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

Interesting exchange of views on the MEA FB post about this today. I won't paraphrase it as I don't know enough and don't want to say something wrong but it was to do with the people still involved. If someone is more with it today then I am then maybe they could take a look x

 

I want to see this change, or I want funding for these groups not CMRC.

CMRC have much to prove

 

There does seem a different feel to the minutes of February, more sense of energy, action and urgency. I wonder if unrest has made an impact, or the nih doing stuff or Esther leaving which opens up space for new approaches

 

Basically this, a disease mechanism will decimate them but they will face no consequences for the people they have harmed. I hope some of those victims go to court though, in retrospect the writing is all there, its just ignored by the harm patients at any cost CBT dotards

 

It's a different study. The link I gave you shows an end date of September 2018.

It seems very much at odds with the PEM study, but people go where the money is. I'm very concerned by this, because even his peers don't seem aware of what he's doing.

 

See this tweet of his about Unrest; he later helped present the film at the Scottish parliament. Also check out the comments about him in this thread, Including from those who have met him.
https://twitter.com/user/status/951371183244632065

Also
https://twitter.com/user/status/725769439078174720

I agree with that, and think that will be very much the focus. It’s what is implied within the latest set of minutes.

 

Several points, As Upton Sinclair stated "It is difficult to get a man to understand something, when his salary depends on his not understanding it", as a new head he would be obligated to continue programs in progress, PACE is still on the books and power corrupts.
We may be tempted to look for good signs since we want support so desperately but we cannot forget we are dealing with an institution that believes its opinions matter more then patients lives or autonomy, is not afraid to lock people up on trumped up lies and has blown money and smears us to maintain their power.
If they want to change course they can but so far we are grasping at straws if we believe anything has already changed. They can start with acknowledgement and an official apology...

 

Having spoken to others, it looks like that very palatable PEM study was used as the basis for joining the dots between functional movement disorders, CFS and non-epileptic attacks under a wider 'functional neurological disorders' category.

They're certainly using very clever language, but my feeling is that the aetiology suggested by this new paper will ultimately result in rewiring the brain--i.e., CBT. I really want to be proven wrong on this, as the 2015 paper looked good, but it's there in black and white. The only possible silver-lining is if this unifying theory collapses during the study and the authors admit FND is a made-up category after all.

 

I'm a bit confused by your post. Simon was talking about Chris Ponting, who is the new deputy head at the CMRC, not its head. PACE isn't on the CMRC's books and never has been. The CMRC has never locked people up. Are we talking about the same thing?

 

Am i mistaken about them being associated with Crawley and others?

 

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.

 

But Crawley does and called PACE a great trial. Fox in charge of the henhouse
I hope this guard change brings positive progress, but the proof will be in the pudding, i count my chickens after they are hatched.

 

Hmmm ... I think I'll give that pudding a miss then, thank you very much ...

 

I remain very sceptical of this.
I don't think Holgate can replace the deputy chair and add the word biological to their charter and all of a sudden everything changes.

Holgate should resign. He presided over this mess, it was his big tent, which had exclusive access to some and no access to others.

We need to turn the screw here and demand Holgate steps down, or at the very least acknowledge his errors and denounce the PACE trial for once and for all.

 

How long has Holgate been chair? When is his 5 years up?

 

At least since 2014. Which may have been when it started.

 

Best quote of the day in response to Crawley leaving on AfME fb page

Dawn Ward ''Bye bye Crawley, hopefully off to do 10% extra every week until she combusts''

 

I've been doing some more digging on this issue ..

The following info has been extracted from the latest MRC "Grants and fellowships awarded (CSV, 29.22MB)". Please note that this appears to be the only MRC grant awarded to Professor Mark Edwards, and more information is available within the spreadsheet for those interested.

Grant Reference Number: MR/M02363X/1
Project Title: A Unified Mechanism for Functional Neurological Symptoms
Start Date: 01/10/2015, End Date: 30/09/2018, Meeting Date: 11/03/2015, Meeting Name: NMHB Board Meeting March 2015
Total Grant Value: 661946.896

Following on from @adambeyoncelowe original reference, this paper seems to have informed his writing in the Handbook of Clinical Neurology (Volume 139), 2016. So where is this PEM study that was muted at the CMRC conference in 2015 - transcript of his talk here. I can only think that the PEM aspect of the study was/is to be an add-on to the study above, given that the study is not due to end until 2018? I have been unable to source any further clarification regards the PEM study as outlined in the transcript, or whether Edwards, Harrison and Kilner are indeed actively undertaking this PEM study. Any clarification on this latter point particularly, would be welcome for sure.

Wishing everyone improved health and every happiness. John

 

"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 and the BPS model explains what is really going on. That there is a biological beginning, sets off a mental health issue and the symptoms patients experience are sustained due to thought processes.

https://www.thefreedictionary.com/underpin

un•der•pin
1. to prop up or support from below; strengthen.
2. to replace or strengthen the foundation of.
3. to substantiate or corroborate.

 

It started 2012 didn't it or 2013. He's certainly had five years there too but was apparently unanimously voted back in. Before that he headed the ME expert group which ran from 2007-8 and was supposed to be about coming together to further research too. Similar people involved. It folded when the 2012 funds were given and was replaced by CMRC.