UK: British Psychological Society survey on their planned new guidance on ME/CFS, deadline 9th October 2024

[Nightsong]

Post copied from MEA news.

From the MEA's latest newsletter:

We are looking for people with ME/CFS and their carers to give their opinions about creating some new ME/CFS good practice guidelines for psychologists. These guidelines are being produced by the British Psychological Society (BPS) with the help of Action for ME and the ME Association.

While ME/CFS is not a psychological condition, many people with ME/CFS see a psychologist to help them learn how best to live with the condition or for other reasons unrelated to ME/CFS. We wish to ensure that these people receive the best current advice, which adheres to the NICE Guideline on ME/CFS, about topics such as pacing and symptom management.

It is extremely important that we have involvement from people with ME/CFS and their relatives, friends and carers. We want your input into what should be included in the guidelines and quotes which we can include to help psychologists and other professionals understand what it is like to have ME/CFS.

We feel it is a positive step forward that the UK's leading psychological organisation is working so closely with people with ME/CFS to co-produce guidelines.

The deadline to complete this survey is 09 October 2024. However, if possible we would appreciate it if you are able to complete the survey by 15 September so that we are able to begin analysing responses in time for our first co-production meeting with the BPS.

MEA link: https://meassociation.org.uk/6dso
Survey: https://forms.gle/TsQBGBYKxMGeb1eS6

 

[Trish]

As an aside, I and three psychologist colleagues are leading the development of a good practice guideline for psychologists working with pwME for the British Psychological Society (BPS). This includes a writing group of 16, including 2 non psychologists as experts by experience (EbEs). And many of the group of 16 psychologists are EBEs too. And several clinical leads from NHS services. To date no push back from psychosocial brigade, a few who are members of the BPS and are HCPC registered psychologists. It'll be out in 2024. We will cover a lot if these points in easier to access language.

@Joan Crawford, I have quoted your post from another thread.

 

[Nightsong]

From the survey intro:

The British Psychological Society (BPS) is working with people with ME/CFS, Action for ME and the ME Association to produce good practice guidelines for psychologists working with people who have ME/CFS.

This work is being led by the BPS ME/CFS Working Group (Sara Meddings, Joan Crawford, Louise Kenward and Nita Baker) and its experts by experience (Katherine Langford, Action for ME; and Russell Fleming, ME Association).

While we recognise that ME/CFS is not a psychological illness, many people see a psychologist to help them learn how best to live with the condition or for other reasons not related to the ME/CFS. Therefore, it is extremely important for psychologists to have guidance on how to provide the best care and support, while adhering to the NICE guidelines.

The closing date to complete this survey is 9 October 2024. We will share preliminary findings from responses received by 15 September at the first co-production meeting with the BPS. We are aware that this is a short deadline, especially for those with severe ME. There will be other opportunities to provide input via email and other forums in the future. These will be advertised by Action for ME and the ME Association.

The whole project is expected to take 14 months, with input from the ME community into drafts at each stage. The final guidelines will be endorsed by the BPS Practice Board (https://www.bps.org.uk/practice-board) and Division of Clinical Psychology Publications Committee, having followed their approved publications process (https://cms.bps.org.uk/sites/default/files/2023-12/DCP Publication process.pdf).

 

[JemPD]

Wow is this the project being created by your team @Joan Crawford ?? thats amazing if so, wishing you all the best with it, i will do the survey asap

 

[Trish]

I have looked at the first couple of pages of the survey. It's 8 pages with several questions on the pages I looked at. There are open ended questions which I might answer in a sentence or 2, or, if I have the energy, it would be possible to say a lot.

This is going to take some thinking about.

 

[Joan Crawford]

Wow is this the project being created by your team @Joan Crawford ?? thats amazing if so, wishing you all the best with it, i will do the survey asap

Many thanks

 

[Hutan]

This is a fantastic initiative, I hope it will help to ensure that there is safe professional psychological support for people with ME/CFS and similar conditions who want it. It would be wonderful to have a good resource to direct people to.

Great to see the process includes lots of consultation and involves people with first hand experience of ME/CFS.

 

[RainbowCloud]

Hi everyone! I’m wondering if anyone can help me please?! I know an ok amount about the BPS issues and their history with ME but I don’t know anywhere near as much as many on s4me and I really want to make sure I’m getting things right in this survey. It seems an important step forward that they’re actually asking for feedback from us.

There are a load of hits for BPS when I search the forum so it’s a bit overwhelming as I don’t have enough energy to go through everything and put together something well researched and watertight as I’d like to. If anyone can point me in the direction of a good thread or two on here, or article elsewhere, that might give me a good and more manageable overview I’d really appreciate it?

Thanks in advance for any help!

 

[Nightsong]

Hi everyone! I’m wondering if anyone can help me please?! I know an ok amount about the BPS issues and their history with ME but I don’t know anywhere near as much as many on s4me and I really want to make sure I’m getting things right in this survey. It seems an important step forward that they’re actually asking for feedback from us.

There are a load of hits for BPS when I search the forum so it’s a bit overwhelming as I don’t have enough energy to go through everything and put together something well researched and watertight as I’d like to. If anyone can point me in the direction of a good thread or two on here, or article elsewhere, that might give me a good and more manageable overview I’d really appreciate it?

Unfortunately most of the hits for "BPS" will be for "biopsychosocial" (which many on S4ME use to refer to the biopsychosocial model of ME/CFS and also as a general term for psychosomatic-friendly practitioners and bodies, rather than this BPS: the British Psychological Society, the representative body for psychologists in the UK founded in 1901). There is a tag for the British Psychological Society but there are few threads using that tag; doing a Google search for:

site:s4me.info "British Psychological Society"

returns more useful results if you're interested in the history pwME have with them. I wouldn't worry over-much about getting every word watertight or using up precious energy doing a lot of background research as this survey's being co-produced with both Action for ME and the ME Association. It's important that they hear patients' voices but they will probably get a range of different answers and opinions from pwME.

Just to mention as well that for this survey, like others using Google Forms: if you're logged in to a Google account it should save your answers as you progress through the pages, so you can more easily spend some time thinking about and reflecting on your answers before submitting it.

 

[RainbowCloud]

Thank you so much @Nightsong that’s really helpful!

I think because of the acronym the two have merged in my mind and I mistakenly thought the British Psychological Society was linked to the biopsychosocial model. Seems daft now!

Bit less of a dramatic shift than the proponents of the biopsychosocial model asking for feedback then… !

Nonetheless I’m glad the community is being asked for feedback from any organisation – it shows they truly want to get it right.

Thanks again for your help!

 

[Joan Crawford]

This is a fantastic initiative, I hope it will help to ensure that there is safe professional psychological support for people with ME/CFS and similar conditions who want it. It would be wonderful to have a good resource to direct people to.

Great to see the process includes lots of consultation and involves people with first hand experience of ME/CFS.

Thanks @Hutan
We are including a lot of pwME and experience of caring pwME.
The BPS expressions of interest process generated a good number of people keen to be involved. Many with ME themselves. Also, clinical leads of NHS services too.
We also have support and enthusiasm from across all divisions of the BPS (Clinical, Counselling, Occupational, Educational, Neuropsychological etc and including psychologists working with children and young people and so forth).

 

[bobbler]

Thank you so much @Nightsong that’s really helpful!

I think because of the acronym the two have merged in my mind and I mistakenly thought the British Psychological Society was linked to the biopsychosocial model. Seems daft now!

Bit less of a dramatic shift than the proponents of the biopsychosocial model asking for feedback then… !

Nonetheless I’m glad the community is being asked for feedback from any organisation – it shows they truly want to get it right.

Thanks again for your help!

It’s not daft at all, the acronym we’ve used for psychosomatic being the same as thus has been something I’ve been conscious of for a while, it just happened to be that no one needed to talk about the British psychological society that much. So this is an issue that’s been a bit of a sitter that someone might reasonably assume that’s what was being talked about when that acronym used.

 

[JemPD]

Unfortunately most of the hits for "BPS" will be for "biopsychosocial" (which many on S4ME use to refer to the biopsychosocial model of ME/CFS and also as a general term for psychosomatic-friendly practitioners and bodies, rather than this BPS: the British Psychological Society, the representative body for psychologists in the UK founded in 1901). There is a tag for the British Psychological Society but there are few threads using that tag; doing a Google search for:

site:s4me.info "British Psychological Society"

returns more useful results if you're interested in the history pwME have with them. I wouldn't worry over-much about getting every word watertight or using up precious energy doing a lot of background research as this survey's being co-produced with both Action for ME and the ME Association. It's important that they hear patients' voices but they will probably get a range of different answers and opinions from pwME.

Just to mention as well that for this survey, like others using Google Forms: if you're logged in to a Google account it should save your answers as you progress through the pages, so you can more easily spend some time thinking about and reflecting on your answers before submitting it.

Thinking about it, it might be a good idea to put a note in the OP @Nightsong - that BPS in this thread means British psychological society rather than biopsychosocial, just to prevent confusion & avoid anyone wasting precious energy.

Lol i imagine roughly every 5th post on S4 contains references to BPS, & its a 'shorthand' i'm afraid I always use to refer to the group of Biopsychosocial promoters/believers. I sometimes say 'CBT/GET fanclub', but just calling them the BPS is so easy.
Tts not going to be helpful if the British Psych Soc produce really good guidelines though, because we'll likely start calling them the BPS Guidelines...

 

[bobbler]

I know this is cross-over territory but (maybe it’s trauma from hearing bps being talked about ) I just thought about the following

terms that might be common-usage (I think incorrectly) in certain areas of healthcare can be really triggering because they seem like ‘hang-overs’ from having put ME/CFS under the old paradigm

self-neglect in particular strikes me as one where those saying it might justify it as correct for some technical reason to them (another debate I’d like to have on another thread)

firstly it’s wrong and secondly it’s bigotry to suggest we look like the great unwashed because we neglect ourselves when it’s a combination of disability and nowhere near the amount of support in timeframe we need it.

Given our tenacity to get the impossible done despite this tiny resource it’s damn insulting and a lack of respect to suggest the tasks we can’t stretch to in energy envelope vs priority list are self-neglect. They shouldn’t use the term for any other illness where they can’t physically either. It’s loaded to make someone feel guilty as if it’s them. How rude

there are probably others I haven’t thought of that might be inadvertently used but people mightnt realise they can be ‘loaded’ due to history for us. I say that to suggest it should be warned not to use them, certainly not to question the person ‘why are they so sensitive to that’ of course

another key thing is that those offering psych support need to believe and get as true just how genuinely abusive people really are behind closed doors to people like us when they think they can get away with it because people won’t believe it , not judge them, might assume we are exaggerating. Ie what people are like when they can get away with it and when tropes incite people to be horrid to us

It’s true I was staggered how when i became more ill people who’d been behaved before turned into monsters when they thought they could get away with it/would never need anything from me. and how bullied I’ve been because almost everyone near me who had a bad day and felt sorry for themselves then targeted me as a freebie in a literal ‘kick the dog’ sense.

I would hate people going thru hell to be disbelieved. Or worse it be twisted on them as if they are more sensitive rather than more stoical than most. Worse 'maybe it was something they did' to annoy that person or put their foot it in. It’s just they get way more crap and that daily onslaught is v different to the normal persons experience of one every six months you come across some person shouting at you for no reason other than their own issues.

another useful point is to be aware we are energy limited but there is a chosen bigotry by healthy people who feel sorry for themselves that ‘we aren’t busy’ which astounds me as it makes no sense if they stopped to think of medical related ‘work’ and how much harder everything is if you can’t just nip ti a shop to grab something when you fancy. But it gives them justification in themselves to put upon you timing wise and leaving you to finish off tasks etc (I’ve realised how lazy some intuitively are) . And that is disability bigotry not ableism because they assume ill people have less to do.

the idea someone would have to fight to have these truths just accepted and the energy of all that…

 

[Keela Too]

I have looked at the first couple of pages of the survey. It's 8 pages with several questions on the pages I looked at. There are open ended questions which I might answer in a sentence or 2, or, if I have the energy, it would be possible to say a lot.

This is going to take some thinking about.

I said a lot in the first free response space, and then rather dried up, having put all my things in there without reading ahead first !!

 

[JemPD]

Given our tenacity to get the impossible done despite this tiny resource it’s damn insulting and a lack of respect to suggest the tasks we can’t stretch to in energy envelope vs priority list are self-neglect. They shouldn’t use the term for any other illness where they can’t physically either. It’s loaded to make someone feel guilty as if it’s them. How rude

Yes its something i find particularly painful this. Only those who knew me from 25yrs ago, know how i always would be smartly dressed and immaculate hair nails etc, thats just how i was raised to be. It upsets me when people think I, and my home, look the way they do by choice, and then if they dont judge me they assume i must have severe depression

they assume ill people have less to do.

oh, wow this is so true... I cant think of the times people think i am just sitting here 'twiddling my thumbs' so it doesnt matter if they are a little late, or dont decide until the day before which day they are coming, or just think they neednt give me any notice of something because after all i am just sitting around all day so what does it matter, it drives me bananas

 

[JemPD]

Does anyone know if you can go 'back' in the survey to modify previous answers. I know you can save progress if you're logged in. Or perhaps there might be a chance to see the survey questions beforehand so i can think them through before i start the survey? @Joan Crawford

 

[Sly Saint]

I like the concise but fairly accurate severity descriptions (particularly the moderate one which is nearly always wrong even tho' it concerns the largest 'subgroup' see Why are the majority of pwME rarely mentioned? | Science for ME (s4me.info))

Mild - able to care for self, do light domestic chores and probably in work or education but with reduced hours or leisure activities.

Moderate - reduced mobility, poor sleep, restricted in all activities of daily living, peaks and troughs in energy, probably not working or in education.

Severe - poor sleep, can carry out minimal daily tasks only, severe cognitive difficulties, often housebound, depend on a wheelchair for mobility

Very Severe - in bed all day and dependent on care, need help with hygiene and eating, very sensitive to sensory stimuli.

where did these particular descriptions come from @Joan Crawford

 

[bobbler]

[responding to a deleted post]

I think this is like physiosforme did great work particularly for people who ended up in front of a physio not for/'to treat' their ME, but because of other issues like a bad back, MSK, other health conditions and so on. And I'm hoping that similar to an underlying message for physios being 'don't take someone who came to you for their bad neck, and then because they mention to be gentle due to ME/CFS decide to put them throug GET whilst telling them they have false beliefs instead of treating them like a normal person needing help with their neck but that needs the following adjustments due to their comorbidity'

ie it is for all psychologists who everyone else can see should anything crop up they would find them or some form of therapy for whatever helpful. lots get 'sent' for things like work stress, but it could be bereavement or divorce or grief or depression, OCD and so on.

SO it seems right to me that this is absolutely the correct organisation to be making sure the membership are working to a correct understanding of it and aware of adjustments etc. I assume some of the basics are being aware of limitations of different severities , so certain types of therapies just wouldn't be suitable for someone with severe due to the cognitive load (CBT can be quite combative/assertive for example - people might end up just having to play along because they've reached exhaustion), people aren't being fussy if they specify timings, or can't do an hour's length.


My goodness on that note though, if it could eventually back-fill the 'take out the embedded stuff that isn't based on appropriate psychological guidelines for this condition (and shouldn't be being delivered by physios, OT, those not in a professional org for psych therapy anyway)' one day too that would be more than great. Noone should be allowed to embed anything psych into anything due to informed consent anyway - the 'nothing based on false beliefs' was supposed to basically be saying that not 'invent a new one so you can carry on embedding random re-psych-education' that's now not even based on an outdated, debunked model (just made up (!) I still don't know where eg clinic staff, BACME etc got the idea that they were entitled to do that/kidded themselves that wasn't what they were doing, it's mind-blowing)

 

[bobbler]

Yes its something i find particularly painful this. Only those who knew me from 25yrs ago, know how i always would be smartly dressed and immaculate hair nails etc, thats just how i was raised to be. It upsets me when people think I, and my home, look the way they do by choice, and then if they dont judge me they assume i must have severe depression

oh, wow this is so true... I cant think of the times people think i am just sitting here 'twiddling my thumbs' so it doesnt matter if they are a little late, or dont decide until the day before which day they are coming, or just think they neednt give me any notice of something because after all i am just sitting around all day so what does it matter, it drives me bananas

thanks you @JemPD I'm glad you can relate.

to be fair I was a bit of a tomboy in some ways, unless I was going out, but it wasn't self-neglect it was both not really suiting the manicured hairdo and back in the day doing a lot of sport. At work people used to say I looked put together, which was kind, but it wasn't to do with a lot of effort on the day just liking clothes and knowing what suited me. But there is no way I'd have thought a GP or home visit would require a dress up and would be in joggers on my days off - but I thought I looked good when those were reasonably fresh.

I remember a GP commenting on 'I can see you feel better as you've lipstick on, when you first came you were in your dressing gown' and being somewhat caught off guard - said dressing gown it took me a minute to realise must have been my cashmere coat (given I didn't own a dressing gown) along with my work outfit (vs jeans at that next appointment), and it was lip balm I'd bunged on because my lips were sore, that I might well have put on before that other appointment - it just happened to have some colour in it because I'd bought whatever the supermarket delivery sold. I found that utter misogyny or something that people were being taught, and a complete sign of how biased it was to seeing or remembering what they wanted to. Are they really taught to do that with people they never met before? What science!

I've seen or heard the term used, not intended to insult, just like it is a term meaning 'can't' not realising what they are saying, regarding me describing bad days and the list of what I can't do. I don't get PEM and 'self-neglect'. ANd that's the first time I've thought well we need to stop trying to get people to 'relate' by describing it to what might have been their worst illness of flu and start using the terms like I'm sure other medics have mentioned.

If PEM was only as bad as scraping thru flu - which I've had on top of ME and spent a day presenting at a conference in a different city in the freezing cold because its pi** easy compared to PEM but not 'painless' I'm just much harder than most healthy people who pity me - then of course I'd be scraping to do dinner if I was starving. SO the irony is that even if they 'get' what ME is then the terms they've been given, I'm assuming they use it for people on chemo or with bad MS otherwise it really does need to be banned, they then get required to use terms that make them both rude and wrong.

But I guess it works for healthy people who think back to when they had a newborn baby and 'had to self-neglect' as they couldn't shower or sleep when they wanted, and would have been fine with that term - but they don't realise that's because it meant something very different, like a badge of honour putting their child first... for a while. So maybe that's why they aren't 'getting' the implications of these terms. Like some poor old lady after an operation in hospital and noone pouring her water or helping with her meal, is that what those terms help cover-up?