Saw on AFME social media there have been 99 applications from PWME, 15 carers and 5 professionals
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UK: Priority Setting Partnership for ME/CFS
- Thread starter Andy
- Start date
Bumping up- please apply and be heard.
I got one of the places on the workshops.
Fainbrog
Senior Member (Voting Rights)
Are all the charities and F-ME on board for the publication with national media outlets lined up for press releases?
Gecko
Senior Member (Voting Rights)
All stuff we're working on
https://psp-me.co.uk/
Priorities released
Priorities released
InitialConditions
Senior Member (Voting Rights)
I hope there is a bit of press for this. Obviously not a big story like the NICE shenanigans, but a story nonetheless.
Andy
Retired committee member
Full report can be read here, https://psp-me.co.uk/explore-the-top-10/the-full-report/
The Top 10+ ME/CFS research priorities
Priority 1 - 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?
Priority 2 - 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)?
Priority 3 - How can an accurate and reliable diagnostic test be developed for ME/CFS?
Priority 4 - Is ME/CFS caused by a faulty immune system? Is ME/CFS an autoimmune condition?
Priority 5 - Are there different types of ME/CFS linked to different causes and how severe it becomes? Do different types of ME/CFS need different treatments or have different chances of recovery?
Priority 6 - Why do some people develop ME/CFS following an infection? Is there a link with long-COVID?
Priority 7 - 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?
Priority 8 - Is there a genetic link to ME/CFS? If yes, how does this affect the risk of ME/CFS in families? Could this lead to new treatments?
Priority 9 - What causes ME/CFS to become severe?
Priority 10 - How are mitochondria, responsible for the body's energy production, affected in ME/CFS? Could this understanding lead to new treatments?
Priority 10+ - Does poor delivery or use of oxygen within the body cause ME/CFS symptoms? If so, how is this best treated?
The Top 10+ ME/CFS research priorities
Priority 1 - 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?
Priority 2 - 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)?
Priority 3 - How can an accurate and reliable diagnostic test be developed for ME/CFS?
Priority 4 - Is ME/CFS caused by a faulty immune system? Is ME/CFS an autoimmune condition?
Priority 5 - Are there different types of ME/CFS linked to different causes and how severe it becomes? Do different types of ME/CFS need different treatments or have different chances of recovery?
Priority 6 - Why do some people develop ME/CFS following an infection? Is there a link with long-COVID?
Priority 7 - 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?
Priority 8 - Is there a genetic link to ME/CFS? If yes, how does this affect the risk of ME/CFS in families? Could this lead to new treatments?
Priority 9 - What causes ME/CFS to become severe?
Priority 10 - How are mitochondria, responsible for the body's energy production, affected in ME/CFS? Could this understanding lead to new treatments?
Priority 10+ - Does poor delivery or use of oxygen within the body cause ME/CFS symptoms? If so, how is this best treated?
L
I think today as a launch day may maximise exposure
Thanks to all who worked on this.
At first reading, I thought, oh good, all biomedical questions. No more excuses for low quality psychological and exercise research.
But on second reading I see several topics where the BPS people could easily say they are addressing one of the priorities with their shoddy useless research.
I think that reflects a major flaw in the process that didn't allow us to specify what research and research methodology we don't want.
At first reading, I thought, oh good, all biomedical questions. No more excuses for low quality psychological and exercise research.
But on second reading I see several topics where the BPS people could easily say they are addressing one of the priorities with their shoddy useless research.
I think that reflects a major flaw in the process that didn't allow us to specify what research and research methodology we don't want.
InitialConditions
Senior Member (Voting Rights)
Maximise exposure to patients maybe. But that's not really what I'm talking about.
josepdelafuente
Senior Member (Voting Rights)
Jumping in, for example.
Is the HPA axis causing a withdrawal response? Can it be corrected by training people not to expect worsening symptoms after exercise, and giving them graduated exposure to activity therapy?
Use of [some sort of stimulant drug] in order to help people with ME/CFS overcome their fear of activity
Investigation of childhood and adult trauma and cytokines before and after exposure to a stressing event as input variables in a diagnostic algorithm for ME/CFS
Does childhood trauma prime the body to develop ME/CFS? investigation as for Priority 3.
Investigations of sub-types based on severity and childhood trauma (or perfectionism or co-morbid anxiety). Do subsets of people with ME/CFS respond differently to CBT treatment e.g. do people with anxiety/depression and ME/CFS respond better to CBT?
Are all the various permutations of childhood trauma and personality flaws risk factors for Long Covid? Happy hunting ground here. Years of grant funding.
fMRI investigation of some aspect of the brain/brain connectivities that highlight a problem with the brain related to over-reacting to normal levels of stress - before and after mindfulness training.
. This one takes a bit of thinking about.... Maybe genetic commonalities between people with functional movement disorders, ME/CFS and high levels of neuroticism.
Correlations of Childhood trauma; Adult trauma; personality flaws; feelings of inadequacy; beliefs about prognosis; facilitation by overly supportive partners; feelings of abandonment etc with illness severity
Aspects of mitochondrial functioning before and after the Lightning Process - lots of aspects so something turns up
Survey of ME/CFS symptom load before and after some jolly sea-shanty singing and instruction on how to breathe.
Like Trish, I think the list is fine, it's just a shame there wasn't a way to signal that BPS rubbish is not welcome.
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adambeyoncelowe
Senior Member (Voting Rights)
Sadly, PSPs don't do that. They just raise priorities and researchers are left to do as they want with them.
Personally, I wanted fewer 'pet theories' in there (e.g., the ones about exploring presumed immune, mitochondrial, vascular and neurological dysfunctions) for the simple reason that they make assumptions about a favoured model of pathology -- which makes finding an answer harder if it's not one of those things.
I'd have liked a broader question (e.g., 'What causes ME?' 'How can we prevent, treat or cure the causes of ME?' etc) to allow researchers to cast the net more widely. But I can see why that wasn't done (the very real fear that if it's too broad, it'll just be BPS approaches forever).
For similar reasons, I wasn't enthused by 'try drug x' recommendations, either. The one we've got in there about drugs is okay, but I think we might waste a lot of time proving that fad drugs don't work, and some desperate people will keep taking them anyway.
A broader question, such as 'Which drugs can treat ME?' might have been simpler and less fraught. I suspect we didn't get that because some people wrote in advocating for a clinical trial of their own favoured treatment, rather than pharma trials in general.
I'm glad the diagnostic test is in there, though. Some people thought that could come later, after we figure out what's going wrong, but I highlighted the point @Jonathan Edwards has made previously about rheumatoid arthritis (where a diagnostic test came first and then led to understanding the disease mechanisms several decades later).
Plus, two of the constant themes from the qualitative data we saw at NICE were delayed diagnosis and diagnostic uncertainty. Diagnostic tests kill two birds with one stone.
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Thanks, Hutan and Adam for spelling out some of the concerns many of us share.
The sort of research methodology issues that aren't covered include:
- subjective outcome measures in clinical trials that are unblinded
- questionnaires that have a strong ceiling effect and other flaws, like the Chalder Fatigue Questionnaire
- questionnaires that conflate symptoms caused by psychiatric and physical disease, leading, for example, to misdiagnosisof ME/CFS as depression on the basis of things like reduced social activity
- trials of things like neutriceuticals that claim efficacy on the basis of small, brief, open label trials with subjective outcome measures and no placebo control group
- ethics committee permission being given for trials that are in themselves unethical, such as LP in children, or where the researchers have conflicts of interest such as a financial interst in a treatment
- biomedical studies that claim they have found a biomedical basis for ME on the strength of tiny samples and/or complicated machine algorithms that don't correct for multiple comparisons and/or don't verify ther model with an independent patient sample
- studies based on retrospective review of clinic case notes and make unfounded claims of treatment efficacy by cherry picking results that fit the researchers preconceptions
Etc etc etc
I am not blaming those who have worked very hard to produce this list. I am grateful for their efforts and hope it will encourage funding bodies to fund good quality well targeted research.
It is a flaw in the design of the PSP process I am disappointed by. I guess for most diseases patients have been less overwhelmed by such a dominance of bad research by researchers who have already made up their minds the disease is psychosomatic.
The sort of research methodology issues that aren't covered include:
- subjective outcome measures in clinical trials that are unblinded
- questionnaires that have a strong ceiling effect and other flaws, like the Chalder Fatigue Questionnaire
- questionnaires that conflate symptoms caused by psychiatric and physical disease, leading, for example, to misdiagnosisof ME/CFS as depression on the basis of things like reduced social activity
- trials of things like neutriceuticals that claim efficacy on the basis of small, brief, open label trials with subjective outcome measures and no placebo control group
- ethics committee permission being given for trials that are in themselves unethical, such as LP in children, or where the researchers have conflicts of interest such as a financial interst in a treatment
- biomedical studies that claim they have found a biomedical basis for ME on the strength of tiny samples and/or complicated machine algorithms that don't correct for multiple comparisons and/or don't verify ther model with an independent patient sample
- studies based on retrospective review of clinic case notes and make unfounded claims of treatment efficacy by cherry picking results that fit the researchers preconceptions
Etc etc etc
I am not blaming those who have worked very hard to produce this list. I am grateful for their efforts and hope it will encourage funding bodies to fund good quality well targeted research.
It is a flaw in the design of the PSP process I am disappointed by. I guess for most diseases patients have been less overwhelmed by such a dominance of bad research by researchers who have already made up their minds the disease is psychosomatic.
adambeyoncelowe
Senior Member (Voting Rights)
There is definitely a case that we should do things slightly differently for ME, and I tried to articulate this myself at least once. The same treatment doesn't always mean equal treatment, or fair treatment.
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