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CMRC: Dr Lipkin, Workshops & wrap up

ukxmrv

Senior Member
Messages
4,413
Location
London
Holgate said

"Connecting biological and behavioural sciences was also important, urged Prof Holgate, if the patient is going to be at the centre. “Without this, we are going to go nowhere, because much of the symptomatology is expressed through the behavioural sciences.”

If he does actually believe this then we are truly wasting our time with him.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I read the comments in this thread about Prof Holgate's presentation, before I read Simon's post about what Holgate is actually reported to have said...
And I think his attitude is far more optimistic, for us, than some of the comments in this thread would suppose.

Yes, I recoiled when I saw the words: "avoiding a dualistic understanding of the illness as being either physical or mental" (we all know what that means), and the stuff about behavioural sciences...

But he said much more stuff in our favour... e.g...
"...we use new technology to identify new pathways relating to, in this case, CFS/ME using integrated scientific approaches."
"...shouting about the fact that we believe that CFS/ME has a biological basis"
"...multiple forms of a complicated set of interacting causal pathway, involving disordered immunity..."
"We have to think about the biology of those separate process, and identifying endophenotypes; those different causal pathways in the different organs or systemically, that might be causal."
Capitalise on the coming together of interdisciplinary researchers to develop national protocols for biobanking, phenotyping and applying the new ‘-omics’ technologies to large numbers of patients across the full disease spectrum.

These comments are all extremely positive, and they all continue the theme of his previous comments about the intentions of the collaborative.

I guess there is the danger that he gets too close to the psycho-social lobby, and unwittingly becomes influenced by them, but Prof Holgate seems like a sturdy intellect with a lot of experience behind him, and he seems to know his own mind. He has been consistently explicit about what sort of research he wants to see, and it's all about defining endophenotypes by increasing our biomedical understanding of the causal pathways using the latest research technology and data technology.

Although he superficially seems more conciliatory towards the psycho-social lobby now, from the beginning of his involvement in ME/CFS, he was dismissive of the psycho-social research, including PACE: He understands that ME/CFS is not a psychological or behavioural disorder*, and that CBT/GET are not 'treatments'*, and that the PACE trial results were poor*. (How many other researchers understand that about CBT/GET and the PACE trial?) (*There are quotes.)

As others have said here, he has to play some politics in order to make his project work...

As far as I understand, this is his central aim for the research collaborative:
"By working together and speaking with a single voice, he said, we could increase patient confidence and propagate research in a different way by pooling expertise."
(Whether he pulls it off, is another matter.)

So he's trying (perhaps misguidedly - time will tell) to bring opposing factions together, and to do so he has to make compromises if he wants to achieve his goal of bringing everyone together. He has to give something to each side to keep them on board. So i think we've got to make some allowances, and judge his actions rather than automatically feel defeated by a few words that are conciliatory towards the psycho-social lobby. Like others, I do worry that the psycho-social lobby will (as per their history) exert too much influence, but this whole project is designed to move the field forwards in terms of our understanding of the biomedical causal pathways of ME/CFS, and it's absolutely not supposed to entrench vested interests and allow vested interests to reign over a stagnated field of medicine - It's supposed to do the opposite, and move us forwards with proper biomedical research.
 
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user9876

Senior Member
Messages
4,556
I guess there is the danger that he gets too close to the psycho-social lobby, and unwittingly becomes influenced by them, but Prof Holgate seems like a sturdy intellect with a lot of experience behind him, and he seems to know his own mind. He has been consistently explicit about what sort of research he wants to see, and it's all about defining endophenotypes by increasing our biomedical understanding of the causal pathways using the latest research technology and data technology.
.

I have a concern about his comment on combination of behavioral and biological sciences that he is expecting the psychiatrists to have characterized the disease and symptoms. My problem is I read things from White et al and I wonder if they have actually listened to their patients. People like Lenny Jason do seem to have done a better job of characterizing symptoms but I've not really read his stuff. This leads us to a situation where even things like measuring improvements can be hard with things like the CFQ being dysfunctional as a scale. So I guess I'm concerned he is looking for certain things from that community in terms of diagnosing and characterizing a disease that I think they have done poorly.