Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

[Sasha]

Just coming belatedly to this thread. Stellar letter, @Trish!

I've pulled out quotes relating to how S4ME might contribute to better AfME materials going forward. I'm going to summarise it in my next post and make a suggestion for a way forward.

As part of our resources review, we will look at how we meaningfully consult on, test and gather feedback on new/revised resources, to ensure this process is fit for purpose and engages with a cross-section of the ME community. Should you or any of the forum members wish to input to this, we would welcome involvement.

I think we need to stay independent and be very careful about endorsing other organisations or letting them suggest S4ME approves particular projects or materials. Our committee has agreed to support some things.

Do people think we could potentially collaborate on a specific project, as long as it was understood from the outset that the S4ME name/logo would not be displayed on the material or in publicly-available descriptions of it, unless we were given time to put it to a vote after completion?

Another thing I think AfME should consider is asking for recommendations of existing resources such as some of Charles Shepherd's MEA resources. Cooperation where, for example, AfME endorses and recommends specific materials by others seems sensible to me.

Indeed. Might it be useful to send a brief message from the committee, thanking Sonya and reiterating that they're always welcome to post early-stage proposals for new materials or projects on the board?

I have just sent the following reply to Sonya Chowdhury:

[...] I suggest more co-operation, for example, between AfME and the MEA which has a wide range of useful materials written by Dr Charles Shepherd, some of which might be endorsed by AfME, with MEA agreement, and linked from your website, rather than both organisations needing to produce versions of the same thing.​

I had the following reply from Sonya on 14th September:

[...] We will be taking a different approach to this going forwards, linked with work we are undertaking to develop a new website (which will be launched next Spring ). We do naturally already have considerable involvement from people with lived experience across all aspects of the organisation in helping us with this content, especially with our membership.
​

While we don’t have capacity to set up and manage social media consultation on all of the new content from the wider community beyond those supporting members, we would be of course be very happy to include you or a colleague from S4ME in the group of people involved who bring lived experience support to our work. If you are interested, maybe you could let Josh know and he will be in touch in due course to follow up.

We are also engaged with MEA on a number of topics, and one of those is looking at how we can increase coordination while also offering the community, and particularly our members, the choice about where they go for support and information. Through the World ME Alliance, we are also exploring how to better align/endorse the varying publications and resources on a global basis to aid confidence and minimise unnecessary duplication.

I do wish [Sonya] saw the advantage of allowing S4ME to participate as a community, though. I wouldn't put myself up for a place on any consultation group, partly because I don't have the energy, but also because I'm afraid I might miss things. Some of our other members might have similar concerns.
It's so different when there are numerous pairs of sharp eyes on it, and there are people with a variety of skills, aptitudes and experience, and the process can include those who're severely ill.

As so often I think @Kitty has put it well. I agree. [...] Pleased with how Sonya responded. We need to find a way for a group to have input rather than it falling on an individual (a bit like some of the suggestions for patient participation in research). I understand this is hard.

 

[Trish]

I'm going to summarise it in my next post and make a suggestion for a way forward.

Perhaps you might want to wait for the committee to get the project for producing S4ME resources launched, which is imminent, before suggesting more for us to do. Let's see how that goes.

 

[Sasha]

Perhaps you might want to wait for the committee to get the project for producing S4ME resources launched, which is imminent, before suggesting more for us to do. Let's see how that goes.

I thought it might usefully feed in but I'll hang fire and will PM you (a bit later).

 

[Trish]

Just coming belatedly to this thread. Stellar letter, @Trish!

I've pulled out quotes relating to how S4ME might contribute to better AfME materials going forward. I'm going to summarise it in my next post and make a suggestion for a way forward.

Sonya has made it clear to us that if someone wants to contribute to review of AfME materials, the best option is to put themselves forward to be on AfME's own patient advisory group. AfME have neither the staff time nor the inclination to run a separate advisory process on their drafts via S4ME
So I'm not clear what way forward there might be.

 

[Sasha]

Sonya has made it clear to us that if someone wants to contribute to review of AfME materials, the best option is to put themselves forward to be on AfME's own patient advisory group. AfME have neither the staff time nor the inclination to run a separate advisory process on their drafts via S4ME

So I'm not clear what way forward there might be.

Sonya didn't specify how their review process works, but an obvious way would be for a staff member to write the first draft of each document and email it to each PwME in their consultation group for individual, written feedback.

As you say, any individual can approach AfME and ask to be part of the process. But as @Kitty says, it would be daunting for just a single person from S4ME to feel responsible for providing informed feedback that's based on science and knowing the lie of the land - a small group here could do a better and more confident job of providing solid advice. They could pre-review AfME materials in confidence on a private subforum, and send their collective comments as a single document. This would fit with AfME's standard process, if it is what I think it is.

None of this would imply any official S4ME endorsement, and so wouldn't need to involve the committee. The group would simply be using their private S4ME subforum as a chatroom. They would no more represent S4ME than a bunch of people who rent a room in a pub to discuss gardening would represent the pub.

This would allow AfME better feedback than relying on patients who only have their lived experience to draw on.

I think your letter to Sonya was terrific and that it has opened up a very win-win opportunity. If anyone likes the idea of taking this forward, and there's no objection from the committee, perhaps a first step would be to see if there are people here interested in forming a small group and if there are, approaching Sonya to ask about the consultation process and whether what I'm suggesting would be suitable.

Anyway, just an idea. Happy for it to be parked if I'm wrong about the committee not needing to think about it (I don't want to even make them discuss whether they need to think about it, because they are clearly overloaded!).

 

[Ash]

Sonya didn't specify how their review process works, but an obvious way would be for a staff member to write the first draft of each document and email it to each PwME in their consultation group for individual, written feedback.

As you say, any individual can approach AfME and ask to be part of the process. But as @Kitty says, it would be daunting for just a single person from S4ME to feel responsible for providing informed feedback that's based on science and knowing the lie of the land - a small group here could do a better and more confident job of providing solid advice. They could pre-review AfME materials in confidence on a private subforum, and send their collective comments as a single document. This would fit with AfME's standard process, if it is what I think it is.

None of this would imply any official S4ME endorsement, and so wouldn't need to involve the committee. The group would simply be using their private S4ME subforum as a chatroom. They would no more represent S4ME than a bunch of people who rent a room in a pub to discuss gardening would represent the pub.

This would allow AfME better feedback than relying on patients who only have their lived experience to draw on.

I think your letter to Sonya was terrific and that it has opened up a very win-win opportunity. If anyone likes the idea of taking this forward, and there's no objection from the committee, perhaps a first step would be to see if there are people here interested in forming a small group and if there are, approaching Sonya to ask about the consultation process and whether what I'm suggesting would be suitable.

Anyway, just an idea. Happy for it to be parked if I'm wrong about the committee not needing to think about it (I don't want to even make them discuss whether they need to think about it, because they are clearly overloaded!).

You’re not wrong @Sasha that AfME could benefit some help, given they’d not managed to review and update their materials or associations in years clearly they do.

But as @Trish & @Jonathan Edwards have mentioned in various places AfME have made it quite plain that they don’t want it to come from S4ME as an organisation itself, nor from a group contribution coming from people on S4ME.

Thats the boundary that AFME are putting around outside involvement with resources that go out under their own name.

 

[Sasha]

You’re not wrong @Sasha that AfME could benefit some help, given they’d not managed to review and update their materials or associations in years clearly they do.

But as @Trish & @Jonathan Edwards have mentioned in various places AfME have made it quite plain that they don’t want it to come from S4ME as an organisation itself, nor from a group contribution coming from people on S4ME.

Can you point me to where they have said that they don't want a group contribution coming from people on S4ME? I'd be a bit surprised if they had ruled out contributions from a group simply using S4ME as a chatroom.

 

[Ash]

Can you point me to where they have said that they don't want a group contribution coming from people on S4ME? I'd be a bit surprised if they had ruled out contributions from a group simply using S4ME as a chatroom.

The following is all from memory because I can’t re read the letter so apologies if I am misremembering or misrepresenting.

It was in the reply to @Trish from Sonya. In the context of Trish saying that people from S4ME would happy look at materials and give feedback and Sonia replying that if anyone wanted to contribute they could do so but as individuals via existing channels within AfME. I take this to mean help was offered and refused.

Especially as JE met with Sonia and said that this was a good meeting, that the door might be open for collaboration. But later said (don’t know which post I am afraid) something about how he’d offered closer involvement, but it was clear that AfME didn’t see themselves as being aligned in this way.

Again from memory not saying this was what was exactly said by any of the parties involved, just that this was the broader impression I had after reading what everybody said, which was also a little while ago so not fresh in my mind.

I also felt that in the thread we were expressing some disappointment about precisely this rejection of help.

Not because anyone is looking for extra work but because we feel like AfME haven’t been reviewing their own content sufficiently and that this is negatively affecting all of us as people with ME.

Additionally as @Kitty says, because as pwME it’s particularly difficult for us to think things through or notice things by ourselves so this effectively bars access to meaningful participation for many of us.

But since S4ME is now approaching the issue of materials by beginning a project of fact sheets, hopefully AfME will only best these rather than lagging behind.

Or at least pwME will have a choice on what to read or share.

 

[Kitty]

it was clear that AfME didn’t see themselves as being aligned in this way.

Maybe they don't realise how hard it would be to get agreement on a three-word motto here, let alone the canonical version of a consultation response!

A response they'd be free to largely ignore, pick the odd phrase from, or use as part of the framework if it chimes with what everyone else says. It's their publication, they get to decide.

 

[Ash]

Maybe they don't realise how hard it would be to get agreement on a three-word motto here, let alone the canonical version of a consultation response!

A response they'd be free to largely ignore, pick the odd phrase from, or use as part of the framework if it chimes with what everyone else says. It's their publication, they get to decide.

I’m sure they do realise!
Yes exactly it is.

 

[Sasha]

The following is all from memory because I can’t re read the letter so apologies if I am misremembering or misrepresenting.

It was in the reply to @Trish from Sonya. In the context of Trish saying that people from S4ME would happy look at materials and give feedback and Sonia replying that if anyone wanted to contribute they could do so but as individuals via existing channels within AfME. I take this to mean help was offered and refused.

Thanks, @Ash. I quoted the relevant bits of Sonya's letters to Trish upthread, here, and I don't see anything that would rule out what I'm suggesting. Sonya was inviting individuals to take part but I think this idea of a group acting like an individual and not officially representing the forum might be acceptable to AfME.

 

[Hutan]

@Sasha, we did put out informal feelers to Sonya about a closer association with AfME and/or WMEA, and we got the message that AfME is not interested. They seem happy that we are doing our thing, they aren't opposed to us. My impression of what was reported back was that they just don't see a benefit in a closer relationship with us at this time.

Sonya did seem pretty clear that anyone interested in working on AfME documents would be best to contact AfME and work within AFME's current structures.

Perhaps it will be worth trying again sometime.

 

[Sasha]

@Sasha, we did put out informal feelers to Sonya about a closer association with AfME and/or WMEA, and we got the message that AfME is not interested. They seem happy that we are doing our thing, they aren't opposed to us. My impression of what was reported back was that they just don't see a benefit in a closer relationship with us at this time.

Sonya did seem pretty clear that anyone interested in working on AfME documents would be best to contact AfME and work within AFME's current structures.

Perhaps it will be worth trying again sometime.

Thanks, Hutan, but what I'm suggesting isn't any sort of association between S4ME and AfME. I'm suggesting that if a bunch of forum members wanted to work together to have input into improving AfME's materials, they could approach AfME and ask if they could be treated as an individual who would send back comments on a draft in a single document. They could just as easily be meeting in a pub to discuss this. S4ME just happens to be providing the chat facility that would allow them to do this.

 

[Lou B Lou]

@Ash wrote:
" .... we feel like AfME haven’t been reviewing their own content sufficiently and that this is negatively affecting all of us as people with ME".

And has done for decades. Personally I think AFME too easily slip back into their old comfy patterns.
And that while Sonia's reply to Trish is good, it's not enough to guarantee that AFME's decisions and material will all be brought up to date, with no more pandering to any part of BPS ideology or culture.
.

 

[Ash]

@Ash wrote:
" .... we feel like AfME haven’t been reviewing their own content sufficiently and that this is negatively affecting all of us as people with ME".

And has done for decades. Personally I think AFME too easily slip back into their old comfy patterns.
And that while Sonia's reply to Trish is good, it's not enough to guarantee that AFME's decisions and material will all be brought up to date, with no more pandering to any part of BPS ideology or culture.
.

Yes.
No, it isn’t.

 

[MrMagoo]

I was reassured by Sonia’s letter. I got the impression that whatever slack gatekeeping had been happening in the past was not going to be allowed going forward.
I don’t think it’s too much to ask that our charities consider our needs before issuing guidance. I know in practice that isn’t happening, but it’s been pointed out to them and only AfME seemed contrite, and committed to improvement.

 

[Ash]

I was reassured by Sonia’s letter. I got the impression that whatever slack gatekeeping had been happening in the past was not going to be allowed going forward.
I don’t think it’s too much to ask that our charities consider our needs before issuing guidance. I know in practice that isn’t happening, but it’s been pointed out to them and only AfME seemed contrite, and committed to improvement.

Yes I agree this was a very promising start.

But it’s also true that we don’t know what will happen until it happens. With the best of intentions other priorities may overtake the in house literature review.

Additionally long before this interaction with S4ME a great many people with ME and their carers have requested changes from AfME in relation to BPS associations and literature that is influenced by these associations. Without success.