United Kingdom: Action for ME (AfME) news

[MrMagoo]

Moved post

This afternoon was Action for ME's AGM. Chaired by Roger Siddle with the report on A4ME's work being given by Sonia.
Despite it being in my diary for several weeks, I forgot about it so missed the first half hour of Sonia's zoom report. An episode of ME and mast cell issues intervened.

Sonia's report was presented quickly and at the end, she answered questions submitted beforehand, and at the beginning of the meeting. What came over clearly was her emphasis on A4ME not being involved with Peter Gladwell. She said their logo was used to advertise the work ( with Tyson I presume) but they were not involved with it. Very firmly.

She did refer to having first hand experience of seeing someone with ME, and said a description of pem that had been submitted did not describe the severity well enough.

Lots of questions about research. I will try to zoom attend next year's meeting. The range of work being done by A4ME was wider than I remember. It seemed a very busy organisation.

Thanks for the update. Even the one takeaway “not involved with Peter Gladwell” is good to have.

 

[Andy]

Does anyone know if the recording is up yet? I haven't been able to find it.

https://www.actionforme.org.uk/news/genetics-centre-of-excellence-webinar-recording/

Direct YouTube link:

https://youtu.be/tAt9bwMfV4c?si=5OYB387sJe1d0L5R

 

[wigglethemouse]

Thanks for posting the video @Andy

I like the approach Action for ME and their collaborators are taking.
1. Lots of PPI.
2. Collaboration.
3. Working with the funding agencies to see what kind of proposals are wanted.
4. Submitting proposals that meet the funders wish.
5. Providing videos to let us know what they are doing.

From my understanding they've submitted a proposal to try and build up a resource for collaboration (UK, Europe, US). This would include a large PPI resource group from which researchers can pick, and a pool of patients, with the aim of making it easier for researchers who have never studied ME to join the field. i.e. The primary goal of bringing in new reasearchers and making it easier for them to build quality studies with patient involvement and then submit grants for those projects.

 

[Ravn]

Around 20min into the video Simon Carding talks about something he calls Hinxton consensus for clinical trial outcomes. I don't think this has been discussed here? But it sounds potentially important?
I haven't listened to the whole thing yet so don't know if there's more on the topic later

Another recent… Activity came about from the last colloquium that was held in June this year.
20:19
when a lot of clinicians and researchers got together to try and develop a consensus criteria
20:26
for undertaking clinical trials. And in particular, we're trying to develop what's called an outcome index value or measure
20:33
which has been used extensively in rheumatoid arthritis clinical trials. to accurately assess the impact of an intervention.
20:41
And we're hoping that if we reach this consensus, then clinical trials, wherever they are undertaken. will adopt the same measures as part of their trial.
20:51
Things we're looking at currently are the core measures objectivist, subjective secondary measures and also categorizing patients
20:59
to put the right patient in the right trial to get the maximum benefit from the intervention. And I chair this with the clinician based in Denmark.
21:07
And the US arm of this is chaired by Nancy Climax. and Ian Lipkin. So far, we've had three meetings. We have another one planned.

They're already using (parts of?) these Hinxton criteria for their FMT trial

And we're incorporating various objective outcome measures, assessing physical activity.
22:34
functional capacity, sleep. cognitive function using neuron and brain imaging as well in a subset of patients.

 

[Jonathan Edwards]

I don't think this has been discussed here? But it sounds potentially important?

Well, actually, it has been lifted directly from our discussions here in 2017-18 - without apparently any recognition of that. If you look back you will find the thread where we talked about using RA scoring systems to combine objective and subjective measures.

The real issue is whether or not a committee trying to develop this for ME/CFS understands the logic behind it, which is subtle. There are two sort of composite score in RA, a good sort and a bad sort. Committees tend to love the bad sort because most people don't understand the logic.

I don't know who Hinxton is.

Maybe its Hinxton Conference Centre, which is half way to Norwich!

 

[Jonathan Edwards]

Yes, IiME had their last conference at Hinxton.

 

[Sly Saint]

Well, actually, it has been lifted directly from our discussions here in 2017-18 - without apparently any recognition of that. If you look back you will find the thread where we talked about using RA scoring systems to combine objective and subjective measures.

which thread? There are several where you mention the ACR improvement grading or the ACR20.

 

[Dolphin]

https://twitter.com/user/status/1854101677449609409

 

[Jonathan Edwards]

which thread? There are several where you mention the ACR improvement grading or the ACR20.

Several threads but there was one on outcome measures specifically where we talked about the logic behind objective plus subjective multiple threshold indices.

I think I put some of that stuff into a publication at some point. I discussed it in relation to potential rituximab trials at the time when we decided not to pursue that but Simon Carding wanted to go ahead. But it is all a long time ago.

 

[Ravn]

Around 20min into the video Simon Carding talks about something he calls Hinxton consensus for clinical trial outcomes. I don't think this has been discussed here? But it sounds potentially important?

Well, actually, it has been lifted directly from our discussions here in 2017-18 - without apparently any recognition of that. If you look back you will find the thread where we talked about using RA scoring systems to combine objective and subjective measures.

What I meant was that I can't find discussion about this particular group's Hinxton criteria which makes me wonder how much or what sort of patient involvement there was

I do recall us discussing the principle of combining objective and subjective measures along the RA model. Here's hoping Carding's group did read that discussion, too, and made sensible use of it. The list of things they're measuring in their FMT trial suggests the criteria do contain some good elements - for all I know they could even be excellent - but I'd feel more confident if they'd put a draft out to the wider community for feedback first

The aim appears to be to get them widely adopted, so much more reason to make sure they really are as good as they can be

 

[Jonathan Edwards]

What I meant was that I can't find discussion about this particular group's Hinxton criteria which makes me wonder how much or what sort of patient involvement there was

The criteria were presumably discussed at an IiME colloquium meeting - which does not include patients, although there have been one or two patient advocates involved in the past.

I personally do not put much store by committee decisions on methodology. The optimum methodology is different for every trial, depending both on what questions you are trying to ask and the practicalities of blinding etc. Fluge and Mella did a perfectly good trial, when they had the option of blinding, with their own measures and everyone has accepted it. But the well known researchers in the field will inevitably try to come to a consensus and IiME colloquia tend to attract the usual suspects. Whether anybody other than Carding thinks this 'Hinxton consensus' was significant I wouldn't now.

Whether or not patient input helps I don't know. The emphasis here has been on objective measures but there has been pressure from patient advocates in the past to focus on subjective 'lived experience' measures.

 

[Ravn]

Have listened some more of the video. Worth a look for advocates. Not as exciting as videos about the latest research findings but, and arguably more important, it has some thoughtful discussion about how to build stronger foundations and capacity to enable future research of better quality. Three key themes

1) An ambitious MRC application is underway to try to get funding to build a much better ecosystem for ME research with improved infrastructure, fewer barriers and more support especially for researchers new to the field, also talk of a virtual centre of excellence (also as yet unfunded)

-> Fingers and toes crossed this comes off, it's a much needed initiative. Good, too, to see some broad strategic thinking. And that Chris Ponting is clearly on a mission to leverage all he possibly can from DecodeME

2) Possibly linked to the above(?) there's a project of creating a pool of PPI volunteers for researchers to draw on

-> Mixed feelings about this. PPI with expert patients can work really well as demonstrated by DecodeME. But I have reservations. One, there are too few expert patients to carry the load and those there are may understandably be inclined to want to work with trusted researchers rather than with the sort of researchers who most need expert patient input but who'll also be the least inclined to be guided by it. Two, there's a risk of PPI being implemented in a tokenistic way and that could be worse than no PPI at all. But if funders increasingly demand PPI, as appears to be the current trend, then creating a formal structure for a pool of PPI volunteers may not be a bad idea. People signing up for this sort of commitment may be more motivated to upskill themselves to become effective and representative contributors, and training to that effect could be included in the scheme (I don't think training was mentioned in the video though)

3) Discussion about the need for replication studies, and about ways to make more of them happen

-> Replication or lack thereof is one of my hobby horses so was pleased to see this being discussed with a view to finding solutions. As an example of such a study Claire Francis Research Fellowship recipient Audrey briefly presented the replication attempt of the something-in-the-blood findings (ongoing and no results yet). It sounded like a well designed study and Audrey came across really well

 

[bobbler]

Have listened some more of the video. Worth a look for advocates. Not as exciting as videos about the latest research findings but, and arguably more important, it has some thoughtful discussion about how to build stronger foundations and capacity to enable future research of better quality. Three key themes

1) An ambitious MRC application is underway to try to get funding to build a much better ecosystem for ME research with improved infrastructure, fewer barriers and more support especially for researchers new to the field, also talk of a virtual centre of excellence (also as yet unfunded)

-> Fingers and toes crossed this comes off, it's a much needed initiative. Good, too, to see some broad strategic thinking. And that Chris Ponting is clearly on a mission to leverage all he possibly can from DecodeME

2) Possibly linked to the above(?) there's a project of creating a pool of PPI volunteers for researchers to draw on

-> Mixed feelings about this. PPI with expert patients can work really well as demonstrated by DecodeME. But I have reservations. One, there are too few expert patients to carry the load and those there are may understandably be inclined to want to work with trusted researchers rather than with the sort of researchers who most need expert patient input but who'll also be the least inclined to be guided by it. Two, there's a risk of PPI being implemented in a tokenistic way and that could be worse than no PPI at all. But if funders increasingly demand PPI, as appears to be the current trend, then creating a formal structure for a pool of PPI volunteers may not be a bad idea. People signing up for this sort of commitment may be more motivated to upskill themselves to become effective and representative contributors, and training to that effect could be included in the scheme (I don't think training was mentioned in the video though)

3) Discussion about the need for replication studies, and about ways to make more of them happen

-> Replication or lack thereof is one of my hobby horses so was pleased to see this being discussed with a view to finding solutions. As an example of such a study Claire Francis Research Fellowship recipient Audrey briefly presented the replication attempt of the something-in-the-blood findings (ongoing and no results yet). It sounded like a well designed study and Audrey came across really well

Thanks for flagging. Agree with your mixed points on PPI. Agree this and the other areas are good ones for them to work on.

This is such an important and fundamental area that someone is starting to put lines in the sand on.

The Nice analysis of the therapist-delivered in particular noted there is a major issue with quality of which one major measure they seem to fail on was indeed their samples. So I absolutely think it is about time someone did report on and keep a record of projects who do good things in making it possible to have as good a sample as possible and make the most of them without wasting health vs those who one couldn't recommend was safe for those who were severe, moderate, maybe even mild to be able to participate in.

It might actually even up the playing field because currently not only are survey-based with no controls dirt cheap because of these two elements being cheap but because of reduced costs on recruitment and method/time taken. If those who do things right to allow pwme to participate well and safely need to be able to justify this in funding too.


And here's a question for an example: if researchers were wanting to look into something to do with those at the top of the banking sector, busy judges/top lawyers, heads of industry then of course the methodology would pass muster in meeting both doability and not wasting their time or energy, using leading or ambiguous questions etc (and indeed allowing their admin to help where it didn't need their experience) and in not having expectation gaps re promises made. At the other end there is the cannon-fodder attitude which is why you get so many students used as subjects.

You are right that PPI could be powerful in breaking this issue, vs could have the same issues and be used to lend an air of legitimacy if used inappropriately. If a researcher has been used to being able to run with the latter (as long as they have fatigue, use own clinic 'grads') the receptiveness to someone taking PPI seriously realising they have been wheeled in as the severe person or person still working etc could lead to things that protections would be useful for.


Perhaps a formal PPI structure provides more opportunities hopefully to also tackle this with a charter (or ideas for what works for different groups - as they could indeed collect experience on issues and good practice over time) and ideally some sort of oversight who can ensure/protect these promises are what is actually implemented on the ground, and patients aren't having to be inadvertently harmed/put in these situations in order to then try and report it afterwards and be not believed.

In fact even if they don't have advocates just PPI volunteers being able to feed back such issues and be heard is also important to drive change forward. And maybe the charity asking the important questions before recruitment re: accessibility as a quid pro quo for using the PPI register.

It could be powerful if this was run with an eye to those who are being funded 'in the name of' having a third party noting any issues, and are more generally expected to adapt and learn to be more appropriate. But an issue if politics get in the way


It struck me with what you flagged that potentially what could also be good is advocates to act as support (if/as needed) for those who are patients who are experienced and 'qualified' (researchers need to start learning about appropriate matches too, you can't have only mild patients and expect it represents anything but that niche vs the spectrum). So that they are protected from having to fight for the adjustments that should be there if they want to claim they've 'involved' real patients.

And I'm sure there are 'themes' that will crop up on problems that tend to be used that inadvertently silence opportunity for certain things to be said etc. or tend to wheedle or manage out certain input. Which are easier to tackle when you can speak on it being 'a pattern' rather than it just being one person in one project etc.


But I know we are then getting into even more complicated territory..

 

[Haveyoutriedyoga]

if funders increasingly demand PPI, as appears to be the current trend, then creating a formal structure for a pool of PPI volunteers may not be a bad idea. People signing up for this sort of commitment may be more motivated to upskill themselves to become effective and representative contributors, and training to that effect could be included in the scheme (I don't think training was mentioned in the video though)

There are organisations that do this (as you may already know), often condition-specific or illness area specific, such as mental health. An example I can think of is one for mental health, they recruit and train a range of expert patients of varying demographics who have used the mental health system a lot, so have lots of experience.

The organisation provides training, ongoing support, manages contracts with whatever body is looking for input, and crucially, is independent.

 

[Haveyoutriedyoga]

The thing with mental health though is that there are NICE agreed treatment approaches.

Whether those treatments are based on sound evidence and are effective is beyond the scope of my comment!

 

[InitialConditions]

AfME will soon cease social media activity on X. https://www.actionforme.org.uk/news/our-use-of-x/

Interestingly, this seems to be partly due to their having to respond to criticism from more vocal patients on X. That is my reading anyway. From the statement:
"A large portion of our Marketing & Communication team’s time (two staff working the equivalent of 1.4 full-time hours) is taken up monitoring X and engaging with issues that arise on it. Often, these conversations arise through inaccurate, or second/third-hand information being shared and very quickly becoming a large issue. This further drains capacity from the team due to the need to manage our organisational response."

 

[Lou B Lou]

The timing of AFME removing itself from twitter/X coincides with ME patients/advocates insisting that AFME takes severe ME seriously, that AFME does not just cater to mildly ill patients, that AFME does something about creating/providing legal advocates/representation to severe patients who are mistreated in hospital, or threatened with being sectioned, or who are actually sectioned. Also astute pwme have been challenging AFME's promotion of a problematic Care and Support Plan Template.


20 years ago AFME told pwme who told AFME they needed legal representation/advocacy - AFME asked if the pwme do relaxation, because what the pwme were going through sounded "stressfuuuuul". The reality that pwme could need legal representation/advocacy was nowhere on AFME's radar decades ago and still isn't.


Edit add:
In 2024 pwme/advocates had to hold AFME's feet to the fire to get them to finally drop their reliance on Peter Gladwell and the Bristol Clinic (thanks Trish!). Also astute pwme/advocates concerns about AFME's promotion of a problematic Care and Support Plan Template have still not been properly responded to by AFME.


Edit add
Again 20 years ago when pwme asked AFME why they never state how extreme severe ME is, and how badly severe patients are treated - AFME responded that spelling it out could "frighten newly diagnosed patients".

AFME infantilises their members, members of the charity and social media members. They always have done.

.

 

[InitialConditions]

The timing of AFME removing itself from twitter/X coincides with ME patients/advocates insisting that AFME takes severe ME seriously, that AFME does not just cater to mildly ill patients, that AFME does something about creating/providing legal advocates/representation to severe patients who are mistreated in hospital, or threatened with being sectioned, or who are actually sectioned. Also astute pwme have been challenging AFME's


20 years ago AFME told pwme who told AFME they needed legal representation/advocacy - AFME asked if the pwme do relaxation, because what the pwme were going through sounded "stressfuuuuul". The reality that pwme could need legal representation/advocacy was nowhere on AFME's radar decades ago and still isn't.


In 2024 pwme/advocates had to hold AFME's feet to the fire to get them to finally drop their reliance on Peter Gladwell and the Bristol Clinic (thanks Trish!). Also astute pwme/advocates concerns about AFME's promotion of a problematic Care and Support Plan Template have still not been properly responded to by AFME.



AFME infantilises their members, members of the charity and social media members. They always have done.

.

Agree. They know what they're doing; they are bored of having to engage with some of the more vocal/organised patient advocates, who are largely on X (and here).

 

[Nightsong]

So they are abandoning X (where they have 13.3k followers, second only to Facebook where they have 23k) in favour of Instagram (5670 followers) and Threads (a mere 1001 followers). Is there any evidence that they will be able to attract significantly more followers on these platforms?

And why the focus on Threads? The exiles from X are heading principally to Bluesky, where AfME doesn't have a presence at all. If this were genuinely values-driven, surely that would be their next port of call?

 

[Lou B Lou]

Thank you for the figures @Nightsong! Hope you don't mind but I used them in my post to AFME on their Facebook on this subject.

To AFME Facebook (A bit caustic I'm afraid. But decades of trying to engage with AFME only to be blocked by evasiveness or 'niceness' leaves one without much patience):


'If you, Action for ME , want to reach as many people as possible - then why are you abandoning Twitter/X where you have 13.3k followers (!) in favour of focusing on Instagram (where you have only 5,670 followers) and Threads (where you have a mere 1,001 followers) ????

What you really mean is you want to avoid the valid criticism of your charity's decisions from experienced, informed and astute ME sufferers who challenge you, primarily on Twitter/X.

In your courting of GenZ, you appear to be abandoning/avoiding the massively informed and astute Gens Previous who have decades of knowledge/experience of ME AND have been active in advocacy for decades.

Why are you avoiding engaging with those highly informed/experienced pwme/advocates' criticism of AFME policies and inactions?'

'As Katy B said, you, Action for ME, made the decision to abandon Twitter/X without any consultation with the many thousands of ME sufferers on Twitter/X who will be silenced by your decision.

And as you (AFME) are acting as the contact between the APPG & the Parliamentary Champions for pwME, you are under an obligation to engage with as many pwme as you possibly can. Instead, you propose to close down a communication channel with 13,000 pwme!'


https://www.facebook.com/actionforme?locale=en_GB


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