S4ME Q&A with Prof Chris Ponting - Question Collection Thread

I'm delighted to announce that Professor Chris Ponting, Chair of Medical Bioinformatics, Edinburgh University and Deputy Chair of the CMRC, has agreed to an email Q&A with us, so I'm now looking for questions to ask him.

For reference, AfME had this brief Q&A with him, so ideally we want to avoid duplicating any questions there.

As with our previous interviewees, chances are he won't be able to answer everything that you folks will want to ask him; he has specifically made it clear that he is unable to answer clinical care questions as he has no expertise in that area, and there may well be other questions that he won't be able to answer due to a number of reasons such as confidentiality, professional courtesy, etc. Having said that, if you are in doubt, just ask your question and if he can't answer it then he won't.

This thread will close for questions 12 noon Sunday 3rd June and a maximum of 10 questions will be sent to Prof Ponting soon afterwards - which questions will be decided by a combination of number of likes each gets and my editorial decision.

P.S. As tempting as it might be to ask about Crawley, I shouldn't bother - although I haven't raised the subject I'm 100% certain that topic won't be answered.

P.P.S As Sasha quite sensibly points out, a question per post will help keep things organised, in terms of liking.

 

Post reserved for potential future use.

 

Thanks, @Andy (and Chris Ponting!). Presumably it makes sense for us to do one question per post so it's clear which individual questions are being liked.

I've got one.

In his AfME Q&A, Chris said:

All that I have seen or heard tells me that change is desperately needed, and needed fast. Time will soon tell whether the Collaborative can help catalyse change. A window of opportunity is currently open, and we have to take advantage of it before it slams shut, before the attention of decision-makers and grant-funders naturally turns to other areas.​

What can he tell us about what research the CMRC are proposing to the grant-funders and decision-makers, while that window remains open?

 

Another question:

If you had infinite resources and could do (and could get done) any ME/CFS research you wanted in order to discover the disease's mechanisms and possible treatments, what would your research programme/strategy look like?​

 

And another:

What kind of disease do you think this is? That is, what do you think its fundamental biological cause is likely to be?​

 

It’s my view that due to years of neglect, ME patients are among some of the most proactive people I’ve ever spoken with, doubly so when you consider the limitations placed on them by their illness.

How does the CMRC plan to include patient input with regard to research proposals and achieving its overall goals?

 

In your opinion what is the best way to deal with the CBT/GET camp?

 

What do you think about EUROMENE? Do you have any plans for collaboration? I'm asking because the US seems to be moving ahead with research while most of Europe is about 30 years behind while it could contribute significantly to research.

 

My question is:

Given his positive comments about Unrest and the objective around “raise awareness of the disease”, does he think the CMRC should take a more proactive role correcting misinformation in the press about ME and if so how does he propose doing this?

 

Given the flaws of the PACE trial (as he expressed in his interview with AfME), does he think it is right that the existing 'treatments' of CBT/GET should remain in NICE guidelines until 2020?

 

Is there any chance that the CMRC will change its name?

For a lot of patients, CFS/ME, as a name for the condition, is normally linked with/used by those in a position of authority who have a BPS and/or psychological opinion of the cause and perpetuating factors. Additionally, so far, we are seeing NICE use ME/CFS in their documentation related to the review of their guidelines. So, while it might seem an, understandably, minor point to others, to many patients a name that doesn't use CFS/ME would be seen as a clear break from, what seemed to be, the past focus that the CMRC had on BPS research.

ETA: Added "/used by".

 

What is Chris's vison for the CMRC going forward and how can this be acheived?

 

What does the CMRC need to do to create a stronger biomedical base and bring in more researchers who are specialists in their own fields?

 

Is it possible to make the CMRC produce a larger conference in the UK through gaining funding considering they have no funds? With the idea of helping to build more interest and a stronger base.

 

Is it possible the CMRC can form a collaborative research hub or center a bit like the ones just funded by the NIH?

 

The CMRC seems to have achieved very little since its inception beyond stoking controversy and alienating patients. As someone who appears to favour a patient-focussed, biomedical approach to ME research, why have you decided to try to do that through the CMRC rather than through any of the other existing organisations or by starting a new collaborative from scratch?

 

As vice-chairman of the CMRC, what steps will you be taking to try to recruit other respected doctors and scientists, as well as charities and patients organisations, with an interest in biomedical ME research who have previously been unwilling to join the CMRC because of concerns about its focus and direction?

[ETA charities and patients orgs]

 

Numerous US reports from e.g. NIH, IOM and AHRQ (Agency for HealthCare research and quality) have noted that research has been confounded by inconsistent and inaccurate methods of selecting patients for research. What is CMRC doing to address this issue and ensure research cohorts are composed of people who have hallmark symptoms such as PEM and actually have ME?

Note: IMO, NICE doesnt cut it cause it says it requires PEM but it also says that exacerbation of symptoms following exertion is optional. IOM and NIH both require this.