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

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.

 

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I don't know exactly how these things work, but I think it would be a pity if your unpublished work stayed completely unavailable.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.
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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

https://twitter.com/user/status/1505831682829660165

https://twitter.com/user/status/1505886904214040576
https://twitter.com/user/status/1505966773971353601

https://twitter.com/user/status/1505889538379550729

https://twitter.com/user/status/1505890348610035712

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.

 

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).

 

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?