Changes in the CMRC executive board (incl. Peter White)

[Bob]

whats the point being in a commonwealth ...

lol, I've never quite worked that one out either! Let me know when you get an answer! (We have the same head of state, so why can't I have a New Zealand passport?)

 

[aimossy]

I can't get an English passport either, I am a generation too far removed I think. It's probably just a hangover from colonial days really, only good for the commonwealth games now - or Wars!

 

[Daisymay]

From the UK Collaborative meeting minutes, conference section, it states that Dr Eric Sykes, UK Collaborative board member and SMC employee, is to lead a session on the press and research, including how the press can distort information and how to prevent it.

Well ironically he'll have no problem finding examples of distortion of information, he need look no further than the SMC's own coverage of ME over many years.

From the minutes:

"It was previously discussed that there will be a session on Tuesday lunchtime on press engagement for researchers. ES will lead this session with a focus on research reporting in the press looking at how information can be reported accurately but can also be distorted and how to prevent this."

Dr Ed Sykes is senior press manager and head of mental health and neuroscience at the SMC

http://www.sciencemediacentre.org/about-us/staff/

 

[SilverbladeTE]

Peter White...don't let the door hit yer arse on the way out, ya knob weasel!

 

[MEMum]

Step forward the Rituximab trials, both the large multi-clinic Norwegian study and maybe even more the UK IiME-funded studies that focus on trying to identify who responds and why by getting up close and perrsonal with B-cell biology.

Hi Simon
I am less optimistic about a UK Rx study after this year's IiME conference than I was after last year's. I don't think there was an official update on it, but I wasn't there right at the beginning.
Last year I asked the question in the Q & A at the end. This time briefly and informally, between talks.
There seems to be a bit of doubt as to whether it would add much to the Fluge/Mella trial......
I know that the charity and those who donated would want max value per pound, but I for one would be very disappointed if it doesn't happen. Norway results won't start to be looked at until late summer 2017.
I know that a couple of years or so isn't much to a researcher/doctor, but to the people with ME it is ages.

 

[Simon]

Hi Simon
I am less optimistic about a UK Rx study after this year's IiME conference than I was after last year's. I don't think there was an official update on it, but I wasn't there right at the beginning.
Last year I asked the question in the Q & A at the end. This time briefly and informally, between talks.
There seems to be a bit of doubt as to whether it would add much to the Fluge/Mella trial......
I know that the charity and those who donated would want max value per pound, but I for one would be very disappointed if it doesn't happen. Norway results won't start to be looked at until late summer 2017.
I know that a couple of years or so isn't much to a researcher/doctor, but to the people with ME it is ages.

I envy you being able to make the conference, hope you enjoyed it and didn't have to pay to high a price afterwardds.

The Dr Jo Cambridge session was on the B-cell pre-rituximab-trial study that aims to identify responders/non-responders, or at least plausible markers that might be able to identify responders.

Last year I asked the question in the Q & A at the end. This time briefly and informally, between talks.
There seems to be a bit of doubt as to whether it would add much to the Fluge/Mella trial......

Could you say why people had doubts? I gather F&M used an asssumptioon of a 50% response to rituximab in the trial, suggesting identifying non-responders would be valuable, particularly given toxicity concerns around long-term rtx use, as well as the cost.

Or was it they thought looking at B-cell biology wasn't likely to help identify responder/non-responders?

Oh, as far as I know the UK trial is still going ahead, though whether or not it will produce results before the Norwegians is another matter.

 

[user9876]

I envy you being able to make the conference, hope you enjoyed it and didn't have to pay to high a price afterwardds.

The Dr Jo Cambridge session was on the B-cell pre-rituximab-trial study that aims to identify responders/non-responders, or at least plausible markers that might be able to identify responders.
Could you say why people had doubts? I gather F&M used an asssumptioon of a 50% response to rituximab in the trial, suggesting identifying non-responders would be valuable, particularly given toxicity concerns around long-term rtx use, as well as the cost.

Or was it they thought looking at B-cell biology wasn't likely to help identify responder/non-responders?

Oh, as far as I know the UK trial is still going ahead, though whether or not it will produce results before the Norwegians is another matter.

Its also worth saying that trials need replicating by other people so its good to have a second group carrying out a rtx trial which will hopefully get similar results to the F&M trials.

 

[Scarecrow]

Three new members of the CMRC board have been announced:

Carmine Pariante, of KCL, who I assume is the MRC funded researcher referred to in my OP
Mark Edwards. Not sure who he is. The name is too common for me to identify anyone with certainty. @charles shepherd, can you help?
Chris Ponting (I think this is him so he'll be the genomics expert)

One other person has been approached.

 

[Sasha]

Three new members of the CMRC board have been announced:

Carmine Pariante, of KCL, who I assume is the MRC funded researcher referred to in my OP
Mark Edwards. Not sure who he is. The name is too common for me to identify anyone with certainty. @charles shepherd, can you help?
Chris Ponting (I think this is him so he'll be the genomics expert)

One other person has been approached.

Possibly Mark Edwards is this guy?

 

[Scarecrow]

Possibly Mark Edwards is this guy?

Yes, possibly. I found him also. He has an interest in functional neurological disorders but I couldn't tie him to ME/CFS. Can you?

 

[Cheshire]

Dr Mark Edwards is a specialist in movement disorders and "functional" neurological disorders. He often works with Dr Jon Stone who owns this site http://www.neurosymptoms.org/ (here's the page about CFS: http://www.neurosymptoms.org/#/fatigue/4533053151, that's really far away from the CCC or IOM...)

Their approach is rather ambiguous. Some of their writings could be seen as promoting the fact that functional doens't mean psychogenic, and other texts could be interpreted in the exact opposite way.

They often work with Michael Sharpe. That says it all...

Not a good news at all IMO.

 

[Cheshire]

Dr Mark Edwards runs a clinic for functional motor disorders.
http://www.uclh.nhs.uk/HP/GPNEWS/Pages/Clinicforfunctionalmotordisorders.aspx

Treatment is typically based on provision of specialist physical therapy (or specialist physiotherapy support to community therapy services), as well as facilitating access to cognitive behavioural therapy and the inpatient service for functional neurological symptoms offered by the Hughlings Jackson ward team depending on patient needs.

Where the diagnosis of a functional disorder is communicated to the patient, doctors often rely on purely psychiatric formulations (based, for eg, on triggering by childhood or recent psychological trauma) which are often rejected by patients. One reason for this may be repeated epidemiological findings of a lack of association in the vast majority of people between such events and functional symptoms. The clinic takes a holistic approach to these symptoms and their causation and tries to offer pragmatic management.

Here's another example of their ambiguous theory.

From psychogenic movement disorder to functional movement disorder: it's time to change the name.
Edwards MJ1, Stone J, Lang AE.
Author information
Abstract
Successive attempts at rebranding may be behind at least some of the proliferation of terms we have at our disposal when describing patients with what are now most often referred to as "psychogenic," "conversion," or "somatoform" symptoms. The most popular term in the movement disorder literature, "psychogenic," provides the aetiology of the disorder within the name, indicating that the symptoms are "born of the mind." Here we argue that it is logical to stop using a term that defines the disorder with regard to a poorly defined aetiology that is not supported by current evidence, and, instead, to use a broad term-functional-not as a "polite eponym" but as a term that is freer from such assumptions and does not reinforce dualistic thinking. The main argument for change is not political or even practical, but scientific.

© 2013 International Parkinson and Movement Disorder Society.

With Jon Stone, he demonstrated that the traditional freudian model is not valid, that depression or anxiety aren't present in all patients, but they nonetheless think that these disorders are at the frontier of psychiatry and neurology.
One red flag for me is that they haven't done nor promoted any biomedical research into undertanding any physiopathology that could be driving FNDs.

 

[Simon]

Chris Ponting (I think this is him so he'll be the genomics expert).

Delighted to see Prof Chris Ponting joining the board.

Professor Chris Ponting - Associate Faculty - Wellcome Trust Sanger Institute

Chris Ponting's group analyses next-generation sequencing data to better understand basic biological and disease processes.

Chris contributed to many landmark genome sequencing projects, but his work now focuses on disease genomics, noncoding RNA, and next-generation sequencing functional analyses.

His main work is with the MRC:
MRC Functional Genomics Unit: Ponting Group
And I hear he is very good.

Some disease genomic for mecfs would be very welcome.

 

[Scarecrow]

This is a comment made in 2012 by Carmine Pariante. A fair comment about the role of mitochondrial dysfunction in ME/CFS but the part I've bolded clearly lays out his own view. I do hope that some of the recent research will have helped him to change his mind.

http://www.biomedcentral.com/imedia/1169912504863162_comment.pdf

This is an interesting review and it will be helpful in clarifying the simplistic
assumption and ME/CFS and chronic inflammation are the same process. It s
thorough from a biological and mechanistical point of view, however I would
require ( as a Major Compulsory revision) that ME/CFS is given the appropriate
clinical and psychological interpretation. Saying that ME/CFS has mitochondrial
dysfunction at is core is an overstatement, as these are all proposed
mechanisms that are perhaps predisposing or contributing to the illness. For
many, including this reviewer, CFS/ME is predominantly a condition triggered by
excessive rest in predisposed individuals following acute triggers, and its
interpretation requite a psychosocial and psychiatric framework. This needs to
come across more clearly in the review, otherwise the readers may perceive this
review as if the pathogenesis of CFS/ME has been fully discovered (and it is due
to a mitochondria dysfunction) which at this stage cannot be accepted as a
proved statement. I would request that the abstract and that page 14 are
particularly edited to avoid the current emphasis on mitocondria dysfunction.

 

[Sasha]

Unimpressive - yes, let's hope he's moved on with that.

 

[Scarecrow]

Minutes from the meeting on 7 July

http://www.actionforme.org.uk/Resou...uments/research/cmrc-minutes-070715-draft.pdf