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

Seems like a very good idea - at the very least I'd be interested to know who supported funding this one!

 

And one so long that it batters even those not severe just to do half of one of them - and there are four of them !

over-exertion by questionnaire, and coercion are such major issues those with ME have had used against them for so long I cannot believe a charity itself has allowed this to happen nevermind sponsoring those doing it

there should be no way that they don’t know that those severe simply couldn’t do even a few of these questions without it having huge payback or feeling they weren’t really in control of their answers. Which is a massive safety and consent issue

and I think the very same happens when you look at all four fir even milder - they won’t be functioning to catch out being coerced and led by the end of these.

its not like equivalent illnesses would ever use these for measures so why is something so badly impacted by this exertion diving in to ask for this to be enforced onto patients?

if decent biomedical research doesn’t touch this nonsense measure will it be ignored? Is it a way of continuing to block that ?

because without a doubt using this PROM while not changing their offering one but was the plan of the BPS since 2013 to continue to manufacture / coerce ‘results’ to claim their harmful treatment that leaves people more debilitated somehow ‘helps’ and should continue to damage people and suck all the medical funding

and I’ve not seen a jot of attitude or care to show there is intention to guard against this or do any different from its ‘designers’, or even be receptive to what aren’t just begging questions but matters of basic safety and human rights of consent etc

what are they doing? And why don’t the MEA understand this and properly answer it?

 

Just posted on another thread by SNTGatchman, this Canary article about AfME withdrawing the “Care and Support Plan” template created by Peter Gladwell.

https://www.thecanary.co/uk/analysis/2024/09/04/action-for-me-cfs-care-plan/

I note the article references an ME Action survey on NHS ME/CFS services in 2018, where the Bristol Clinic run by Gladwell attracted a huge number of respondents - 78, more than any other. 45% said the clinic’s treatment made them worse.

Interesting that he’s designing the NHS PROMS outcomes yet his clinic has been roundly criticised by patients.

 

Yep. I popped a link to survey on MEAs Facebook page . Makes no sense at all

 

They’ve made it clear they don’t wish to discuss.

 

Not sure if this is the same ME Action survey - this is from October 2019; the most relevant data is in Appendix I (p46+):

76 respondents from Bristol:
* 1 reported being much better, 12 slightly better, 27 neither better or worse, 11 slightly worse and 23 much worse.
* 30 respondents felt pressured to undergo "certain treatment", 40 did not and 4 were not sure.
* 29 respondents thought it should be closed, 33 adapted to provide different services and only 13 thought it should continue to provide current services.

 

THIS is what needs to be the starting point for implementation discussions

NOT pwme or who are representing them being persuaded by BACME that not only is apparently the only way forward thru them , but also ‘patients’ must ‘behave’ and are threatened with if you don’t sign off these things we want to do and keep feedback non critical ‘we won’t trust you’.

The gall of anyone being conned that the issue is that patients ‘need to earn BACMEs trust- so hand over signing off x demands or things we want or stop saying x basic critique OR…! Which gaslights like those people who’ve been so drenched in the sob story alternative reality of how much power they have to think they have to keep impressing BACME and giving them things - it isn’t still the old days, actually. Stop. Think. Take a step away from them to get enough space from their talk to think how ‘in charge’ are they? What really is their negotiating position when you take away their bravado/bluff vs wanting to deliver things totally different to the guideline compliant stuff would cost to have straightforward people in only doing that straightforward stuff instead. Funding as an excuse doesn’t work where it only covers 30mins of gaslighting from an OT instead of 30min report from a straightforward paradigm. Or have I missed something?

And are they really going to change because you have them what they want under the promise of trust or was that list of things they used that promise to extort actually them just getting sign off by the back door?

Instead of BACME having to be contrite snx begin to behave in more transparent ways to show they’ve changed deeply - not just surface spiel - to earn trust

it’s like if the post office scandal started with charities handing back power to the post office to decide on the future of those wrongly jailed and saying they need to behave and go along with it ‘if the post office staff are to trust you’

I know they can be scarily threatening when their individuals due the fake anger turn on a sixpence to get their way thing. But I can’t believe how hook line and sinker their tactics have managed to get enough individuals they targeted with their sweet talk strategy (certain individuals who then happily believe when they say arguments‘came from the patients’ without listening to the patients and the patients being the people they rep and reason for being not BACME)

it’s obscure what I’m seeing going on

 

You can’t have 30/76 ‘were pressured’ and 34 were harmed

and suggest the same entity and managers can be left in charge

just need to be chatted to ‘on their terms’ . No one about whom that would come up as a result can be chatted to and changed.

I mean that is so bad really isn’t it when you think of these stats - why aren’t the clinic MEA culpa shocked and desperate to change culture with significant power distribution changes (patients vs staff)? It’s such a big and terrible thing to have coercion confirmed as happening in an illness where it’s not just medical care but survival with employment accessing medicine adjustments care and benefits you are entrusting / handing over to those people. It’s flagging an issue that’s very grave. ?

it’s not just ‘did harm’

but also confirms an issue of coercion - which if it’s happening to do treatment will have happened on measures/ freedom to feed back thru the forms the clinic itself has.

it’s publicly and transparently ‘unsafe’ to have that term of ‘pressured’ and believe the same people who pressured those people won’t pressure any PPI group or measure in a process getting a treatment that ‘does work/is ok/is compliant’ it’s confirmation /evidence that a power differential is a problem.

and what it must have taken those people to be brave enough to tick that box given the position they are under given it’s impact on all sorts they might rely on.

 

What's most frustrating is that they could earn a lot of kudos—and, by the way, potentially improve their own career prospects—by just getting it right.

They could become recognised experts in improving diagnostic services, and advising and supporting recently diagnosed patients according to the NICE guideline. They could be commissioned to run high-level training for NHS hospital trusts on developing their services, they could gain further profile by working with government to argue for better training and provision.

I can't understand why they'd actively choose not to, especially now the BPS bubble has burst. Is it too much trouble or something?

 

I know, right? They could just start off slowly and then gradually update their skills and knowledge from its baseline, by 10% ant an time, until they’re up to date. It’s not hard.

 

I think the problem is that the UK specialist clinics and BACME genuinely believe they are helping people and that the false positivity of curative rehab is so engrained in the UK clinicians that they are unable to step back and be objective. As said elsewhere there are lots of reasons that clinicians and even patients think that a fixed term intervention actually helps, as long as you don’t undertake any longer term follow up when real life and deterioration due to over exertion kick in.

 

And on that note, and the point in @Trish ’s brilliant letter to action fir ME which flagged gladwell using patients from his own clinic for his research

I think - and I’d like ideas on who with- the risk of coercion in research needs to be brought up. As well as newbies being assessed in a short 6month timeframe when their reply it’s based on promises ‘it’s hurt not harm’ and ‘no pain no gain’ these same people know those at that clinic have control in the future of their records and what is written about them to all agencies and their employer.

I don’t know how you manage the wider issue where even if it was a bps/ BACME person from a different clinic the risk or perceived risk leading to coercion not to displease would be the same

I think there needs to be a charter that separates anyone who even knows who those Participants are as a role in any trial or even just research from being those who could play an active role themselves or be part of such memberships people would think it could feed back /that perceived risk (not worth risking upsetting)

I’m guessing this would be a problem for good research though such as physiosforme stuff - and it’s an issue you suddenly realise you get with therapist delivered (along with the hard to do blinded trials issue) vs eg drug trials

but could there be ways of protecting patients/participants put in place - would it take some sort of legislation like whistleblower (which doesn’t seem to work as people are still sacrificing a lot with that) or could there be other simpler things to put in place that would make participants feel safer that they could displease with their ‘results’ whether subjective or objective etc?

I mean it’s a particularly vulnerable one for ME justified by the stigma and the hostile environment and potential for certain notes on a record to cause disruption far and wide . So it feels like something that could be enacted based on that as a ‘safety rule’

but there are probably lots of other illnesses including any with mental health powers hanging over peoples heads or other things.

Or promises of any kind of job opportunities for those in illnesses where ones that fit are hard to get seen another worry are being used as ways to control peoples testimony (like lightning process trainer you need to ‘have recovered’ ) . They might not realise it but these things might be so potentially rare ir important and the link between the two not being regulated so people know for sure that giving whatever feedback in research won’t preclude them from those - I don’t want the jobs disappearing but the whole talking to someone who does that job you want who says a few years before they were you and they did x,y,z even could be enough even though that’s not the intention from anyone.

 

We don’t even know which patients from the North Bristol clinic contributed to the Care and Support Plan template. The patients themselves don’t know. For all anyone knows, the patients may have all said “this is rubbish, I hate it” how would anyone know? There’s no due process. In fact, the Trust should tackle this. Did the patients know what they were contributing to, how the info would be used etc? Look at the patient participation ethics sheet you have to sign usually for such things.
And if they didn’t know, there is a huge ethical issue in getting patients, who have exhaustion, to do extra stuff for you at clinic, as part of your side project, without their knowledge or consent.

I also don’t understand why Gladwell has time to undertake creating the offensive template on the NHS’s dollar, but needs £90k from the MEA to design NHS patient outcome measures.

 

I know but then I remember that it’s 130 people in BACME but all mightnt have joined because they agree.

and there are a few big kingdoms who’ve sewn their business models or maybe partnerships or maybe they’ve got a qualification or developed books in a certain treatment , or not ?

but these are worth looking at closely with that eye of why don’t the bosses of THOSE want the change

because the people who are just employees aren’t going to be in a position yet to do something different if their job is only available at BACME clinics and even if they found one that wasn’t there isn’t yet another job for them in their area.

I’m guessing people need a certain level to be able to do this (and how do the bosses of the bps style clinics promote and does that depend on ‘loyalty to the paradigma’?) - even if we could as pwme go out and talk to them and say why don’t you open a better clinic or whatnot.

But by that point they are likely to be at an age where they have kids or a partner with a job in that area so relocating is harder than for younger staff. Plus you need that salary and that flexibility on hours to make it work with childcare etc or elderly parents or other things.

so I think there is something in we and our allies need to help - at least by standing our ground and not compromising further on an already compromised guideline - by forcing change on those big places.

and i hear commissioning is local etc but I like @Jonathan Edwards pointing out what it needs (doctor, nurse, maybe OT) and as a community we need to be able to start working towards at least having the ‘ask’ correct for those. So if there are other staff that might (do the new way) then we work on the contract asking for the right thing?

And anyone with something additional that might be useful (I’d like to also see a genuine scientist or two added to this at least on a regional level, with said ones being the type who can dazzle with understanding how important methodology is vs ME and the different severities and how long it takes to get knowledge to be useful for subjective input etc) . So you’d like to feel like there was a position where those who felt they could shine in something genuinely useful like this could feel it’s worthwhile coming out with it.

I might be naive and idealistic here. But I see how many private companies etc we have that were set up based on those opportunities’ when the same was done with the old guidelines to fill the need (not saying all are necessarily bad and won’t change and update btw)

so I’m trying to guess what it is that makes that happen

 

Agree - I think , and I don’t know what it is (not just a campaign ) , getting it understood that the methodology issues underlying these areas are the big issue is key

and using that term isn’t sexy or a good sell but I mean they don’t seem to get they are exactly like hairdressers who say do you like your hair and would be shocked to hear they were a bad hairdresser ‘because they all say it’s great’ they might even have a number of regular clients they think confirms their hair cut/colour skills. It isn’t until that withers away that they realise.

but at least it can because apart from convenience and social pressure because she’s nice and done it for ages at least people are paying and can choose elsewhere.

imagine how polite and ‘yes it’s wonderful’ people would be if your employer might get a bad note or your GP saying you didn’t comply or try hard enough .

and that’s one thing if some nasty people who don’t like disabled want to imagine that’s ok because they should put effort into getting better.

But even the research /trials they used to justify commissioning the treatment: Crawley eg al (2013) and pace when it was properly analysed/the errors corrected showed it was a treatment that would NEVER improve their physical function - in both the Crawley AND the pace context ie ‘no matter what the delivery’

so we’ve had ten years of patients being forced to say the right thing to get out of there but if they had PEM ie ME/CFS it didn’t work and was nothing to do with either the therapist on that front line or the patient (mind or how hard they tried)

but that therapists boss thinks the ‘what’ works

what are they going to do because it’s tempting to just bury yourself in hoping ‘they all seem happy so that must be wrong’

and of course the classic ‘I’m not going to get involved’ because culture wise what can they do with it if a patient says it doesn’t - it might get twisted onto them

as believers in the ‘best to think positive’ then yes I suspect they’ve all ‘chosen’ this reframing to ‘choose their own happiness’ - shockingly that’s a (not scientific psychology done properly at all but I’ve heard it being repeated a lot by friends who joined MLM multi-level-marketing companies who had away days ) cod psych thing that ends up getting bunged under these type of fake CBT imitation embed motivational interviewing into care type things?

and lots of women who hang round in groups seem to be justifying it to each other at the moment so I guess it’s a ‘trend’ that’s been spread through layperson nonsense probably starting with those social media guru things you get and the ‘inspiration quotes’ type posts bunged through feeds etc

 

Or if you do see then two years on tell yourself ‘bless ‘em they must have metaphorically fallen off the wagon and relapsed’ and in their mind they think mental health without their positive input so they can pity the person and said person is too exhausted to enforce that long dotted line from their cause to that consequence when the last thing they want to do is see it.

that’s what they been trained to see because anyone without lipstick on is ‘mental health’ and anyone with it on ‘is doing physically better ’ seems to be actually trained in in training as a signal fir them to look for and write in note - ‘because they must spot mental health’. And bps git away with choosing to not differentiate or calibrate any of their tests for it from disability. Even a gammy leg now they are being brainwashed ‘think FND’ or ‘functional’ purely by repetition if it’s a certain demographic.

hence it’s all a very convenient set-up with the anyone can just say it’s mental health position - keeps em all happy, and understandably angry when the person it’s being done to dares ‘Rick the boat and disturb that peace’ just fir the sake of truth when ‘I don’t get your problem just accept it because you’ll still get your c,y,z with that anyway , we are caring about you don’t you see and this is us being kind by being positive, why are you nitpicking’ (just a small hop from there to the anti mental health tropes being wheeled out to sell ‘but why would they be so bothered if it wasn’t true and didn’t matter to them’)