Who are currently the best ME/CFS researchers?

M

MinIreland

Established Member (Voting Rights)
I am asking this question because I don't know where to start reading and I don't have the energy to dig through all the threads.

Yesterday, I posted an abstract from a recently published book on fatigue and forum members explained that this was not very scientific, which I totally accept.

I am quite new to all this and I notice that, when research is discussed here, half the time I cannot process all the information. Partly because of my cognitive problems and partly because the discussions are very 'technical' or 'clinical'. In don't have a medical background and I find it very hard to understand when the discussion is about X, Y, Z cells, genes, bone marrow etc.

So, my question is: Who are currently considered to do the highest quality of ME/CFS research? Perhaps that would give me, and others, a good place to start.
 
The most promising active at the moment are Chris Ponting and his colleague Audrey Ryback with their work on DecodeME; and the Norwegian team Fluge and Mella doing the daratumumab trial.

Occasionally there is work from Ron Davis’s team, and Maureen Hanson with Andrew Grimson.

The easiest way for me to follow the forum is look under new posts and if there is interesting publications, there’ll be an active thread. I don’t even try to understand the technical science stuff — I just read what forum members think about it if it’s promising. Someone will usually give a layman’s explanation.
 
MinIreland said:
So, my question is: Who are currently considered to do the highest quality of ME/CFS research? Perhaps that would give me, and others, a good place to start.
Click to expand...
I don’t have a medical background and most of my first two years as a patient were spent talking to other patients elsewhere about what this or that researcher said. The problem with this approach is that so much of the research simply isn’t good enough. So you end up learning a lot of falsehoods.

I think the better approach might be to try look at threads for papers and ideas that you find interesting, and see if someone explains why something is good enough science or not. If you can’t find any explanations or you don’t understand the ones that are there, you can just ask. That’s useful for everyone because it makes us explore our own understanding of something. There are no dumb questions.

It’s only when you’re sufficiently convinced that the research has any merit that it’s really worth it to get into a discussion about what the data means. Even then, the interpretations of the data here might diverge from what the researchers themselves say. A very common theme is that they go too far.

That being said, my impression is that there isn’t much to know about the biology of ME/CFS yet, other than that there are lots of things that are probably not faulty.
 
We won't know who are the best ME researchers until we know ME's mechanism. Then we can tell who was on the right path and who wasn't.

I don't think that reading any research papers at this time is going to help any of us find an effective treatment. If a paper--maybe from an obscure researcher rather than whomever is currently winning a popularity contest--has a really important discovery, I'm sure there will be a big announcement here.

I do read (or at least skim) some research papers, but that's for curiosity and hoping that I'll learn something that might help make some aspect of this disease make sense.
 
Braganca said:
The most promising active at the moment are Chris Ponting and his colleague Audrey Ryback with their work on DecodeME; and the Norwegian team Fluge and Mella doing the daratumumab trial.

Occasionally there is work from Ron Davis’s team, and Maureen Hanson with Andrew Grimson.
Click to expand...

Yes, to that I would add that Chris Armstrong and Dan Missailides in Australia (both forum members) and Jo Cambridge (UCL) and Jackie Cliff (part of the London School of Hygeine ME Biobank team and now at Brunel) have done a lot of good work on cell signalling and metabolism that isn't as high profile as DecodeME or Fluge and Mella's trials but has contributed to the general trend of thinking.

Hanson has produced a number of interesting studies but she makes some slightly odd claims and it is sometimes hard to find a thread linking all the work. I have no doubt that she is solid methodologically.
Creekside said:
We won't know who are the best ME researchers until we know ME's mechanism. Then we can tell who was on the right path and who wasn't.
Click to expand...

Being a good researcher isn't about being on the right path, it is about doing meaningful experiments. I think we have a pretty good idea who is doing that and who isn't. If the labwork is poor quality even if you are on the right path you won't get anywhere!!
 
MinIreland said:
So, my question is: Who are currently considered to do the highest quality of ME/CFS research? Perhaps that would give me, and others, a good place to start.
Click to expand...
But the other thing is that the most important message in all of this is that you never take anybody else's word for it. There are no short cuts. I have to rely on others for detailed interpretation of work in various fields but I have to make my own mind up in the end on the likely reliability of the result.

As others have said, since we know so little at present it doesn't matter a great deal. The key thing is to be aware that 80-90% of research findings will turn out to be meaningless.
 
Jonathan Edwards said:
Being a good researcher isn't about being on the right path, it is about doing meaningful experiments.
Click to expand...
Yes, but if they're doing really good studies, maybe even something that will win a Nobel prize, but it turns out that it has nothing to do with ME, then they won't be considered the best ME researcher. ME certainly seems to involve the immune system, but it's at least possible that all individual parts of the immune system are working properly, but the problem is a single brain cell that is responding to an immune signal improperly, so all the really good research on immune system functions won't help solve ME, aside from not wasting further resources on theories proven false.
 
Jaybee00 said:
Also Rob Phair (not sure if you want to call him part of Ron Davis’ larger group because he is not at Stanford).
Click to expand...
Really? I got the opposite impression, that he hasn’t conducted very many experiments to validate his hypothesis. His recent symposium talk seemed rather loosely based on previous work, not a lot of validation and lots of speculation.

Any chance you can point me to the work that has you convinced of this?
 
Dr. Edwards wrote this a few weeks ago:

Jonathan Edwards said:
All I can say is that this is still my general opinion based on a whole lot of different things. Even on the forum, although we have differences of emphasis on options, there is a sense that the mechanism is likely to have to a certain sort of shape involving certain sorts of signals driving a persistent disadvantageous state. And when an answer appears you can be pretty sure someone was working on it for a year or more without you knowing it. But I wouldn't really want anyone to 'calibrate expectations'.
Click to expand...
So it may yet appear that the best researcher is not even currently on our radar?
 
Jaybee00 said:
Yeah, I’m a fan. I think he is one of the best ME/CFS theoretical people and he is always pretty transparent that he could be wrong.
Click to expand...
I think we have got to stop thinking about being a fan of certain people/theories/etc. it’s not a popularity contest or what fits our world views.

If you’re recommending what research to follow I think it should have some evidence. Any reason other than his theoretical approach? I’m really trying to understand what he brings to the table that moves research forward.
 
Ron said:
So it may yet appear that the best researcher is not even currently on our radar?
Click to expand...

Absolutely, only this week we have seen a paper on Long Covid in mice, which most of us would have been very sniffy about, from people we have never heard of, which may shift our thinking in a major way. And good researchers tend not to make much noise until they have something interesting to present.
 
ChronicallyOverIt said:
I think we have got to stop thinking about being a fan of certain people/theories/etc. it’s not a popularity contest or what fits our world views.
Click to expand...

No it isn't either of those but it is still a legitimate reality. As a referee on grant applications I go mostly by the clues I can get that the applicants understand what their question is and the constraints on how it might be answered. I am a fan of scientists who show that understanding because I know it gets you somewhere. Being a fan of a theory is just a way of saying you judge it to be consistent and to have the potential to be valid.

Perhaps the most pervasive problem in biomedical science is that a high proportion of scientists can recite what the reviews say but have no ability to judge why one theory is stronger than another. Theresult is billions being spent on blind alleys. So being a fan of good theories is crucial.
ChronicallyOverIt said:
I’m really trying to understand what he brings to the table that moves research forward.
Click to expand...

Rob understands what a theory of complex disease dynamics requires - which is rare. He also openly discusses evidence against his current theory and has already moved on as a result of no longer being a fan of one his old theories. He has discussed issues here on the forum very cogently.
 
Jonathan Edwards said:
Rob understands what a theory of complex disease dynamics requires - which is rare. He also openly discusses evidence against his current theory and has already moved on as a result of no longer being a fan of one his old theories. He has discussed issues here on the forum very cogently.
Click to expand...
I actually hadn’t seen these threads. I will check them out.

I found this one interesting for people following this:
Post in thread 'Itaconate modulates immune responses via inhibition of peroxiredoxin 5, 2025, Tomas Paulenda et al'
https://www.s4me.info/threads/itaco...5-2025-tomas-paulenda-et-al.43741/post-605000
 
ChronicallyOverIt said:
I found this one interesting for people following this:
Click to expand...

Yes, Rob has suggested that a type 1 interferon might be one half of a loop leading to an off centre metastable pathological state. I remain doubtful and so does Rob but it has clear motivation as a model. Interferons are looking increasingly likely to be involved in some sort of loop of this sort. Running through the arguments for Rob's idea was very useful.
 
Creekside said:
Yes, but if they're doing really good studies, maybe even something that will win a Nobel prize, but it turns out that it has nothing to do with ME, then they won't be considered the best ME researcher. ME certainly seems to involve the immune system, but it's at least possible that all individual parts of the immune system are working properly, but the problem is a single brain cell that is responding to an immune signal improperly, so all the really good research on immune system functions won't help solve ME, aside from not wasting further resources on theories proven false.
Click to expand...
I guess I should have defined what I mean with 'best ME researcher'. To me, it would be researchers who take ME/CFS seriously as an illness and are attempting to figure out what's causing it and/or how to treat it. They should of course conduct high quality research that's solid methodologically (eg, clear hypotheses, randomized, and ideally double-blinded, trials. They stand on 'shoulders of giants' (as in, they know very well what's going on in and beyond their field so that they can build on existing knowledge), they are very transparent about their research and ideally (this is my dream for science in general), they would also publish what didn't work or evidence that 'proved them wrong'. So, almost everything I said is actually the definition of 'a great researcher', although there would be more 'traits' to list. And then focused on genuinely wanting to help solve the ME/CFS puzzle.
 
Chiming in here because I struggle with similar issues you listed.

The other issue for me is the pace of discussion on some research threads goes to fast for me to keep up. For instance, I came across the Daratumumab thread, read a bit, then when I came back later there were pages and pages of new discussion. And various different threads. I have to just skim, but the set up isn’t exactly ideal. I often wish there was a way to summarize the discussion into some of the key points.

Even though I can’t follow too closely, the critical eye taken by the forum members makes it much easier to see who is doing quality research vs what is just hype.
 
Jonathan Edwards said:
No it isn't either of those but it is still a legitimate reality. As a referee on grant applications I go mostly by the clues I can get that the applicants understand what their question is and the constraints on how it might be answered. I am a fan of scientists who show that understanding because I know it gets you somewhere. Being a fan of a theory is just a way of saying you judge it to be consistent and to have the potential to be valid.

Perhaps the most pervasive problem in biomedical science is that a high proportion of scientists can recite what the reviews say but have no ability to judge why one theory is stronger than another. Theresult is billions being spent on blind alleys. So being a fan of good theories is crucial.


Rob understands what a theory of complex disease dynamics requires - which is rare. He also openly discusses evidence against his current theory and has already moved on as a result of no longer being a fan of one his old theories. He has discussed issues here on the forum very cogently.
Click to expand...
How do you define a good theory? Is it that ITV shows profound understanding of the complexities of the research question? And/or deep knowledge on the existing knowledge/evidence at hand?
 
You must log in or register to reply here.
Back
Top Bottom