Joan Crawford
Senior Member (Voting Rights)
Hi @Hutan
Yes, it's work in progress. Hope to have first full draft by Easter, then it'll need editing/refining before the formal review process.
UK: British Psychological Society survey on their planned new guidance on ME/CFS, deadline 9th October 2024
- Thread starter Nightsong
- Start date
Yes, it's work in progress. Hope to have first full draft by Easter, then it'll need editing/refining before the formal review process.
Jonathan Edwards
Senior Member (Voting Rights)
I agree that the wording of the statement seems full of non-sequiturs. Psychologists are used to supporting people by providing a sounding board and if they have talked to lots of other people with ME/CFS or even have it themselves then they might be quite useful in that regard.
But since we have no valid psychological theoretical base for anything here there does seem to be a disconnect. She says 'psychology is not for everyone' - well yes, we don't want psychology here, just being used to talking to people sympathetically. And 'coming to terms with grief' sounds suspiciously like something you do according to a psychology recipe, which I would run a mile from. Learning to pace isn't psychology as far as I can see.
I rather wish that it was made clear that 'counselling' might be useful but that there is no place for 'psychology', which implies theory and there are no valid theories here.
But what do you do if you have trained as a psychologist and realise that you are more likely to help people just by experience with how people cope rather than by theory? I sense that the group writing this are doing their best to deliver what might help. It is just that jargon creeps in everywhere in life.
I suppose a counsellor could help someone express their needs in the workplace or accept a lower level role that allows working from home? They might help someone truly acknowledge the constraints they have, and so not keep overdoing things. They might help someone feel better able to explain to others in their life, their spouse, their children, their parents, why they can't do as much as they would like to, and so reduce the pressure on them to exceed their capability for activity.
I think a good counsellor could help with work adjustment and pacing in a number of ways. I'm not so sure about what a psychologist could offer, but I guess often a psychologist is a good counsellor.
(crossposted with Jonathan's post)
Kitty
Senior Member (Voting Rights)
They're a recognised professional who could help argue for reasonable adaptations under the law. I wouldn't have got half what I needed to stay in work without this (though in my case it was an occupational therapist).
Because most of us struggle hugely with pacing, and some might benefit from support from a psychologist or counsellor. Guilt is a really common reason for people not giving themselves the recovery time they need, and a lot of it is self-imposed.
I'd love to have had that support when I was first diagnosed, I think it would have shortcut a lot of things. I suspect it might have helped me to give up work earlier than I did too, because the fact I was still trying to keep going—partly due to ingrained work ethic—was patently ridiculous at times. I just couldn't see it through the ever-thickening fog.
Utsikt
Senior Member (Voting Rights)
My psychologist is brilliant, mostly because she doesn’t really use any frameworks (other than something that basically amounts to «it might help talking about it»), and everything else is «this is one way to look a things, does that resonate with you», with me responding «not really, this is more what it feels like» and that helps me explore different topics that I find useful.
>95 % of the value she provides is that she’s a third party that’s paid to listen to me, that I can say anything to, and that I don’t have to worry about loading too much onto people around me. So her role is valuable to me, not any theory or framework.
An OT could also do that, with more credibility and less stigma.
Sure, but so could a nurse or a doctor or an OT. There’s no need for psychology, only compassion, authority (in the eyes of others), and a decent understanding of the basics of ME/CFS (if you learn the factsheets by heart you’re set).
This feels like a solution looking for a problem, not someone looking at the problem and trying to find the best solution.
Although I guess this kind of psychology is much better than the BPS (biopsychosocial) crap, so it might at least help avoid some harm. Especially if they can write reports stating unequivocally that there are no psychosocial root causes with this patient.
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Yes, that is my main hope with this. (Just noting the confusing duplication of acronyms - Bio-Psycho-Social (aka the psychogenic paradigm) and British Psychological Society - for people new to these conversations.)
I guess it might also be a useful guide for anyone with any background (e.g. nurse, OT, doctor) who finds themselves in a role of providing emotional support for people with ME/CFS. And with the British Psychological Society stamp on it, it will have a bit of authority. If it goes as well as it seems to be, it will be a useful resource for people to quote and link to when trying to improve ME/CFS services.
Kitty
Senior Member (Voting Rights)
But we do have a problem, a huge one: people are not believed by most healthcare professionals. We desperately need solutions to it.
I don't care what the person's specialism is if they understand my disability, offer me appropriate advice, and are prepared to help if I need supportive testimony to access appliances, work adaptations, benefits, housing, etc. I've had to argue for all of those things, and none of the evidence has been provided by a doctor. It's always been other professionals.
Where there are significant difficulties in adapting to the illness and the need for pacing, psychologists or counsellors are the best fit anyway.
Utsikt
Senior Member (Voting Rights)
Thanks, I’ve edited to clarify.
Yes, these are problems but I don’t think they are best solved by psychologists.
I’d much rather have a skilled nurse do that, maybe with an OT as well. Because they can answer medical questions as well. We don’t need all of the extra bits from the psychologists.
I agree that on the menu of what across all of the psychology options (not all can offer all of these) that CBT is the most inappropriate, and is likely to be a harmful match even if it were pushing the 'right' ideas due to the style of it (too exhausting, too much too fast, too confrontational but also that feeling of being violated by having to repeat back things that have been put in our mouths because we were beyond tired and unable to really feel on top of having thought about it by x mins into a session).
I think it is particularly inappropriate for those who are newbies, and particularly harmful from a mental health/feeling violated given they are still at the processing stage that with such a counter-intuitive condition is a real mind-screw in itself that short sessions focusing on declarative stuff doesn't help until you've been through that experiment and explore on your new body stage. And then there's the what that means for your future and if you are younger how much you want to write-off 'never trying x ever' vs the impact of it, and having to quite significantly change what it means for who you will now be and what your new weaknesses ('reliability of body', stuff related to environment and where and how you can work) and strengths (empathy, prioritising) are - none of this is a x week course, short-sharp session with definitives thing.
It's putting pressure on people to 'be fixed' when it is more than even a normal-level total recalibration of everything you knew. And noone surrounding you is coming along for even part of the ride quite often. SO it is pointless suddenly having a new you when that's effectively talking in French to the people who are waiting for you to 'get back to normal'.
It's style of pushy coaching/questioning and asking for explanation or change to be agreed to quickly is particularly risking harm given how people will currently have been treated by others and the pretty hostile situation many will be thrust into, certainly once you hit the 'it's been 6months, 1yr, 2yrs and you are no better/still doing x' stage where people either quietly abandon or get grumpy. It would magnify that feeling of being in a certain type of world, whatever its intentions and content being right still it centring on 'you being the one who can take responsibility for fixing the problem' just while support networks are getting impatient and crumbling.
And anyway, if there are so-called good elements there never was any rule they weren't better delivered by someone kind and empathetically reassuring someone it is genuinely OK for them to take the rest that they need.
Ironically, the one thing that could be useful from a psychologist would be a letter to whomever (be it a boss, employer, family, GP, other service) warning how the old ideas/truisms/'common sense'/toxic positivity sometimes embedded into them via training courses that were either for general (works for all) or specific things are not helpful and might need some thinking on their behalf to step away from.
To be able to underline that adapations need to be made to processes due to exhaustion causing cognitive issues and it being appropriate that eg meetings or important processes adapting to that (and that it isn't 'mental health' so claiming giving them counselling whilst changing nothing would cover their back for that, but would be taking advantage of someone when exhausted and ill to force them to do it all in a 2hr meeting when they can't read or think straight after 30mins and so on).
And to gently underline that these are ill people who might need less hours and more flexibility and support and how destructive it can be to mental health/happiness as well as physical health for people to infer there is any motivation issue or requirement on them to be positive or that the non-patient thinks they have better ideas on how they should 'manage themselves'. ie to underline the need for listening over thinking an old-school 2 day training course means they know better.
Particularly as in the early days many of us are as riddled with all these ideas as those who don't have the illness so we are trying our best to drop feeling like we need to push through and/or people-please.
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I think it is worth us noting that there are very different capabilities across different types of professionals.
A psychologist doesn't have to be a clinical psychologist looking for everything to be put down as mental illness, it could be a cognitive psychologist or a psychologist who understands this.
Someone who trained in CBT therapy but hasn't done the full gamut of a psychology degree (which I'm started to see might be possible these days) I don't think has a place to offer on the other hand - they can't really diagnose anything, because they know no differentials and have only ever focused in their critical thinking on whether what they've been given to deliver has 'gone in' and not whether that content was harmful or helpful to what someone actually had or able to spot any differential diagnoses and think this is a misdiagnosis or mismatch of the therapy to the cause or problem.
I'm struggling to see a place for CBT that is safe other than the odd unusual one for someone who is quite a long way down the line in having come to terms with their illness and how it affects their body explicitly seeking it out and even then it being in a very, very specific form and needing probably content and very intense training given to them which has been developed with and accredited by people who actually have had ME/CFS for a long time - to make sure the length and intensity and how much people dance around between questions and how quickly they demand answers from direct complex questions is safe.
You can't have someone even moderate being hammered with complex questions at 30mins and coming out with their head ringing.
SO I think the work has to be done - I do think the issue is that the wrong people do it quite often.
And agree we have a supply-led issue where those who could change and learn don't really want to (or think they don't need to much)
So agree work has to be done because, like @PhysiosforME work is vital because pwme get other injuries too, even if we could cut these people out of ME/CFS care that would mean the pwme who might need and were correctly sent to a CBT therapist for some other issue was either being put in a situation. Either cut out of access to that too and not getting it like others would because they are having to choose ebtween treating their other problem and harming their me/cfs. Or not getting adaptations they need and gaslighted by a sector who hadn't be deprogrammed of old tropes, just whilst they might be fragile and treated for something else.
And that's before we get to the horrifically inappropriate issue where 'multidisciplinary' and safeguarding has meant that people who have not been deprogrammed from old tropes they got wrongly trained with in a 2 day course x years ago (or that is still allowed to float round) are suddenly being allowed to go off-piste to what people thought a meeting was about, or come into a meeting behind someone's back and start having a say.
We have to remember that these people who have been pushed through a sausage machine that skipped a lot of the normal qualifications like IAPT and replaced it with tropey training for ME/CFS could get redeployed all over the place and then influence others by thinking they have knowledge or expertise they don't know is wrong, and there being 2 of them in a room 'so they must be right because the other person had 2 day training say that too'.
So, awkward as it is for them to have to admit the old stuff is now tropes and not OK and to 'retrain' - tbh the important part is also giving out a sheet saying things have change and that these tropes are now not OK and there will be complaints upheld/people won't be seen in a good light if they use them - it is a step that can't be skipped otherwise they'll still be out there in society thinking that whatever issue that person is at that point having to have an appointment about, the me/cfs label means its 'functional' etc.
Kitty
Senior Member (Voting Rights)
So would I, but the reality is that we haven't got them. It seems we have got some informed psychologists, and support with adapting to pacing could genuinely be of value to those struggling. For some mild and moderately affected people a year or more into their illness, it might be the only intervention they need apart from access to a GP. As pacing is so crucial and GPs have little or nothing to offer, it could also be the most helpful.
We're unlikely to get anything resembling the network of support usually available to people with severely disabling illnesses until there's a disease modifying treatment, which is well established enough to be administered by consultant-led hospital outpatient clinics at most general hospitals. Given that, I don't see any argument for pushing away potential help that a proportion of patients might really benefit from.