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

The initial thread for the ME/CFS Priority Setting Partnership is here, UK: Priority Setting Partnership for ME/CFS, but this thread is aimed at allowing discussion of what people might suggest in their individual submissions, and allows for non-UK folks to provide a level of input as well (as UK participants might see something they agree with and submit).

So share your views below but UK pwME, please do take part via the survey here, https://jla.onlinesurveys.ac.uk/have-your-say-in-me-cfs-research, so that your views are counted. The survey closes at 5pm on 5th July 2021.
Extended to 5pm Weds. 7th July.

For context, the survey says

Please think about what impact ME/CFS has on you and what you would like research to find out.

If you are a professional working in the field of ME/CFS, please consider what research would make a difference to the delivery of care to people with ME/CFS.

We want to hear your questions and ideas, no matter how big or small.​

Full details of the process here, https://www.psp-me.co.uk/

ETA: Survey close date.

 

So my thoughts, off the top of my head and in no particular order;

1. Replication of as many of all the small, under-powered, studies as is possible, so we can establish whether their results hold true for larger populations.
2. Research into the levels of disability experienced by pwME, and what can be done to reduce the impact of this burden on them.
3. PEM - what process or system is causing us to suffer excessively from over-exertion and how does it differ to controls?
4. PEM - create a definition of what is or isn't PEM using the input of 1000s (preferably 10,000s) of pwME.
5. ME/CFS - what symptoms do the patient population actually report? Again, what do 10,000s of pwME report, rather than the smaller numbers that have been used to construct symptoms lists previously.

ETA: 6. Creation of a set of outcome measures for assessment of research or clinical care that patients actually agree are relevant i.e. recovery from ME means not having ME at all, not partial relief of symptoms.

 

I think JLA looks to fill gaps in research , so I don't know how replication sits within that framework.

Given COVID there is perhaps more chance that top 10 research questions formulated at the end may actually attract researchers and funding.

I agree with @Andy ' s suggestions.


Pre strong coffee off top of head
a bit more digging with decent research into epidemiology, identification of subgroups ,

basic stuff like how many who " recover" from teen illness eventually relapse

quality of life and impact on living ( for debunking)

So many aspects that need research.

For kids some assessment scale development that actually reflects reality and takes account of common comorbidities.

From bits and bobs from the Scanfinavian thread families who had a kid with ME and a kid who developed an acute " treatable" illness ( cancer) only got appropriate help via accessing the cancer support pathway.
A comparative study which recognises this kind of thing would be good if in the right hands .

Delving into differences in males v females for symptoms, gene expression , hormonal impact etc would also be good.

 

Further thoughts

7. Clinical disability research - can our impairment be measured in an objective and accurate way?
8. More a sub-category of above. Can PEM be objectively measured and standardised?

 

Looking at cognitive function, using Stroop-type tests, not questionnaires.

Also repeating them to show "fade" over time. @Graham was looking into this

@Joan Crawford, could you suggest the types/names of available testing that demonstrates impaire cognitive processing.

 

I think we still need a good basic ‘natural history’ or description of ME:

• That is what symptoms are present, but also are there any groupings or hierarchies of symptoms. This hopefully will lead to better descriptions of PEM, increased fatiguability, orthostatic intolerance, etc.
• What co morbidities are present in what percentage, do they pre or post date the onset of ME? Can we decided if they are symptoms of ME or accidental associates? People diagnosed with ME need to know from the start how likely they are to experience which of the various food intolerances, IBS, POTS, etc.
• We need larger studies setting out the biology/physiology/genotypes of ME, so we can say if the current identified biomarkers are common to all with ME or whether they identify subgroups. Hopefully also this will lead to identifying which if any of these are unique to ME and are potentially diagnostic biomarkers.

 

No more 'research' on 'therapies' until they have a better idea as to what is causing the problems.

 

My concern with this process is that it's easy for a brief patient 'priority' to be interpreted in a range of ways and then be used to justify giving more money to someone like Crawley to do poor work that makes things worse.

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

 

Hi, yes.

V Briefly as I'm between clinics:

there are several options that can show neuropsychological reduced or impaired functionality. Examples include PASAT, Stroop, Selective Reminding Test, Purdue pegboard, Finger Tapping Test and so forth. The tests that show issues the attention, divided attention, fine and gross motor control and short, working and longer term memory issues best are ones requiring intensive effort with time pressure, time delays on recall, requiring swift, time bound accurate responses. Auditory information processing is often worthwhile investing including complex tasks eg PASAT.

I used all of these in a testing battery and then pts completed a cognitively onerous task and repeated the battery using equivalent tests.

I'll look out my abstract. Remind me if I have not done this

 

It's hard to find a way of phrasing things that's Crawley-proof. We need to be submitting full protocols!

 

Lots of good suggestions. Just one observation. Some of the suggestions including mine at the bottom here can likely be picked up by the BPS types (and they will just so they can predetermine the results).

I'm not exactly clear on the precise remit of JLA and what may not be appropriate but I think even so just making a clear statement of patients want three things related to any future research a) harassment etc allegations looked into as Trish has mentioned b) no more pretend science (I leave it to others to restate that effectively to include the qualities of real science) c) transparency of funding and of protocols and of making data available.

As you can see I've quoted others for some of my priorities. I'd like to add that while there were others who had suggestions I think are very worthy of investigating I think we run into the problem of science not yet far enough along to really get specific research questions answered. I'd love to have some useful understanding of hormones wrt ME. But how well does medicine really understand the hormonal system? for example.

I would like to see a longitudinal study that follows newly ill without any therapeutic intervention to determine the difference between post-viral illness that resolves over X how long and ME that does not resolve.

I'd begin and end the whole process by stating again and again strongly what science actually looks like (referring to things Trish has mentioned). This is what patients want. No more meaningless Junk. We want science.

 

The lack of biomarkers and practical diagnostic tests is the root of so many of our problems.

 

There are some people I've seen posting stupid and offensive things on twitter. There are more people posting things that don't make much sense, or accusations that get details wrong. That could be used to justify the accusations of organised harassment by those doing legitimate forms of advocacy? Also, some academics seem to genuinely see legitimate forms of advocacy, like useful FOI requests or legitimate complaints, as 'harassment'. Who would do this investigation and what would be the specific accusations investigated? I can easily see that back-firing too tbh.

Given the sort of people in charge of how these priorities would be pursued, this is really difficult. Maybe we need something really precise? But would that ever get through the system?

 

Ensure medical trials record and store trial data in accordance with a properly architected data system. Especially ensuring that non-anonymised data are held in a separate database; anonymised data is then very trivial to access in the future - no special expertise required.

The personal details database needs only to hold an individual's personal and identifiable data, along with a unique identifier of some kind for that individual; none of the trial data itself would be in this database. The trial's data database holds no personal details whatsoever, referencing individuals only by their unique identifier. As necessary the data system correlates the two via this unique identifier.

If any trial data genuinely considered to indirectly help identify an individual, then a trial's database could be designed to make such data taggable, so it can be readily isolated if need be. But this must be designed in up front, it is only a mess if left as an afterthought. But oversight would need to be built into the protocol to ensure this feature was not abused.

If the above is done then there should be no time limit imposed on accessibility of data due to availability of individuals with the requisite expertise, it would become a non-argument. Such accessibility would be a foregone conclusion for so long as the data itself existed. In which case it should stated that the anonymised raw data will be guaranteed stored and accessible for a minimum prescribed period, 100 years maybe.

Every trial protocol should prescribe that the above is to be done, how it is going to do it, and the means by which investigators will be held accountable for it being done. Maybe it should even be part of an ethics review, given it is highly unethical for a trial's raw data to be inaccessible to proper independent peer review process; reviews should not necessarily be confined to investigators' second-hand interpretations and analyses of their data.


I also think, in due course, there should be some formal standard agreed upon of how trials data should be managed and handled, pre-, during and after the trial, and that once established then trials not even allowed to get off the ground unless they stipulate they will abide to that formal standard.

 

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!

 

Many of those initial studies on biomedical science are too small to be significant, they need funding to follow up promising results and see whether or not they still hold up

 

Please do start filling in the "survey". It is mainly noting down your research priorities in 3 boxes. You can put several questions in a box.

You can also complete it more than once, though probably not weekly!

There is one required question re confirmation that you have ME or CFS.

Other demographic questions are optional to minimise the exertion required, for those who are more severely ill.

The demographics will be used to follow up whether we are reaching a wide range of PwME/carers etc, so that if we don't hear from a group such as parents we can focus on them etc.