I will say as a small counterpoint that I am sure there will be good young researchers who are dissuaded by these arguments, as I was dissuaded from pursuing a career in music when I was young. Not that aspiring researchers (or musicians) should be shielded from the financial truth of things. But if there is not also someone to tell them what the good things they will gain if they choose to risk it, they may balk at the warnings and end up making a compromise in terms of their career.
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[UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform
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I will say as a small counterpoint that I am sure there will be good young researchers who are dissuaded by these arguments, as I was dissuaded from pursuing a career in music when I was young. Not that aspiring researchers (or musicians) should be shielded from the financial truth of things. But if there is not also someone to tell them what the good things they will gain if they choose to risk it, they may balk at the warnings and end up making a compromise in terms of their career.
Kitty
Senior Member (Voting Rights)
Yes, I was dissuaded from trying to get into theatre. I did something sensible instead, ended up with depression for the only time in my life, and decided I was going into theatre. By then I was in my mid-20s, was less prone to suggestion, had understood that I genuinely don't care about money, and seen what dull, unsatisfying work does to people.
Similar thing happened to a musical director I used to employ, except he didn't find a professional way back into it until his late 30s.
We both got there in the end because we couldn't settle for comfortable shoes. Same thing probably happens in other careers too.
Yes, I had a similar experience with music, was just finding my way back to it when my health declined.
Hopefully if we have a finding breakthrough, and/or secure more funding from a proposal like this, some of those who chose another specialisation might be enticed back...
jnmaciuch
Senior Member (Voting Rights)
I guess I can give a personal account as a (very) early career researcher facing those prospects. ME/CFS is my whole reason for becoming a researcher, it’s the main problem that occupies my brain space, definitely a passion and obsession at this point. Obviously a lot of that is driven by suffering from it myself.
At this stage, I am supported by non-specific fellowship funding from my program, and soon I will be supported by a grant related to infectious disease. There was no possibility for me of studying under someone with direct experience in ME/CFS research, so I chose my PI based on expertise in Long COVID and computational work I am also interested in, and made sure that I would have some freedom to pursue side projects as they came up.
At the moment, my main problem is the low probability of securing a grant given that my PI does not have expertise in the particular experiments I want to do, collaborators are not too willing to join unless funding can be guaranteed, and I personally don’t have a track record of wet lab work due to my prior limitations that grant reviewers will be looking for. I also don’t have much ability to generate preliminary data.
Even if there was a mechanism where I could apply for support as an early career researcher, on paper I would not look like a promising candidate. Nonetheless, I’m calling in personal favors and trying to chase down every avenue I possibly can. My benefit is that those who know me personally know how fast I can learn and how absolutely committed I am to this question.
Once I am farther along in my career, it would probably be a relief to have some kind of bridge funding, something to support me through post-doctoral uncertainty. If that doesn’t happen, I will probably find a similar situation as I am in now, in an adjacent field but with freedom to pursue other side projects.
I’ve already given up on the prospect of having a well-paying and stable career, that wasn’t really my motivation to begin with and I won’t be deterred by the lack of it. I suspect it’s the same for many of the very motivated researchers who have ended up in the field for personal reasons. [edit: though I will say that having that stability would make it a lot easier for me to do good science in the future. Worrying about bills takes up a lot of energy]
At this stage, I am supported by non-specific fellowship funding from my program, and soon I will be supported by a grant related to infectious disease. There was no possibility for me of studying under someone with direct experience in ME/CFS research, so I chose my PI based on expertise in Long COVID and computational work I am also interested in, and made sure that I would have some freedom to pursue side projects as they came up.
At the moment, my main problem is the low probability of securing a grant given that my PI does not have expertise in the particular experiments I want to do, collaborators are not too willing to join unless funding can be guaranteed, and I personally don’t have a track record of wet lab work due to my prior limitations that grant reviewers will be looking for. I also don’t have much ability to generate preliminary data.
Even if there was a mechanism where I could apply for support as an early career researcher, on paper I would not look like a promising candidate. Nonetheless, I’m calling in personal favors and trying to chase down every avenue I possibly can. My benefit is that those who know me personally know how fast I can learn and how absolutely committed I am to this question.
Once I am farther along in my career, it would probably be a relief to have some kind of bridge funding, something to support me through post-doctoral uncertainty. If that doesn’t happen, I will probably find a similar situation as I am in now, in an adjacent field but with freedom to pursue other side projects.
I’ve already given up on the prospect of having a well-paying and stable career, that wasn’t really my motivation to begin with and I won’t be deterred by the lack of it. I suspect it’s the same for many of the very motivated researchers who have ended up in the field for personal reasons. [edit: though I will say that having that stability would make it a lot easier for me to do good science in the future. Worrying about bills takes up a lot of energy]
jnmaciuch
Senior Member (Voting Rights)
I will also put out there into the void:
If you took a couple of us very motivated youngsters, put us in a room together and told us that we were all individually guaranteed funding for the next few years so we ought to work as a team as much as possible, that would be a very powerful thing….
If you took a couple of us very motivated youngsters, put us in a room together and told us that we were all individually guaranteed funding for the next few years so we ought to work as a team as much as possible, that would be a very powerful thing….
hotblack
Senior Member (Voting Rights)
I’m all for us doing whatever we can to remove obstacles to people doing good research, including things which mean they can focus on that research.
It would be nice if talented people didn’t have to worry about or make sacrifices and decisions because of things like costs of food, housing or healthcare.
It would be nice if talented people didn’t have to worry about or make sacrifices and decisions because of things like costs of food, housing or healthcare.
The main threads which cover it are below, with the comments specifically by @InitialConditions (great work!) who has done the digging. It's not a groundbreaking uplift but if the average was 2 applications per year and the year of RFF they got 15 - in a climate of the organised SMC "ME patients are dangerous militants campaign", no university medical ME education; the RCGP guidance saying ME symptoms arose from deconditioning, the terrible NICE guidelines promoting GRADed exercise therapy etc (a mess of ignorance, misrepresentation & stigma the medical profession itself Created) - it's in my view worth repeating now, MRC council could take CBT to deal with the distress that funding ME research may cause. It’s not an effect that lasted beyond one year, but the funding wasn’t sustained so why should it? Building up sustained commitment to one of the most stigmatised, shunned illness, where we barely have any nhs drs working with patients, wasn’t going to happen in one year. This is why, as requested by our charity leads, ring-fenced funding should have been continued in 2013 - even if 2011 identified priorities were weak and not matching those of patients. Instead, in 2025, lack of capacity/ researchers is now again being used as , imo, an excuse to do nothing. In my view, ME patients are paying the price for MRC long refusal to support this area in a sustained and significant way..
MRC-funded grant proposals on ME/CFS by year, 2003–2023, along with the total number of proposals received that year. | Science for ME
https://www.s4me.info/threads/mrc-funded-grant-proposals-on-me-cfs-by-year-2003–2023-along-with-the-total-number-of-proposals-received-that-year.40814/#post-561944
UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation | Page 6 | Science for ME
https://www.s4me.info/threads/uk-go...oup-and-consultation.28181/page-6#post-488496
Members only - 1. UK: 2023 Interim Delivery Plan on ME/CFS consultation: Research | Science for ME
https://www.s4me.info/threads/1-uk-2023-interim-delivery-plan-on-me-cfs-consultation-research.34688/
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Kitty
Senior Member (Voting Rights)
It would. But then again, the amount of admin, management stuff, ego-stroking, and HR you have to deal with tends to rise in direct proportion to your salary.
It's not easy to find posts where on any given day, you could look up at the clock and realise six hours have passed and you were so absorbed you forgot about lunch. In a job paying the median national wage, you'd have had several calendar reminders and two unnecessary meetings by then. It soon blunts your edge.
OrganicChilli
Established Member (Voting Rights)
That depends on the job and can't be generalised I think. I had strict targets that were closely monitored by management in my early career whereas I had a lot of freedom and next to no meetings in senior positions.
Kiristar
Senior Member (Voting Rights)
Thank you for the links. And we'll done to @InitialConditions
But this proposal does offer sustained funding and so will start to build capacity and that sustained commitment . It's like awarding multi years of RFF, oriented on biomedical research into the patient prioritised JLA PSP topics, just plus funding the research facilities researchers say they need to be effective (Cohort, Biobank etc) all with appropriate PPI at its heart.
Utsikt
Senior Member (Voting Rights)
I’m not sure I understand how that would be achieved. Who funds what? Are the «hubs» given a predetermined budget they can spend as they wish?
I mainly have 3 concerns.
1)We are loosing this decade to talks as we did the previous ones
2) lack of specifics on funding - aspiration meeting need
3) that cognitive dysfunction, neurological & sensory symptoms don't have clear inclusion in the proposal
I know you’ve said this proposal wouldn’t take several more years but it isn’t part of this, so far, 3 year plan and would take further time. We’re loosing time/ life like sand through the hand & we've lost so many years already. I’m not against the proposal, and I’m pleased something solid has at last been put on the table but my constant concern is about the time we’re losing, trying to work with MRC red lines & preferences, when something (ie RFF) could be campaigned for & theoretically be done quickly and effectively with ministerial intervention, and this is an area calling out for significant and urgent action.
Regarding the specifics of the proposal, can you share how much money would be expected to be invested via the platform over 5 years? You state it's like RFF + infrastructure. As I put in my post previously, the mental health platform It’s modelled on was reported to be a £20 million investment, was that investment just start off costs or covering a period of time eg 3-5 years? How does that compare to the m.e platform aspirations & with it including me- type LC too, are we asking for enough, based on fair funding, patient needs, rectifying neglect & urgency?
Edited to add initial sentence about taking time paragraph 1.
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