UK: Priority Setting Partnership for ME/CFS

One can hope, but I suspect the patient community had made that clear by 2005.
I distrust the way bureaucracies go about 'patient inclusion'. NICE got it right but there is a suggestion that in the US things have slipped back into the hands of the rehab people.

 

Although these types of questions are usually "Out of Scope" (OOS), we did manage to retain some of them. Such as:

Q 41, Why don't some health professionals accept ME/CFS is a serious illness. What would help them to recognise and respond appropriately to people's symptoms?
(I would rather this had said most rather than some HCPs)
Getting this type of question into the top ten could lead to funding to expand Nina Muirhead's research on what medical students are taught abot ME. If funded by NIHR it may give more weight to the question and mean that previously reluctant med schools responded.

Q 55 on quality of life, DWP etc. Again Nina did a project on the effects on families which could be expanded if funded

Q 57 on harms from stigma and lack of professional recognition

There were other areas that are usually OOS, such as epidemiology and matters that would be probably answered by clinical audit for other diseases. We were able to explain that the clinics do not collect this data, do long-term follow-up etc.

 

My longing is that we get funding in biomedical research into the causes and pathology of ME. We cannot develop effective treatments until we understand the disease processes.

There are interesting results, mainly from other countries, that will be worth repeating and then, if useful followed by larger, studies, publicly funded.

Like my daughter, I feel that some of the questions that could make a difference in the shorter term are also important. Namely questions around education of healthcare providers, DWP, academics and media are important. Updated understanding of the reality of ME, more than of those who are very mild, would then lead to acknowledgment of the life-chaging impact of ME and the urgent need for scientifically sound research.

 

Yes, but we are about to eat.
Will be later or tomorrow.

 

Have attached my Top Ten, for interest

 

This is probably not a popular comment but IMO the problem with JLA PSP is that there are 10 priority choices. Again IMO it's likely that for many illnesses people will broadly agree about the necessity of the first one, two or even three and from there diverge to things are are important but not the central issue. This allows someone with a vested interest to attempt to muscle in with the psychology of ME priority as reasonable in a list of ten priorities.

IIRC this is what has happened in other similar (hostage to BPS) illnesses. Tacked on the end (priority 10) is studying the need for supportive CBT.

What is needed but never considered as an appropriate use for consideration is what should not be on the list. It isn't part of the 'scope' of the exercise. So as long as number 10 is there any BPS researcher can just carry on carrying on. It's a priority even when at the bottom of the list.

But there are the new NICE GL's so maybe this times the charm and there will be no psych priority.

 

My final selection, with grateful thanks to everyone here, but especially @Andy and @lunarainbows, in helping me clarify my thoughts


Diagnosis:
11. How can the current approach to diagnosing ME/CFS be improved, to reduce delays and include other conditions commonly linked to ME/CFS, such as Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos syndromes (EDS) and Mast Cell Activation Syndrome (MCAS)?

Treatment/Management:
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)?

Mechanisms/their treatments:
30. What is the biological mechanism that causes post-exertional malaise (symptoms caused or made worse by physical, mental or emotional effort, which can be delayed) in people with ME/CFS? How is this best treated and managed?
31. What causes the central and peripheral nervous systems (brain, spinal cord and nerves in the body) to malfunction in people with ME/CFS? Could this understanding lead to new treatments?
32. How are mitochondria, responsible for the body’s energy production, affected in ME/CFS? Could this understanding lead to new treatments?
33. Does the immune system continue to over-function or under-function in some people with ME/CFS to cause symptoms? What does this mean for treatment and risks from infections and vaccinations, including COVID-19?
34. What happens to muscle function in people with ME/CFS?
37. How is the transport of nutrients/electrolytes in and out of cells affected in people with ME/CFS? Could this understanding lead to new treatments?
38. Does poor delivery or use of oxygen within the body cause ME/CFS symptoms? If so, how is this best treated?

Cause of symptoms:
45. What causes orthostatic intolerance (e.g. feeling dizzy or unwell on standing or sitting up) or problems controlling body temperature? How are these best managed and treated?
(Hopefully that would include further investigations - re Q28 - and use of a HR monitor, to get a sneaky extra Q in!)


You may have guessed my preference towards Dysautonomia/OI/PoTS investigations


EDIT. Have now read @MEMarge’s post about Out Of Scope items - I need more than 10 options

 

Do you have a friend or relative who would complete it?

I think all of us could do with more choices. The whole 59 will be recorded and available.

ETA: Thanks for completing this, @Linda, the more who do, the more weight it will carry

 

Does anyone want to apply for the final workshop?

It will be split into 3 Zoom sessions in March 2022. There are 3 or 4 days between the sessions to allow for rest/recuperation.

If you want more info, do message (ie start a conversation with me)

Some Steering Group members will be involved. but we are also looking for new people. You could do this in pairs, if that helps..

 

Last chance to have your say on the research you want funded in the UK

 

https://twitter.com/user/status/1470317579512139776

 

2155 respondants as of this morning !!

 

Email update.


We want to thank the incredible 2,000+ people who engaged with our latest survey. This figure and your views matter. By coming out in our masses the results will be much more influential.

The process now has just one more step – and you could be part of it.

These final workshops are an opportunity for different people to express their views and hear different perspectives about ME/CFS research priorities. There is immense value in bringing people together to engage in careful consideration and quality discussion to make shared decisions and reach genuine consensus. Through the workshops the final top ten ME/CFS research questions will be agreed.

The deadline for applications is midday Tuesday 11th January 2022


When and where?

The workshops will take place on Zoom:

• Saturday 5th March 1.00pm – 2.30pm
• Thursday 10th March 5.30pm -7.00pm
• Friday 18th March 2.00pm - 4.00pm

The event is spread across three dates to allow time for recovery, and there will be rest breaks in each workshop. We need you to be at all three sessions. You may of course consider naming a proxy who can step in on your behalf at any time should this prove necessary.

Ideally you will have a computer or tablet to connect to the workshop. Joining on a mobile device or by dialling in will have limitations, but we will do all we can to enable your full participation.

Who are we looking for?

We want to recruit approximately 30 people who have lived experience of ME/CFS, carers and supporters including family, and healthcare professionals working in this field. This includes people with all severities of ME/CFS.

What do I need to do at the workshops?

You should be prepared to share your experiences and opinions, and listen carefully to other people, in a series of small group discussions. There will be about five people in each small group at the workshop. Together, you will be helping us to make decisions about the top 10 research questions you think should be prioritised.

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

 

Are things going to slide backwards again in the US?

I hope these people aren't able to achieve much and that we don't have another round of backsliding.

 

Just bumping this. The PSP is keen to get applications for the final workshops from carers and healthcare professionals (in addition to ME patients).

You can apply for take part in the workshops until Tuesday 11th January, here: https://www.psp-me.co.uk/take-part/

 

Final call for applications. Deadline is midday tomorrow (Tuesday 11th Jan).

psp-me.co.uk/take-part