UK: Priority Setting Partnership for ME/CFS

I expect it's embeded in the information posted above somewhere but I can't work it out . . .

whose suggestion was it to involve the JLA at this point?

 

My thoughts on the idea of a PSP so far.

Initially, it seemed like something that should, on balance, be a positive thing. It looked like something that would provide a mechanism to collect the views of the wider patient population and to bring those views more officially into the research establishment 'environment' - it would be an 'official' list of what we consider important rather than what researchers and funders think is important (my main hope is that it would clearly show that patients wanted PEM to be investigated and that fatigue would be way down the list).

And for other conditions, perhaps it does work well at doing that.

However, and this is largely echoing Hutan's and Trish's posts above, my concerns are that clinicians are given an equal voice with patients and caregivers, and that non-clinician researchers are not allowed to vote on the priorities.

Given that, particularly in the UK, the vast majority of clinicians would seem to be more than happy working within the BPS framing of ME so are therefore largely clueless about what is actually important, their focus is likely to be on chronic fatigue, CBT and GET. For evidence to support this, see the paper discussed here, Monitoring treatment harm in [ME/CFS]: A freedom-of-information study of National Health Service specialist, 2019, McPhee et al, that shows that very little monitoring of harm happens with the fatigue clinics.

And excluding non-clinician researchers from even part of the process is problematic in that most of the interested researchers who have a clue aren't clinicians.

So, I'm still not totally against the concept of a PSP, but I believe that the ME research field is one that doesn't fit well with the James Lind Alliance's established framework for PSPs, and I would like to see the process adjusted to reflect the particular challenges that exist in the ME research field (which I'm sure the James Lind Alliance would not be keen on at all).

As things stand at the moment, I personally wouldn't be keen for the forum to be involved in a project that would give legitimacy to the views of the majority of clinicians in this country - however if we aren't involved in someway then we can't provide a counter to the BPSers, so I can still see a value in potentially being involved.

 

Yeah....

On the one hand if we don't participate our voices & opinions won't be heard and it also feeds into the patients being anti research meme.

On the other we don't want to be used to add authority to something that we don't agree with and otherwise put our names too. However, anyone can come here and see what we really think.....

It's just the phrase "better than being outside the tent looking in......." is running through the back of my mind. That's not helped us much in the past.

If we were to spend energy getting involved we need to be confident that our views and the value of our lived experience will be recognised and taken in board. They should be valued rather than tolerated as a sop to the patient community.

 

I think this is all maybe jumping the gun a bit. A lot hangs on what happens with the NICE guidelines.
If CBT and GET are removed as primary treatments then there will have to be a lot of changes made.

All this flurry to get these things in place now, along with the expansion in IAPT , plus the 'new' Cochrane review etc plus the announced delay for the new NICE guidelines all makes me even more suspicious about what might be going on behind the scenes.

 

F&Q now up.
I asked my own questions on AFME Facebook
There’s all the talk of involving patients and carers but were patients even asked if they want this, consulted on it beyond the tiny PAG and if they’re happy to see state funding calls delayed whilst the process follows through?

There’s also been concerns expressed that this process puts equal weight on clinicians point of view as patients. But with ME CFS most patients have very different views on research priorities compared with the fatigue clinicians who unfortunately have been chiefly in the business of CBT /GET

How is this superior and preferable to the charities doing a serious survey as they did for example on NICE guidelines review and why is there only now being expressed interest in the Patients point of view in relation to the activities of the CMRC and research priorities ?

Given the MRC & NIHR have shown great resistance to commissioning any MECFS biomedical research , despite the 2002 CMO report recommending they did and patients consistently calling for biological research ignored, what makes you think that producing a top ten list of patients wishes will draw any more funding out of them?

Finally , why is this being presented as the necessary next step, when countries
like norway just put out a funding call for MECFS biomedical research without this

I also asked what the cost was, given three funders are stated as funding this

land I asked why Holgate immediately applied this to asthma when it first came about (THE JL process) but has waited until now forCFS.

 

Yes. I can see where @Cinders66's is coming from. While on the surface it looks like a step forward in patient engagement it actually keeps them in control of the process.

The other thing that irks is the arbitrary top 10 wish list for want of a better term. What if several of the items in the top 10 are dependent on no. 11 happening as well?

It feels a bit like being a child, having pestered about going to the sweet shop, it's finally Friday and you're finally going. You dance across the threshold with the firm reminder just 2 (or in this case 10) things ringing in your ears.

(I may well be showing my age there!)

 

For those interested in the cost I found this from the write up of the shoulder surgery PSP

additionally

 

ME is in a different situation to asthma or MS where this type of exercise was probably more about identifying gaps according to patients, whilst a multitude of researchers were already engaged in a variety of research angles. I know in MS there were complaints that the neurologists weren’t fully recognising or researching things like fatigue and sexual dysfunction which bothered patients but weren’t where research was focusing and this type of time taking consulting exercise is obviously useful.

The MS society currently fund around 50 medium to large studies per years they have no problem attracting interest and I’m sure for them, doing this exercise didn’t represent an break in annual investment ie there was no ineffect pause whilst it was done.

A patient participant said
“The thing that made me really want to take part is my interest in evidence-based medicine. I also think there’s a real conundrum: with so much research going on, it can be hard to decide what to pursue”



http://www.jla.nihr.ac.uk/priority-.../Research-Matters-Newsletter-Jan_Feb-2014.pdf

But it’s less useful in m.e where we haven’t just got the odd gap that the patient perspective is useful in identifying but a massive great hole of unmet urgent need across the board that needs funding and incentivising urgently.


But it’s less useful in m.e where we haven’t just got the odd gap that the patient perspective is useful in identifying but a massive great hole of unmet urgent need across the board that needs funding and incentivising urgently.
ive also got the impression from the PSP top 10 that I’ve seen so far that it’s mainly around best clinical management rather than biomedical research prioriTies which might explain why it’s a clinical /patient thing. If so, I think that the last thing we need is more focus on management.

 

PSP Steering Group video FAQ between Sam Bromiley (AfME) and James Lind Alliance Adviser, Katherine Cowan.

Code:

https://youtu.be/ZcKJczVu8H4

https://www.youtube.com/watch?v=ZcKJczVu8H4

 

I’ve been engaging with AFME on their Facebook post. I’m still full of reservations /questions about the purpose and use , especially in the context of difficult illness. . The closest illnesses to ours are fibromyalgia and LYME who had PSPs, so quoting stats about childhood disability is not as relevant to me, the NIHR funds non biomedical research I think and it’s their high investment into CBT & GET that’s warping the state CFS research figures already. MS charities worldwide have high income and finding priorities for themselves to fund is different to the task /challenges of our illness which is about how to get funding and interest and overcome the still entrenched credibility issue.

 

The more about this I see, the stronger a sense of dread I feel. It all feels so comfortable Establishment - like the oopposite of what we need.

Bromiley wasn't exactly digging in with probing questions. Im not sure if that made things seem worse.

And the James Lind process got the MS society funding and promoting dire 'fatigue' work from Chalder and Moss-Morris, that has also been used against ME/CFS patients.

 

The communication of the objectives have been poor and when I asked what will be the focus, the reply was that’s up to the steering group

AFME have a history of doing things that look like doing things but actually achieve little. Eg the WHO lobby thing. I would have like recognition of and discussion of the JLP in relation to a stigmatized /underfunded illness and what’s hoped for from the process.

although I am pleased to see AFME Sam engaging helpfully on Facebook again this morning

 

I worry that AfME's target audience are the trustees & donors who don't really know the details of what's going on but like to hear that 'positive' things are happening.

I find it difficult to imagine any plausible outcome from this process that will not make things worse for patients by helping people like Wessely/Crawley/etc get away with their BS and presenting themselves as working together with patients.

I've not looked at any FB discussions - if they are genuinely engaging with concerns then that's a positive sign at least.

 

The deadline for applications for joining the Steering group is currently 5pm on Monday.
This seems unreasonably tight, given that the world has changed completely, since this was publicly launched on 10 March and even AfME/Lind Alliance only seem to have been trying to advertise it since Tuesday.

The steering group application pack can be found via a link from here: https://www.psp-me.co.uk/

It seems that there will be a ratio of carers and patients to clinicians of 2:1.
So to me it is important to let people we know, (in any of the 3 categories), who understand the current ME situation in this country about this opportunity.

I have attached a word doc below which is a brief outline to the process.

 

Perhaps I am being unfair and I look forward to the day they prove me wrong, but they have a history of doing things that actively harm.

The Work Toolkit, their updated pacing and management document (including up-pacing) and let's not forget their support of the PACE trial though they seem to be trying to wash their hands of that.

If the process is going ahead anyway, then at the very least we need to limit the possible damage caused by a charity that has demonstrably failed the patient community in the past.

If they prove me wrong, I'll be delighted.

 

they want the engagement, with it, we aren’t keeping them on their toes necessarily but dancing to their tune, validating their projects and CFS agenda. Patient group engagement was used to validate the PACE trial, where AFME supposedly believed that pacing would get a fair trial and people like trudie chalder said in every media that a major charity was involved, despite AFME being critical from publication.

My concern is for a long time patients and their charities have adopted the role of dancing to the establishments tune in the supposed position of better to work together, be in the tent, play nicely to further our cause, this has gone on for many years but the returns for us have been low. eg you want to rename it CFS, fine we will use MECFS, you want us to collaborate with you on research in an MRC expert group that gets us minimum investment and you the silence of any criticism, fine, you want us to be in a broad tent CMRC collaborative group because apparently we just have to have psychiatry involved & we have to accept Esther Crawley in a top position whilst You spend 4 more years dawdling & not being entirely biomedically focused, well better to be in than out.

AFME may well mean well, or as I said this type Of thing collaborating with the establishment is what they like to do, but I trust the establishment agenda zero. If the gwas study is intended to be “our lot” of funding - if we get it - yet another spell focusing on “ priorities”, as Stephen Holgate has said in the article elsewhere, is a great time filler and window dresser. How many other illnesses have so many years the establishment facilitating discussing priorities against a backdrop of virtually no research actually being funded ?

If they want people to get on board and not be cynical then communication and engagement needs to increase, plus more explanation of ,for an il lness that’s got a research picture like a big hole not with a few gaps, “what’s the ultimate point” of making this a focus “now”? I might be being exceptionally obtuse but I can’t see the stand out benefits especially in context of what’s said here
http://www.jla.nihr.ac.uk/making-a-difference/downloads/More-Than-a-Top-10-report.pdf

Facebook thread direct link

it’s only AFME who are promoting this too, despite it being a CMRC initiative.

 

Yep I agree with you @Cinders66.

I think it.may be a case of d***ed if you do and d***ed if you don't.

Without any input from the likes of patients like us or people who would represent us properly then it will just be yet another round of the same old, same old. AfMEs involvement counting as patient endorsement.

If people who are like minded to us get involved the effects of their efforts will possibly be diluted. That might still give us a chance of a better outcome.

AfME have a history of making life so much more difficult.

 

Right at the outset she admitted that she knows nothing about ME and therefore that makes her a 'neutral' arbiter. I don't think that follows. As with many people, some of whom have become advocates for pwME, unless you are aware that the bPS 'research' is fundamentally flawed and based on spurious hypotheses, then you will believe those who promote it.
After all, they are 'the experts'.