[UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

Says a lot about what that reputation really is, if it isn't the slightest bit interested in quality. It shows. It definitely shows.

 

From the PSP top 10 website

Looking at the psp document regarding the hubs, this priority doesn't have a place?
i wonder how was it decided to omit this priority from the plan? Because we have so few neurologists interested? It is probably the area of Myalgic Encephalomyelitis research that the UK has done least to incentivise. For me, neuro & cognitive dysfunction & sensory issues are some of the worst aspects of severe ME. From what I recall, cognitive dysfunction, because equal weight were given to mild and severe voices in the PSP, only made it to number 14 of priorities & the top 10 are being focused on, with number 7 omitted…. Unless it’s expected that brain, CNS and sensory issues will be covered by hub “Causes and treatments for Severe and Very Severe PSP5,9” but this isn’t indicated. The mental health platform has six hubs which seem to be covering every aspect of related psychiatry. I personally would like this area included & encouraged in UK m.E research.

 

There exists no such thing as the one and only way/modality/model for research funding allocation. That's because people simply don't/can't know what will pan out in the end. At best you can make sure that obvious nonsense doesn't get funding, but even that is fraught with issues. There are actually large, serious funding bodies toying with the idea to work with a lottery system. I think that goes too far but it says a lot about the complexity of the issue. In general, more funding is better than less funding, people saying something else are very likely biased and/or way too confident in what they think they know.

There are more or less 2 modes commonly used for funding allocation, 1. peer review process; think NIH and 2. executive allocation; think DARPA. Both come with pros and cons. From an outcome oriented POV it's best to run both modes simultaneously with sufficient funding with a long term commitment to attract large ('collaborative') labs.

 

Very often, but the ME/CFS patient community has achieved something very special - getting first rate people involved. It would be a pity to dilute that.

 

I agree, it deserves priority and you may well be right - there weren't any neurologists writing the protocol. It might be just as well thinking of the people who do seem to take an interest in neurology and psychiatry.

 

There’s a lot of differing points of view here. And amongst all the proposals, lobbying, charities, researchers… There’s the people I really care about. Patients, us.

So I have a quite simple question (although there may not be a simple answer). At this point in time what is the most effective thing we as patients can be doing to help make things better for us?

 

I love that question, though I don't know the answer.

 

Agree

 

I’m exhausted but replying to this because I think it’s important and I’ve had an uneasy feeling about this repeating old mistakes potentially so want to read through these points of caution again.

 

Keep talking and honing our understanding, maybe?

I don't necessarily mean reading up on biochemistry if we as individuals don't know much about it. It's interesting, but hard to get the breadth and depth to spot important questions that haven't been answered convincingly.

I mean sharpening up on what we do know, individually and collectively. Questioning what we might assume we know, but possibly don't. The leaflets project has given us something of a workout in that regard, and I think we can see the results in some of the discussions that have happened alongside or since.

We can apply a lot of collective knowledge and experience to questions about whether theories make sense or findings add up. We can also put it to good use when it comes to testing interventions or commenting on ideas for trials. It's crucial work that even those of us with no scientific background can do, but there's always scope to get better at it.

 

I’m intrigued to actually probe more into what really is the accurate situation here and how it works in these particular subjects.

how many of the type who would be valuable for me/cfs research are likely to be in what situations ie are their subjects and positions meaning they are on fixed term contracts or tenured , will they be able to work on projects of their choosing and to do so will they have to source funding?

what would whatever this new idea is involve and would it place power on some people or a group or who either directly or indirectly through choices they make ways they administer?

would those who are currently doing good research be affected by this? And how?

would said grants affect where people would need to be based - picking up on the term ‘hubs’ what does that actually mean?

 

Agreed. And your point 6. And thinking of current things underway like decodeME, sequenceME and now I’m going to stop naming individually because of that leaving ones out issue

but just as we might get some headway and good teams on things

whatever the results on the basis eg the gene stuff is objective and not like behavioural stuff with no null hypothesis then it can move things forward by at the least ruling certain things in or out in likelihood? And we start getting a literature if science stuff anyway that might want to knit itself together because we get more bits of the picture confirmed ,fir what they aren’t if just fit with as much as what they are)

I do worry that historically it has felt like over too many years just as things have turned a corner and something has collected up after a long crushing dystopia then in comes something else as some change or initiative that just disrupts that momentum and crowbars things back to people like bps getting back involved etc. Even though they’ve done their one-trick pony to death in iterations we know they are trying to do a surface level rebrand which seems as deep as a spray paint with proms, renaming their behavioural brainwashing coercion to brain training (after toying with re education in the middle)


Something about this tells me somehow it could increase more of those who aren’t good to start lobbying as if they are entitled to c amount of the spoils etc and embroil those just getting going in politics that with their current momentum they mightnt have needed it at all if things were just left open so that good achievement in current things starts a rolling stone for them. Importantly quality of output and methodology and researchers behaviour starts being the main thing that impacts /attracts funding (future funding ends up being based on past projects demonstrating quality and ethics etc)

I want to be reassured this isn’t just rebuffed with a snort and a pat phrase (as if I’m being silly and it hasn’t been the attitude before and then that’s what happened so it deserves to be guarded against and properly thought about)


I’m not sure and would like detail too when the selling points of supposed ‘consistent definitions/measures’, sharing data and PPI - and i blinking hope proper ethics would be added if they are doing it that way (to stop coercion being a big thing with subjective stuff) - are being mentioned

These seem like things that don't need a hub or this structure to do? I.e. is it a bit of a red herring as these things don’t need whatever this structuring is?

And also I can see how they will need to tailor to the appropriate research anyway eg if the research is going to be in severe people it needs more severe, if it’s on those with definitive PEM of a certain type or wants to attract a demographic of more minorities then the ppi might be changing to reflect. I’d hope it wasn’t the same few people in all the same research anyway?


Has anyone looked really closely at this mental health plan and the detail of it and whether it really has been successful and genuinely made things more representative of the actual illnesses and the wider patient population? Before we copy something based on that - I haven’t heard anything groundbreaking from that area myself

what I do note as a question is that given/if it comes from mental health are we giving a massive head start to all the researchers and their departments/kingdoms who have had that one as their dress rehearsal to set up all their funding support and templates for proposals and probably rejigged themselves and ways of doing things to play the game and be first off the blocks in applying for the spoils or positions that outsiders might not notice are surprisingly powerful ? But you don’t notice until you’ve been through it all etc (sometimes a specific admin position or committee position holds a lot of weight that you only realise as you get experience of how the processes work)

and really do these things map over to an area we want and are just getting for the first time to start to finally focus on the objective stuff and the ‘hard data’ stuff rather than subjective behavioural more for so long

. I’m afraid I’m cynical that the two areas are that similar in what they need even if that might have apparently been ‘better than what was before’ for mental health (but I don’t even know that - as people hint, no one can bite the hand they might need food from)

 

Agree - people can have needs and other commitments that mean they don’t have that choice.

I also don’t know what the norm is re other conditions or science and the competition for eg lab space as well as funding.

I don’t get whether these hubs however would give or increase security with long term funding of the type where actual infrastructure would grow on it or not? And if so how.

 

Agreed

it’s the meat on the bones that needs to be checked to make sure it isn’t an inadvertent step back/problem, not the vision and mission statement

oh for some developments where it’s just detail of the what, how and why and asking for those who’ve insight to offer to tighten it further

otherwise given how many leaps of faiths from people declaring good intentions the history of ME has been chattered with we just keep being faced with stick or twist arguments based on no one on either side actually knowing what something is and just having to talk about optimism or trust or being negative.

what sorts of things like this have ever worked properly and genuinely been a step forward in any area? And what made them work to achieve some big difference rather than just be initiatives people had to learn to jump through and work within ?

does this come with this additional funding or is the hope/claim that part will magic from where and why because of this? And how long will be spent on the ‘getting in line with it’ part.?

I’m open minded believe it or not to hear more on something that eg starts supporting research applications and development of research etc

but I’m a bit worn down to bare bones ideas we as patients are supposedly supposed to not ask too many details about without seeming ungrateful

 

This is interesting and good points thank you.

the Germany point is particularly interesting - do you know what the things that really worked there weee and the infrastructure of how they did it ie is this taking the best of that as an example?

 

That is so bad.

 

Good point

 

Interesting. do you have more details on it/what was proposed or intended and when vs what happened and how?

 

Important point

 

Does the fact this is being put out as a campaign after the March the delivery plan was expected to publish and several months after these behind the scenes moves/ discussions, indicate that the general response has still been negative which is why patient pressure is now being asked foror is the line from the DHSC, paraphrase, that the DHSC delivery plan publication has been further delayed “aiming for” June to allow further work with stakeholders to make the plan as ambitious as possible, covering serious discussions of these proposals? Or is this campaign now separate to the DHSC delivery plan?