UK CMRC 2018 Conference - Prof Stephen Holgate

This thread has been split from the main thread about the CMRC conference here.

https://www.youtube.com/watch?v=AK5UONg0diM

My summary of Holgate’s fifteen minutes:


Emphases the five years length of CMRC effort, ( whilst he’d been head of something very similar previously along with charities and researchers).

Used the phrase “it’s the right time” for increased input from DoH,, hmmm

The call for extra funding went in the form of a presentation, a folder of questions sent back from MRC which the CMRC exec responded to and are now waiting on further response..... More transparency from the exec about this year would have been welcome

Says that five years is a long time to reach where they’re at (yep) but reassures there’s no going backwards now ...

Said before Chris Ponting they hadn’t been so seriously focused on unraveling causality or including patients ....

Says the JL priorities thing hadn’t started yet but was set up as something over the “next one - two years”,,, so that will total three years they’ll have spent on priorities

He says there’s a couple of arthritis charities (one of which he will head , why?} who are interested in fatigue and pain

And ends with hoping to “get ducks in order “ over here to start to be able to collaborate with the USA.

Edit part transcript of middle section
“The reason we did all of this five years ago was because the field was going this way, that way and every way and everyone was doing different things and there was no forum for bringing researchers together to discuss directions of travel and where the efforts should go to try and increase knowledge in this field so I thought it was important we try and do this and with the help of the charities and with various organizations who you will see in that circle there, over the years we have managed to put together I think a robust organization now which speaks in many ways for the research voice in this country in this particular field. Not saying that all the individual organizations don’t do a lot as well, of course they do, but we have got to start speaking with a single voice if we are going to influence change at a national level and that is really the reason why we got ourselves going in the first place.


The important thing about the collaborative is it has got to be a collaborative, people have got to work together and a big change that happened in January of this year, when we were reviewing our sort of five year progress, was to think about involving patients and carers more in the way we run our direction of travel so we are absolutely thrilled that the patient advisory group has joined us and I am pleased to say that group has made a marvellous contribution over the last six to nine months.....



So in January we kind of had a naval gaze really about what we had achieved in the last four of five years., though we have achieved quite a lot, there's no question about that, and we had four very successful conferences, and i think that has been marvellous,

We did realise we really needed to focus our efforts more than we had done. '

What we were doing previously was acting more as a broad church rather than concentrating efforts on what needed to be done to make a difference at the moment in time both in politics and in science so with that kind of 4 and a half year period coming to an end, cp, who is now deputy chair, very kindly agreed to take over the role and has helped us enormously in setting the agenda in a new scientific journey for us in this field. And that scientific journey is really to expose discovery to try and understand causative mechanisms of this disease , and although we had started that process 2 or 3 years ago and had had a few attempts at trying to get it supported we really hadn’t concentrated on it and I think that’s the point really, we spent the last nine months really concentrating on it and on that particular effort and it is really beginning I think to gain traction now and reap some rewards, we hope. “

 

This is where I remain puzzled as to exactly what role CMRC plays. Normally scientists apply directly to MRC. MRC can have all sorts of subcommittees focusing on priorities, but they are within MRC. I am unclear whether CMRC is an applicant for funds or a facilitator of funds (in which case why isn;t it an MRC committee).

And while CMRC has been getting its ducks in s a row to talk to the USA the London School of Hygiene has been happily benefitting from multimillion dollar NIH grants. And while CMRC has been dithering with a poorly thought through MEGA the UK Biobank seems to have found a gene.

Fortunately the bus keeps coming round so hopefully the CMRC will not miss it this time.

 

Why did the MRC not fund the UK ME/ CFS biobank? Surely that's high quality research.

 

I think that is a good question. Why has a representative from MRC been sitting on the CMRC committee all the years when the ME Biobank was not represented on that committee?

 

What an appalling admission to say they weren't focused on causality ( we all knew that). Imagine that statement being made at a cancer conference.

 

I am very wary of getting arthritis charities involved. Our "fatigue" is not the same, the CPET testing has shown that. It looks like a way to get money that should be looking at us, looking at another disease. The CDC used ME research money for other diseases years ago and justified it by saying they gave it to real, serious diseases.

I may be remembering it wrong, but the last time there was money available to research us it was used to look at fatigue in other diseases.

 

Stephen Holgate says he’s taking over this charity, he’s currently a trustee. I hope he’s more dynamic and effectual in that setting than ours. He might be alright in established recognised fields , I dont think he’s been successful in difficult areas like ours, that’s not where his skill set is best perhaps plus he’s been unsupported by the institutions that supposedly unite under his umbrella. I’m not sure what his connection is to ours, not enough to drive him as Ron Davis is driven.

“The Kennedy Trust provides sustainable, long-term funding of medical research into rheumatic and related musculoskeletal, immunological and inflammatory diseases. We will consider informal approaches from and offer support to institutions only – we do not consider personal applications.“

 

Indeed. It all reminds me of an episode of 'Yes Minister'. Somebody will be appointed to a 'quango' soon

 

https://www.youtube.com/watch?v=cFXIxeg7Fg4

This YouTube is half David tuller half Stephen Holgate wrap up so I posted it here.

Thanks Very much @dave30th for your speech and for debunking the harassment myth at such an event. Great to see no one claim harassment or challenge that. After Fiona watts public support or the PACE trial recently, I can’t imagine this speech was comfortable for the MRC to be present at .

SH seemed to respond by emphasising the need to look forward, but the establishment can not just brush over the past when we still have their axe in our shoulder so to Speak . I also note again how he goes on about been doing this for five years , even saying he’d resign if the next five hadn’t progressed more. Firstly he’s been involved for years, the ME expert group which he headed preceded the CMRC but was quite similar, 2ndly I don’t accept that they made good progress the past five or ten years and third I’m actually surprised SH expressed such personal invested as I’d always assumed we were just a side project for him.

 

Selected extracts.

I assume from this that he thinks that the CMRC should be the single international voice? Or maybe that everybody should be saying the same as the CMRC, whatever that might actually be. And nice to see that he is at least paying lip service to the idea of engaging with patients, I'm still awaiting his promised reply to my email to him from two years ago.

No doubt this was the shortest part of his speech, given the lack of actual achievements.

Hmm. Cheaper and quicker just to engage with us here surely? And what clinicians are they planning to involve? Those who run the ME clinics?

Sigh, and here he shows how he still doesn't understand us. Recent studies in progress show that Arthritis UK researchers consider patients with pain=fibro patients, and patients with fatigue=ME patients. If they persist with that limited understanding then their interest will just cloud the waters rather than help to clarify them.

 

At the start he mentions the international advocacy AFME are supposedly doing if that’s what they are referring to (anything but doing UK advocacy it seems from AFME because they won’t take on the establishments). It’s curious as the public were given literature including a program and then something on AFME’s international advocacy which he asked people to sign if they agreed with ??

He later talks about the CMRC being a place for the research community to speak with a single voice in the UK (as my part transcript above shows). Obviously that’s erasing Iime which I always felt the CMRC conference was designed to do and is a bit arrogant as they don’t have universal support eg MERUK left, Iime wouldn’t join etc. But I dont recall him saying a single international voice

I can’t see how the CMRC can claim to represent the most engaged leading CFS researchers when few of those involved attend Iime conference outside the charities. Is Carmine Pariante or Paul little interested in attending to learn what exciting ME science the USA researchers are doing, no, so they’re not really interested are they. It’s good they’re now trying to involve the UK ME Biobank rather than compete with them and there is CP and NH but I still think the MRC led or involved effort since 2004 when they started having CFS conferences with AFME has been amateurish, lack lustre under resourced and unfocused.

 

How can you not 'look back' when BACME still exist?

 

So, people with arthritis are not in pain and not fatigued? Really?

My late mother suffered with rheumatoid arthritis. I remember her main symptoms were pain, fatigue and lumpy painful joints, particularly in her hands, but also in her shoulders, knees and hips. Mum was one of those people who could justifiably be described as "stoical", and didn't talk about her health problems or her symptoms very often so she probably had other symptoms that I never found out about. I suspect if she presented with RA now she might never be diagnosed with RA, and would be told it was fibro and ME instead, thus removing the cost of any treatment and leaving her to rot.

Are the arthritis researchers really trying to put themselves out of a job?

 

Sorry, I wasn't quite clear enough. It appears that arthritis researchers are interested in studying fibro and ME patients due to the shared symptoms with arthritis patients, but they do appear to grossly simplify things into non-arthritis patients with pain=fibro patients, and non-arthritis patients with fatigue=ME patients.

 

Just watched the bit where SH talks about "after struggling for 5 years to get the molecular and biomedical aspects of this disease taken seriously ... beyond the point of no return now, not going to go back any more, not looking over our shoulders any more ... that's done ... we're going to go forward".

My take on this is that SH was clearly saying, albeit obliquely, that the iron grip of the BPS camp is now totally broken, and that the biomedical researchers no longer have to look over their shoulders in fear of that. I imagine that in truth SH must have been party to that iron grip, but to me I get the strong sense he is keen to be on the winning side, and wanting to divorce himself from anything BPS. Time will tell of course. Whether SH is wholly sincere, or is simply covering his behind, or perhaps more likely a bit of both, I suspect it's a bit academic - BPS looks to now be a very bad taste in his mouth. It would be nice to think the CMRC just might start to show its real worth. I also suspect that EC's antics did us all a big favour, especially thanks to @dave30th's exposure of them. She basically made a laughing stock of the CMRC, and of her own profession, so she did do something right .

So, incurable optimist that I am, I feel that no matter what SH's motives, CMRC looks like it might strive to be a BPS-free zone going forwards. Again, time will tell. All the more reason for still keeping the pressure on exposing the crappy BPS science and its crappy ethics.

 

I’ll believe it when I see it. Personally the broom needs to sweep a bit harder...there still seems to be a lot of crap still in the tent that would be better off being swept out.