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

[Adrian]

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.

I guess there is a question here about how you see yourself as a researcher and how you can be effective. An alternative view point (and I'm just putting this as something to think about and it is not a suggestion) would be to build expertise and reputation in the overall area of your work and then use this reputation to do some ME research and pull others in. Rather than concentrating just on ME, where I suspect it is really hard to build a reputation. With the former you may do less ME research but the research may be taken more seriously if you can build a reputation. Even in these days of double blind reviewing I find that reputation is really important. I'm a reseacher in a very different field (cybersecurity) and I notice than many really good reseachers build reputation by having expertise in particular techniques/areas and apply these over a range of problems - and they do get listened to when they speak. This may be a strategy worth thinking about in terms of branching out into other areas (whilst keeping some ME work) and building a reputation that will help your ME reseach be noticed and taken more seriously by a wider community.


I will say lots of my comments are really concerned with how you communicate the importance of what you are doing and the need to do so that doesn't assume patents know the academic world. You should think about the messages you are giving as (at least to me) they are not comming across as positive (and I think they could in terms of the work you are doing).

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.

For any research you need to spend sufficient money to get solid results. One of my issues with alot of the ME research is that it is on too small a scale so we get research that makes conclusions on the basis of insufficient numbers of patients to really say anything solid. We need the high quality research that will produce solid reliable results and that means spending larger amounts on studies. If spending less on a particular area means not having a sufficiently large study for reliable results then there is no point in spending anything in the area.

 

[Keith Geraghty]

I'm always open to feedback on how I communicate, I am on twitter daily, one cant always get it right, 365 days a year over many years. I have addressed all issues raised in this thread and hope this helps.

 

[EzzieD]

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.

Thank you so much for your dedication to helping those with this much-neglected disease. Your work is important and very appreciated.

 

[Art Vandelay]

Thank you @Keith Geraghty particularly for your work debunking the BPS paradigm. As an indicator of the usefulness of your work, I've used, cited and referred to a number of your published papers in various submissions and letters to politicians.

 

[Keith Geraghty]

Thanks Art - over the last few years the one really positive thing has been that psychologists and drs have started to contact me in private and say they read my papers and it changed their minds. Only recently Gez had a podcast with a clinical psychologists on LondCovid and she said she was trained at Kings on CFS and she has totally changed her views and ideas about management of ME/CFS and LC, but whilst at Kings she bought into the CBT Model of CFS.

If just one professional changes their perceptions on ME/CFS, dr, nurse, psychologist, imagine the impact on the patients they will see with ME or MUS in the future, present or new patients. That is what my work is all about, engaging professionals, reviewing the science, seeking to change perceptions and treatment protocols - and we have that change by NICE no longer recommending GET. My CBT Model Critique paper took over a year of review work, going back over the literature - so I understand people can say to me, "well papers are well and good" but talk more about impact! Papers have impact, scientitists log onto pubmed and read papers to educate themselves and evidence reviews, whether that is NICE or Cochrane or other, go over the literature. WIthout paper publications, there is no counter to the bad science that has flooded the literature on ME/CFS during the 1990s and 2000s. There is still a lot of work to be done.

 

[Trish]

Hi Keith, thanks again for joining us to share more about your work.

First a couple of small comments:

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.

I don't know exactly how these things work, but I think it would be a pity if your unpublished work stayed completely unavailable. Would it make sense to publish it on one of the preprint sites? I know that probably doesn't carry any academic weight, but at least it would be there for historical record and available to be quoted in appropriate circumstances by others.

DeCode

A correction. The research project is called DecodeME.
________________

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.

I think you are referring to my post responding to your tweets about your You Tube channel plans. I also replied to you on Twitter. I have only linked Keith's and my tweets here, not those of others since they are not relevant to my point.

Spoiler: Twitter posts by Keith and me

As you can see from the twitter conversation, I thought it was fine for you to put videos about your own work on You Tube as part of your communication of your research. To me that does fit into the role of a research fellow. What I was querying both on Twitter and here was your apparent ambition to make a broad ranging ME Science channel, which could consume an enormous amount of effort and would duplicate the work of others. If you call it something like ME Science, that implies covering a wide range of biomedical work as well as your own work. That was what I was concerned about. I think you would agree that is a legitimate thing to query, especially as you asked for feedback on Twitter about your idea. If you simply want to post the videos about your own work I have no criticism of that. I can see it would be a valuable resource.

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.

As for what happens on Twitter and elsewhere on social media, that's outside our control, and unless someone links to it from here, I for one rarely go there. I really dislike Twitter. Short tweets can lead to so much misunderstanding.

As to comments and criticisms here about Doctors with ME. I don't at all doubt the dedication and hard work of you and the other directors. But I also think it's important for any organisation producing materials and doing advocacy on behalf of people with ME to accept that they don't always get things right first time in the eyes of others and that people with ME and others with an interest in and knowledge about it are right to share any concerns and constructive criticisms. We all want your [edit: I mean DwME] work to be as effective as possible, so we naturally want your materials and social media and advocacy work to be completely accurate and clearly communicated.

I would be delighted and I'm sure others would too, if the directors and more of the members of DwME were to join the forum and share their ideas and plans and discuss issues and articles with us.

Edit: I decided to shorten this last section about DwME and the forum since it's veering off topic for this thread.
Further edit: I have removed some reference to material that others have removed from their posts.

 

[Keith Geraghty]

I agree in principle with trusting someone who has done worthwhile research to continue to do so without having to spell out everything he intends to do for the coming year.

I'm just concerned that at the same time as he says he needs funds for a research assistant, he also says he has spent a large part of the last year on some sort of advocacy we know nothing about and some sort of contribution towards the NICE process without explaining what that was, and it seems he intends to continue with such activities, including an over ambitious sounding YouTube channel on ME science and working with DwME. None of those seem to me to be part of the paid role of a University research fellow. They are the sort of things others of us do as volunteers, and would not ask others to donate for. If he wants to do them in his spare time, that's fine by me. But I don't want to donate for advocacy by any individual.

I have come on to address those about myself. I must go now and have a walk - so I wont be responding much more on this topic. Thank you to everyone for your feedback. Wishing you all well.

 

[Adrian]

My CBT Model Critique paper took over a year of review work, going back over the literature - so I understand people can say to me, "well papers are well and good" but talk more about impact! Papers have impact, scientitists log onto pubmed and read papers to educate themselves and evidence reviews, whether that is NICE or Cochrane or other, go over the literature.

It is about how you sell your work and the importance of it. I remember one of the jokes about papers when I was doing my PhD was most were only ever read by the author and reviews. So its not about saying papers are not important but rather talking about the impact that a paper (or other research contribution has). That is in what way has it improved the world or the situation for patients.

Isn't the impact the final goal after all. (and I think the research councils ask for impact statements these days and that is why Journals etc have impact scores). Even to talk about how papers were received by others in target communities can be useful - was the paper read, were comments made, is the work becoming influential (for example talks given based on the paper and audience reaction).

NICE or Cochrane or other, go over the literature.

Often though NICE and Cochrane are looking for primary research (i.e. trial results not commentary and analysis). Again when talking of impact its about will this influence a meta analysis (granted any actual inclusion will be in the future) but is the work in the right areas to influence reviews and policy making.

I do think if you were to talk in terms of why you thing the work is important and the way it influences and can influence different stakeholder communities your message would come across a lot better. The way I am reading your current call for funding is your will write come papers and it takes time to battle reviewers and a winge about research funding being unfair.

[EDIT - Adding this]
Tom's comment at the top:

[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. years]

Helps get to some of the impact and value in terms of making it harder for questionable claims to be published. I can immediately see why this is of value (although some quantification and damage of claims would be good but we know that here).

 

[Jonathan Edwards]

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

I am puzzled by this @Keith Geraghty. I was not aware that DwME had had negative comments on twitter. It would be useful to know about that. Presumably there has been no comment here because nobody was aware. I myself have significant concerns about the material produced by DwME and would like to help improve things but I worry that we are moving towards a situation where things are not being shared.

 

[Adrian]

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.

There is something I don't get here. The effort is to raise 25 or 35k (not sure which) but this is to cover part time salary and an RA (or help cover) so has funding from another source been found for the rest of the money?

 

[Keith Geraghty]

There is something I don't get here. The effort is to raise 25 or 35k (not sure which) but this is to cover part time salary and an RA (or help cover) so has funding from another source been found for the rest of the money?

I had an idea to use some of the funds to perhaps pay on an ah-hoc basis a researcher I sometimes pay to help me move work along, do data extraction and so on - as it happens I lowered the amount and will remove this - the feedback was negative on this idea. A research associate for 1 year to employ at the University costs £40-,000 or thereabouts - so i was just talking a few days here and there.

 

[Keith Geraghty]

I am puzzled by this @Keith Geraghty. I was not aware that DwME had had negative comments on twitter. It would be useful to know about that. Presumably there has been no comment here because nobody was aware. I myself have significant concerns about the material produced by DwME and would like to help improve things but I worry that we are moving towards a situation where things are not being shared.

Hi Johnaton - perhaps if you email me please we could talk about that, but first I would need to speak to DwME and this is a side issue really. I really must leave things here if thats ok, I have some papers to review and a deadline of tomorrow - ME papers submitted to journals, and I am behind. Thanks again everyone for the useful feedback.

 

[Peter T]

@Keith Geraghty, thank you for taking the time to respond to our comments here.

I wish you every success in the fund raising, as your work contributes significantly to the countering the misunderstandings of ME and overcoming bad research in the field.

 

[MEMarge]

@Keith Geraghty I think that your work challenging the psychogenic ideas about ME by the BPS brigade over the years has been very effective.
I will be contributing when you start your crowdfunding.

 

[supinewithaspine]

Hi Keith, thanks for providing a comprehensive description of your academic activity. I'm grateful for the work you do and hope you continue to make ME research your primary focus.

 

[Dolphin]

@Keith Geraghty I think that your work challenging the psychogenic ideas about ME by the BPS brigade over the years has been very effective.
I will be contributing when you start your crowdfunding.

That’s good of you. The crowdfunding has started https://www.justgiving.com/crowdfunding/keith-geraghty

 

[CMBRC]

I just wanted to express my gratitude & appreciation for all your invaluable work Keith.
It would be a huge loss to the whole ME community if you were to step away from this work now & I genuinely hope that this doesn't happen.

 

[Annie]

Adding my voice to the appreciation of your work Keith. Thank you for hanging in with us ME people, many desert us and we badly need academic research of a high standard now. I think a YouTube channel is a good idea as you suggested on Twitter.

 

[Keith Geraghty]

Dear all, thank you for your kind words, You can follow my work on there, I post my papers on researchgate, most freely available to upload, and there is my University site too. I will be starting a Youtube channel also, which will be a new way to engage with you all. Thank you for all the support with the Crowdfunding and in word, there is a lot more work to be done. Hope you can follow my work and keep supporting the funding drive. I do hope in the near future that I can secure some funding for mainstream medical funders.

 

[Tom Kindlon]

I see the target has been adjusted down to £16,000. I have edited the title.

Also