Researcher Interactions Science for ME written Q&A with Prof Chris Ponting

[Sean]

But, there's a better chance of that if we are informed watchers and commentators.

Damn right.

The lesson out of all this is that we can't blindly trust the experts and the system to deliver. They have to be watched like hawks, and promptly called out when necessary.

 

[adambeyoncelowe]

I think Chris is obviously a good egg, which means I'm feeling more patient with the CMRC than I would have been. Really, the people I want to ask questions of are Harrison and the (non-board member) Mark Edwards.

On hype: I understand that feeling. There's a lot being promised, it feels like, but little being delivered. But OMF has a bunch of Nobel winners, so I think we can be cautiously optimistic that they may at least find something. My largest concern is that the number of study participants is still so small.

 

[Andy]

I don't feel this question has been answered. The other Mark Edwards isn't on the board but has been involved with the CMRC. And whether Harrison refutes that he sees ME as an FND, the paper he's involved with explicitly says ME is FND/hysteria. He can refute it all he wants, but the paper has his name on and is crystal clear. Does this mean Harrison intends to disown the paper?

Playing devil's advocate here.

The main point of your question was asking, "is the CMRC pledge to focus on biomedical research undermined by that approach?". Chris didn't directly deal with the 'undermining' aspect but did say, "The CMRC is 100% committed to its focus on biomedical research. This is absolutely clear.", which would seem to be a clear commitment to biomedical research.

"Does this mean Harrison intends to disown the paper?" - I would suggest only Harrison can answer that. Has anybody tried engaging with him?

 

[adambeyoncelowe]

Playing devil's advocate here.

The main point of your question was asking, "is the CMRC pledge to focus on biomedical research undermined by that approach?". Chris didn't directly deal with the 'undermining' aspect but did say, "The CMRC is 100% committed to its focus on biomedical research. This is absolutely clear.", which would seem to be a clear commitment to biomedical research.

"Does this mean Harrison intends to disown the paper?" - I would suggest only Harrison can answer that. Has anybody tried engaging with him?

To be fair, yes, I was asking Ponting something that should be asked of Harrison. It probably should be put to him too, though it is always good for the vice chair to be under a little bit of pressure in regards to this, because then he's more likely to do something about it. Basically, there are still some questionable elements in the CMRC, and if he knows that we know this, and are continuing to mention it, next time there's an overhaul of the board, some of those people may disappear for good.

 

[Robert 1973]

I don't feel this question has been answered. The other Mark Edwards isn't on the board but has been involved with the CMRC. And whether Harrison refutes that he sees ME as an FND, the paper he's involved with explicitly says ME is FND/hysteria. He can refute it all he wants, but the paper has his name on and is crystal clear.

Agree.

"Does this mean Harrison intends to disown the paper?" - I would suggest only Harrison can answer that. Has anybody tried engaging with him?

To be fair, yes, I was asking Ponting something that should be asked of Harrison.

Adam, will you email Harrison? I wrote to Mark Edwards (the one who is apparently no longer on the CMRC board) to ask him which effective CFS treatments he was referring to in the abstract of A unified Medhanism for Functional Neurological Symptoms (http://gtr.ukri.org/projects?ref=MR/M02363X/1) when he wrote:

If our theory is correct, then when people get better with treatment then we should see corresponding changes in the way the brain is working.

In keeping with my experience of writing to BPS proponents, and in complete contrast to my experience of writing to scientists involved in any other types of research, I received no reply.

If Adam or anyone else from the forum writes to Harrison and receives no reply, I suggest we go back to Chris.


Finally, I’d like echo the other positive comments that have been made about Chris. I very much appreciate what he is trying to do and I hope he will be able to turn the CMRC around.

 

[adambeyoncelowe]

Agree.



Adam, will you email Harrison? I wrote to Mark Edwards (the one who is apparently no longer on the CMRC board) to ask him which effective CFS treatments he was referring to in the abstract of A unified Medhanism for Functional Neurological Symptoms (http://gtr.ukri.org/projects?ref=MR/M02363X/1) when he wrote:

In keeping with my experience of writing to BPS proponents, and in complete contrast to my experience of writing to scientists involved in any other types of research, I received no reply.

If Adam or anyone else from the forum writes to Harrison and receives no reply, I suggest we go back to Chris.


Finally, I’d like echo the other positive comments that have been made about Chris. I very much appreciate what he is trying to do and I hope he will be able to turn the CMRC around.

I could try. If you have his email address, please inbox me.

 

[Sasha]

Very grateful to Chris Ponting for answering all these questions and to Andy for organising.

Lots of interesting snippets, including this one:

CP: No one organisation – a funder, a charity, a University, a company – could, I think, have stimulated the active discussion that is ongoing. This, I think, will be how the CMRC will be seen once it has achieved its aim of catalysing a new research and funding strategy. The CMRC Board is agreed, I think, that the CMRC should not continue in its current form once this aim has been achieved.