United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

I think it's lovely that Chris Ponting is a long time friend of yours @Simon M and hope that neither of you take personally any points I make about the CMRC. I was just so shocked to find out in 2010 what's been going on behind the scenes with these organisations and to see, by raising concerns about the SMILE trial feasibility study over the next few months, how entrenched the BPS lobby is in UK establishment organisations and the lengths they appear to go to close ranks in seemingly blatant denial of the evidence in black and white before them, that it's not that I lack trust in certain individuals coming new to the field via the CMRC route, it's that I have learned to my cost how devious the puppet masters can be.

I remember how reassured many people felt about the involvement of Julia Newton when CMRC launched and how one of her papers on muscle happened to feature in mainstream media at the time (unusual as we all know given the skew of the UK Science Media Centre) so my hopes will never again rest on the involvement of one individual, even at the level of Deputy Chair, especially while Stephen Holgate is voted in to remain Chair, and until such time as CMRC makes a clear statement confirming they do not view, and will not support funding for, research investigating ME in relation to Functional Neurological Disorder because this is not how it's classed by WHO and there is already a mountain of evidence to the contrary.

I realise that some cases of functional disability may be among the large number of people given the ME or CFS diagnosis in UK, but that shouldn't be the focus of an organisation or group purporting to have biomedical research as its focus (I'm surprised they call this 'new' in any case).

 

The thing that worries me is that if she's "Director" she'll be in charge of what research gets done. And I'd bet my bottom dollar that it'll be the usual carp (as we say on moneysavingexpert forums to avoid getting a line of asterisks for bad language). Plus she'll block any biological research too. Puke.

 

I’m liking what I hear about @Chris Ponting and I hope he will have as much free rein as the person he is replacing had.

My niggling concern is the Functional Neurological Disorder research and the team who are doing it. I would like reassurance that this is not going to be BPS under another name. This in itself is quite an issue for me and places doubts in my mind about whether I’m being naive to be hopeful, with the new deputy chair sounding promising.

It’s easy to get hopes up when one has been so ill for over a decade.

Is there any way @Chris Ponting that you could address this (and other questions that members of the forum have mentioned) in an interview with @Andy

I think it’s really good that the CMRC intend to interact more with ME patients and carers, this (interview) would be a very good place to start.

I want to have hope, but this FND is really worrying...especially when you consider the history of ME and how patients have been treated.

 

I don't think she will because biological research is essential to keeping patients and the paying public happy and to bolster the biopsychosocial movement and expand the category of functional disorders. MEGA was driven by Esther Crawley with Stephen Holgate and CMRC were describing it as 'biomedical' 'biological' 'big data' etc. I think they just made a faux pas by launching a public petition for funding support, which in turn, opened a lot more people's eyes to the need to read between the lines of the material put out to the public by the CMRC.

I view these changes as repositioning to stand a better chance of getting the MEGA study funded and bearing in mind that the Patient Advisory Group was initially formed to support the MEGA study and that some patient advocates resigned from that.

I would feel awful sounding so negative, and might keep my thoughts to myself, if it weren't for the fact that there are biomedical researchers in UK investigating the pathology with a view to establishing diagnostic tests and treatments, and a UK Centre of Excellence for ME developing, with international collaboration and with the hub at Norwich Research Park, where the work moves into the multi-million pound new building Quadram Institute this year, and 2018 is the 13th year of the international biomedical researchers conference and colloquium events organised by Invest in ME Research, taking place in London May/June, without which I wonder if CMRC would have been formed in the first place.

All the above instigated, and so far mainly funded, by patients and families doing all their own work for free.

 

Various bits of confidential information make me suspect that all the hoo-ha last year, despite being regrettable in many ways, may have shaken things down into something near the dream scenario. The people who matter seem to be coming out on top and there is every indication that they are very keen to start collaborating with each other.

 

Problem is @Jonathan Edwards that some of us have heard this all before, confidential hints at change and better things to come and so it goes on and on while children continue to suffer and people die before their time, whether by suicide or organ failure.

 

I think that is unduly pessimistic. Things have changed dramatically even in the time I have been aware of ME research and the most impressive changes have occurred in the last 6 months. International collaborations that ought to have been set up years ago look as if they may actually materialise.

 

I appreciate your contributions to the field and respect your opinions @Jonathan Edwards but my comment is based on realism and I will be only too delighted to find in the future that things have really changed for the better, however if it does, I know that's in good measure down to the hard work of Invest in ME Research leading the way and laying the foundations, as well as individual patients and advocates.

 

The problem is, for every 'breakthrough', there's a push back. Maybe not now but some time soon.

This isn't the first time biomedical science has seemed to come to the fore in this arena. Until the late 80s, in fact, many people in the UK did get proper treatment and were diagnosed with scans and biopsies. Then Wesseley changed things.

All it takes is one charming person with a biopsychosocial agenda, and things can go back. As any movement from history will attest, any 'wins' made can be taken away if you don't continue to fight. The universe is more cyclical than we like to think, and ideas of progress as this inescapable, forward-moving thing are largely an illusion.

You only have to look at the rise of, say, the far right in Europe and how it mirrors the first half of the 20th Century to see how things sometimes go backwards.

Am I cynical? Absolutely. But am I wrong? I really hope so.

 

Holgate has wasted 10 years of our time. 10 years of our lives.

We Are So Much Older Now.

And many of us no longer expect to be still alive to see any 'fruits' of the CMRC research.

I heard Holgate speak at the RSM conference in 2008. A whole decade ago. Astute ME analysts, including me, concluded then, in 2008, that Holgate was a front for the MRC, and would not, in real terms, move on the vital bioresearch that we need.

 

I'm another one who doesn't expect to be still alive by the time any treatments are discovered. It has been soul destroying waiting for decade after decade as any progress made by researchers back in the 80's regressed into 100's of psych studies.

Is there any chance Holgate may step down @Jonathan Edwards ? Patients have no faith in him, the trust has dissolved over many years of talk, but no action apart from BPS studies.

 

@Jan said:

'Is there any chance Holgate may step down @Jonathan Edwards ? Patients have no faith in him, the trust has dissolved over many years of talk, but no action apart from BPS studies.'

A few years ago I wrote to my local NHS trust asking for help. They wrote to my GP saying that Holgate was a safe pair of hands'.

My GP wrote to him a few times but never got a reply. As requested by my GP, I phoned Holgate's office and left messages but never got a reply.

Eventually my GP's receptionist, after spending quite some time trying to call, was told to send me to a psychiatrist. I'd had enough of them and turned down the suggestion.

I still have no faith in him.

 

I too am thinking I won’t be here to see treatments be discovered. It is absolutely soul destroying you are right @Jan

I don’t have faith in Holgate, Pariante or Harrison.

 

We should not support any project that Harrison is leading. It is indeed psychiatry with a reductionist (neuro) bent.

 

He’s not leading the CMRC but one board member among many and I think we need to look at the whole picture. The deputy chair is Chris Ponting, and another recent person joining is Professor Patrick Chinnery, a much more senior academic than Harrison and a mitochondrial specialist. I don’t like the functional approach either, but it would be a shame to throw out the baby with the bathwater. This new initiative could generate many millions of pounds for biomedical research in the UK. I think we should give it a chance without insisting on purity of board membership.

 

Took me a moment to suss the typo here Simon .

 

Oh, no, I meant I wouldn't support any project he was leading. As far as I understand it, CMRC is just a loose association of researchers, those researchers still have to propose projects, and that's where the work will happen, right?

 

Apologies for the misunderstanding Yes, the goal of the CMRC is to set up a platform to enable research and to generate a pile of cash for biomedical research. Neil Harrison’s current functional disorder project is totally independent of that and predates him joining the board.

Now corrected!

 

So all the time the MRC were setting up and funding a platform for dementia they didn't think to do something similar for us till now?

I was reading back on simons report of the 2013 launch. It all seemed so promising, get in lOTs of funds , the severely affected were supposed to be an important research priority etc. In reality they did nothing for severeME, it didn't even feature at conferences until the third. The ME expert group and CMRC have been underpowered, amateurish talking shops till Now, in A way that only CFS seems to get treated.

Great if they're getting serious and biomedical now but boy they've dawdled.

 

Didn't that project start after Neil Harrison became involved with CMRC though Simon?
(He spoke at IiME Conference in 2015 so Jonathan must have met him through CMRC before then).