United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

I think the issue is the gap in expertise. People were foolish to think that allowing the old staff - who had the opposite of expertise and needed de-programming of their false beliefs before not just learning knowledge but critical thinking and science etc - in place. And letting them dilly-dally to then surprise surprise just not even have re-packaged the same old irrelevant to the illness guff that is 'what they do' and certainly 'what they want to do', having only focused on the sales spiel and wheeler-dealing behind the scenes.

It always needed with the new guidelines an injection of fresh talent. And it is about in bits and pieces. Bateman Horne, Workwell, PhysiosforME - and there must be a mindset of some other young and so-minded professionals who would be up for getting into developing an area. I think that there are some good OTs.

I think the issue we have is a mindset from an area that was developed around quite different conditions, certainly not any illnesses that hadn't had treatments that meant health could then be improved. And ME only got dumped under them really under the excuse (we now know of but patients weren't told) that apparently it was in our false beliefs. I'm not sure how much the funders and referrers pretending they can't read or can only read the stuff certain people send them insisting it is still fatigue, but not the patient stuff, actually really covers their backs.

But as long as they (referrers/funders) can say 'this is all I have to offer you' that becomes different. Which is why I don't know whether this is deliberate HObson's choicing and one thing that we need to remember to do is keep laying things out in straight terms as to what is needed and what is harmful and not letting things get muddied with all these flim-flam fillers.

I don't know much about how funding works but at the moment I imagine there is a situation of spend it or lose it. And once you've had to spend it on something that really is just any old thing that hopefully doesn't do any harm and might seem nice for some then you forget that the next year the person who did that kneejerk thing ends up having to justify why and sells it for them. And some very strange attitudes that if you think it might be labelled 'wellbeing' for healthy people then it can somehow do no harm even if that isn't being checked properly (which should surely be negligence shouldn't it, not checking for harm?).

A prime example is how back in the day you could see the whites of the eyes of staff in a gym when they did an induction after the GP had thought it was a good idea to suggest going there. They were none too keen about the blood pressure checks and health stuff they took, and all of their machines have taken objective measures (and logged it on personal profiles) since probably early 2000s. As they weren't giving out programmes do to they had liability in a different way but you could definitely sense their part in a chain of responsibility.

Then add in the weird RCP direction I saw posted at some point on social media after the guidelines telling commissioners that the GET delivered by clinics isn't the GET talked about in the research in the new guidelines or in the spiel of the new guidelines so it mustn't be discontinued. what a weird thing to do. Surely that would make the person who did it personally liable? If that wasn't the case that is was 'totally different' or 'safe'? - and anyway isn't saying that phrase in the first place actually them literally acknowledging the GET did harm?

Anyway, I find it very strange because as the head of a trade union lobby organisation who is selling a service it certainly doesn't make you free from liability if you tell your underlings to sell a defective product and/or order those buying it to not discontinue funding it. I'm pretty sure saying 'I trust those who said it to me' isn't an excuse, you have to say that phrase in that literal way, not take on the liability yourself? I mean you don't see the train or transport-related union leaders making false claims about the safety of one product or another - in fact it is quite the opposite.

And I don't think we should feel bound to having to have controls of those who didn't get forced through the 'my GET's really gentle' (like from Bavinton's spiel in the 2011 MEA article), if someone gets worse they should be sued. But there needs to be somewhere that pwme can report it to. It is all a bit strange isn't it the idea that unlike anyone else in the country we don't have legal rights in that way? Kids forced through treatment that made them so much worse it wrecked their future (because severe and very severe ME is a very different kettle of fish to eg if they had mild and a chance of recovery if adjustments had just been made) .... how is that so different to bad maternity care cases that end up in disablement?

And given how poor the evidence-base has officially confirmed to be (and it doesn't look like they intend to change their measurement techniques or methods any time soon unless something forces them) then claims of intentions, whilst not monitoring to honour that safety-awareness and does it make people a lot worse long-term, don't really count do they? Not when there is foreseeability from it seems so many rounds of surveys flagging harm?

And it also doesn't matter what part of care your profession does, you are supposed to be able to objectively look at someone who has now been forced into a wheelchair and see it. And again, the 'research' having been outed to say accusations of 'they aren't really that disabled it is madness causing them not to walk' is confirmed as just been slaggy blag. And saying you had some sort of 'belief' in that (that people who got worse were doing so because of false beliefs) without evidence doesn't release you from a professional duty, doesnt' release your bosses or the system from responsibility to have spotted than madness in you and have done something about it.

 

It’s like the bastards don’t want to learn.

 

I don’t think it would be right to imply that they think they are doing anything wrong. To me they have a dogmatic conviction that what they are doing is right, whatever the patients and the evidence says. I think they genuinely believe they are saving children.

 

We should remember that most of the UK ME/CFS specialist services were set up to rehabilitate on the basis of GET/CBT around the time of the old NICE guidelines, and also that the basis of most NHS rehab services is to establish current functioning and increase performance levels in increments from that.

Also I image a good percentage of the people attending the specialist services apparently improve, if they are anything like me. I drastically cut back on all activity to be able to add weekly clinic attendances to my routine which had the effect of reducing PEM, which had the effect of creating an illusion that my health was improving. I also desperately wanted to believe I could get better. It was only after I was discharged that real life hit and I relapsed.

Unfortunately these professionals focus on rehabilitation in the traditional sense come to ME/CFS with a totally inappropriate set of assumptions, especially as they only see the milder end of the spectrum over relatively short fixed term periods that enables them to avoid questioning their ingrained mindset. Certainly my ME has challenged my assumptions, as a former NHS Speech & Language Therapist, about what rehabilitation is, even though much of my working life was with people with long term disability or degenerative conditions.

[added - what the specialist services have failed to grasp is the counter intuitive and potential unique nature of PEM]

 

The excuse that they genuinely believe in what they are doing is irrelevant. Beliefs don't free people from responsibility, even less so for professionals. Otherwise anyone could do anything and simply argue they truly believed it. A bank robber insists that he genuinely believed that the money was his, and is free to go. A professional abuses someone and argues that he genuinely believed it was for the victim's benefit. They have no evidence for their pseudoscience, and a huge amount of real-world evidence that it is both failing and harmful. This is all that matters.

But this is also not just about jobs. This is one of the things that anger me the most. None of those people would have trouble being finding work elsewhere in the health care system. Health care systems are in permanent shortage of workers, there is 10x more work to do than there are people for it. They would all be fine leaving all of this behind. All of them. Even if found guilty of the worst offenses any system could manage, no one would be punished for it because the institutions that could punish them are just as guilty as they are.

This is about saving face. About egos. It's hubris more than anything. They just don't want to admit that they were wrong, and in continuing to inflict massive harm onto millions, they escape accountability. They are cowards protected by failing systems who are highly complicit in inflicting this harm, behaving the same way as the tobacco companies did, for the same reasons and expecting the same outcome: immunity from any consequences. As long as it's clear that there are no consequences for inflicting harm, it will continue.

 

I understand what you are saying but I don’t agree that it’s irrelevant. In law, intent matters. For example, in the UK if you kill someone unintentionally you can’t be convicted of murder, only manslaughter*. In medicine, negligence is be a less serious offence than intent to cause harm.

I agree the their actions are cause for sanction regardless of whether or not they believe they are helping patients (ie intent) but it would be a far more serious offence if they were knowingly causing harm or intending to harm. I don’t think we have evidence of intent to cause harm, and it can be counterproductive to make claims which exceed the available evidence.

My view is that most of these people probably are probably convinced, or convincing themselves, that they are doing what is best for patients. To me it is a bit like arguing with people who have strong religious views which are impervious to rational debate. Many harms have been caused by religious fanatics of all faiths and I think this is similar.

[Edit: I’m not a lawyer, so any legal experts please correct me if I’ve got the details wrong.]

 

I agree, Robert, they are convinced of the usefulness of the treatments.
No excuse in not being more critical, but nonetheless it is their belief.

 

I suspect it is highly unlikely that one of us will be going - although I would love to hear what some of the speakers have to say!

 

As @Peter Trewhitt said in another thread (which I can't seem to find), there's the complication that recently diagnosed people may genuinely believe they have improved. If patients report that to therapists, it's not unreasonable for them to think that they've helped some people.

Not unreasonable immediately, anyway. They should be following people up long term, and might get a different picture if they did. This is where suspicions about wilful ignorance begin to creep in; it's very convenient not to record how many patients have maintained any perceived gains or been able to sustain employment, education, etc, in the longer term. I don't know who would be responsible for making decisions like that, but I guess it might not be the clinics.

Obviously, some people will recover fully. Discovering whether (and if so, how many) people would have recovered whether or not they engaged with a clinic would need a study to compare outcomes at, say, two years post-diagnosis, between a specialist clinic cohort and another receiving standard GP care. I doubt many of the clinics would be in a rush to suggest it.

 

The real result of PACE of course is that if there is any benefit at all from popular therapies it is too small for it be possible to distinguish it from natural history in routine care.

 

Not too well versed on the technical legalities of how intent is defined in murder, but I'm pretty sure that if someone repeatedly does an action that they are warned will lead to someone's death, it's certainly close enough to be considered as intent. People have the right to ignore warnings, but there are consequences to doing so.

But more importantly, no evidence supports their beliefs. If it's accepted that people can simply hold on to beliefs despite contradictory evidence, then evidence is almost entirely an irrelevant concept. Which for sure is an interesting notion to consider given the whole, you know, "we're doing evidence-based medicine here!" factor.

 

One of the most common threads in the Long Covid sub-reddit is relapses, people who thought they were recovered, then deteriorated. Sometimes after weeks. Sometimes months. Sometimes after a reinfection.

Sometimes it's the first time, they got acute COVID (or another illness), recovered and later saw symptoms appear. More often than not from exertion, but not always. Sometimes they were genuine recoveries. Usually they weren't. It's hard to put a number on this, but I see them all over the place, 60% recovered, 80% recovered, 95% recovered.

If they did follow-ups, those clinics would see a very different picture. They don't want to know, they don't have to, and we can't make them.

 

This.
Exactly this .

A crowd funded group legal challenge for those forced into wheelchairs by GET would be an idea , but do we have enough evidence that would allow the waters not to be muddied
@Maat

 

in fact on that last para - where people think claiming ‘they had a belief [that instead of being ill and needing treatment as per guidelines these people had false beliefs and needed to have their freedom removed and physical needs ignored]’ is valid.

well to me isn’t THAT the line where said ‘belief’ is actually in our case plain old rewording of bigotry. A belief like homophobia or racism or misogyny or the list is endless of what is illegal/immoral/inappropriate to decide to treat people badly based on.

and yes there are some dodgy mad ‘researchers and research’ also with terrible methods and high on the manifesto and propaganda side for those too, trying to claim their 'beliefs' (bigotry) has some basis


So aren’t those who cite these ‘beliefs’ they have about pwme just being ‘ist/ism’ and when it is being used to justify harm, removal of freedom and pretending ‘the illness doesn’t exist so I’m free to abuse’ into legal territory (and not medical, just hiding very thinly behind that) ?

EDITED as mulched 2 posts again

 

It's not just PEM but I think what gets failed to be emphasised is the cumulative nature. And how a good way to create a deterioration is to just uplift your output, probably exactly by doing all the tricks on 'energy levels' and maxxing them out, and saying yes instead of no and the like - living the life where for just long enough you think you've potentially nailed the balance.

That's why the 2011 MEA article was so shudder with the two physios who thought they'd 'nailed it'. And the denial coming through from all sorts of places where people think 'it's the delivery'.

It's as simple as you asking for the workplace to reduce your hours to one day less a week and them taking six months to do so, and you keeping them sweet on the normal hours in the mean time, but by the time any new hours happen your health has gone down another notch and you need two less days.

And the horrific irony is that I think the can-do attitude of those who do have ME is particularly vulnerable to the personality and attitude prevalent in rehab clinics. The last thing they expect, having probably done everything asked of them, is that should they then have to report the bad news there will be a 180 switch to call you a different personality to what you have been. And it doesn't matter the context doing that is so rude harmful and immoral.

Instead of being able to and interested to look in the eye and not say 'it must be a flare' that the real outcome isn't 'how well someone is getting on with the exercises' but whether the course made the illness and health and physical function 6months later better or worse. Frozen shoulders don't tend to have to have measures that expect deterioration so they just aren't set up for what to do now their get out of jail free cards have been removed. SO the original applications of things like PROMS is quite insightful in where the errors might be coming from (functional fixedness or something similar as a phenomena)

It's human nature to want your gold stars for having got a patient to walk a bit further in the last fortnight.

But it all gets pretty callous when it has been going on for decades and some of them choose not to look or hear.

 

Very good point to bring up.

I often think that having chucked us into the terminology of the mental health/rehab realm where 'recovery' is used and means a very dodgy version of what it actually means is now an issue that needs to be fixed.

The terminology matters as it drives how things are measured, termed, and when it is measured how that is put across/interpreted.

Really in reality these % you are talking about fit well with the disability scale. ANd if you had straighforward medical clinics then plotting a drastic drop from 90% of former self (10% 'disability') down to 50% should be red-flagging all over the place. Some aspect of the 'treatment' or management, or another assault on the system has happened and if it was another illness and it was recent/acute eg they'd just had another illness then there might be anticipation that if it is eg a virus that has a bit of a long tail or bite to it even that could get worse and needs to be carefully managed.


Whereas sadly the mindset of these areas seems to be oblivious to health in that way, it is quite disturbing it is called 'health service' in the sense of it being part of rather than 'allied' when you think of it. And then even more so when it is cast as a replacement/sufficient on its own. To the extent that the provision of a biomedical service where if they insist on being part of this they are at least required to send people 'back to the doctor' to check it all out and manage things during that period doesn't happen.

There is just this blindly thinking its OK that they just measure their 'doing' and 'behaviour' with almost an ideological gate that means they are banned/will not look at harm or deterioration, only logging it if it is moving forward. BUt also ban anything else from being checked. What do you actually term that as 'care'.

Could you imagine these people conning themselves that if their stroke patient called them and said they'd suddenly lost that much function and felt significantly worse they wouldn't panic and check they were seeing medics? Or yes, an MS patient?

To compare people to an unmotivated post knee-op patient whose knee isn't improving at the standard rate and miss out entirely the whole most important section they should be providing the back-stop for means it is still a non-medical model?

I can see where it has come from: because they weren't ever supposed to be dealing with people with live illness. JUst post-op or those who have been fully treated medically. And think science is the same as doing a satisfaction survey or lowest common denominator measuring of a group they haven't made sure is externally valid.

But yes it is creating a distortion of history/facts. What annoys me so much is when these people with methodology this bad then dismiss all the rest as 'anecdotes' when under a proper licensed system they are red flags and under yellow-carding or urgent medical referrals back into the medical care?

EDITED TO ADD:
In this 'paradigm' (don't know why we have to give them the grace of calling it that: it isn't science and it isn't medicine) the b***ards call (eg going from 90% function to 50% and unable to look after yourself) it 'a setback' - or any one of their hidey-hole nicety terms for a severe deterioration in their illness.

without investigating whether anyone they've termed as having been 'set back' ever 'goes forward' again!!

what a nice way of hiding seriously damaging treatment/management under the pseudo-technical terms for 'just a blip, don't look, nothing to see here with what's happenning to all these people'. I'm hesitant to say it reads like actual madness as a belief-process (sweep anything you don't like under the carpet by any means), not real beliefs they think people are getting better, just dismissiveness of that not being a part they want to accommodate into their model. And the sales spiel/typical language you see of those who have to argue to keep their jobs in companies where that sort of culture is the norm to themselves of 'some of their patients were satisfied', that isn't the same as real beliefs and checks things aren't harming...

 

This is really well summarised; they are attempting to rehab people with an ongoing, untreated illness.

Where else would this happen?
How is is this situation allowed to persist?
Why is there no professional curiosity as to how well their management strategies work long term?
Why no yellow card?

How do they do performance reviews? how many patients did you see? how many improved/got worse? how do you know?
Successfully attending six sessions of a course is a long way from "returned to normal functioning"

This seems to be something must be done, this is something - look! We have a questionnaire to prove it - without asking if it is the right thing being done and when it isn't working changing it.

It sounds so simple laid out like that: the people you are seeing have an ongoing, untreated illness.

at each appointment assess ongoing function; could you do your own grocery shopping, cooking, attend work, shower daily etc.? Can you now? to what level? If the patient is getting worse have a plan e.g. (ideal world) respite care, social care, meals on wheels - what can be removed to increase rest? what tests need to be run eg. B12, thyroid, PoTs referral.

Looking at like this I can see a really simple checklist and flow chart of if...then... much like asthma checks or diabetes; Is your illness well managed by pre-set markers of your own function, if not then amend and review again in a set period of time and continue to adjust until things improve - or at least stop getting worse.

As has a been stated above, this is trying to tweak something broken instead of starting with a blank page and thinking what would help and how do we do that.

 

Here is the other silly thing. If we suggest there were just two problem sectors that are contributing to this.

You have the psychiatrists/liaison psychiatry (which I'm starting to see from social media is a real problem area/source) and those who are unable to answer back to them or referring to them to hide/justify their own issues being the force that has chucked these people into this bucket without investigation often, generally based on their demographics and the bigotry (can't really say it is anything else if you don't ever do a proper work-up or allow anyone else to now can you?)

You have the now called rehab but previously 'whatever' cohort of HCPs/allieds who've been picking up the 'enacting/dealing with' once we've been taken out of the health system and dumped on them.

What this second group seem to be focusing on claiming is 'that they believe in their treatments' or that 'their treatments (can) work (sometimes)' and not 'is this the right care'

It's the whole switch-and-bait still (yawn) of 'delivered effectively' vs 'an effective treatment'.

Of course they are now obsessed with the former as a rhetorical, sophist distraction politician's answering of a different question to the one they are responsible for. And have had pointed out to them, so they know full well. They are just playing chicken trying to pretend they didn't understand what they'd been asked like naughty kids pushing boundaries. I'm sure there are some further down the chain who would be different but ...

But I think that any single one of them who is trying to claim they don't harm because they adjusted the delivery is actually covered by the guidelines no treatments based on the model of false beliefs or deconditioning. That isn't hard to understand.

ANd pretending that offering mindfullness or wilderness whatever is OK 'because norms like it for wellness' is deceit. JUst because there is an 'and stupidity' alongside it doesn't make it not clearly based on some idiot psychogenic basis, whilst ignoring the fundamental knowledge of it being an exertion-based condition.

As soon as they started making any claims or measures that 'what they offer' might be in any way progressing that person's health as far as I'm concerned they are in breach of duty of care - or whatever they are covered by. They've turned those things from being 'we've nothing but if it might help I'm willing to give you a membership to listen to some classical music to make life more bearable given we can't change anything' to an agenda where they, having shown they aren't prepared to be scientific or up-front with methods, have shown intention to try and turn these into 'claims'.

And anyway, I have big issues with them thinking their first and foremost obligation to people they have mis-served if they insist on staying in the area isn't growing themselves, educating themselves, making themselves safe, and learning lessons from where they screwed up: methodology. Oh and coming up with proper health-monitoring that is long-term and concerned about the health of the patient.

Spending their time on other nonsense is cherry-picking we've all seen colleagues do in the places we have worked in whilst we get on with the work-horse stuff or deal with the stuff that really has to be done. But when that is all the funding and there are important basic investigations some mightn't have had due to the dodgy bucketing the CFS diagnosis encouraged (don't investigate) with its off the record briefing, and cleaning up diagnoses and treatments to make sure eg those with fibro vs ME are getting the right advice going forward and that things are being properly recorded - you know the basics when info moves forward and something has been such a trash-state for so long ... well it is something pretty different indeed to go off and do these unevidenced 'add ons' with no usefulness that they fancy first/instead.

There is definitely I agree a naughty habit of this sector deliberately asking the wrong questions and taking advantage of newbies. Who shouldn't be expected to place trust in people who aren't being properly oversighted to make sure they've changed without warnings of past issues. They will walk in and be asked 'did you like the mindfulness course' and assume, because it is right for them to assume professionalism and duty of care, someone must have given it to them because it helps not harms. That that work and evidence must have been done first, that the essential stuff like logging their diagnosis properly and checking for other things is being covered. They are answering on the basis of being misled by omission of reasonable assumptions not being done. Which is a major consent issue and breach of trust. Then the dodgy answers to the dodgy questions get used. It's pretty outrageous really.

 

It's also sad to watch so many people who might think a lot of themselves being so incapable of growth and change. I suspect there is a power / market / competition structure issue going on here.

One thing I've noticed is that there are a few 'old names' who have made businesses for themselves, one way or the other. And the rest are having to take jobs underneath them and there is likely a lot going on re: commissioning, funding/grant applications expertise and connections with councils/hospitals/CCGs/ICBs and the like.

I don't think there is too much coincidence here.

I think it is insightful it is the same people who have positioned themselves well in the old-school who the same names we are seeing coming through dominating the new for ME/CFS?