Who are currently the best ME/CFS researchers?

wingate said:
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.
Click to expand...
Yes, @wingate, I struggle with that as well. I think the discussions on DecodeME, Dara, and @Jonathan Edwards' recent post on bone marrow are good examples of discussions I would like to follow and understand, and I don't.

Also, another reason I would like to be informed as much as possible is so that I'll be able to have useful conversations with doctors, and don't fall into a 'I'll do it because the doctor said so' trap, because now I know they gave no way of 'knowing' and all they do is 'trying'. But I want to be able to judge how open and honest they are with me.
 
MinIreland said:
I think the discussions on DecodeME, Dara, and @Jonathan Edwards' recent post on bone marrow are good examples of discussions I would like to follow and understand, and I don't.

Also, another reason I would like to be informed as much as possible is so that I'll be able to have useful conversations with doctors,
Click to expand...

I am sorry that you find these discussions hard to follow. There is no harm in asking for clarification and please don't be afraid to do that. The reality is that those of us making these technical posts are very often not sure we understand either - they are on the very edge of what anyone can understand and that is the point of making them - to push our shared thinking as far as it will go.

None of this is of any use for talking to doctors I think. The Science for ME idea is to push the science as hard as possible. Some of that science has very practical implications for care - like trials - but a lot doesn't, and trials like daratumumab are very much at the level of testing speculations.

I am very aware that people with ME/CFS want to be able to support their case when faced with health professionals with biological evidence. In the past most of that has been flimsy or plain bogus. We know have genetic data that show that the ME/CFS diagnosis does pick out a shared biology but we have no firm idea what that is. We have a lot of promising clues, that is all.
 
MinIreland said:
But I want to be able to judge how open and honest they are with me.
Click to expand...

That's not too difficult if the discussion's about ME/CFS. If they say they don't have answers because we understand very little about it, they're being honest with you. If it's about disease modifying treatments and they say there aren't any, then likewise.

The problematic ones are those who claim to know how to treat it, or who think they understand what is going on, or who try to keep you believing you'll get answers if only you see enough specialists, or who just tell you whatever they think you want to hear.
 
I like to think of it a bit like the movie, “The Good, the Bad, and the Ugly.” Everyone is hunting the same treasure, but they are using different approaches to find it.

We have folks using a traditional academic approach like Professor Edwards and Dimissa. We have Phair and Davis using an engineer’s approach to problem solving. We have the DecodeME team using big data and analytics. We have Fluge and Mella following clinical results upstream in search of an explanation.

I think the best researcher is really the hive mind. The fact that so many brilliant people are putting egos aside, sharing ideas, and working toward a common goal is by far the most hopeful thing in my book.
 
Last edited:
MinIreland said:
Who are currently considered to do the highest quality of ME/CFS research?
Click to expand...
Everyone who is actively dedicating their time to shared knowledge in good faith. So all of you, to start with.

Sometimes things are gotten wrong or get lost in the weeds, but the scrutiny and collaboration here on s4me is an accelerant in homing in on ideas most likely to be productive. I would not be half the problem solver I am today if I didn’t swallow some bitter pills in the last year or two and start taking more of JE and Snow Leopard’s postings to heart, or listen to what patient members say about survey items or experiences with triggers, etc. i would still be tunneling towards now-abandoned dead ends if I didn’t have all of the advice that I’ve gotten from s4me members

Stuart79 said:
I think the best researcher is really the hive mind. The fact that so many brilliant people are putting egos aside, sharing ideas, and working toward a common goal is by far the most hopeful thing in my book.
Click to expand...
1000%, this is not just a platitude. It’s true.

Edit: also since there was some name dropping earlier, @jnmaciuch will be absolutely putting me to shame given comparable resources etc, just watch.
 
Last edited:
Very interesting. Far be it from me to want to make you say anything bad. But Ron Davis, the most media-friendly among you, has he really been making interesting discoveries in recent years? His last symposium was a huge disappointment. Except for the PET scan of I don't remember who, which revealed some more than interesting things. Aren't Davis and Phair heading for disaster? I discovered I had this disease in February after a crash that put me in a severe state (I've probably had it since 2022, or rather, with constant PEM since April 2023, my PEM manifestedcas panic attacks), and I've heard practically nothing but the Davis family and Whitney Dafoe. Now that I follow the MECFS news daily, I realize that Davis has delivered few results in the last 5 years... No?
 
neophyte32 said:
Very interesting. Far be it from me to want to make you say anything bad. But Ron Davis, the most media-friendly among you, has he really been making interesting discoveries in recent years? His last symposium was a huge disappointment. Except for the PET scan of I don't remember who, which revealed some more than interesting things. Aren't Davis and Phair heading for disaster? I discovered I had this disease in February after a crash that put me in a severe state (I've probably had it since 2022, or rather, with constant PEM since April 2023, my PEM manifestedcas panic attacks), and I've heard practically nothing but the Davis family and Whitney Dafoe. Now that I follow the MECFS news daily, I realize that Davis has delivered few results in the last 5 years... No?
Click to expand...
Probably best to go to the thread on Ron Davis's work if you want to discuss it. I think he's well intentioned, but made some mistakes in thinking he would be able to find answers quickly after looking at some abnormal biochemistry results from Whitney. His desperate wish to heal his son is understandable, but his promises to the wider community of quick routes to cures were ill judged, in my opinion.
 
MinIreland said:
Also, another reason I would like to be informed as much as possible is so that I'll be able to have useful conversations with doctors,
Click to expand...
Sadly, most doctors won't be able to have useful conversations about ME; there's simply no real knowledge for them to be educated about.

MinIreland said:
But I want to be able to judge how open and honest they are with me.
Click to expand...
That's a goal I support. If a doctor prescribes some drug that they came across in a brief search for information about ME, I'd certainly check the latest papers about that so that I can judge whether it's worth the risk, expense, etc. A doctor might come across an impressive-sounding claim for a drug, but it's an outdated paper, and later results show that the drug wasn't effective. However, I wouldn't limit my search to whomever is supposedly the "best ME researcher" at any given time.
 
MinIreland said:
Also, another reason I would like to be informed as much as possible is so that I'll be able to have useful conversations with doctors, and don't fall into a 'I'll do it because the doctor said so' trap, because now I know they gave no way of 'knowing' and all they do is 'trying'. But I want to be able to judge how open and honest they are with me.
Click to expand...
I can give you a handy cheat sheet for that:
1. everything they say is wrong and dishonest bc they will not say “I don’t know”.
2. All they are ever doing is trying.
3. You cannot have a useful conversation with a doctor so don’t try. Just have an objective of the appointment (to try a drug, get a letter) and agree with them in order to achieve that goal.

And, the particular doctor I think you are seeing says things like “the problem in ME is endorphins” quite emphatically and reports major results from his work with patients like “”60% or my patients improve a lot or get better”.

My other doctor, very well respected in Ireland for pain, says “well of course we know that ME starts in the brainstem”.
 
Braganca said:
I can give you a handy cheat sheet for that:
1. everything they say is wrong and dishonest bc they will not say “I don’t know”.
2. All they are ever doing is trying.
3. You cannot have a useful conversation with a doctor so don’t try. Just have an objective of the appointment (to try a drug, get a letter) and agree with them in order to achieve that goal.

And, the particular doctor I think you are seeing says things like “the problem in ME is endorphins” quite emphatically and reports major results from his work with patients like “”60% or my patients improve a lot or get better”.

My other doctor, very well respected in Ireland for pain, says “well of course we know that ME starts in the brainstem”.
Click to expand...
My GP said: I don't know anything about ME/CFS, which is why I trust her.
 
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've been harboring a vague feeling that a breakthrough will come from fields not specifically related to ME/CFS. ME/CFS researchers often come from specific fields, and they tend to come with preconceived ideas of how their expertise relate to ME/CFS. That probably is not a good thing for nebulous and amorphous disease like ME/CFS. They often end up proposing hypotheses that don't even explain the cardinal symptoms or without understanding exactly what those symptoms are because they are so wrapped up in preconceptions. Non-ME researchers, on the other hand, don't have such a problem and their "accidental" findings could provide crucial clue.

It may be true that non-ME researchers findings may not zero in on the ME/CFS cause. But bits and pieces could give hints and eventually direct ME/CFS researchers to the crux. We'll need brilliant minds that can take those pieces, fill in the gaps and complete the picture.
 
Braganca said:
I can give you a handy cheat sheet for that:
1. everything they say is wrong and dishonest bc they will not say “I don’t know”.
2. All they are ever doing is trying.
3. You cannot have a useful conversation with a doctor so don’t try. Just have an objective of the appointment (to try a drug, get a letter) and agree with them in order to achieve that goal.

And, the particular doctor I think you are seeing says things like “the problem in ME is endorphins” quite emphatically and reports major results from his work with patients like “”60% or my patients improve a lot or get better”.

My other doctor, very well respected in Ireland for pain, says “well of course we know that ME starts in the brainstem”.
Click to expand...
Endorphins??? That made me laugh.
 
Braganca said:
Just have an objective of the appointment (to try a drug, get a letter) and agree with them in order to achieve that goal.
Click to expand...
That's how I deal with doctors now. First we have to get over the belief that "the next doctor will do a different test that finds something". It took me quite a few doctors to accept that.

There's a possibly fun poll: How many doctors did you try before accepting that there's no point in going to another one?
 
poetinsf said:
I've been harboring a vague feeling that a breakthrough will come from fields not specifically related to ME/CFS.
Click to expand...
I think that might be part of my objection to the question of "who is the best ME researcher". I suppose I have a vague belief that when an answer is found, it will be from someone isn't on the present list of prospects. Maybe that will be someone testing out a new diagnostic tool and trying it on a friend who has ME and making a discovery. I suppose that doesn't even need a new technique; just someone using an existing technique on someone who has ME and happens to be looking in the right place to find something.

The technique for finding a critical factor in ME might be being done frequently, but only 1% or so of the patients might have ME, and whoever was doing the test was looking for something else, so the abnormality didn't register on their consciousness, or connect it with ME.
 
Creekside said:
That's how I deal with doctors now. First we have to get over the belief that "the next doctor will do a different test that finds something". It took me quite a few doctors to accept that.

There's a possibly fun poll: How many doctors did you try before accepting that there's no point in going to another one?
Click to expand...
I have thought about this. I am 'only' 3 years in of being sick and rationally, I am well aware that I won't find a doctor who can really help me. However, emotionally I am not ready yet to stop looking (although I'm quite cautious about who I see). And I'm giving myself that time and space (and yes, I'm lucky that I am able to do so, because I'm in a financial secure situation, so I'm privileged that way). To me it's interesting that I read the posts of the very 'experienced' patients, and I totally believe them and accept what they say. Yet, it seems like I have to go through certain steps to work towards the next level of acceptance. I'm pretty convinced it works like that for everyone.

Would be an interesting study topic...
 
You must log in or register to reply here.
Back
Top Bottom