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

[rvallee]

she replied in a way that indicated she wasn't the slightest bit interested in quality, just the MRC reputation

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

 

[Cinders66]

From the PSP top 10 website

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?

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.

 

[butter.]

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.

 

[Jonathan Edwards]

Wouldn't that always be the case, though? That any subject that attracts interest will attract more bottom-feeders since by definition most researchers are bottom-rate academics? Something universal to all industries, this is not anything unique to it.

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.

 

[Jonathan Edwards]

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.

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.

 

[hotblack]

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?

 

[Sasha]

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.

 

[bobbler]

One thing I was surprised NOT to read about. Having ME/CFS clinics tied to research.

If my reading of @Jonathan Edwards posts about his ground breaking research are right, he had a steady access to patients. How are ME/CFS researchers going to be able to access patients if they need to access fresh blood and process blood immediately to control their experiments. There seem to be no biomedical research clinics especially after funding for Julia Newton's team at Newcastle dried up.

I understand the almost universal plaudits for DecodeME but they "only" needed postal access with samples processed by an experienced team who had processed 100,000's exact same samples before.

Karl Morten was one of the only signatures on the researchers letters. Do people understand how many years and how many hoops he had to go through just to get the Raman Diagnostics papers(s) published. Again and again he had to add more samples due to peer review asking for more. And again and again he had to beg and scrounge to add another batch of patient samples to the pilot study cohort. Even with promising pilot studies there is no access to MRC/NIHR funds to do a proper sized replication study. UK biomedical research has been at a dead end except for the odd project or so.

And the US has funded a significant amount of UK research via LSHTM and now Brunel with Jackie Cliff. More than a dozen years of funding I believe. Without that funding there would have likely been no team to build the CureME biobank initially. The UK has to step up in funding. How is that going to happen if a research network linked to clinical access to patients is not built.

The Netherlands have a plan they are implementing. So is Germany. Please UK, catch up.

In the last CureME webinar they mentioned that samples are aging fast and they have a lot of available samples. Who in the UK is placed to use them for a good quality study that has funding?

Agree

 

[bobbler]

Funding individuals who have the talent to make a big impact is clearly good. Such individuals now exist in the UK and they deserve funding.

But I am sceptical that trying to build 'co-ordinating structures' makes any sense. Biomedical science moves by unpredictable shifts in one direction and then another. You cannot build ME/CFS units to cover all the sub disciplines staffed by people with talent. My experience has been that new collaborations form and dissolve along the way.

If you ask a group of researchers what plan they recommend, they will of course suggest a multi-hub model, in the hope that none of them will lose out. Each of them might prefer to say 'just give me all the money' but that tends not to get you anywhere. We have had people saying something like that but they don't seem to be part of the proposal.

I don't think we have evidence that planning co-ordinated superstructure is a good model in medical science. We have no controlled experiments so what evidence we have is as anecdotal as the argument for GET. It suits people to say so.



So, yes, but it isn't subterranean. It is on the table. But much more importantly it seems that the real problem is that the medical profession not only do to believe in ME/CFS but are now deliberately airbrushing it out. As someone has pointed out, there is no mention of a clinical service in the proposal and there is no way forward without doctors and patients. None of the people involved in the proposal as far as I can see are physicians actually providing an ME/CFS service.

What that means is that, much as one would like a fairy godmother to decide who should be funded, we are stuck with a system that will need referee reports from 'experts'. Just as we have had 'experts' from BACME settle back in to running the service side, as soon as experts are called in on the medical academic side the default will be to have advice from people who don't believe there is anything to study.

The situation has been desperate, as we all know. But I am pretty sure it is going to change very soon. Maybe the data from Zhang et al. proves nothing. I would still like to nail that. But if they have genuinely identified genetic risk factors for ME/CFS we now have a real biological process to study. There are several other groups whose work I think will fall into place but is not as yet published, or has to be taken as circumstantial evidence only as yet because it does not have the causal certainty of genetic data. I think it will come together and at that point things should change completely, because academic physicians will be interested and suddenly forget that they did not believe in ME/CFS.

I may be wrong, and there is definitely another lap of the 10,000 metre tack to cover, but I think things are going to change. It would be nice if one could bend the ear of the head of MRC and have them say 'Oh gosh, yes, we really should have been funding these projects' but I don't have that privilege and I have no idea what the reply would be today.

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.

 

[Kitty]

At this point in time what is the most effective thing we as patients can be doing to help make things better for us?

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.

 

[bobbler]

That's the thing, though - you had jobs. You were staff, not researchers on short-term contracts, scrabbling for grants to stay in the field. You could do your research on the side.

Also, you may have been unusual in working in an area that didn't need much money spent on it. DecodeME, for example, cost a lot.

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?

 

[bobbler]

I think multiple things can be true at the same time:

1. Ideally, we need more very good researchers in the field of ME/CFS.
2. The lack of funding for ME/CFS research has hindered basic research from being done.
3. A lot of the current research has been wasted due to poor methodology or hypotheses. This is true for all of medicine.
4. Funding and attention attract all kinds of researchers - and maybe more of the bad ones.
5. We need government funding do to large scale basic research like genetics, large cohort tracking, biomarker verification.
6. Really good ideas will likely receive funding today regardless of the bureaucracy in place.
7. An organisation might attract people that at good at playing the organisation game instead of people that are good at achieving results with said organisation.

I don’t think more funding, attention, or public organising is necessarily bad per se. But I don’t think it’s a guarantee for a better outcome. And it might not shift the scale at all.

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)

 

[bobbler]

But doesn’t that require at minimum someone to fund your salary and having access to a good lab?

Wouldn’t having more funding increase the chance that more people interested could have this ergo more probability of finding something.
I very much assume there are some researchers who are talented and rigorous and have a chance of making major discoveries in ME but shy away because of the poor funding and career prospects in the field.

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.

 

[bobbler]

It is not clear to me what is actually being proposed. Which is why I didn't join in on the working group I guess. I am not clear what 'Hubs' are.

I have also had a conversation with someone who has signed who expressed the same uncertainties - if not rather more baldly.

I think events will overtake this. It may do no harm but we don't want white elephant millstone hanging around the necks of those actually making progress.

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

 

[bobbler]

As you know ME research is at a very very low level in the UK and across the world - there are very few researchers who know anything about it or have any interest. On odd occasions when someone expresses interest they are quickly put off by the difficulties (things like bad review processes) and probably the lack of overall support.

So if we take say Decode coming up with interesting results then who are the researchers who will follow them up. Say that three potential mechanisms are identified then we need people who are experts in these areas to explore these. But the current situation is that its not easy; reviews are bad and there is a lack of infrastructure and expertise to support research (biobanks, data sharing, diagnostic methods, ways to measure severity etc). These things make doing research easier and having an organization (that needs to be backed by government) signals to researchers that ME research is being taken seriously (maybe helping to counteract the "don't go there you won't get funding its bad for your career".

So we need to create infrastructure and organization to help with capacity building. This is what the hub proposal is about. There have been research platforms created in other areas that are helping boost research. Equally look at how the German Government have put money into ME research and it has attracted lots of new researchers into the field.

I realize that you think ME research shouldn't get funding until some researchers spontaneously come up with work that will suddenly interest lots of researchers. But that will never happen. Something is needed to kick start research in ME and this type of proposal seems like a good way to do that.

I have also seen this type of approach being used in other areas (non medical ones where the government has identified the strategic need to increase research in some areas). Unfortunately I don't see medical research funders having much of a strategic view in terms of meeting the countries needs (they just seem to be a club for funding those within the club making small advances). Given the numbers with ME in the UK (400k + more with long covid) and the severity (leading to costs and high opportunity costs) it would seem important that the country invests in research (and discovery research). The other economic argument is that UK industry could miss opportunities as discovery happens as we don't have researchers knowledgeable in the area to take advantage of this.

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?

 

[bobbler]

The letter from the 9 researchers is especially interesting, particularly around the challenges with MRC. Open criticism of reviews as "highly inappropriate" is unusual & the mention of a reviewer stating that there "is a universal treatment" for ME/CFS makes me wonder to what extent psychobehaviouralist reviewers are still trying to squelch research that doesn't conform to their worldview:

That is so bad.

 

[bobbler]

Let’s be honest, the UK government spending review is coming up and this could be setting budgets for multiple years for many organisations including those that fund research. There’s also other events like the 10 year health plan and of course Delivery Plan for ME/CFS around the same time.

Look at the timing of this in that context. This is what effective lobbying groups do.

Good point

 

[bobbler]

This is what happened in Norway when we asked for a national competency service. Actually, it was worse because they actively work to undermine good research and to produce harmful research, not just useless research.

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

 

[bobbler]

I share this concern partly because it already mentally shoehorns ME/CFS into a 'post-infective illness' pigeonhole. That will immediately bring in the post-infective illness fast-followers that are so evident on X. ME/CFS does have an important link to infection but the last thing we want is researchers who think in these mental pigeonholes.

Important point

 

[Cinders66]

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?