Trial By Error, Continued: CMRC to Virology Blog: “F**k Off!”

[Ysabelle-S]

One case may be annoying and two a coincidence. But three give cause for suspicion.

There is the Lancet's apparent refusal to respond, followed by the apparent inability of AfME to communicate the decision of its Board. Now we have the CMRC saying keep schtum. This begins to look like a coordinated strategy, possibly the result of advice received.

One would think that it should not have been too difficult to stave off the worst effects of the recent conference debacle: apologise for incorrect use of photo, explain an apparent misunderstanding due to lack of full context of juxtaposition of images, expression of regret for any unintentional impression arising, explanation to DT and further apology. Indicate that the image will not be re-used.The matter would have been forgotten by now and we would have nothing to discuss.

You would expect such an approach to be standard. So why has it not been followed?

Is there a willingness to lose a battle to win a war?

I think their behaviour fits with the pattern of arrogance we've been seeing. They are not to be criticised, and they will not deign to respond. I think if they were a cancer or AIDS related org they wouldn't dare treat the patients like this. It pretty much sums up the sort of people ME patients in the UK have to deal with.

 

[Ysabelle-S]

I think their behaviour fits with the pattern of arrogance we've been seeing. They are not to be criticised, and they will not deign to respond. I think if they were a cancer or AIDS related org they wouldn't dare treat the patients or other commentators like this. It pretty much sums up the sort of people ME patients in the UK have to deal with.

I assume I corrected this in reply rather than edit, hence the double post.

Brain clearly not working properly this morning.

 

[Dx Revision Watch]

I saw one comment on the Tuller blog post:

"For those who would like to see the back of the CMRC (possibly most patients) hasn't Holgate actually done this for us by demoting any sense of it having anything other than a 'voluntary' pals-in-the-pub 'get together' with 'no official standing'? Did't he just let go of the tent pole while we were all watching?"

This 'no official standing' mates club has already attracted an initial £5000 (from the MRC) and an additional £10,000 each from The Wellcome Trust and Arthritis Research UK; at the very least the CMRC should be accountable for the behaviour of its members to those from whom they have accepted funding of at least £25,000.

 

[Dx Revision Watch]

I think their behaviour fits with the pattern of arrogance we've been seeing. They are not to be criticised, and they will not deign to respond. I think if they were a cancer or AIDS related org they wouldn't dare treat the patients or other commentators like this. It pretty much sums up the sort of people ME patients in the UK have to deal with.

Yep. Contempt.

 

[trishrhymes]

This 'no official standing' mates club has already attracted an initial £5000 (from the MRC) and an additional £10,000 each from The Wellcome Trust and Arthritis Research UK; at the very least the CMRC should be accountable for the behaviour of its members to those from whom they have accepted funding of at least £25,000.

Presumably the have to be registered in some way and keep accounts that can be scrutinized. Does anyone know where we can see their financial records? Action for ME should know since they provide secretarial services.

 

[Daisymay]

One case may be annoying and two a coincidence. But three give cause for suspicion.

There is the Lancet's apparent refusal to respond, followed by the apparent inability of AfME to communicate the decision of its Board. Now we have the CMRC saying keep schtum. This begins to look like a coordinated strategy, possibly the result of advice received.

I wouldn't be at all surprised if this were the case.

It comes over as if they are all perfectly happy to behave in such arrogant and contemptuous ways towards patients and researchers, with no care of how bad they look, I guess because they feel so invulnerable.

 

[Dx Revision Watch]

Presumably the have to be registered in some way and keep accounts that can be scrutinized. Does anyone know where we can see their financial records? Action for ME should know since they provide secretarial services.

Registered as what? And with whom?

As far as I am aware, they are not constituted as a charitable incorporated organisation (CIO), a charitable company or an unincorporated association or trust.

But I agree, they presumably keep accounts and these should be available for public scrutiny and it should be clarified how they are legally structured especially since they are in receipt of funding from a number of sources.

Charity types: how to choose a structure (CC22a)

https://www.gov.uk/guidance/charity-types-how-to-choose-a-structure



As Dr Shepherd is an Executive member, he should be able to tell us:

a) how the group is legally structured;

b) who has responsibility for its accounting;

c) who is legally responsible for how it spends its funding etc.

 

[lilpink]

As Dr Shepherd is an Executive member, he should be able to tell us:

a) how the group is legally structured;

b) who has responsibility for its accounting;

c) who is legally responsible for how it spends its funding etc.

I would be very interested in a response.

 

[Sean]

I guess because they feel so invulnerable.

And why wouldn't they, given how successful they have been at accruing power and avoiding accountability for so long, and knowing that this gravy train will continue if the May Tory government gets re-elected (which looks likely).

 

[arewenearlythereyet]

I'm finding this old boys club hidden away from scrutiny increasingly distasteful. This is now tainting my impression of the MEA by association. The MEA now needs to respond. This continued silence is beginning to look bad to members and the patient community as a whole. Perhaps like action for ME you need a board meeting to pass comment, or perhaps you have some new friends that prefer to muzzle you? Perhaps the MEA has taken a new direction?

If "something is going on". Perhaps give a holding statement with a timeframe?

 

[Dx Revision Watch]

Not only is the CMRC in receipt of funding from various sources (at least three sources that we are aware of), it also charges membership fees:

Student: £15 per year
Associate member Free
Professional member £20 per year

I would have thought that its Chair, Vice-chair and Executive members should have discussed that the CMRC is formally constituted.

There is also a lack of clarity over who the members and attendees are due to the way they are listed in the published draft Minutes of meetings.

For example:

https://www.actionforme.org.uk/uploads/images/2017/03/DRAFT_Minutes_CMRC_21.3.17.pdf

There is a mixture of initials and initials and affiliations after the names of those who attended, participated via phone or sent Apologies. It's not evident what the affiliations of some of those attending are, for example, Science Media Centre, or in what capacity they are involved with CMRC.

Also in the minutes of an earlier meeting:

"SC reported that there has been a request to join the Board from a medically-qualified individual who has direct links with industry. The bio was tabled at the meeting.
Decision The Board agreed that the individual fills a gap in the Board expertise especially with the links to industry that the individual has and will therefore be invited to join the Board."

I don't know who this was, as the individual is not identified in the Minutes, or whether they accepted the invitation to join the Board, but it is difficult to work out from more recent Minutes, who this is (if they had accepted) and in what capacity they now function with the board (ie Executive Member, Observer etc).

 

[slysaint]

There is also a lack of clarity over who the members and attendees are

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

As at March 2017, members of the executive committee were:

Chair Professor Stephen Holgate (University of Southampton) and Deputy Chair Dr Esther Crawley (University of Bristol).

Dr Mark Edwards (University College London), Dr Zoe Gotts (University of Northumbria), Professor Paul Little (University of Southampton), Professor Julia Newton (University of Newcastle), Professor Carmine Pariante (King’s College London), Professor Hugh Perry (Chair of Neurosciences Board, MRC), and Professor Chris Ponting (Deputy Director of Functional Genomics Unit, MRC).

Charity membership is represented by Jan McKendrick (ME Research UK), Sonya Chowdhury (Action for M.E.), and Dr Charles Shepherd (ME Association).

Michael Dalrymple from charity, MRC-Technology, has joined the board, along with Mark Jones representing UCB a leading biopharmaceutical.

Observers are Dr Neha Issar-Brown, (Medical Research Council), Ed Sykes (Science Media Centre), Dr Gabrielle Murphy (BACME) and others who represent Wellcome Trust and the National Institute for Health Research.

http://www.meresearch.org.uk/wp-content/uploads/2017/04/DRAFT-Minutes-CMRC-21.3.17.pdf

CMRC Board Minutes 21.3.17
1
DRAFT
Minutes of UK CFS/ME Research Collaborative Executive Board Meeting
21 March 2017
Present:
Stephen Holgate (SH)
Sonya Chowdhury (SC)
Jan McKendrick (JM)
Esther Crawley (EC)
Gabrielle Murphy (GM)
Mark Edwards (MEd)
Mark Edwards–EMIG (ME)
Charles Shepherd (CS)
Mark Jones-UCB (MJ)
Mike Dalrymple (MRCT)
Ed Sykes (ES)
James Brodie–GWPharma (JB)
Joined via phone:
Claire Kidgell (CK)
Julia Newton (JN)
Apologies:
Allison Wallace (AW)
Des Walsh (DW)
NehaIssar-Brown (NIB)
Raliza Stoyanova (RS)
Hugh Perry (HP)
Carmine Pariante (CP)
Paul Little (PL)
Mary Jane Willow (MJW)
Zoe Gotts (ZG)
Chris Ponting (CPP)

Minutes taken by SC (until item 5); EC thereafter
Chair Approved: SH
22.3.17 by email

 

[Barry53]

One case may be annoying and two a coincidence. But three give cause for suspicion.

Quite. Individual instances of suspect behaviour may get away with "plausible deniability". But patterns of behaviour are much more revealing, and plausibility drops off sharply.

 

[suseq]

The CMRC Charter for Members originally included this clause:

https://www.actionforme.org.uk/uploads/pdfs/cmrc-charter.pdf

3.2 Applying for membership

3.2.3 Members will be required to sign a declaration that they will not take part in the harassment or abuse of researchers. Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research.

Which by 2016 had been revised to:

3.1.3. All members must not take part in the harassment of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research. This does not prevent engagement in appropriate scientific debate.

Edited to add:

This version of the Charter dates from August 2016:

https://www.actionforme.org.uk/uploads/pdfs/cmrc-charter-aug-2016.pdf

3.2 Membership Requirements

Good scientific debate promotes and drives the highest quality of basic and applied evidenced based and peer-reviewed research in to CFS/ME and is actively encouraged by the CMRC. This includes respectful debate and objective, constructive criticism in order to encourage critical thinking. Channels for ‘good’ scientific debate include writing letters to journals, asking questions, using established legal channels

As suspected at the time, it would seem these clauses are designed to protect members from scrutiny, and effectively tie the hands of any member or charity who may wish to raise concerns on behalf of the patient community.

It was questionable when the charter was made public, and still is, especially as it seems patients interests are not protected in the same way.

Surely any member, voluntary or otherwise, who is effectively bringing the aims of the collaborative into question and disrepute needs to be held to account with an open response and explanation to the patient community.

To do otherwise is evidence of a direct conflict with the stated aims of the collaborative.

 

[Dx Revision Watch]

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

As at March 2017, members of the executive committee were:

Chair Professor Stephen Holgate (University of Southampton) and Deputy Chair Dr Esther Crawley (University of Bristol).

Dr Mark Edwards (University College London), Dr Zoe Gotts (University of Northumbria), Professor Paul Little (University of Southampton), Professor Julia Newton (University of Newcastle), Professor Carmine Pariante (King’s College London), Professor Hugh Perry (Chair of Neurosciences Board, MRC), and Professor Chris Ponting (Deputy Director of Functional Genomics Unit, MRC).

Charity membership is represented by Jan McKendrick (ME Research UK), Sonya Chowdhury (Action for M.E.), and Dr Charles Shepherd (ME Association).

Michael Dalrymple from charity, MRC-Technology, has joined the board, along with Mark Jones representing UCB a leading biopharmaceutical.

Observers are Dr Neha Issar-Brown, (Medical Research Council), Ed Sykes (Science Media Centre), Dr Gabrielle Murphy (BACME) and others who represent Wellcome Trust and the National Institute for Health Research.

http://www.meresearch.org.uk/wp-content/uploads/2017/04/DRAFT-Minutes-CMRC-21.3.17.pdf

CMRC Board Minutes 21.3.17
1
DRAFT
Minutes of UK CFS/ME Research Collaborative Executive Board Meeting
21 March 2017
Present:
Stephen Holgate (SH)
Sonya Chowdhury (SC)
Jan McKendrick (JM)
Esther Crawley (EC)
Gabrielle Murphy (GM)
Mark Edwards (MEd)
Mark Edwards–EMIG (ME)
Charles Shepherd (CS)
Mark Jones-UCB (MJ)
Mike Dalrymple (MRCT)
Ed Sykes (ES)
James Brodie–GWPharma (JB)
Joined via phone:
Claire Kidgell (CK)
Julia Newton (JN)
Apologies:
Allison Wallace (AW)
Des Walsh (DW)
NehaIssar-Brown (NIB)
Raliza Stoyanova (RS)
Hugh Perry (HP)
Carmine Pariante (CP)
Paul Little (PL)
Mary Jane Willow (MJW)
Zoe Gotts (ZG)
Chris Ponting (CPP)

Minutes taken by SC (until item 5); EC thereafter
Chair Approved: SH
22.3.17 by email

Yes, I know the members are listed elsewhere, but my point is, it's not clear from the Minutes of meetings, themselves, in what capacity they attended the meeting or their affiliations. Draft Minutes are circulated without the context of a document or link to a page that lists the members, their functions and affiliations. If you did not already know their names, not even the charity reps are properly identified.

At the very least, a URL for the full list of members could be added to the Minutes.

 

[Chrisb]

Do they keep amending the charter as shown on line without specifying the date of the last amendment? I looked at it this morning and it seemed rather different to how I remembered it from not very long ago, in ways other than that mentioned above. There was mention, in minutes that were linked to, that changes were to be made. Has this discussion prompted publication of the new charter?

For this I am dependent on those of you with a functioning brain. Sorry.

 

[Dx Revision Watch]

Do they keep amending the charter as shown on line without specifying the date of the last amendment? I looked at it this morning and it seemed rather different to how I remembered it from not very long ago, in ways other than that mentioned above. There was mention, in minutes that were linked to, that changes were to be made. Has this discussion prompted publication of the new charter?

For this I am dependent on those of you with a functioning brain. Sorry.

There was a version in 2013:

still available here:

https://www.actionforme.org.uk/uploads/pdfs/cmrc-charter.pdf

25 Feb 2013

then that was revised.

The Minutes for the meeting on 27 April 2016 noted:

https://www.actionforme.org.uk/uploads/pdfs/cmrc-board-meeting-270416.pdf

4
Board Membership

The current Charter is quite prescriptive in terms of membership and therefore it was proposed that further revisions would be made to the Charter (and outlined at the AGM) with a ‘terms of reference’ document being developed for the Board. This would also reduce the length of the Charter. Changes would then need to be re-circulated to members and final approval confirmed at the next meeting. SC will also include clarification as per discussions re communication/conduct.​

A revised version was published in August 2016, which is this version:

https://www.actionforme.org.uk/reso...k-cfs/me-research-collaborative/cmrc-charter/

As far as I am aware, the August 2016 version is the most recent version.

Edited to add: I've attached a PDF of the initial 2013 version.

Also a November 2013 version.

Not sure whether the interim version(s) is still available online, but we have the text of the bit about harassment which differs from the 2013 versions. (I may have a copy on file.)

Also attached the August 2016 version for comparison and to archive a copy.

 

[slysaint]

I don't know who this was, as the individual is not identified in the Minutes

Michael Dalrymple from charity, MRC-Technology, has joined the board, along with Mark Jones representing UCB a leading biopharmaceutical.

...?

 

[BurnA]

MRC Technology monetises royalties on cancer drug Keytruda® (pembrolizumab) to expand medical research activities, with a fund managed by DRI Capital

MRC Technology is an independent life science medical research charity committed to drastically improving positive patient outcomes everywhere.

As a champion for human health, MRC Technology partners with academic, biotechnology, pharmaceutical, and charity organisations to move promising medical research forward into viable and accessible patient treatments.

 

[Dx Revision Watch]

I don't appear to have a copy on file, but if anyone has a PDF of the version of the Charter that contained this text (believed to be later than 2013 but predates the August 2016 version) please send me a copy and I'll add the file to the collection above.

3.1.3. All members must not take part in the harassment of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research. This does not prevent engagement in appropriate scientific debate.