bold]

For the full extent of the social, economic and health benefits of rehabilitation to be realized, timely, high quality and affordable rehabilitation interventions should be available to all. In many cases, this means starting rehabilitation as soon as a health condition is noted and continuing to deliver rehabilitation alongside other health interventions. " ​

PACE trial is the fail.

Thousands harmed by treatment is the fail.

 

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'

So it is the only thing they actually ever tried, trialled, offered. ANd definitely the only things we know don't work and probably cause harm.

It doesn't matter if other conditions have been in the opposite situation and rehab thinks it is fine to therefore say this as if it is true. It is an inversion of the truth, facts, situation for ME/CFS. And has been tried and tested and proven to be problematic. Whatever the 'delivery' or 'mode of delivery' or 'department of delivery' or 'catchphrase, name, initiative'.

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.

 

I think this seems a reasonable issue to perhaps clarify and campaign for - whether the clinics themselves should be allowed to call themselves anything other than 'the rehab clinic', and certainly not calling themselves 'ME/CFS' and then only blindly offering 'old rehab'.

On the basis that clinicians do both have an oath and have the guidelines that they will have been required to have read.

If they wish to then take on the liability of knowingly diagnosing someone with PEM/PESE and then sending them off to rehab clinics - which should be required to list what they plan to do, and whether they understand PEM/PESE as it is defined and are safe for that - then that is very different to hiding what these places are under a 'pathway' and labelling the clinics as something else.

It is a switch-and-bait using a term for a clinic that would 'catch' those who have a condition defined by PEM / PESE which would be harmed by rehab to get people to refer and then not taking responsibility and liability for that foreseeability in what they intend to deliver etc. ?

Let's at least have some honesty if GPs are being asked to send their patients off to someone else to potentially harm them. And then of course there is the massive red flag of informed consent being skirted.

Whoever is responsible for that pathway if they are engaging rehabbers to rehab PEM should be being required to call said clinics rehab clinics. And if they are requiring GPs to send pwme off there against the guideline advice then they should take on that full personal liability for choosing to issue that edict?

 

Can you remember where he said that? Link required for evidence.

 

I'm doing a 'going fishing' for it.

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.

Note these 'therapies' hadn't been described as 'rehabillitation' for ME/CFS back then (although rehab getting involved in long covid might have been part of adding that term in) but as 'treatment'. And that there are differences in what they describe both cfs-CBT (false beliefs) and GET (below they say they were using heart rate limits whereas I believe it was increase by a set % more each week) here vs the PACE manual. I note that reference 13 is supposed to be said pace manual but the link goes to a page that now doesn't contain it.

and there is this

Thread here:
Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

 

Absolutely perfect @bobbler thanks for that.