Q&A with Prof Chris Ponting May 2018

Date: May 3, 2018
URL:
https://www.actionforme.org.uk/uploads/images/2018/05/chris-ponting-interview-may-2018.pdf

Q&A with Prof Chris Ponting
---------------------------
Chair of Medical Bioinformatics, University of Edinburgh and Deputy Chair, UK CFS/M.E. Research Collaborative (CMRC),

What inspired you to join the CMRC?

In a word: Simon. I've known [blogger and M.E. advocate] Simon McGrath more than a decade longer than the 20 years or so of his M.E. I have seen him on his better days, and have been unable to speak with him on his worst. I have seen M.E. steal some of life's ordinary hope and future. Simon has so much more to give in life than M.E. allows. I started off my career as a physicist but then chose, instead, to try to use biomedical research to make a difference to people. It was a constant frustration that I couldn't help Simon, and other people with M.E. Now is my chance.

More at link

 

Less of an interview, more of a quick chat in passing in my opinion.

 

So who's fault is it, who should have done more and hasn't not making more of that failure to step up been part of the problem

 

Pretty good, encouraging. He’s right about that window of opportunity too. Unrest is done, millions missing protest is in a week and the next iteration of the NICE guidelines will be done in 2 years time. I feel like that’s our best window to effect some change.

 

@MeSci , am I right in thinking that, to your knowledge, AfME haven't officially released this yet?

 

It’s a Q&A.

https://twitter.com/user/status/992787053703237632

Chris is suggesting there is currently rather more to it than that.

 

Only just. A grand total of three questions may be sufficient for AfME's membership who are more interested in peer support than anything else, but I'm interested in hearing more detail from Chris about his/the CMRC's plans, and why we should have trust in this renewed version of the CMRC.

 

I don't know - it just appeared in my inbox via MEActionUK@yahoogroups.com.

 

I see it as a good sign that Action for ME asked a question about PACE, and Chris' answer seemed fair and informed when I suspect that many would have been tempted to be evasive.

 

SimonM
Chris is suggesting there is currently rather more to it than that

@Simon M .Are you able to help in elucidating what this might be? I have always been concerned at what I have seen of Holgate's behaviour, his support of Crawley, treatment of Geraghty etc.

I am prepared to see Chris Ponting as he is but would like to understand his view of Holgate whom I view as @Trish described.

I understand your commitment to someone who described you as his source of interest in ME but I am very uncomfortable with his description of Holgate in the last para of his statement.

"Prof Stephen Holgate is the right person to lead this: he founded the CMRC; he is he go-to person for funders; he is inclusive and generous; he is an internationally renowned clinician scientist. Yes, we do not agree on everything, which is to be expected among researchers: “Disagreement is something normal,” the Dalai Lama said. It is not his fault that UK funders have not (yet!) funded M.E./CFS research adequate" ly.

He is the Chair and , in my view, we might have expected more from the CMRC.

EDIT: quotes around Chris Ponting's statement

 

I think that is a little unfair, Trish. Let’s not forget that he co-signed a letter to the Independent in defence of Simon Wessely’s “pioneering research” in the field of ME/CFS, along with all the usual suspects: https://www.independent.co.uk/voice...-online-postings-2-december-2012-8373777.html

Having said that, everything I’ve heard from and about Chris Ponting is positive and I hope he can turn things round.

Edit: Maybe more accurate to say most of what I’ve heard. I am certainly not convinced that Stephen Holgate is “the right person to lead [the CMRC]” and whilst it may not be his fault that “UK funders have not (yet!) funded ME/CFS research adequately”, he must take his fair share of the blame. But sadly Chris has to play politics like everybody else. And if praising Holgate and ignoring his failures is the price he has to pay to gain influence then perhaps it is a price worth paying.

 

@Robert 1973

Interesting reply. I had not seen that 2012 letter defending Simon Wessely (in your link) before.
My opinion of Holgate remains the same.
I look forward to seeing what Chris Ponting can achieve. It would be wonderful if the CMRC came into play and benefitted patients. Watching carefully.

 

I'm glad to learn he has a personal commitment, through Simon. I didn't know that. I also appreciate that he apparently wrote to the PACE team a year ago asking for explanations of the methodological anomalies. That was the same time as I was writing open letters to the CMRC board about Esther Crawley's accusation about libelous blogs and requesting Holgate and the board to take a position on her actions. Too bad he doesn't discuss whether she left the board voluntarily or was nudged aside.

 

I have received feedback on my earlier comments that seem to feel that I was criticising Chris Ponting's answers.

To clarify, I'm disappointed that the Q&A is only three questions long, and doesn't get down to the detail I'm interested in, so my frustration is with AfME's questions.

For example, my understanding of the CMRC is that it is neither a research group, so won't conduct research itself, or a funding body, so won't fund research itself, but something else - I would have liked a question or questions to explore this aspect so that I could get a better understanding of what I can expect/hope for from the CMRC, as I believe that this is something not understood by many people out there and is the source, in part, with a lot of dissatisfaction of the CMRC's performance to date.

 

This seems an example of how the MRC " ring fenced funding not what we normally do' which we have been fobbed off with since 2012 is just an excuse for CFS .

They're now calling for proposals for MH treatment research with £5m up for grabs.

https://mrc.ukri.org/funding/browse/ttv-mh/therapeutic-target-validation-in-mental-health-call/

Awards in this call will be made in the range from £1 million to £1.5 million (MRC contribution) for a duration of up to five years. The MRC will make up to £5 million available for this call and expects to support around four to five awards. This call has an initial Expression of Interest stage followed by the invited submission of full applications.


Whilst I've heard lots of "ME should have been getting more money" in the uk from various sources, it's never said who from and in what form and no one is asked to take responsibility for it not happening or lobbying at the body the pool of money hasn't come from. Unlike in US.

 

I personally don't see why Jen breas film is the window for opportunity,it's just an awareness film, the need was there years and was being expressed by patients years. For me Jen breas film and #MM movement is just exerting a pressure and scrutiny which is making it harder for the establishment to continue failing in their duty to our community

 

If the implication of this is that I'm supposed to give a flying f*** about anything the Dalai Lama says, then I disagree.

 

For anybody interested, links to this Q&A were included on this, https://www.actionforme.org.uk/news/registration-now-open-for-2018-cmrc-conference, and this, https://www.actionforme.org.uk/research/uk-cfsme-collaborative, page, there was no individual release of it as a stand alone piece.