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

Discussion in 'Fundraising' started by Tom Kindlon, Mar 19, 2022.

  1. Adrian

    Adrian Administrator Staff Member

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    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).

    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.
     
    Last edited by a moderator: Mar 26, 2022
    Aimossy, Trish and Peter Trewhitt like this.
  2. Keith Geraghty

    Keith Geraghty Established Member

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    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.
     
    Last edited by a moderator: Mar 23, 2022
    Yvonne, Forestvon, Dolphin and 4 others like this.
  3. EzzieD

    EzzieD Senior Member (Voting Rights)

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    Thank you so much for your dedication to helping those with this much-neglected disease. Your work is important and very appreciated.
     
    Yvonne, Chezboo, Forestvon and 14 others like this.
  4. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    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.
     
    Last edited: Mar 22, 2022
    Yvonne, Forestvon, Dolphin and 15 others like this.
  5. Keith Geraghty

    Keith Geraghty Established Member

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    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.
     
    Last edited: Mar 24, 2022
    Braganca, Michelle, Yvonne and 18 others like this.
  6. Trish

    Trish Moderator Staff Member

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

    First a couple of small comments:
    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.

    A correction. The research project is called DecodeME.
    ________________

    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.

    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.

    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.
     
    Last edited: Mar 24, 2022
  7. Keith Geraghty

    Keith Geraghty Established Member

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    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.
     
    Last edited by a moderator: Mar 23, 2022
    Forestvon, Dolphin, petrichor and 6 others like this.
  8. Adrian

    Adrian Administrator Staff Member

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    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).
    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:
    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).
     
    Last edited: Mar 22, 2022
    Sean, Jaybee00 and Trish like this.
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    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.
     
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  10. Adrian

    Adrian Administrator Staff Member

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    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?
     
  11. Keith Geraghty

    Keith Geraghty Established Member

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    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.
     
    Michelle, Dolphin, petrichor and 5 others like this.
  12. Keith Geraghty

    Keith Geraghty Established Member

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    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.
     
    Michelle, JemPD, Dolphin and 15 others like this.
  13. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    @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.
     
    Yvonne, Chezboo, JemPD and 18 others like this.
  14. MEMarge

    MEMarge Senior Member (Voting Rights)

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    @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.
     
    Yvonne, Forestvon, mango and 11 others like this.
  15. supinewithaspine

    supinewithaspine New Member

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    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.
     
    Yvonne, MEMarge, mango and 8 others like this.
  16. Dolphin

    Dolphin Senior Member (Voting Rights)

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  17. CMBRC

    CMBRC New Member

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    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.
     
    Yvonne, JemPD, mango and 13 others like this.
  18. Annie

    Annie Established Member (Voting Rights)

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    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.
     
    Yvonne, JemPD, mango and 12 others like this.
  19. Keith Geraghty

    Keith Geraghty Established Member

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    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.
     
    Last edited: Mar 24, 2022
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  20. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Last edited: Mar 26, 2022
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