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

ASK THEM! "Do you believe the unproven BPS model or any mental health issue or thought process is driving the ME or CFS Symptoms?"

 

Big deal. Disparaging. JUST ASK THEM!

 

As a matter of fact, @dave30th (I believe this is David Tuller) I think you should ask these two questions of the CMRC.

"Do you believe the unproven BPS model or any mental health issue or thought process is driving the ME or CFS Symptoms?"

"What definition/criterion will you use to define ME or CFS?"

 

Additionally, although it is a positive step getting rid of Esther Crawley, what else could they do? You can see she is absolutely NUTS! She is going around pushing the Lightning Process which is garbage even for mental health issues.

So I wouldn't look at it as this being the CMRC recognizing ME or CFS is not a mental health issue but more that they recognize you can't use LP because it doesn't work on anything!

 

We've made contact, early days yet so we will have to see what can happen but this would be one of my goals to achieve.

I think you are referring to the possibility of the CMRC and the BACME conferences being merged? I've made the point to Chris Ponting that this would not be viewed in a positive light by many in the patient community, I believe that he took this concern onboard seriously, and, as far as he is aware, no discussion of the subject has taken place, let alone a decision. Of course we will have to wait and see but I don't believe it is a done deal.

 

Absolutely. I don't believe the CMRC's decision is due to a change of heart, it's more necessity. The patients were making it very difficult to secure funding with their petitions, advocacy and even a rather well known documentary.

 

The minutes state that should BACME vote for a joint conference, “discussion would be needed with the CMRC membership.” presumably includes the patient associate membership. And I suspect many biomedical researchers on the board would have reservations about such a move as well.

The BACME conference has a discussion on psychological vs biomedical with Per Fink as a guest speaker. It looks like he is “opposed” by Dr Lucy Clark, who is part of the GETSET trial (I can’t be certain about Clark). It’s hard to see how an organisation that would stage such a discussion would fit with an organisation with a clear biomedical focus.

 

As I wrote, I think the changes as announced are positive, and it will take some time to see how it all plays out and whether those changes are followed by other positive developments. I believe in the integrity of some people who have been involved with CMRC and I have less confidence in the integrity of others. The fact that the organization felt it necessary to announce these kinds of changes means it has felt the pressure to do so. I think it likely became clear that Professor Crawley's presence was becoming or had become a liability, at least as far as patients and some serious researchers were concerned. Perhaps the same is true about the SMC--I hadn't noticed until the above comment that Ed Sykes was gone. That is another positive sign. I really understand the concerns people have AND I also think it's important to allow organizations some room to shift without requiring them to publicly repudiate their entire pasts--a very, very difficult thing for people and institutions to do, much as we would like everyone to behave that way.

 

We seem to be in agreement, @Melanie!

 

Glad to see that Ed Sykes is gone. His involvement made as much of a mockery of the collaborative as Esther Crawley's involvement did. The announcement does look positive. However, I am 100% reserving judgement as words are cheap whereas actions are the real deal. They've got my attention with the actions they've announced, credit where it is due. I would love to find myself supporting the CMRC for the first time, and maybe I will, but we'll see what actions they take over the coming months.

 

What they're studying and definitions are important and not really covered much. To date they've been doing CFS research essentially with Oxford or NICE criteria. Are there examples of the MRC funding Fukuda or CCC research? Most of the new CMRC members are likely have academic interest in fatigue and movement and so on rather than direct experience knowledge of ME ? The board has mitochondria, genonomics, neuropsychiatric researchers, one doing CFS research. There is Gabrielle Murphy as an observer, is she a clinician immunologist? The charities will have to give the most information on the actual illness and I would like to see an ending to the broadest umbrella approach I think has been favoured so far and studies funded that are using better criteria in uk. I would like recognition of the multiple symptoms - pain, immune malaise, PEM, cognitive issues, sensitivities, OI beyond ideas of physical and mental fatigue. So far the CMRC conference has had big cancer and arthritis fatigue cross over presentations, I don't think that's so helpful.

 

Sorry for going off topic here but @Melanie can I ask you a question about the criteria issue with the NIH study as I am still confused about it. Don’t the participants have to meet all those criteria, not just one? I am not sure whether you are suggesting some of the 40 patients may meet Fukuda, but not CCC, some only Reeves. Yet if they have to meet all criteria don’t we then know they all at least meet CCC criteria? Thanks.

 

@Jonathan Edwards, may I ask you about the Mark J Edwards/Harrison neuroimaging PEM study? As Dr Neil Harrison has now joined the CMRC board, scrutiny of his work in ME seems particularly important. In 2015 you were enthusiastic about it and said it was a good study. In light of that PEM study, as @adambeyoncelowe earlier says in this thread, now seeming to be used as the basis for joining the dots between functional movement disorders, CFS and non-epileptic attacks under a wider 'functional neurological disorders' category, do you still feel enthusiastic about the study? Many thanks.

The reason for the pem study appearing to be used as a way to bring CFS, FMD and non epileptic disorder under a fnd umbrella is due to the publication of an article abstract, frustratingly light on details, by Mark J Edwards and Harrison where they say they now wish to test if non epileptic disorder and CFS also fit their theory - and which they now claim they have some evidence for with fmd - of the mechanism behind symptoms in functional movement disorder. If you click on the outcomes heading at the top of the article page, it brings up a table which includes information of Edwards et al collaborating with the University of Brighton Sports Science Department to integrate fMRI with measurements of exertion with CFS patients. This sounds like the pem study. Link to article/paper titled ‘A Unified Mechanism for Functional Neurological Symptoms’ http://gtr.rcuk.ac.uk/projects?ref=MR/M02363X/1

 

It first came to light here ,https://www.s4me.info/threads/bacme-national-conference-14-15th-march-2018-‘changing-times’.1767/ in the agenda for BACME's conference this year

but maybe, and this is me speculating with no supporting facts at all, it was seen as more possible with Crawley in place at CMRC, and this change at the CMRC has put a major spanner in the works.

 

There does seem to be a very big change from the CMRC in its attitudes to patience and willingness to engage with them:

• There will be either one or two members from the patient advisory group, And two of them joined the February board meeting (it looks like the full members are yet to be decided).
• The new Values statement says “we are a collaborative community inviting all stakeholders to join our programs and shape our activity”. That presumably includes patients (and the statement would make it very hard for any board member who wanted to portray patients in a negative light).

From the minutes of Feb board meeting:

• The report of the January awayday refers to a “patient advisory group [PAG] statement that was a powerful engagement tool to open discussions”. I don’t know what that statement said, but I have a feeling it wasn’t entirely supportive of the previous approach by the CMRC. It seems they may have been in listening mode.
• Chris Ponting stated his view that the PAG should lead the process of establishing future priorities for the CMRC. The notes on the away day also said that the PAG should lead with their views.
• Sonya Chowdhury said there is a need for a mechanism to ensure wider patient involvement beyond the PAG. One of the PAG representatives agreed to identify five or six issues they would like to see addressed by the CMRC as a priority-while wider consultation with patients is undertaken.

 

All I can say is that I have had long conversations with Neil Harrison and was responsible for inviting him to IiME a while back, having heard him at CMRC. I am convinced that he understands the complexities of the ME problem. He is a relatively young investigator needing to get involved in big projects in order to establish a long term research base. He may be compromising in terms of politics but I think he is someone who takes notice of what results actually mean, rather than just using them to shore up a preconceived theory. There are two sorts of psychiatrist, one lot are psychologists and the other lot (often calling themselves neuropsychiatrists he does) are biologists. Neil thinks as a biologist. I have not met Mark Edwards and was much less impressed by an abstract I read of his in terms of theorising.

I understand people's concerns but my feeling is that brain imaging is a useful approach and if somebody is going to develop that approach Harrison is a much better person to have doing it than a lot of others.

 

Thank you @Jonathan Edwards, that is a really helpful and encouraging reply about Neil Harrison.

When you say you read an abstract of Mark Edwards and was not impressed with his theorising, was the theorising involved particularly about ME or just something else?

 

Yes, I see what you mean ...

https://www.bacme.info/sites/bacme..../BACME Therapy & Symptom Management Guide.pdf

Never heard of them until now, but they seem to be a disaster. They may decide citing PACE and GET in their document to be rather poor judgement, in the days and weeks to come.