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

The following might be US specific....

Our ability to accelerate progress in research is throttled by the number of well-characterized patients that we can get into research which is throttled by the number of clinicians in general and specialist practice who are knowledgable about the disease and at least know how to accurately diagnose it. Given the known misdiagnosis problem, what does CMRC plan on doing to address the clinical issue?

 

A lot of unhappiness within the patient community with the CMRC, I believe, would seem to come from a misunderstanding of what the CMRC can and can't do, given that it is neither a funder of research, having no funds itself, nor is it a research 'centre', in the way that we might consider, in the UK, a university could be. Given it's 'virtual' status, what advantages does it gain from this format and what does that enable it to do?

 

My question (once again I have foggy mind so apologies):

On the NICE draft scoping report that the ME Association have a link to http://www.meassociation.org.uk/wp-content/uploads/NICE-MECFS-Draft-Scoping-Report-19.05.18.pdf

3.5.3

Management of ME/CFS
3.1 What is the clinical and cost effectiveness of pharmacological interventions for people with ME/CFS?
3.2 What is the clinical and cost effectiveness of non-pharmacological interventions for people with ME/CFS (including dietary supplementation, graded exercise therapy, pacing, the Lightning Process and psychological interventions such as CBT)?
3.3 What is the clinical and cost effectiveness of self-management strategies such as heart rate monitors for people with ME/CFS?

Why is Lightning Process listed here? What do you intend to do to ensure that this (along with GET and CBT) are not offered up as cost effective “treatment” (I don’t know how else to term LP, it certainly isn’t treatment).

I am still gobsmacked how anyone (especially the NHS and NICE) would consider LP (come on .. jumping in a circle, clapping and telling yourself you are better) a legitimate healthcare option. Just imagine the public outcry if loved ones who had cancer were told to jump about and think themselves better! I find it utterly disgusting and insulting to have that nonsense mentioned in the draft, it’s ridiculous.

 

Sorry @dangermouse , Prof Ponting, and the rest of the CMRC, have nothing to do with the internal processes of NICE. You would need to address this question to someone in NICE itself to stand a chance of getting this answered. (Not that I disagree with your point, it's just that you're not asking the right people.)

 

Is there any way to make sure that future research includes severely affected housebound and bedbound patients in any research cohort?

 

No problem, thanks @Andy

 

The MRC has had a highlight notice for ME up since 2011, yet funding levels are still stagnant despite this open door. The CMRC has so far supported two bids relating to MEGA, both of which have failed suggesting a change of strategy is needed as we sufferers have so little time. A purpose of the CMRC is to bring more researchers to the field, how do you propose to work with the MRC, it's new Executive Chair Fiona Watt and ME researchers to put in bids that will succeed in obtaining funding?

 

Ah but there is evidence based research for LP. never mind the quality feel the width...

 

Given this:

Bolding mine.

From this thread:
https://s4me.info/threads/m-e-highlighted-at-the-71st-world-health-assembly.4286/#post-74554

What is your position on MEGA?

 

Given that at least two CMRC members are writing papers about ME as a 'functional neurological disorder' (which the abstract confirms is another name for 'conversion disorder' or 'hysteria'), is the CMRC pledge to focus on biomedical research undermined by that approach?

 

Which two? There has been some confusion about Mark Edwards; the Mark Edwards on the CMRC board is described as a "Lay member with pharma/industry experience" (http://www.meassociation.org.uk/res...e/cmrc-executive-committee-becoming-a-member/), his LinkedIn profile is https://uk.linkedin.com/in/edwardsmark2. The Mark J Edwards behind the functional neurological disorders paper is a different person.

 

He is a different person, but he's still part of the CMRC, if I'm remembering correctly. He's just not on the board.

There are two Mark Edwards in the CMRC.

 

This is not actually a question for C.P; but given his recent involvement in Geneva with IAfME (AfME)
is the CMRC now part of/a member/supporter of this 'alliance'?

(although the changes at the CMRC are a step in the right direction, Holgate still has ties to Simon Wessely).

 

Bump - a reminder that this thread will close on Sunday. Also please look through the entire thread and upvote any questions that you think are good/worthwhile ones.

 

If this hasn't been answered before:
What is the status on merging CMRC with BACME?

 

Longish post, please bear with me...

I was struck yesterday by this tweet from Jen Brea:

https://twitter.com/user/status/1001765909298495488


I agree with her. If my health is going to improve before I'm an old woman (and I've been sick for decades) then treatments need to come in the next five years, not the next ten or twenty.

I was delighted to see that Chris has got funding for a PhD studentship to follow up on Mark Davis's work on T-cell clonal expansion. Our Simon McGrath (@Simon M) wrote a fascinating blogpost about this work. Basically, T cells get created with random molecular 'locks' by the immune system and wander about the body looking for a molecular 'key' on a pathogen or tumour cell that fits that lock. If the T cell finds one that fits, it creates clones of itself, and the existence of such clones is a marker for immune activation. It shows up in MS, cancer, and acute Lyme infection - and Mark Davis found it in a sample of six ME/CFS patients.

Simon described this as the strongest evidence yet of immune activation in ME/CFS - a field where there seems to have been endless inconclusive and low-level immune findings concerning levels of cytokines, NK cells and so forth. T cell clonal expansion is a completely new way of looking at immune activation and if it's found in ME/CFS it could (as I understand it) show not just a correlate of the disease but its root cause, because it's possible to identify exactly what substance the cloned T cells are locking onto. So if this work pays off, we're looking at cause, diagnostic test, and treatment targets.

Chris's PhD student will be building on Davis's work, and attempting to replicate it. Simon mentioned that the Wellcome Sanger Institute is involved and will be trying to come up with a cheaper and quicker version of the technology involved, so that more cells can be sampled per patient and more patients can be studied, faster.

So, great stuff, but a PhD student will need to be recruited (typically a new graduate so not until the start of the academic year in Sept/Oct) and a PhD typically takes three or four years to do.

I don't want to wait three or four or five years before this important research is done and published. My question is, what can be done to speed it up? Can a research assistant (or ten!) be hired to help move things along faster [Edit: either at Chris's unit and/or at Sanger]? Can money be raised via funding proposals to our charities, or via a crowdfund? Patients have already crowdfunded successfully to employ David Tuller for two years in a row. Surely we can run to helping fund something like this.

We need to get important research moving fast, as though our lives depended on it, because they do. And this seems like very important research indeed.

Thanks for reading this rather long question (with background info so that other PWME can understand why I ask it).

Edit: Simon has now written a very interesting blog post about this planned PhD work.

 

It's possible that the PhD student will do multiple studies to combine into their thesis. They might publish or at least submit several articles during that time. However, publishing is an objective for PhD students afaik and usually takes long. I'm not sure if they can immediately share data when they have gathered and analysed them, like OMF.