UK: Priority Setting Partnership for ME/CFS

Andy

Andy

Retired committee member
[ETA: The published version can be found here, Research priorities for ...(ME/CFS): the results of a James Lind alliance priority setting exercise, 2022, Tyson et al]

This being announced/launched today at the CMRC conference, see UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020 for discussion of that, and given the potential importance of it I thought it would be worth creating this new thread about it.

From http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/about-psps.htm
Priority Setting Partnerships (PSPs) enable clinicians, patients and carers to work together to identify and prioritise evidence uncertainties in particular areas of health and care that could be answered by research. While the James Lind Alliance (JLA) facilitates these partnerships, the funding and organising is done by the PSP itself.

Focusing on specific conditions or healthcare settings, the JLA facilitates PSPs which:

  • bring patient, carer and clinician groups together on an equal footing
  • identify evidence uncertainties (questions which cannot be answered by existing research) which are important to all groups
  • work with all groups to jointly prioritise identified uncertainties
  • produce a final list (often a Top 10) of jointly agreed research priorities, publicise them widely, and make sure that other uncertainties are recorded and available for researchers and research funders to access
  • provide a rare and valuable opportunity for patients and clinicians to shape the health research agenda.
The JLA PSP process results in a Top 10. The aim of the Top 10 is to highlight important areas for research, but not necessarily to come up with the specific research questions. The Top 10 may include broader areas of importance where patients, carers and health professionals have agreed that there is a need for research. This informs researchers and research funders about priorities so that they can make their research as meaningful as possible to the people who need it.
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Committee statement.
We, the committee, have been contacted about the forum taking part in the Priority Setting Partnership process. We feel that this is something that, in principle, it would be important for the forum to be part of, but at this moment we are still trying to clarify the details of our potential involvement, which is why we haven't brought it to the forum membership yet.
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Thanks for flagging up those concerns, @Sly Saint. It is indeed concerning looking at that MS list full of vague stuff about coping and fatigue which gives a green light to funding BPS stuff.

As we find out more, we will need to try to reduce the influence of any ME BPS people like BACME. Good reason I think for members of the forum to put themselves forward to be on the steering group if and when the opportunity arises.
 
I don’t accept we need this type of thing before funding is allocated, I assume nothing will be given until after?

The eventual aim is to turn these priorities into research questions, and for members of the PSP Steering Group to work with researchers and research funders to obtain funding for that research.
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Running until July 2021,
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If this approach ties in with the AFME tweet about urgent need for ring fenced funding it could easily be interpreted as a number of steps conveniently put in at this particular stage to delay that “urgent” funding allocation. Indeed looking as a whole from 2002, MRCs own strategy or “activity” can be seen like the equivalent of effective family planning, ie doing whatever it can to avoid or delay or space out the actual thing MRC seems to want to avoid but patients want, which is research being encouraged and funded.

There’s a zillion obvious unanswered questions and unreplicatd studies because there hasn’t been enough measures to overcome the massive hurdles to research interest in the U.K., chiefly around education, officially putting out an alternative narrative to the unhelpful BPS one and incentivising research through funding.
 
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For interest, from https://www.psp-me.co.uk/faqs/

What difference will this really make?

Last September, the JLA published More than a Top 10, reporting on the transformational potential of PSPs. Outcomes can include:

  • enabling patients to expand and enhance involvement in other parts of the research system
  • improving reputations and status of researchers
  • changing clinical practice
  • supporting organisations to develop new partnerships
  • promoting greater collaboration and enhancing patient and public involvement
  • changing relationships between funders and researchers, placing less emphasis on competition and greater emphasis on working together to achieve a common goal.
Recent successful PSPs include those for mitochondrial disease, safe care for adults with complex health needs, and multiple sclerosis.

The PSP for asthma culminated in a study funded by the NIHR Health Technology Assessment Programme against a PSP priority.
 
Cinders66 said:
I don’t accept we need this type of thing before funding is allocated, I assume nothing will be given until after?
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Don't forget there is an application in at the moment for a large GWAS. That could be funded before any of this priority setting even gets started and, if funded, would be the biggest funding for a single biomedical ME research project in the UK ever, I think.

Cinders66 said:
There’s a zillion obvious unanswered questions and unreplicatd studies because there hasn’t been enough measures to overcome the massive hurdles to research interest in the U.K., chiefly around education, officially putting out an alternative narrative to the unhelpful BPS one and incentivising research through funding.
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I share your concern that there has not been enough action on getting the right sort of research funded. Surely, now this priority setting exercise has been funded, we need to get behind it to try to ensure future funding goes in the right direction.
 
Cinders66 said:
There’s a zillion obvious unanswered questions and unreplicatd studies because there hasn’t been enough measures to overcome the massive hurdles to research interest in the U.K., chiefly around education, officially putting out an alternative narrative to the unhelpful BPS one and incentivising research through funding.
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Which this PSP would, potentially, help correct?
 
They could only do it now after the genome funding thing at last looks like getting done? They have had months of waiting and meetings. If it’s an exercise already done in asthma,

“The first JLA PSP to announce its Top 10 priorities for future research was in Asthma”
This link shows Holgate himself called for a PSP for asthma in 2004!

Holgates area, why wait until now to get it done in “CFS” it’s just like everything they always have done , taking and wasting years of our lives. It’s all so linear ..

Even if It has benefits as they suggest it will be a time delay to any funding and that’s with a genome study we have Over waited years for, which in itself , due to its size has a delay factor of recruiting before it can actually start. At this rate it will be near end of this decade before anything meaningful and sizeable uk gets published and IF the genome study gets funding, it wasn’t a whole decades worth of value so it doesn’t keep me happy .

AFME love that word eventually. I hate it. I can’t get behind what I perceive as deliberate foot dragging. if you were Simon wessely and new you had to do something biomedical now we have advanced but wanted to stall as long as possible I think that he Would have chosen a very similar approach to past two decades.

just to remind everyone what the cmo report in 2002 was calling for, as contrast and as a baseline of good practice and what the community was expecting to see:

The cmo report 2002 said
"6.5 Research
A programme of research on all aspects of CFS/ME is required.
Government investment in research on CFS/ME should encompass health-services research, epidemiology, behavioural and social science, clinical research and trials, and basic science.
In particular, research is urgently needed to:
● Elucidate the aetiology and pathogenesis of CFS/ME;
● Clarify its epidemiology and natural history;
● Characterise its spectrum and/or subgroups (including age-related subgroups);
● Assess a wide range of potential therapeutic interventions including symptom-
control measures;
● Define appropriate outcome measures for clinical and research purposes; and
● Investigate the effectiveness and cost-effectiveness of different models of care.
The research programme should include a mix of commissioned or directed
research alongside sufficient resource allocation for investigator generated studies on the condition.
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So much depends on the specifics - it's easy for things like this to sound good in principle, but end up being shaped by the preferences of those who know how to play the system (which tends not to be patients). If Action for ME are playing a leading role, that leaves me more concerned too.
 
Perhaps speaking directly to AfME to influence them as advocates would be the place to start ensuring the direction things will go.

  • Being honest about our fears remembering past disappointments in their decisions.
  • Suggesting that this could improve relations if they are clear and transparent about supporting a biological research and practical support approach to further progress and aid to the ME community.
 
Esther12 said:
So much depends on the specifics - it's easy for things like this to sound good in principle, but end up being shaped by the preferences of those who know how to play the system (which tends not to be patients). If Action for ME are playing a leading role, that leaves me more concerned too.
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A bastardized version of the James Lind Alliance process was used by Mary-Ann Fitzcharles to the detriment of Canadians with FM.

The Canadian Journal of Pain published Manfred Hath's critique:

"The current issue of this journal includes a paper by Fitzcharles et al., who used the JLA methodology to explore the indications for potential research in the treatment of fibromyalgia...

The article by Fitzcharles et al. illustrates the difficulties in reaching a useful and clear agreement between patients and health care professionals for a treatment research agenda. The work, the time, and the number of people involved in this project were considerable, but the validity and originality of the results presented appear questionable. The main problems are listed below..."

https://media.proquest.com/media/hms/PFT/1/DI2b8?_s=2CvJBnifrEZUn3AADQP+1uetEzk=
 
Hutan said:
@ScottTriGuy, that link doesn't work for me. Is there another way to get to the information - it sounds useful.
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Looks like this is the same paper, https://www.tandfonline.com/doi/full/10.1080/24740527.2017.1378568
The article by M.-A. Fitzcharles et al. appearing in this issue represents an attempt to elicit suggestions from a group of patients with fibromyalgia (FM) and a group of health professionals on the leading uncertainties in the treatment of FM. The sample of respondents in both these groups is not adequately representative, the methodology used is unduly complex, and the responses obtained do not represent new or useful information.
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Harth said:
There were 550 responders to the survey but in only 73% of cases could they be identified as either “patient” or “clinician.” Thirteen responders were identified as “organization members,” another 14 were labeled as “caregivers,” and in 122 responders there was “no identification” (Table 2 in Fitzcharles et al.3). It appears, nevertheless, that even responses from the latter three groups were considered in subsequent analyses. In the patient group, there was overrepresentation from Quebec and underrepresentation from Ontario. There were 109 clinician responders, of whom 45% were rheumatologists. Only 12% of the clinicians were family physicians, and there were only seven psychologists and only four psychiatrist responders.
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In our case, caregivers would be acceptable responders in order to help ensure the needs of children and of the very severely affected are represented. I guess there would need to be questions about the severity of the illness, in order to ensure the people across the spectrum of illness severity were represented. And also questions about age of onset and current age so as to ensure that adequate weight was given to the issues of young people.

Good geographic coverage is important, but I think it's more important that there is plenty of representation from outside of the NIH NHS clinics. During the first couple of years of the illness, it's hard to know what is going on and who to believe. I think responses are more likely to be from people actually with ME/CFS and more likely to be focused on biomedical issues if patient respondents are required to have had the illness for two years or more. That's short enough to still remember the difficulties of diagnosis but long enough to begin to understand that thinking positively and exercising isn't going to fix the problem.

Regarding clinician respondents - that will be a bit of a nightmare in the UK. It's likely that there would be a whole lot of responses from NIH NHS clinic staff providing BPS/BACME inspired care, with perhaps many of them keen to understand how to make CBT/GET more effective and keen to blame the patients for being too perfectionist or neurotic, or too 'boom-and-bust' or giving up too easily or whatever, in order to explain why the treatments don't work. I think the process would have to anticipate that. Perhaps responses from clinicians would need to be separated into 1. those from staff of NIH NHS clinics or otherwise ascribing to BPS ideology and 2. those from others, when reporting clinician research priorities.

Assuming a process that ascribes the same weight to every clinician response, that could produce a very poor outcome in a situation where the majority of patients believe that the majority of clinicians have no good understanding of the medical condition under consideration.
 
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I have just watched the video and am concerned. The James Lind alliance is embedded in the UK National Institute of Health Research.

The speaker kept talking about 3 groups being involved in the consultation process: patients, carers and health care professionals, mentioning that these latter need to be in current practice seeing patients. There was no mention of scientists. This is all about research into patient care, not about biomedical research, as far as I can see.

And given that they say they give equal weight to each of these 3 groups, that means they will be listening to NHS therapists and doctors as much as to patients, which makes my heart sink. It looks inenvitable that the BACME lot will have a large influence. I can't see any way around that.
 
It does rather seem that we're back to the fundamental problem - those deemed to be experts are those running clinics - bad and not so bad clinics -a large number of those don't believe that patients can be harmed by the treatments they offer and don't bother to look or check for harms.

As patients disappear off their books - either through temporary remission or because they're no longer helping or the patient becomes too ill for further engagement - they assume the patient to be "recovered" and they have been successful.

Until they recognize this issue then they are scattering seeds on tainted ground. Nothing good can come from that.
 
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