Discussion of suggestions for the ME/CFS Priority Setting Partnership, deadline 5th July - extended to 7th July.

Research priorities, in my mind would be towards
1) a biomarker. stratification, subsets
2) Longitudinal studies- study patients over time- not just epidemiology and questionnaires, blood work, brain imaging, muscle biopsies if agreeable and indicated.
3) Objective markers of disability
4) clinical trials (not vitamins)
5) study ME side by side with long-COVID (because money)
6) Detailed autopsies, brain, muscles and anything else relevant
7) accuracy of diagnosis-how many develop other pathologies over time, spontaneous recoveries, mental health morbidity.

As an aside, if the priorities that are stated are not impactful, we will not move forward. I would be concerned in identifying disproving the work of other researchers as a priority- leaving them in the dust may be the best thing to do. We have no time to waste.
 
Graham said:
That would be good. My understanding is that much of the cognitive testing looks at cognitive performance compared with "normal". The problem with that is that we do not know what each of our healthy "normal" performance is.

If you were to measure my mathematical skills, you would conclude that I was well above average, so there was no problem. The truth is that my performance is well down on what it was before, but there is no measure of that to compare.

Comparison with "normal" is, of course, very useful if we are looking at the performance of a large group of people with ME to see whether a particular intervention is effective.

What I was looking at was a very simple, 5 minute x2, unsupervised test, that showed a pattern of response unique to people with ME: something that could be used at an individual level, just as an early, simple indicator.

Unlike the 2-day CPET testing, it also has to be something that doesn't push people to their limits, nor be susceptible, as Esther says, to reorganising how we use our energies in order to perform on the tests.

It looked promising on my tests of around 30 folk, but the next step will be to test it on a much larger group. Before that though, I need to get my eyesight back and learn how to programme in PHP or similar to handle the data.

It could easily be rubbish though!
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Hi Graham,

In research results from pwME are compared against the other groups including healthy controls. However, when individual patients are assessed their results are compared to IQ, age, gender etc matched (quartile) so it will often pick up a discrepancy between, for example, maths skills and expected for that patients age, education, IQ etc. There are details to allow this for many tests. So there is more to it than comparison to average / mean.

The PASAT test is probably the best / useful to highlight the complex cognitive issues pwME have. It covers attention, divided attention, working memory, basic maths skills, time pressure and so forth. It was a test developed to track recovery from concussion. Many PwME 's cognitive symptoms are similar to pw concussion / post concussion syndrome.

I've used cognitive tests to track how people fair over time and with various medical interventions eg antivirals, antibiotics and GcMaf.

Hope that makes sense

Bw Joan Crawford
Counselling Psychologist
 
This is the sort of thing that it's really important to think carefully about and engage with, but that it's easy to ignore because it's not some columnist being intensely annoying.

How about:

Do patients have good reason to complain about the behaviour of some British researchers or research institutions?
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Could start it off with an introductory sentence like: 'There have been attempts to present patient complaints about the behaviour of some researchers as purely the result of an anti-science rejection of unpalatable truths', but maybe that gets in the way?

Is one or two sentences the maximum useful length?
 
Andy said:
  • PEM - create a definition of what is or isn't PEM using the input of 1000s (preferably 10,000s) of pwME.
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Thought of additional wording that I would add to this one
"Explore the differences in language used between the different levels of severity."

This, hopefully, would shed some light on what we have suspected for a while, that someone mild will describe PEM in a different way to somebody severe.
 
Do patients have good reason to complain about the behaviour of some British researchers or research institutions?
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Longer version better or worse?:

Have patients who complained with good reason about the behaviour of some British researchers or research institutions been unfairly stigmatised by those researchers and research institutions?
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I feel as if it's worth trying to get something like this in the mix, but don't know what the best approach is.
 
NelliePledge said:
I would be disappointed to see studies into gaslighting of ME community take priority over the stuff Milo has listed 1-8.
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I worry that unless we address some of those problems then there's a good chance that other priorities will lead to the funding of people producing poor quality work that ends up being worse than nothing. I think there's a danger of this process leading to even more problems than we have now.

How confident are you that the culture of UK medical research will do a good job of addressing our other priorities even if they have not been pushed to address the problems within their own ranks?
 
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Having trouble reading atm but tried to scan this thread for what I wanted to mention and didn't see it.

I think it's important that in discussing what patients see as a priority in research the message that ANY research must have as part of it's protocol a component included that accounts for HARMS.
 
I keep coming back to thinking about this thread.

I don't know how much of an influence the JLA P2P will have in real or immediate terms but as an opportunity to express the POV's from the community I have distilled mine down to what I think are the two most important things to me. They are:

As above in my previous post -- I would like to see that all research must include a USEFUL protocol for capturing harms. There should probably be some discussion of what this looks like for physchological research by people who would have some clue.

Also, I strongly feel that two birds can be got with one stone in prioritising more GWAS studies that are large and funded and executed internationally. So a group would need to be found and formed that agree on the research and a lead chosen. I do believe that there is capacity in Toronto as a contributer and that funding could be available. I picture the UK, US and Australia as well as possibly a Scandinavian country maybe but also Germany perhaps and I would like to see inclusion from further afield for example Japan and / or South Africa.

I would be a big undertaking and a great deal of commitment. I don't know if that somehow makes it unrealistic. But there would need to be a lot of dedication up front to get it all organised. But if it happened it would certainly overshadow any BPS alliances and show a larger commitment to biomedical research that spans the globe.

And now is the time. Both for the will to solve this (along with covid) and to get access to funding.

I don't know how much of the JLA remit this is but put it out there as my wish for us with ME.
 
Snowdrop said:
Also, I strongly feel that two birds can be got with one stone in prioritising more GWAS studies that are large and funded and executed internationally. So a group would need to be found and formed that agree on the research and a lead chosen.
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I don't know. Maybe it's best to wait and see if the DecodeME effort comes up with anything (while using international research funds for other useful research in the meantime)? Can you say more about why another GWAS is important at this time @Snowdrop? Is your thinking that any GWAS takes a long while to organise and fund and implement, and so we should be thinking about developing a study to replicate or refute DecodeME's findings now?

@Chris Ponting, @Andy, others?
 
Hutan said:
I don't know. Maybe it's best to wait and see if the DecodeME effort comes up with anything (while using international research funds for other useful research in the meantime)? Can you say more about why another GWAS is important at this time @Snowdrop? Is your thinking that any GWAS takes a long while to organise and fund and implement, and so we should be thinking about developing a study to replicate or refute DecodeME's findings now?

@Chris Ponting, @Andy, others?
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I do think that an international effort would take considerable coordination and time. I also think that the results of the current GWAS would be well along and therefore having something ready to go would be most efficient. There have been small studies along many lines and nothing conclusive. I think (in my clueless way) that genomics has yet to be fully exploited in finding clues to this illness and that's where I am placing some small hope. Provided it's done right / well. There may be things that seem to give the possibility of something more immediate (I wouldn't say no to OI research) but I think these things can happen regardless of any Patient priorities exercise and the people with long covid are looking for the same (OI) research or so I'm given to understand by my doctor who has LC and whom I recently spoke to.

So, to recap -- I think some things will conceivably get done when having some of these other good ideas as priorities but for an international GWAS effort it's going to take more than that and there will need to be some champions of such a big idea.
 
Hutan said:
I don't know. Maybe it's best to wait and see if the DecodeME effort comes up with anything (while using international research funds for other useful research in the meantime)? Can you say more about why another GWAS is important at this time @Snowdrop? Is your thinking that any GWAS takes a long while to organise and fund and implement, and so we should be thinking about developing a study to replicate or refute DecodeME's findings now?

@Chris Ponting, @Andy, others?
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Well, either DecodeME will find something or not, obviously. Whichever it is, I think there is a good argument to be made for replication in other countries to see if the results hold up in within different gene pools (obviously the argument is stronger with a positive result than a negative one). As mentioned, given how long these things take to be funded and then actioned starting sooner rather than later would be ideal.

The DecodeME team would encourage replication attempts and, where possible, would be happy to provide any help or advice that we can.
 
NelliePledge said:
Toddler question - apart from seeing if findings are similar in a different gene pool is there going to be a need for replication of GWAS findings before they can be widely accepted by the scientific community?
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Warning: non-geneticist's answer (i.e. take with a pinch of salt).

As I understand it, no, but there would, quite rightly, be a question mark over whether the findings could be applied to other populations, and obviously the solution would be to replicate the study in those populations to find out for certain. It might be that other populations are viewed as being sufficiently similar genetically to be able to be confident that the results apply to them as well, but there might well be other populations where it is reasonable for doubt.
 
Esther12 said:
I worry that unless we address some of those problems then there's a good chance that other priorities will lead to the funding of people producing poor quality work that ends up being worse than nothing. I think there's a danger of this process leading to even more problems than we have now.

How confident are you that the culture of UK medical research will do a good job of addressing our other priorities even if they have not been pushed to address the problems within their own ranks?
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My take on that would be questions such as:
  • Why has so much research to date used subjective questionnaires without any objective data. Discussions of results of these papers frequently recommends that objective measures, such as actometers are used in the future, but this never seems to have happened when the next paper appears. This is despite the huge advances in wearable technology over the last decade?
  • Why do current researchers continually use the Chalder fatigue scale when it has problems such as its ceiling effect.... ref excellent S4ME document?
  • Why do youngsters, who are seriously ill with ME, continually get threatened or referred to social services when they are physically ill due to this disease?
"ME/CFS is a serious, chronic, complex systemic disease that often can profoundly affect the lives of patients" (5). Summarizing the committee's deliberations, Ganiats (1) said that the illness "is not, as many clinicians believe, a psychological problem," https://www.acpjournals.org/doi/10.7326/m15-0647

and I'm sure people can think of other similar ones.

People do want to know that these things are going to change. I personally think that these will be the sort of questions that many will want to ask, though it may not be what a typical PSP gets.

This is obviously my personal view.
 
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