Who are currently the best ME/CFS researchers?

[MinIreland]

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.

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.

 

[Jonathan Edwards]

How do you define a good theory?

A theory you end up deciding is good. There are hundreds of reasons and some of them you can't even put your finger on until later. Like most things I guess.

 

[Jonathan Edwards]

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,

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.

 

[Kitty]

But I want to be able to judge how open and honest they are with me.

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.

 

[Stuart79]

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.