UK: Priority Setting Partnership for ME/CFS

Thanks @Amw66,

I am disappointed that there are only 13 replies from those caring for under 16s.

I suspect that many parents are too scared to say anything for fear of repercusssions, even though any data here is anonymised, held only by JLA and no clinicians could possibly access it.

If anyone on here knows people with under 16s please do encourage them to take part.

I will be in touch with my contact at the parents' FB group. Maybe you could do the same for the Mum's one @Amw66.
 
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MEMarge said:
Thanks @Amw66,

I am disappointed that there are only 13 replies from those caring for under 16s.

I suspect that many parents are too scared to say anything for fear of repercusssions, even though any data here is anonymised, held only by JLA and no clinicians could possibly access it.

If anyone on here knows people with under 16s please do encourage them to take part.

I will be in touch with my contact at the parents' FB group. Maybe you could do the same for the Mum's one.
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Yes. My thoughts too. Especially given the quality if recent uk paediatric research papers.

Although most that I know here are now over 16 . I' ll do some prodding...
 
Just a wee post relative to concerns re abuse of survey ( potentially by researchers posing as patients / carers)

The survey responses are collated by the statistical at jla.

The steering group works with the statistician re whether queries are within the defined scope of the survey.

Questions/ queries distilled into core group for second survey to narrow down to 10.

Steering group input is critical to this process- they essentially vet the sorted out questions but retain access to all.

I think they will have a feel for responses.

https://www.psp-me.co.uk/steering-group/
 
From an email from the PSP for ME/CFS team,

"Over 1,100 people have taken part so far, and there is just under a week left to take part in this stage. So we are asking you to share the survey with anyone you think might want to participate."

http://www.psp-me.co.uk/take-part/

"Remember, the closing date is Monday 5th July.


What’s happening with my survey response now?

We are collating all your questions and sorting them into groups. We'll then look to see whether any of them have been answered by research already and if so, we'll remove them from our list. We’ve had over 2,000 ideas suggested already, so we’re getting to work on this immediately. Even if a question is suggested once it won’t be lost though. The grouping of similar questions allows us to move into the next stage.


What will happen next?

The steering group will write a second survey. This will include all the grouped questions that you have suggested. We’ll ask you to rank how important you think these are. You might rank your own suggestion at the top but equally you might read some of the questions suggested by other people and think they are very important areas for research too. As there are so many ideas, the steering group still needs to decide on the most accessible way to write this next survey.


This will help us go from a long list of questions, to a shorter list of priorities.


We’ll let you know when the next survey is launched (hopefully in August), and are excited for you to share your views on what is most important."
 
I also would like to briefly share my thoughts on research priorities in ME/CFS.

I know that many patients want biomedical research but having followed the literature for a while, my impression is that such type of research is usually a wild guess, with a low chance of returning anything useful. It feels very much like searching for a needle in a haystack.

Therefore, what I think would be useful is more fundamental research into ME/CFS into onset, symptoms, comorbidities, prognosis, diagnosis etc. I realize these things are less exciting but if done properly (large-scale and with representative populations), they will provide valuable knowledge even if we don't have a clue what to look for. These kinds of studies might help to better characterize ME/CFS and they could provide clues for biomedical research on where to look for.

With all the respect to ME/CFS researchers, who certainly don't have an easy job, but I have the impression that many come into the field with some pet theory that gets researched even if it doesn't really fit theoretically or if the data isn't persuasive. I would like to see more fundamental ME/CFS research: the type that doesn't start out with a possible explanation but instead focuses on gathering reliable data to help the field move forward. It seems that only a couple of research teams (The biobank team in the UK, Jason in Chicago, Komaroff back in the days, Fluge and Mella in Norway etc.) have been doing this type of study.

One example: it is a bit perplexing that post-exertional malaise (PEM) is now seen as the most characteristic feature of ME/CFS - everyone talks about it - but we don't have an adequate tool to measure it, we don't have decent studies that used a ME/CFS control group or that compared PEM in other fatiguing illnesses etc.
 
Michiel Tack said:
With all the respect to ME/CFS researchers, who certainly don't have an easy job, but I have the impression that many come into the field with some pet theory that gets researched even if it doesn't really fit theoretically or if the data isn't persuasive. I would like to see more fundamental ME/CFS research: the type that doesn't start out with a possible explanation but instead focuses on gathering reliable data to help the field move forward. It seems that only a couple of research teams (The biobank team in the UK, Jason in Chicago, Komaroff back in the days, Fluge and Mella in Norway etc.) have been doing this type of study.
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Good point.

This is an area where Wessely has worked his magic again being the goto "expert" as one of his many hats is epidemiology.

Funny as he's spent the last 2 or 3decades completely failing to observe and record even fairly basic & obvious things that might have demonstrated useful patterns & trends.
 
MEMarge said:
Next step is that the Information Analyst groups similar questions together.

This will be done in conjunction with a sub-group of us, comprising a mix of the organisation reps, people with ME, carers and clinicians. This will probably take till the end of July, but we'll be starting next week.

All the original questions will be retained.

The phase after that will be checking which research questions have been answered to a high standard of evidence.

This will be starting around the time that the NICE GDL are published.
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Hi @MEMarge @Amw66 (I hope I'm tagging the right people). This page (https://www.jla.nihr.ac.uk/about-the-james-lind-alliance/templates-and-useful-documents.htm) states that the PSP Protocol should be published on the JLA website once it is finalised by the Steering Group. I don't think it has been published yet. Can you help a poor, simply boy who is a fan of transparency? ;)
 
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Given the current status with the NICE Guidelines review, the PSP second survey to proritise the top 10 research questions may assume a significance noone had forseen.
Currently the data collected from the initial responses is being processed - this has taken longer than expected due to the volume of responses and the impact this has steering group members assisting in this task who have ME.

When the second survey is launched we will flag it up prominently - we need to have it shared as widely as possible
 
From an email update.

What the ME/CFS Priority Setting Partnership is doing now


Hi,

We had an incredible response to our first survey, so thank you for taking part. Now we want to update you on what’s going on behind the scenes and what will happen next.

We received a total of 1565 submissions, full of important ideas for research into ME/CFS. This means that we are now combing through over 5,300 ideas on what should be researched. Questions submitted covered all sorts of topics, including the biological mechanisms of ME/CFS, treatments, specific symptoms, causes, genetics and many more.

Our steering group is working hard to sort these questions into themes, with the support of Kristina Staley, our Information Specialist. This will allow us to come to a final “long-list” of questions that you want research to answer about ME/CFS.

We’ll check whether any of these questions have been answered by research already, but the James Lind Alliance set quite a high bar for this: they require a recent systematic review that comes to a clear conclusion. Sadly, we’re not expecting any of the questions to already have answers.

Next, we’ll publish this long-list in a new survey, and give you the opportunity to pick your top ten priorities for research. This survey will be launched in the autumn.

Dr Monica Bolton, one of our steering group members, has been closely involved in the work to sort all your questions into themes:

“There have been some tricky decisions to take as we sort questions into themes. We want to ensure the themes absolutely represent the questions submitted, but also need to work towards a manageable long-list so that people don’t have to read through a thousand questions! We’re making really good progress now, and I believe our long-list will be a really solid representation of the many questions submitted.”

Want to learn more about the process?

The James Lind Alliance has loads of information about how a Priority Setting Process like ours works. Their website goes into more detail about the stage we are currently in. Find out more by clicking below to look at the ME/CFS Priority Setting Partnership.

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

We’re looking forward to launching our next survey, and will let you know when this happens!

Take care,

Sian Leary

ME/CFS Priority Setting Partnership Steering Group Member
 
Survey now live!

Take part here: https://www.psp-me.co.uk/take-part/

The ME/CFS Priority Setting Partnership (PSP) is giving you the opportunity to define your top ten priorities for future ME/CFS research.

In partnership with the James Lind Alliance, the ME/CFS Priority Setting Partnership is launching their second survey today.

The research questions in this survey are based on over 5300 ideas submitted by people with ME/CFS, their carers and clinicians in our first survey. Now it’s time to prioritise your top ten.

Rachel Elliot, steering group member, says: “For too long the majority of research into ME/CFS has been based upon the interests of researchers and funders, or just not happened at all. It should focus on the areas that impact people living with this disease the most. This process is our chance to make that a reality.”
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Three ways to take part:
Online:
Paper:
  • If you can’t participate online, we’ll send you a paper survey. Phone or write to us with your name and address.
BY PHONE:
  • If you want to complete the survey by phone, please call Helen at the 25% ME Group on 0739 240 3591

Who can take part?
  • Anyone aged 16 or older
  • Living the UK
  • Who has ME/CFS, or
  • Who is a carer or clinician for someone with ME/CFS

The questions
The questions that people with ME/CFS, their carers and clinicians submitted covered a range of areas. These included:
  • Causes and prevention
  • Diagnosis
  • Lifetime risks and course of the illness
  • Treatment and management
  • Underlying mechanisms and their treatments
  • Health services
  • Causes of symptoms and their treatment
  • Social and psychological impacts and support
You can look through these questions in your own time, and search for terms that are important to you, on their dedicated webpage here.

The questions were arrived at after many hours work by the steering group and information specialist to categorise and collate all the ideas. The PSP uses plain English for these summarised questions, so they can be understood easily.

Take the survey

Look through the questions
 
I have read quickly through the list. Thanks to the people involved in putting it together and putting the points clearly in plain English. I hope some good comes from this exercise. It will be interesting to see where the main focus lies in the final 10.

I am disappointed that the PSP process does not include the option of making clear the sort of research we want stopped, particularly the useless and potentially harmful ongoing studies that seek to attribute ME/CFS to psychosomatic factors, and clinical trials of the sort like FITNET that can't, by their design, produce useful information, and will continue to be used to justify useless therapies.
 
On a more personal note - really looking forward to seeing the discussion of these questions here. There are a couple I will definitely choose for my top ten, but don't have all sorted in my head by a long way yet.

Realise they are in the plainest English we could manage, which may seem overly simplified for many minds here, but hopefully will enable broader accessibility.

The one I'm sure to choose is number 29:Are there ways to objectively measure how severely someone is affected by ME/CFS and whether their symptom levels are changing over time?

This question in part comes from the NICE guideline recommendation for a core outcome set, and I just don't see how we're going to improve future clinical trials without this in place.

Also likely to choose number 24: Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as low dose naltrexone, or drugs used to treat Postural Orthostatic Tachycardia Syndrome (POTS)?

Personally LDN did nothing for me, but other drugs have. However I don't feel I can in any way recommend these to others due to lack of research and potential for side effects.

Just my initial thoughts!
 
Trish said:
I am disappointed that the PSP process does not include the option of making clear the sort of research we want stopped, particularly the useless and potentially harmful ongoing studies that seek to attribute ME/CFS to psychosomatic factors, and clinical trials of the sort like FITNET that can't, by their design, produce useful information, and will continue to be used to justify useless therapies.
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Yeah I think we're in a weird situation. I doubt most illnesses have to counter the crap research we've been subjected to, and the James Lind Alliance process is set up to be replicable in many different disease areas.

If we wanted to put out a charter of what our community defines as unacceptable in research and then get support for that I could see it as a possiblity (maybe between a few orgs?), but don't think that was really possible through this PSP process.

That said, some questions will clearly come out as having least support, and that in itself will be interesting.
 
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