UK: Priority Setting Partnership for ME/CFS

[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

Committee statement.

 

Looks like there is a Twitter account for this PSP already

Code:

https://twitter.com/PSPforMECFS/status/1237312237582376961

https://twitter.com/user/status/1237312237582376961

 

Website, https://www.psp-me.co.uk/

and statement from AfME, https://www.actionforme.org.uk/news/exciting-new-project-to-set-me-research-priorities/

 

something to bear in mind

 

are BACME/BACME members also going to be involved?

 

I don’t accept we need this type of thing before funding is allocated, I assume nothing will be given until after?

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.

 

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.

 

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:

 

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.

 

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=

 

15min video from CMRC conference today.

Code:

https://youtu.be/S7-7-mWgCMc

https://www.youtube.com/watch?v=S7-7-mWgCMc

 

Looks like this is the same paper, https://www.tandfonline.com/doi/full/10.1080/24740527.2017.1378568

 

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.