(2022) "Weʼre raising £16,000 to Continue Dr Geraghty's Vital ME/CFS Research"

[Tom: Best of luck to Dr Geraghty with his fundraising to support his important research. I know he also does a lot of peer review work which is unpaid and can be very time-consuming but important to ensure it's harder for questionable claims to be published in peer-reviewed journals. Aside: We in the Irish ME/CFS Association have given €7000 from our research fund to support Dr Geraghty in recent years]

https://www.justgiving.com/crowdfunding/keith-geraghty

Weʼre raising £35,000 to Continue Dr Geraghty's Vital ME/CFS Research

Manchester UK Health and medical

Story

Research and Patient Advocacy

I am an unsalaried research fellow at the University of Manchester who relies on grant income and support from charities and donors. Over the past 10 years, I have been a committed advocate for people with Myalgic Encephalomyelitis (ME)/ sometimes called Chronic Fatigue Syndrome (CFS). Over those years, I have published many research papers on different aspects of the illness, particularly treatment. I was instrumental in raising awareness about the flaws in major clinical trials, such as the PACE trial, that claimed great success treating ME/CFS with either CBT or Graded Exercise Therapy (GET) along with standard medical care. I highlighted major problems with the trial’s methodology, some of the conflicts of interest the lead researchers possessed and concerns about how improvement and recovery were measured. I undertook a meta-survey analysis and showed that to the contrary, most patients found Pacing approaches more beneficial and few found GET helpful, in fact, a significant proportion of people with ME/CFS found GET harmful.

I wrote a detailed paper on the lack of scientific merit underlying the CBT Model of ME/CFS. I added papers on Harms associated with the biopsychosocial approach to ME/CFS and medically unexplained symptoms. With my colleagues at Manchester University and elsewhere, we have written about our concerns in professional journals, such as the British Journal of General Practice, that is read by working frontline GPs. My goal has been to focus on education of health professionals, this is one way we will improve care for people with ME/CFS.

NICE Guideline Changes 2021: Thanks to my work and the ongoing work of other ME/CFS researchers and patient advocates, NICE UK undertook a review of evidence and decided to withdraw GET as a recommended treatment for ME/CFS, and to change how CBT is to be offered. People with ME/CFS will now be offered advice on pacing and energy management. There is more work to be done to ensure these guidelines are implemented correctly and are understood by frontline health care professionals.

Doctors with ME (DwME): In 2021, I had the privilege of being made a director of Doctors with ME, working alongside my fellow directors, we are doing a great deal of work to educate health care professionals, engage researchers and clinicians and promote awareness of ME/CFS.

Publishing: I have published a number of papers in 2021, I have two in submission and 4 others to bring to publication. To enable me to speed up this process, which is very slow due to the time needed to do research work, write papers and submit for review and publication, I need to recruit a part-time research associate. Part of the funding I am seeking for 2022 will go on paying a research associate to help me get more of my papers to print.

I am running my 2022 Crowdfunding campaign for a few weeks in late March-April. I ran this in April 2021, and thanks to your support, I was able to totally focus my attention on ME/CFS this past year. There is much more to do, and we need more hands-on deck to get even more done, so your support this year is vital.

WHERE WILL THE MONEY GO?

All funds donated will be used on research costs. It costs around £50,000 to salary 1x research fellow per year on a full salary (total salary and benefits), it costs around £40,000 per year for a research associate. Your donations will help part-cover my salary costs and support a research associate who will work with me. We will use the funds to dedicate as much of our time as possible to ME/CFS in 2022-2023. All expenses involved in what I do are covered by Crowdfunding.

COMMUNICATING MORE

In 2021, I promised to set up a dedicated website that will host media, videos and podcasts discussing our work and more. This didn’t happen, mainly because a great deal of time, many months in fact, went into advocating for ME/CFS before and during the NICE round-table meetings to decide the final version of the ME/CFS treatment recommendations. This process lasted many months, so delayed my ability to focus on social media, bar my twitter feed. I wish to make my research findings much more accessible to all and I want to engage more with people living with ME/CFS.

Social & other Media Plans: I am about to launch an ME/CFS science channel to publish online content, such as videos or podcasts on different aspects of ME/CFS science. The first short video is almost ready and will be posted very soon (before or in April 2022.

I hope this has given you an insight into some of the work I have been doing over the past year, it certainly doesn’t cover everything, including peer review work, meetings, scientific conferences, and grant applicant drafting and submissions, but this is all part of what I do on a daily basis in my ME/CFS work. I am very passionate about this work and hope to continually do more to help improve the lives of people living with ME/CFS.

Thank you all for your support!

Keith

 

People can also share it on Facebook. I have pinned a post on my Facebook page:

Code:

https://www.facebook.com/TomKindlonMECFS/posts/2213786995436080

 

I won't donate because it is very unclear what he is researching specifically therefore I have no idea what impact if any it would have. If he wants to advocate as he has been thats great but I am not funding single person paid advocates.

 

I know Keith has struggled for funding. It is not easy in academia, and it's probably worse in field a like ME/CFS. But I have no idea what he's applied for, how his proposals were rated, and why they were rejected. I also don't know if he's applied for salaried positions such as fellowships. I don't feel crowdfunding is a long-term solution.

Again, I stress it is not easy, and Keith seems to be working on ME/CFS when following other topics and interests would be more beneficial to his job stability and career, but I agree that Keith publishing some of this info would be beneficial to his fundraising.

 

Link to Dr Geraghty's academic research profile and publications:

https://www.research.manchester.ac....ty(69f355a0-3cbb-487c-b387-c99a50446dd8).html

 

I think Keith's gripes are a reflection of reasonable frustrations even if a bit rough edged.
I personally think there is every reason to fund people who have done something useful rather than for what they might claim they might do next. Keith has made a major contribution and is worth funding.
I am not sure that he can expect funding for an assistant though.
It is a tough situation and I would want to try to compete in academia these days because everything is so loaded against anything worthwhile.

 

I think that is a good analysis of the situation Keith finds himself in. Pretty much any paid position he can get would take up so much of his time and energy (as he has ME), that he believes he wouldn’t also be able to do his ME work.

 

Agreed.

 

Mod note: This post refers to a now deleted post with a link to two tweets, one of which has since been deleted

If I can address your comment first. he “denigrates the DecodeME team as not being "actual ME researchers” – actually you have imputed that underlined statement, it is not one I made or would ever make. I certainly chose a poor word-phrase when I said “actual ME researchers” when talking about myself – I had no intention and didn’t even consider any implicit assertion about others “not being actual ME researchers”. I understand you are involved with DeCode also. So, thank you for highlighting that some people may adopt a totally different interpretation on what I was saying, so I have deleted that tweet. One can’t always get it right on twitter, in a short tweet, in response to many threads, every single day. I enjoy working with many different organisations and people all the time, although it doesn’t always go smoothly every time, I don’t think I publish a paper on my own these days.My comment on PACE funding wasnt about PACE, it was about after PACE in 2017, PACE was published in 2011. I em entitled to comment also sometimes, just as you are here,

Trish

I can share more about what I do and plan to do over the next year. I do a lot of review work; almost weekly I review papers submitted by researchers to various journals on ME/CFS. This work goes unseen. It may not appear of high importance but being a reviewer has allowed me to contribute to the science of ME/CFS in a valuable way. On complex papers this can take a day or two per week.

I mostly work on my papers and getting them published on different aspects of ME/CFS and MUS science, that I try publish during the year. Very recently, I co-authored a paper on ME and LongCovid, to be published in the Journal of Health Psychology entitled "Long Covid at the Crossroads: Comparisons and lessons from the treatment of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)" with another first author researcher and Dr Blease at Harvard. This paper will come out shortly.

I have another paper in late-stage submission in the same journal. I am currently responding to reviewer requested changes along with my co-author. To give you an idea of how long it takes to get one paper published, the paper took around 6 months of review work, if focuses on a study following patients with glandular fever to see whether they developed CFS, that prospectively examined their psychological traits to garner evidence for the Biopsychosocial Model of CFS and a CBT model approach. Myself and my co-author have gone back over that data and found some issues with changes made in the study methods that helped boost the validity of the results. We present a secondary review type paper. We submitted June of 2021, we had reviewer comments back just before Christmas 2021, we spent two months editing and are now resubmitting. This will give you an idea of the length of time and effort it takes to get a paper accepted – if at all, given reviewers can even reject papers.

Last year, I wrote a paper on the NICE Guidelines and the issues around whether GRADE was used correctly, in response to papers by doctors who were suggesting NICE gave into patient pressure and got it wrong, ie they misused GRADE. I wrote a counter paper, and submitted to a journal I was an associate editor of, the BMJ Evidence-Based Medicine. The paper went through 3 rounds of reviewer comments and I eventually won reviewers over but the editor pulled the paper using editorial decision, despite reviewers being happy for the paper to proceed to publication. That was many months work that came to nothing in the end.

NICE; people may know that I co-led a team of researchers at the University of Manchester, and we ran a survey with people with severe ME. As it turns out, that survey got the most responses and once we publish a paper on our findings, this will be the largest survey with severe ME patients ever taken. I wrote a report, which is attached to the NICE guideline evidence which is free for anyone to read – and we presented our findings to the guideline committee, and I dare say our survey gave the committee a good insight into the needs and perceptions of people with severe ME.

See report here: https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwjWjZe96df2AhV1QEEAHRBkCr0QFnoECAYQAQ&url=https://www.nice.org.uk/guidance/ng206/documents/supporting-documentation-3&usg=AOvVaw3R8onQecX0jtOK37-6h8Ig

Drs for ME, associates and fellows, have done a great deal to represent the views of people with ME during the entire process, which included some Royal Colleges speaking out against the guideline. I tried to engage heads of those organisations to speak to them directly about my work, my findings and what I see – and to ask them if I could address any of their concerns.

The process of engagement with NICE has not stopped, there is not much more I can say on this, other than the process continues to this day, about how the guideline Is to be implemented. And I have been actively engaged in that process, alongside colleagues.

Education:

I mentor nurses, medical students, PhD students and others, and I try encourage them to get involved in ME research. I mentored a nurse at the University of East London for the past few years and she achieved a 1st class nursing degree a few months ago and is now working at a top London hospital and she hopes to do more on ME/CFS.

I have helped organise sending medical students to conferences, I engage with researchers and patients who want to do research daily, my email in-box is full daily, and I respond to everyone, worried patients, concerned parents, bachelor students, post-graduate students. I sent a trainee GP to meet a charity group in Northern Ireland who donated some money to us at Manchester to pay him to assist on an ME project. He went over and met them and attended one of their events. Unfortunately, he moved on in his career. It is extremely difficult to keep anyone involved in ME research, I struggle to pay myself, so I have little chance of paying -co-researchers = at present.

If you want to know more about what we are doing re Education with Drs with ME, I think their website gives an overview- I cannot take the credit there, I only assist as much as I can, with Nina and Robin and Richard, and other associates and fellows literally dedicating much time to education and advocacy.

When 2 hands are not enough?

At this present time, I have 4 papers in draft form that I am seeking to finalise, write up and publish, in fact I have so many papers left uncompleted due to all the tasks I do, I need some assistance getting them done, I was considering using a portion of my Crowdfunding to pay a research associate to help me get more papers published. My aim is to get more papers written up and published more quickly, 2-3 papers per year isn’t enough or fast enough for me, I want to do more and to this end, I need secure funding for myself and, and if possible, I would allocate a small part of my funding to an assistant who can help me extract patient survey data, help run some statistical tests or help draft papers, although I tend to do most things I can myself.

Twitter – Funding - Career Opportunities Outside of ME

I think it was unfortunate that I mentioned Decode alongside describing the difficult landscape of seeking funding support to continue to do ME research. The reason for that was because someone tagged me asking me to promote funding for a new breakthrough project – which I assume is the Decode group.

As Prof Edwards points out, it is not easy for any researcher today. The original point I was making – which is – Decode has received almost £3,2 million in funding from the MRC and NIHR to date, over the past few years, and extra charity support to pay PhD students and junior researchers, which is fantastic and I support this and hope they will make some very important breakthroughs. However, I do find it difficult to read statements about getting more money for large projects (into the millions), to “encourage new researchers into the field”, or to attract “new blood”, when myself and others have found it very difficult to secure funding support on the ground. I am just one researcher, so I fully understand the importance of a large projects. I tweeted that it feels unfair to find myself in a position crowdfunding, whilst many millions of pounds in funding may go to the same research centre again – this is not to say that funding isn’t important and vital, it is to just to raise the question about representation of all researchers based in the UK, who might be struggling to keep doing ME research. Let’s not try recruit new blood, whilst letting the experienced blood drain away. Many ME researchers have moved on. I have done my best not to give up – hence why I tweeted on this topic.

I commented, that we need more support and I would argue that one of the greatest changes in ME treatment over the past 18 years, has been the recent NICE guideline change, which will impact every patient with ME in the UK. I would like to think I was part of the group of researchers and advocates that made that possible.

I could say nothing on social media or elsewhere and leave the field, and focus on career opportunities in other areas. Just last week I had an interview and potential offer of employment at another University, that I turned down because it would leave so little time for ME research. A senior person at Manchester wanted me to undertake a commissioned bit of work, it was well paid, but it would take 4-5 months to do full-time. I have to make choices between doing ME work and doing other work – that is a very hard choice. I cannot do both. Hence why I tweeted on the topic of funding and the need for charities to not only support large scale projects but also consider researcher like myself, who might be struggling to stay in this field. Most academics, from the most junior person in the department, including the PhD students, to the highest person at the University, are salaried. I am not. I am sure ME research would continue without me, I know I am just a small cog in a big wheel, but I would also like to think I have contributed. Crowdfunding and charity support has kept me in this field over the past few years, without it, I would most certainly not have been able to continue. I am very grateful to all the donors and charities who have supported my work.

If you have any specific questions, I’d be happy to answer them on here.

 

Other researchers being funded, even those you mentioned by name, does not anger me, this is normal in academia, every academic I know has applications for funding rejected from time to time, most academics have their papers rejected often, even leading academics at the very top of their profession. if a grant I write up and submit for funding is rejected I am more sad and disappointed than frustrated, because I believe in my work and I know how much good can come from new research in this area, on ME, MUS and LongCovid - they are all very much linked.

I was asked on tweeter to retweet support for a new project, I said to quote, “that may be good BUT…” and that but was, I cannot blindly call for more millions for any other research group when I am struggling to get funding myself to stay in ME, and I know of other UK ME researchers who struggle also and I know of others who just left. Genetic studies can cost a lot and there is no guarantee that any genetic marker for ME will be found. There are other valuable types of ME research happening also. I stand over my point about how we support ME research in the UK, if you want one big genetics study that is fine, I may well have to give up soon, if support remains problematic, and start exploring other options. The people who have been most vocal about me in the past few days have mostly been connected with the DeCode study. For some reason, they feel my points about funding in some how detract or undermine their calls for more biomedical research. They are in fact, advocating for the research they want, whilst telling me I should not speak up for the funding I would like to see. Some of my words have been taken out of context to make out I was speaking badly of fellow researchers, when this was not the case – that is what I came on here to address in person. I hope I have given an account of some of the things I have been doing and with the current situation I may look at things very differently going forward. As I said, it’s good to attract new people, not so good lose good people already in place.

 

I understand Adrian – first the GRADE and NICE paper was last year, pre-round table, when things were still very uncertain and two papers were publishing, one BMJ, attacking NICE for making a mistake on ME/CFS. That example was an illustration of bit of the work I was doing and how much time goes into writing just one short paper, that can and was rejected in the end. Thus, isn’t visible to all as output. That overall issue has not gone away, only recently researchers in Norway wrote a similar paper in the Lancet. We also have the ongoing issues around ME evidence reviews at Cochrane – where the GRADE and other issues are front and centre.


I have called for more biomedical research over the years and almost conclude papers with that mantra. However, I shall say this again, when I was asked on Twitter to support a project that hasn’t been made public, which appears to be the next evolution of the DeCode project, I made comment that this is not the only research needed in ME/CFS. Are we promoting biomedical research with one group, or could we promote the need for funding for other types of research also.

To become a professor today, you have to be good at winning grant income, this is the main route to becoming a lead researcher, and I have observed many large scale biomedical projects come and go over the years, around the World, whilst my research continued and I think my papers have impacted the care of people with ME today. As I said above, I will be considering my ability to remain in this field very carefully now. Sticking with ME research often alienates a researcher, given other academics view this area as controversial. So even doing ME research puts one into a category of “controversial” which isn’t a very self-serving place to be when trying to win grants or make it in an academic career. Many senior people advised me to give up on ME over the years and focus on myself, but my dedication to this area and trying to help people with ME overruled the logic of trying to career build.

Many ME patients and some charity organisations have asked me to set up a YouTube or media channel to make my work more accessible, yet other people seem to think thats a bad idea and I shouldn’t be asked for Crowdfunding for that type of activity, it’s not the remit of a researcher fellow. David Tuller is a Senior Fellow and his Crowdfund is almost entirely for patient advocacy type activities – if he won’t mind me saying that (he is a friend). It seems that even my effort to respond to a call from patients about doing more media evokes some negative comment in others. Drs with ME, 4 very dedicated directors and highly trained professionals, have had very negative comments on Twitter, I have not seen the same level of upset about that on this forum as has been generated by my few comments that we need to fund other research in addition to DeCode.

I stand by my convictions, people sometimes ask me to support a new drug study, and when I look into it, I may not feel that money should be spent on that type of drug, or we have seen studies like Rituximab, I had my doubts about that also, but people were fully behind it. We will not always agree on things, but I think I have engaged with everyone over the years, including the PACE authors, patients, and anyone who contacted me. Patients and advocates are fully entitled to support their favoured study, and I don’t expect anyone to support my work either, I hope they might.

Thank you for your feedback.

 

Thank you Keith, the work that you do deserve to be supported, is important, and I will make a donation.