UK: Priority Setting Partnership for ME/CFS

It's looking like it will be aimed at UK, but there's nothing to stop you sharing ideas on here for others to put forward.
They do monitor URLs to check that there is not a disproportionate number from one source.

 

Yes. Also of interest is that at least one of these studies, PACE, was described as a "thing of beauty" by Simon Wessely who has written a book on psych research & how to go about it. I'm sure he's had a hand, even if only in the background, with a number of the other studies too.

The ranking of the evidence provided as Very Low to Low would indicate that Prof. Wessely, even if he did write a book, is not equipped to design or offer "expert" advice on the design of research studies in the field of ME.

 

Is there a risk that by pushing too hard for such things before the guideline is formally published and set in stone, then we might provoke more powerful lobbying against it in the political corridors of power, for them to exert political pressure - it would be the last thing we would want to encourage. I'm a great fan of Yes Minister, not least because I very much believe it is the sort of thing that happens for real. Should we just stay patient for another 6 months, given we have been striving for this for decades.

 

I think you have a point @Barry, we don't know what the full version sill be for sure.

On the other hand, unless there has been an error of epic proportions, the ranking of these studies is accurate. As they are downgrading the "evidence" that has come out of the research of some very eminent people I'm sure they were careful.

We, thanks to the supreme effort and sacrifice to his health of Alem, finally got to see the PACE data. I'm willing to bet the data for a good number of the studies referred to has never been disclosed. Potentially, the results could be significantly worse then the researchers concluded and published. If they could get away with it on a £5 million publicly funded study, then it will have happened with others. Even without seeing the data the evidence is Low or Very Low.

If you added up the cost of all those studies, I wonder what the final bill would be? None of it really worth the paper it was written on and that's just in financial terms. The cost in terms of human suffering is incalculable.

I think as a patient group we have every right to demand that any research into our field is of the highest standard. Over the last 30 years the field of psychiatry have proven one thing very successfully - they have nothing to offer us.

I think we do have a right to insist that every single penny that is spent on research is spent well & not wasted on attempts to replicate & shore up trials that are graded Low to Very Low.

 

The full guideline will be published in April, the PSP process will take far longer than that to complete. And I don't think that Trish's suggestion will have any effect at all on the level of lobbying that will occur.

 

The PSP will also do an evidence review.
This may be important as the PSP seeks to fill in gaps in research - look for areas that are important to pwME but have as yet been underdeveloped.

So they look at what research has been done and my guess is would normally take account of previous research with a view to building upon or avoiding . Given the evidence review it's clear how poorly pwME have been served by the " normal" procurement route .

This is where the pwME voice can be powerful in directing research to areas that are important to them.

 

Sorry, what is PSP?

 

The James Lind Alliance "brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the Top 10 unanswered questions or evidence uncertainties that they agree are the most important."
https://www.jla.nihr.ac.uk/

The ME PSP is very recent. Action for ME got funding for it and are hosting it:
https://www.psp-me.co.uk/

@MEMarge is the S4ME rep. I'm also on the steering group as a carer. The NICE evidence review is timed very well to give a clear independent warning of where no further research is needed.

 

This is definitely for after. Very soon after, though.

 

Got it, point taken .

 

There is clearly a growing need for studies comparing different pathogens to tell us whether to look for the immune system vs. looking for specific features the pathogens may have.

So a study comparing outcomes in various pathogens being identified as the likely (can't do much better than likely at this point) trigger. All the ones that have seen a post-XXX syndrome and a few more.

So a study with a minimal number of each of the usual suspects:

• The SARS-CoV twins
• EBV
• CMV
• West Nile
• H1N1 (and probably a few more in the Influenza family)
• Lyme
• Q/Borrelia(?)
• ...

I don't know the numbers but right now there is still no clue as to whether the specific features of pathogens are responsible for the response. Which seems likely, they probably have different profiles and this may inform on sub-types.

This is probably too big to accomplish yet but it definitely should be in the pipeline when defining priorities, as something that must be done eventually.

Sooner rather than later. Maybe it will tell us there's almost no difference. But right now we are completely in the dark as to which of two sides to look for and it really seems useful to be able to eliminate (or not) half of the possibility space.

 

Histories will be important - one pathogen may have a bearing on the effects of a subsequent one.
There may be a piggy back effect

 

Looks like the website has had a revamp, https://www.psp-me.co.uk/

 

Tweets from the ME/CFS Priority Setting Partnership

"IT IS TIME! We want to hear directly from people with ME/CFS, Carers or Clinicians about your priorities for #MECFS research. Your ideas could change the future of #MEcfs research. Visit psp-me.co.uk for more information."

"Or head to the survey directly by clicking below jla.onlinesurveys.ac.uk/have-your-say-…"

Code:

https://twitter.com/PSPforMECFS/status/1384114562970972172

ETA: "The survey closes at 5pm on 5th July 2021."

 

What do people think about trying to push for research into the failing of the medical institutions who have caused so many problems for patients? I'm worried that 'patient driven' priorities that fail to address of acknowledge the way in which many powerful people and institutions in UK medical research have shown that they're not fit for purpose risks entrenching a lot of the problems we've seen.

 

Part of the follow up will be maximising coverage as a large response would highlight the dire situation with relevant research - there is a page on the website for use on social media

Spread the word - ME/CFS Priority Setting Partnership (psp-me.co.uk)

@MEMarge will be able to keep everyone in the loop -25% Group are involved in ensuring severely affected can participate.

 

MEAction article (with quote from @MEMarge ), https://www.meaction.net/2021/04/19/uk-me-cfs-priority-setting-partnership-launches-first-survey/

AfME article, https://www.actionforme.org.uk/news/you-can-shape-the-future-of-me-research/

 

The surveys says:

Does that mean people outside the UK cannot participate?