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

[Forbin]

I'm somewhat more optimistic, albeit for cynical reasons. The simple fact is that if a biological treatment was found tomorrow (say, for example, that the Rituximab trial had been a gigantic success) then I think they would simply fade away. That was exactly the case for stomach ulcers - you don't find those who promoted the stress theory fighting a rearguard action to undermine the Pylori theory.

It turns out that a fairly large percentage of the population harbors the H. pylori bacteria, but a much smaller percentage actually develops stomach ulcers. Thus it's been argued that some factor in addition to H. pylori must be present for stomach ulcers to be triggered. I know I've seen articles up to at least the mid 90's where researchers were arguing that psychological stress in conjunction with H. pylori must be the cause of stomach ulcers. Once initiated, however, it doesn't seem like stress reduction can cure ulcers. For all I know, stomach ulcers are triggered by a combination of H. pylori and athlete's foot. Perhaps it's more likely that H. pylori takes advantage of a transient excursion of the immune system to take hold.

My cynicism says that there is precisely 0% damage to the career of somebody who claims an illness is psychogenic in nature if that claim is subsequently found to be false.

Well, it helps if the person's entire career doesn't rest on such claims. We remember Sir Arthur Conan Doyle for creating Sherlock Holmes, and tend to forget that he believed that you could photograph tiny fairies down in the garden.

Perhaps EC sees the value of expanding her porfolio into areas less likely to be overturned. She may also finally feel that she's realized her goal of being able to say, "At least I made a difference to kids with chronic fatigue."

Funny thing about the term "difference," though. It's scalar.

 

[NelliePledge]

Not all all - Esther Crawley was the deputy chair and has just been replaced by Chris Ponting. But the CMRC didn't have a hand in PACE and don't lock anyone up.

G Murphy still on the CMRC board had a hand in PACE I believe

 

[Sasha]

"biological mechanisms that underpin CFS/M.E."

That word, "underpin" is what concerns me most. They are telling everyone exactly what they are doing. All they are looking to do is find the biological mechanisms that support what they believe they already know, that CFS/ME is a mental health problem

I think you're doing those scientists in the CMRC who believe that ME is entirely physical a great disservice here. It seems clear now that there are quite a few, and that they're trying to turn things around. I don't think it helps us to see the CMRC as a blob consisting entirely of BPS people - or now, even driven or heavily influenced by BPS people.

 

[Sly Saint]

Lest people forget:
BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)


eta: why Holgate must go

 

[Simon M]

This looks interesting:

“We have laid some important foundations” says Prof Stephen Holgate, Chair. “But this is not enough. We need action from the highest level and the CMRC is committed to working with others to drive this. Most importantly, we need to see results now, not in another five years."

Let’s hope there is action from the highest level.

 

[Awol]

The CMRC is very good at echoing what others have been saying for years and have actually been doing something about.

To coin a phrase used by Simon Wessely and Peter White, I see old wine in new bottles in this latest news from the CMRC.

 

[Solstice]

I think you're doing those scientists in the CMRC who believe that ME is entirely physical a great disservice here. It seems clear now that there are quite a few, and that they're trying to turn things around. I don't think it helps us to see the CMRC as a blob consisting entirely of BPS people - or now, even driven or heavily influenced by BPS people.

Can't blame people for being sceptical of an organisation that for most of it's existence did nothing to help pwme. Instead, if anything, gave a platform to people who have been seriously harmful to our cause. Crawley going, Ponting taking her place and the new agenda are all well and good. But I see them as first steps. There are still too many people in that organisation that have been harmful in some way or other.

 

[Sasha]

Can't blame people for being sceptical of an organisation that for most of it's existence did nothing to help pwme. Instead, if anything, gave a platform to people who have been seriously harmful to our cause. Crawley going, Ponting taking her place and the new agenda are all well and good. But I see them as first steps. There are still too many people in that organisation that have been harmful in some way or other.

I don't blame people for being sceptical at all. But I think we've got to be careful not to express opinion as fact, and not to put a spin on words that goes way beyond what they actually say.

I think the signs are very hopeful but I agree that we'll just have to wait and see. I hope we won't be waiting for too long. I for one would like to see this change that David Tuller mentions in his post today:

Beyond yesterday’s announcement, the CMRC could take another easy step that would grab the attention of the patient and advocacy communities: change its name to the ME/CFS Research Collaborative, or even just the ME Research Collaborative. There’s no point in continuing to lead with “chronic fatigue syndrome” just to cater to the preferences of the CBT/GET ideological brigades. Everyone else appears to recognize the damage and misunderstanding that name has caused in the thirty years since it was coined.​

 

[Awol]

I don't blame people for being sceptical at all. But I think we've got to be careful not to express opinion as fact, and not to put a spin on words that goes way beyond what they actually say.

I think the signs are very hopeful but I agree that we'll just have to wait and see. I hope we won't be waiting for too long. I for one would like to see this change that David Tuller mentions in his post today:

Beyond yesterday’s announcement, the CMRC could take another easy step that would grab the attention of the patient and advocacy communities: change its name to the ME/CFS Research Collaborative, or even just the ME Research Collaborative. There’s no point in continuing to lead with “chronic fatigue syndrome” just to cater to the preferences of the CBT/GET ideological brigades. Everyone else appears to recognize the damage and misunderstanding that name has caused in the thirty years since it was coined.​

I think it's reasonable to have learned to read between the lines when it comes the to CMRC and their BPS colleagues generally. They have a long history of using words to very good effect and there is no evidence, as far as I can see, that this has changed, and between them they've been influential over ME and ME Research for decades, so they have only themselves to blame if some people aren't prepared to wait and see.

I would love to see the term CFS dropped from use altogether, but I don't think this would signal a genuine shift at the CMRC because the charities involved use only ME in their own names e.g. Action for ME (Myalgic Encephalomyelitis) and ME Association (Myalgic Encephalopathy) and formerly AYME, yet we know that AYME and AfME enabled and supported research such as PACE and SMILE trials etc. Also because of the shift towards putting ME under the umbrella of functional neurological disorders, I think they're more open to calling it ME now, especially with the 'opathy' ending as that accommodates hypotheses about malfunction within the scope of functional disorders.

I do have hope, but it's not in the hands of the CMRC.

 

[Russell Fleming]

This was the 2015 ME Association report on the PEM study being undertaken by Prof. Mark J Edwards and Dr Neil Harrison - both CMRC members. It includes the comments the study attracted from Prof. Jonathan Edwards at the time:

http://www.meassociation.org.uk/201...es-new-neuroimaging-research-16-october-2015/

I'm still not sure if this is the same study as you have commented on above. I can't seem to link them together but will try and find out more.

Russ

Looks like I was misinformed. Apparently, Prof. Mark J Edwards is NOT a member of the CMRC/Executive (Just had this confirmed). There is a Mark Edwards on the Executive but he is a lay member with pharma/industry expertise.

Dr Neil Harrison is a member of the CMRC Executive and is working with Prof. Mark J Edwards on the £600k MRC-Funded study, of which the ME/CFS PEM study is a part.

I'm still confused about this MRC-study however, but hope to have some clarity on the whole thing - that I will share with you - as soon as possible.

Apologies. I'll update the ME Association website now.

Edit:

Here's what I have now been told is the correct list of executive and observers. Note also that Ed Sykes from SMC is no longer on the list:

http://www.meassociation.org.uk/res...e/cmrc-executive-committee-becoming-a-member/

 

[Barry]

I think you're doing those scientists in the CMRC who believe that ME is entirely physical a great disservice here. It seems clear now that there are quite a few, and that they're trying to turn things around. I don't think it helps us to see the CMRC as a blob consisting entirely of BPS people - or now, even driven or heavily influenced by BPS people.

I agree with this. To me the word "underpin" is being used in the same way I often use it, in the sense of "at the root of", "at the heart of", "fundamental to", etc.

 

[Melanie]

I agree with this. To me the word "underpin" is being used in the same way I often use it, in the sense of "at the root of", "at the heart of", "fundamental to", etc.

None of those words or expressions is used for the term "underpin" or underpinning. https://dictionary.cambridge.org/dictionary/english/underpin

I think we need to look at the word and all its meanings as defined in a dictionary and thesaurus. This is how they get us every time. They word their Mission Statements and Visions in such a way that they leave open the BPS model. They have not let go of the BPS model and until they say, "The BPS Model nor any mental health or thought process is believed to be involved with ME or CFS" then guess what, they still believe it and are looking to make it fit. They are now trying to say that a biological beginning has started a mental health issue where the thought process is driving the symptoms.

The ME organizations need to write to the CMRC and ask them point blank, do you believe the unproven BPS model or any mental health issue or thought process is driving the ME or CFS Symptoms? And you need to say ME or CFS because they are always going to look for an out in all of this and then try to say, well not ME as defined by ICC and not CFS as defined by CCC but CFS as defined by the Oxford Criteria which is invalid because the Oxford Criteria defines CF. And as we all know, CFS may lie on the ME spectrum much like Autism and Asperger's is on a spectrum yet not be the same disease OR it may be a difference in severity. So I think to leave behind a very large group of people who meet CCC and not ICC is wrong. Not to mention SEID which is, in fact, a valid criterion and captures another group either on the spectrum or severity. It is wrong to leave behind very large groups of patients as defined by CCC and SEID who onset and express many of the same symptoms as a smaller group of people. And if the number of patients is larger, they will research this spectrum. Small groups do not get research funds.

What also needs to be asked is the criteria they are behind because if they say the Oxford Criteria then guess what? They aren't defining ME, CFS or SEID and just CF.

Here in the US many of us are appalled at the "research" at the NIH which is on only 40 patients, will take 5 years, and two of the criteria are Fukuda and Reeves which are invalid and being mixed in with SEID and CCC. What they will find is pretty much a non-answer. FIVE YEARS to get to a NON-ANSWER! Oh, they will find this anomaly and this suspicious fact but to take FIVE YEARS to get there is an abomination.

 

[Simon M]

Thanks, @Russell Fleming

Here’s the full Who’s Who of the new CMRC board. No Ed Sykes from the SMC

Executive board members:

Following the CMRC meeting in February 2018, members of the executive committee were confirmed as:

Chair: Professor Stephen Holgate (University of Southampton)

Deputy Chair: Professor Chris Ponting (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh),

Members:

• Professor Patrick Chinnery (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
• Dr Joanna Elson (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
• Dr Neil Harrison (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
• Prof Paul Little (Professor of Primary Care Research within Medicine, University of Southampton),
• Professor Carmine Pariante (Biological Psychiatry and Head of section, King’s College London),
• Professor Colin Smith (Functional Genomics, Brighton University),
• Sonya Chowdhury, CEO, Action for M.E.,
• Dr Charles Shepherd, Hon. Medical Adviser, The ME Association,
• Chris Macdonald/Craig Bullock (Arthritis Research UK),
• CMRC Patient Reference Group,
• Michael Dalrymple (MRC-Technology),
• Mark Edwards (Lay member with pharma/industry experience),
• Lars Erwig (Senior Director Discovery Medicine, GSK),
• Mark Jones (UCB Pharma),

Official observers:

• Ana Artunes-Martins (Programme Manager for population sciences and public health, MRC),
• Dr Gabrielle Murphy (BACME),
• Representative from the National Institute for Health Research (NIHR).

 

[Amw66]

It will be interesting to see which of those who left choose to return.

 

[Esther12]

Here’s the full Who’s Who of the new CMRC board. No Ed Sykes from the SMC

Thanks Simon. Do you know if that means that Sykes has gone as an official observer, or was he only ever someone who just turned up? I was always a bit confused by his involvement - how did he get in there?!

 

[Sasha]

I think we need to look at the word and all its meanings as defined in a dictionary and thesaurus. This is how they get us every time. They word their Mission Statements and Visions in such a way that they leave open the BPS model. They have not let go of the BPS model

If by 'they' you mean the CMRC, as opposed to self-avowed BPS proponents such as Esther Crawley, then I don't know what you're basing this on. We can't read people's minds. I can understand if you find ambiguous the CMRC's statement that 'biomedical mechanisms underpin ME/CFS' because the BPS model subsumes this view - they see the initial cause as a virus or some other insult (biomedical) and then the condition perpetuated by deconditioning (biomedical) plus mistaking those symptoms for an illness.

But to take that ambiguous statement as saying definitely that the whole CMRC thinks that ME/CFS isn't a physical disease goes way beyond what's in front of us.

We're all on the same side here and I understand people's suspicion and worry. But when proper, serious biomedical scientists such as Chris Ponting get themselves into a leadership position and the CMRC restates its aims and rewrites its constitution, it seems so disparaging of the efforts of those biomedical scientists to read the worst possible interpretation into what they say, and to state that opinion as fact.

I think we need to resolve this with dialogue. @Andy, what about inviting some of the key players to the same sort of dialogue here on S4ME as we had with the LSHTM crowd?

 

[Jan]

Thanks, @Russell Fleming

Here’s the full Who’s Who of the new CMRC board. No Ed Sykes from the SMC

Executive board members:

Following the CMRC meeting in February 2018, members of the executive committee were confirmed as:

Chair: Professor Stephen Holgate (University of Southampton)

Deputy Chair: Professor Chris Ponting (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh),

Members:

• Professor Patrick Chinnery (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
• Dr Joanna Elson (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
• Dr Neil Harrison (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
• Prof Paul Little (Professor of Primary Care Research within Medicine, University of Southampton),
• Professor Carmine Pariante (Biological Psychiatry and Head of section, King’s College London),
• Professor Colin Smith (Functional Genomics, Brighton University),
• Sonya Chowdhury, CEO, Action for M.E.,
• Dr Charles Shepherd, Hon. Medical Adviser, The ME Association,
• Chris Macdonald/Craig Bullock (Arthritis Research UK),
• CMRC Patient Reference Group,
• Michael Dalrymple (MRC-Technology),
• Mark Edwards (Lay member with pharma/industry experience),
• Lars Erwig (Senior Director Discovery Medicine, GSK),
• Mark Jones (UCB Pharma),

Official observers:

• Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
• Dr Gabrielle Murphy (BACME),
• Representative from the National Institute for Health Research (NIHR).

Thanks Simon.

I presume this list didn't have to be ok'd by Simon Wessley this time?

 

[Sasha]

I was just saying to someone this morning that the CMRC should ditch the SMC if they wanted to show that they're serious, and behold:

Here’s the full Who’s Who of the new CMRC board. No Ed Sykes from the SMC

That's incredibly welcome. I wonder if that means they've been shown the door altogether? I'd like to see someone else entirely in charge of media comms.

 

[ladycatlover]

I am horrified that BACME are going to vote at their conference whether to join CMRC. And even more horrified that it appears CMRC hasn't complained about it. I have no confidence in CMRC after reading about that. I don't understand why nobody in CMRC appears to understand why patients might be worried by this. So far as I'm concerned both organisations can go to hell in a hand basket. Though hope I'm proved incorrect in my assessment of things.

 

[Jan]

We're all on the same side here and I understand people's suspicion and worry. But when proper, serious biomedical scientists such as Chris Ponting get themselves into a leadership position and the CMRC restates its aims and rewrites its constitution, it seems so disparaging of the efforts of those biomedical scientists to read the worst possible interpretation into what they say, and to state that opinion as fact.

I would expect said biomedical researchers to know enough to completely understand our reservations, knowing how badly pwme have been served in the past both inside and outside of the CMRC. I can't trust anyone explicitly, they were all prepared to work with EC on Mega, and SH still sings her praises and doesn't believe there was anything wrong with PACE.

I hope to God that the SMC have left. I believe it's time for Holgate to leave too.