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

[JemPD]

[quote of a now deleted post, asking if the project could be a ploy to sideline the NICE guidelines]
no i dont think so. Anything with @Joan Crawford involved would not be that... well not if she had any kind of control over the outcome at any rate!
I think @bobbler is right here

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.

 

[JemPD]

it took me a minute to realise must have been my cashmere coat (given I didn't own a dressing gown)

I can see you feel better as you've lipstick on

yes, i soon learned we are no longer allowed to wear lipstick if we want to be taken seriously as ill. Aparently ill people dont wear lipstick. The fact that my mother still put her lippy on while dying of cancer in hospital... thats allowed, thats having pride apparently but for us its saying we're ill but we're obviously not!

its pi** easy compared to PEM but not 'painless'

oh... preach it sister! amen!

 

[hotblack]

Does anyone know if you can go 'back' in the survey to modify previous answers.

I’ve just completed the shorter form for people who may be interested in providing feedback via focus groups or forums and that has an edit your responses button at the end so it looks like you can?

It looks like the URLs to edit are unique and include the token to access your data, so unfortunately I cannot share a link to help others edit their responses. It may be less easy to edit than I first thought, unless you’ve still got the window open or saved your personal edit URL which is shown after completing the form.

 

[Kitty]

Does anyone know if you can go 'back' in the survey to modify previous answers.

I wrote mine on a word processor document first, because it always takes me a while and I'm prone to closing browser windows by accident and losing stuff!

From memory, the three boxes where you give most of the freeform feedback are on one page, so it's easy to see the questions. They are:

1. What do you think should be included in the good practice guidelines on ME/CFS?

2. What do you want psychologists to understand about ME/CFS?

3. How should psychologists work with people who have ME/CFS?

There are other questions, but they're more specific and some are just tick boxes.

 

[JemPD]

Thats super helpful thanks @Kitty I also like to do it in word first. The boxes are always so small & i like to be able to see what i just said in last few sentences because i often forget!

 

[tornandfrayed]

Thank you for this @Joan Crawford. It took me a lot longer than 20 mins - it could have been as much as three hours in all, but it'll be shorter if you've never seen a psychologist or other therapist. I was at the end of a Covid infection, so even slower than usual. Anything to make change happen is very welcome, but a mammoth task.

 

[Joan Crawford]

Thank you for this @Joan Crawford. It took me a lot longer than 20 mins - it could have been as much as three hours in all, but it'll be shorter if you've never seen a psychologist or other therapist. I was at the end of a Covid infection, so even slower than usual. Anything to make change happen is very welcome, but a mammoth task.

Many thanks for completing it. Much appreciated

 

[Joan Crawford]

Thats super helpful thanks @Kitty I also like to do it in word first. The boxes are always so small & i like to be able to see what i just said in last few sentences because i often forget!

Many thanks

 

[Joan Crawford]

I wrote mine on a word processor document first, because it always takes me a while and I'm prone to closing browser windows by accident and losing stuff!

From memory, the three boxes where you give most of the freeform feedback are on one page, so it's easy to see the questions. They are:

1. What do you think should be included in the good practice guidelines on ME/CFS?

2. What do you want psychologists to understand about ME/CFS?

3. How should psychologists work with people who have ME/CFS?

There are other questions, but they're more specific and some are just tick boxes.

Many thanks for completing it

 

[Joan Crawford]

I’ve just completed the shorter form for people who may be interested in providing feedback via focus groups or forums and that has an edit your responses button at the end so it looks like you can?

It looks like the URLs to edit are unique and include the token to access your data, so unfortunately I cannot share a link to help others edit their responses. It may be less easy to edit than I first thought, unless you’ve still got the window open or saved your personal edit URL which is shown after completing the form.

Thanks for completing the survey

 

[Nightsong]

Apparently the BPS is now looking to produce Long COVID guidance as well:

The BPS hopes to bring together a group of members and experts by experience to work together to produce best practice guidelines about the physical, neurological and psychological effects of Long Covid.

It is particularly looking for applications to join the group from members who work with adults in clinical, health, neurological and counselling settings.

https://www.bps.org.uk/news/call-me...oin-working-group-produce-long-covid-guidance

 

[NelliePledge]

Will you be involved in the LC project @Joan Crawford

 

[RainbowCloud]

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.

Thanks @bobbler – I’ve been meaning to say that for an age but went down for a bit and only resurfacing now!

 

[Joan Crawford]

Will you be involved in the LC project @Joan Crawford

Our group developing the ME/CFS guidance have submitted an interest in this as there will be cross over both ways

 

[Joan Crawford]

We held our first Working Group meeting yesterday to cover background, process and setting up the smaller writing groups. We are go.

We have large group (18 psychologists involved in writing along with 2 EbE from AfME and MEA). We have other psychologists involved later in wider consultation group for reviewing drafts etc.

Many psychologists involved have lived experience and/or carer/family members with ME.

The survey has received more that 875 responses which is fantastic.

 

[Sean]

 

[hotblack]

Thanks for the update @Joan Crawford

 

[Nightsong]

Update on this project via MEA:

https://meassociation.org.uk/wp-content/uploads/2024/11/BPS-MECFS-Guidelines-Update-11.11.24.pdf

 

[Hutan]

That is looking pretty good.

While psychology cannot cure ME/CFS, people said psychologists can help people come to terms with, accept and manage their illness.

Our next step is to fully analyse the results of the whole survey. After having such an amazing response, we feel obligated to write a research paper and try to get our results published where health professionals will see it. Many of the survey responses have been very moving as people have shared difficult experiences. It is clear from many of the submissions that this is a topic which people feel strongly about and we wish to do you justice after you have spent your precious energy helping us.

Quotes from the survey:

“Any outcome measures (that rate the success of a programme) should not depend on the patient “improving physically”. It should be possible to judge an intervention as “successful” even if the patient ends up doing less. For example, it could be seen as successful if the patient is having fewer PEM set-backs, fewer problems with activities of daily living, and/or a more comfortable life.”

I thought that was interesting, because, it is true that for psychological services aimed at helping people cope, what matters is how the patient feels rather than the level of activity. Of course though, that could be seen to exempt psychological support from rigorous evaluation, getting back to the 'subjective outcomes in unblinded trials' problem. I hope the team will give some thought to how the utility of a psychological support service for ME/CFS should be evaluated.

There are things that can make research and even service evaluation better e.g. longer term followup, anonymising feedback, trying to include objective outcomes e.g. suicide rate in the following 5 years, customer satisfaction (e.g. would you recommend this service to others in your situation?). There are some patient reported outcomes that still could be somewhat objective if data is collected carefully such as whether the person has seriously thought about suicide in the last month, hours of PEM or consistency of daily activity levels, number of hours in a day with at least one positive (neutral/negative) personal interaction. I hope that there are some useful studies on the issue of rigorously evaluating the effectiveness of psychological support for other chronic diseases.

“Psychologists should provide belief, validation, and support, helping us endure the challenges of living with this illness. The focus should be on helping us navigate the emotional toll, such as self-blame, isolation, and grief, rather than attempting to fix or change the physical reality of ME/CFS.”

 

[Hutan]

Any news @Joan Crawford?