Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

[Dx Revision Watch]

@Dx Revision Watch , I think most people on this forum recognize you as a highly independent voice and a powerful advocate. And many of us are grateful for it.

Thank you, Bob, though my intention was not to solicit appreciation but to drive home to Chickadee9 that it doesn't matter whether two or ten or twenty people have expressed concerns in response to the material circulated in Jane Colby's report - we are individuals, and should be responded to as such.

 

[Bob]

The silly thing is that all the people on this thread want the same ultimate outcomes, and we agree on the fundamentals. We just disagree on some (but not all) of the finer details of how best to achieve our goals. I consider everyone on this thread to be a friend and ally, and I think we argue because we are all passionate about the subject, and passionately hope for the best research outcomes. It's probably good for us all to step back and remember this from time to time. I've probably been more argumentative in this thread than I should have been. As Esther12 said earlier in the thread, we all agree on much more than we disagree. We just get caught up in the details because we want the best outcomes.

 

[Bob]

Thank you, Bob, though my intention was not to solicit appreciation but to drive home to Chickadee9 that it doesn't matter whether two or ten or twenty people have expressed concerns in response to the material circulated in Jane Colby's report - we are individuals, and should be responded to as such.

I know you weren't soliciting appreciation, Suzy, but you got it anyway, just in case you were feeling unappreciated

BTW, I agree with the points you were making.

 

[Dx Revision Watch]

I was wrong to use the phrase "anti-CMRC clique", for which I apologise. It was done in the heat of the moment.

I accept your apology. But you subsequently posted:

"Someone posting about a bunch of emails they couldn't reveal or validate in any way..."

Have you read the actual TYMES Trust report? I don't mean the notice of the report, but the file from DropBox?

It states quite clearly in the report that the material is extracted from a larger bundle (over 200 items) of correspondence and attachments obtained under FOI Act from the MRC.

You are at liberty to request copies of that material yourself if you do not feel you can trust a report by the Chief Executive of a registered patient organisation.

I fully accept that people on here have valid concerns.

I'm pleased to hear that.

What I felt strongly about was the way this thread started. It was clearly intended as spoiling tactic ahead of the CMRC conference.

On what do you base that assertion?

Others on here challenged the validity and credibility of what was originally posted and, thankfully, we then moved on to a much more constructive discussion.

What do you mean by "the validity and credibility of what was originally posted." I do not recall any consensus being reached on setting aside the original post as lacking validity and credibility.

Some of the organisations that objected to the CRMC are clearly desperate to find anything that will tar it with a psychiatric brush, however tenuous the link or the source, to justify their decision.

Examples, please.

Increasingly, I believe they will have to accept they were wrong.

You are missing nuances, here.

This issue goes beyond whether or not the two day conference was dominated by non psychobehavioural research.

This issue concerns what went on in the early days of the assembling of the Collaborative Committee.
This issue concerns the embedding into the Collaborative of the SMC.
This issue concerns the dirty media campaign that the SMC and MRC orchestrated last year, how that was set in motion and who was involved in it.

Were you aware of that campaign?

It was interesting to see Professor Edwards, who is closely associated with Invest in ME, not only attending but posting positively about it on PR.

Appeal to authority.

The conference and whether it was a positive or a negative conference (and I have made no comment on the conference) is not the subject of this thread.

We will achieve more if we all act together.

This has become a mantra, this week.

It should not be used to obscure some significant and valid concerns.

 

[seanpaul]

the only contribution Bob seems to make is criticising others commentary - calling my views tittle-tattle - yet making no reference to any of the emails that helped start this process off.

Bob wants all the emails, all the evidence, perhaps Bob you should read the parts of the emails from the FOI that show that the Executive Board wanted 1) to block or deal with FOI requests, 2) deal with parliamentary questions, 3) produce minutes of meetings one version for public consumption and another for board members.

Eh - why do you think its so hard to get all the information we should have access to when the Collaborative members get wind of this debate on here and learn of the emails acquired from FOI?

Do you want proof that they monitor this forum through their various channels eg Science Media Group?

 

[Scarecrow]

I can see your point Sasha that you would like to read all the materials and be able to look at the good points and the bad points and have those reported. Also that the Tymes Trust has expressed concerns about the Trust previously.

The point that I would like to make is that the TT have released parts of the emails etc that they think support their concerns. This should, if they are correct and not taken out of context or faked, stand on their own merits.

When we prepare (as examples) our criticism of the PACE trial we don't ask ourselves what in the trail was beneficial to patients. If we write a critique it is exactly that. I think that the TT can also be given the same freedom to do their critique in the same way.

Even if the Conference was a huge success then the concerns that the TT have highlighted are still going to be important or unimportant based on their own merits. The TT may not think that the conference was that much of a success or that anything good or permanent will come of it. They may also feel that one reasonable conference is not enough to explain away what they see are being the failings of the CMRC. It's one judgment against another and the TT may feel that their reasons are valid.

The TT are presenting a mixtures of opinions and facts. In this case the facts are the e-mails and no-one but they have seen all the e-mails, although I take the point made in another post that we could probably do so if we asked. Even if the extracts are correct and not taken out of context or faked, it's still the case that the facts, as have been presented, are likely to be biased and we are still unable to properly draw our own conclusions or assess theirs.[Edited to make clear I was echoing ukxmrv's words, not alleging that anything was faked.]

So, for example, if Stephen Holgate had contacted other 'respected' researchers not on the committee, biomedical or not, would it still be wrong for him to have contacted Wessely? I don't think so, and believe me I have NO respect for that man. (You could also view Holgate's actions as clever politics. Make everyone feel their opinions are respected and valued, then ignore them when it suits you.)

It still remains true that the TT made false claims about gagging clauses. They may not have intended to do this; it could be an honest misunderstanding. But if they can't correctly interpret something relatively simple - and the Charter is not a complex document - I don't feel all that comfortable accepting that they have correctly interpreted all the e-mails they accessed under FOI.

 

[Dx Revision Watch]

Invest in ME statement (April 2013 Newsletter):

http://www.investinme.org/IIME-Newslet-1304-01.htm

In the UK two collaborative meetings for ME research are planned.

Soon the Science Media Centre and Professor Stephen Holgate and Dr Esther Crawley will host an afternoon event to publicise a "research collaborative" for CFS - UK CFS/ME Collaborative. We shall refer to this as the SMC collaborative. This event on 22nd April will be organised by the Science Media Centre in London.

One month later, in London, Invest in ME and the Alison Hunter Memorial Foundation will convene a Biomedical Research into ME Colloquium 3 (BRMEC3) - click here. Invited will be biomedical researchers from seven countries.

The SMC event apparently follows on from the MRC CFS/ME panel which was disbanded after three years, having held just a handful of meetings.

Invest in ME has been invited to attend - due to the research which the charity has proposed and funded - and, along with other invitees, the charity received an email from Dr Crawley and Professor Holgate containing information about the SMC event.

The chair of the SMC collaborative will be Professor Holgate - the deputy chair will be Dr Esther Crawley. Charities such as AfME, MEA, AYME and MER UK will have been involved in the planning with Professor Holgate and Dr Crawley.

The invitation to the SMC event sent by Dr Crawley to invitees states -

"In addition to joining forces for raising the profile of research and prioritising key areas for research, a UK CFS/ME Research Collaborative could look to jointly fund projects, capacity building (especially through involvement of those not currently engaged in the field and looking to support young scientists), encouraging targeted fund raising as well as galvanising some clear directions of travel in the field."

These seem like creditable objectives.

Yet on closer examination one finds that included in this SMC collaborative there will also be many of those who believe ME is a somatoform disorder. Included will be those behind the PACE Trial, the SMILE study etc.

So the question might be posed exactly what are the "..clear directions of travel in the field" for this SMC collaborative to which Dr Crawley refers?

"For many years two opposing views of ME have been maintained - whether for genuine reasons or for political and financial expediency. This has pitted patients against establishment organisations who deny this disease as real or of organic origin."​

Professor Holgate's reasoning behind this SMC collaborative is that -

"a similar collaborative, as well as an MRC Highlight Notice, has helped to increasing MRC, Industry and Charity investment into respiratory disease 4-fold over the last 5 years when it was recognised that more needed to be done in this field".

and

"Two key principles for the success of this (respiratory research) has been a willingness to join forces, support of ALL types of research and ensuring high quality as judged by robust peer review."


We have stated before that it will be interesting to know how this can be achieved.

The problem with transposing a model of research for respiratory disease onto the ME landscape is, of course, that respiratory disease is a universally accepted disease and is not questioned by an influential and controlling ideology that continues to describe and treat ME as a behavioural illness and refuses to accept that it is of organic origin.

For many years two opposing views of ME have been maintained - whether for genuine reasons or for political and financial expediency. This has pitted patients against establishment organisations who deny this disease as real or of organic origin.

To discard the politics and machinations that have gone on for a generation with regard to this disease is certainly something we can understand might be convenient - we have to move on from the past.

Yet the past cannot be completely ignored if one is truly intent on building a force for change and progress which includes people who still hold ME to be a behavioural illness. A great deal of re-invention of their positions by some leading figures would need to be made before one can really believe such a strategy would work.

The MRC CFS/ME panel achieved little when compared to the amount of time it was meant to be active. More importantly three more valuable years of opportunity were lost.

The problems and issues which the MRC panel really should have resolved have not been addressed - instead a void remains where these elements for a sensible and scientific strategy for research should have been agreed.

An example is the lack of agreement (or even discussion ?) regarding a standard diagnostic criteria set to define ME and differentiate from Chronic Fatigue.

Only the Canadian Consensus Criteria and International Criteria accurately describe the symptoms of ME and therefore should be the only ones used. Psychiatrists who purport to study ME use the Oxford Criteria which simply describes fatigue. An illness cannot be studied unless it is accurately defined.

After three years of existence of the MRC CFS/ME panel only a comparatively small amount of funding was awarded for research which either did not cover ME or was not related to establishment of causality. The current highlight notice from the MRC [2] is more promising, if the right type of researchers apply and get funding.


Another questionable area in this new MRC/SMC collaborative will be the requirement for anyone participating to agree to support and fund "ALL research into CFS/ME including fatigue".

The only way any organisation can be included in this SMC collaborative is to sign up to a charter created by Professor Holgate, Dr Crawley and presumably the four charities who have already been instrumental in creation of this charter and can then drive it. The letter from Dr Crawley includes the comment that the charter -

"will lay out the terms for membership that will strongly emphasise the need for ALL types of high quality research (into CFS) and a joined-up approach to deliver this", including fatigue.

The full contents of this charter - though known to some - will not be revealed until that April 22nd meeting.


We have written in the past that we feel it is impossible to marry the views of those who believe in the deconditioning/behavioural and wrong illness belief model of ME with those from the biomedical side. The failed PACE Trial has demonstrably proven that the behavioural view of ME cannot deliver and should not continue to command more funding.

This naturally leads to many questions about this MRC/SMC collaborative and its proposed method of working. The composition of the MRC/SMC collaborative includes polarised views of ME so is it really possible, or wise, to try to marry these widely differing views together? Why is a charter actually required that all must sign up to, as indicated by Dr Crawley?

Will the mandatory charter reject or remove those who disagree with the psychosocial side of the MRC/SMC collaborative? Who will peer-review applications for funding from biomedical researchers? What cohorts of patients will participate in research and what diagnostic criteria will be used? Will funding generated by this MRC/SMC collaborative be used to create a strategy of biomedical research? Why is fatigue necessary to be mentioned in the handouts?

These are questions which will hopefully be answered.

 

[Dx Revision Watch]

Eh - why do you think its so hard to get all the information we should have access to when the Collaborative members get wind of this debate on here and learn of the emails acquired from FOI?

Do you want proof that they monitor this forum through their various channels eg Science Media Group?

The TYMES Trust report had already gone out on a number of platforms and is being discussed elsewhere.

 

[Wildcat]

.


Scarecrow wrote: "Even if the extracts are correct and not taken out of context or faked, it's still the case that the facts, as have been presented, are likely to be biased and we are still unable to properly draw our own conclusions or assess theirs."

I'm afraid I feel myself going all Jeremy Paxman:

@Scarecrow - You Surely Cannot Be Suggesting that the Director of the Tymes Trust Faked the email extracts???

.
It appears that criticism of the Collaborative must be classed as "biased" and suspect.

Strange.
.

 

[Scarecrow]

.
I'm afraid I feel myself going all Jeremy Paxman:


Scarecrow wrote: "Even if the extracts are correct and not taken out of context or faked, it's still the case that the facts, as have been presented, are likely to be biased and we are still unable to properly draw our own conclusions or assess theirs."

@Scarecrow - You Surely Cannot Be Suggesting that the Director of the Tymes Trust Faked the email extracts???

.
It appears that criticism of the Collaborative must be classed as "biased". Strange.
.

Sorry, you've lost me. I've obviously not been very clear because I certainly do no think that. Let me know what part is ambiguous, then I'll clarify.

Thanks

 

[Scarecrow]

Or maybe it would help if I made it clear that I was quoting the words that ukxmrv used.

??

 

[Dx Revision Watch]

So, for example, if Stephen Holgate had contacted other 'respected' researchers not on the committee, biomedical or not, would it still be wrong for him to have contacted Wessely? I don't think so, and believe me I have NO respect for that man. (You could also view Holgate's actions as clever politics. Make everyone feel their opinions are respected and valued, then ignore them when it suits you.)

According to the TYMES Trust report, Prof Holgate had invited suggestions for other researchers from Prof Wessely. The names of the researchers Prof Wessely suggested were redacted before being provided under FOI, so it's not known who Prof Wessely had on his list.

On Page 3 of the report, an extract:

SMC – run a press briefing on biosocial illness to improve public understanding. Fiona Fox to get information from Trudie Chalder and Rona Ross-Morris [sic].
​

I cannot confirm whether Prof Chalder (KCL) and Prof Moss-Morris (formerly Southampton, now KCL) had been suggested by Prof Wessely (KCL). However, it appears that they were deputed to brief SMC's Fiona Fox on "biosocial illness". So they had played an active part in the media campaign.

 

[Wildcat]

@Scarecrow

Well, read the part of your post that I quoted in my post.

Scarecrow wrote: "The TT are presenting a mixtures of opinions and facts. In this case the facts are the e-mails and no-one but they have seen all the e-mails, although I take the point made in another post that we could probably do so if we asked. Even if the extracts are correct and not taken out of context or faked, it's still the case that the facts, as have been presented, are likely to be biased and we are still unable to properly draw our own conclusions or assess theirs."


I see that you were referring to ukxmrv's earlier post ... and go on to state even if the extracts are correct ... not taken out of context or faked ..... they are still likely to be biased



It appears that criticism of the Collaborative must be classed as "biased" and suspect.

 

[Scarecrow]

@Wildcat Well I must have been unclear in some way for you to have got the impression that you did. Did my explanation in #211 help?

 

[Dx Revision Watch]

For ease of reference, I am posting the PDF of the TYMES Trust report, here:

 

[Wildcat]

.
Scarecrow wrote: "The TT are presenting a mixtures of opinions and facts."

Where are the "opinions" in Jane Colby's document of email extracts?

There appears to be rather of lot of questioning the veracity of the content of Jane Colby's document, and when that doesn't work, portrayal of it as "biased".....

...... but little to address the Content of the Document, which reveals worrying behind-the-scenes actions and communications within the Collaborative, which Holgate and the Collaborative did not tell us about, which were not revealed to the patient population until now, via an FOI. . One of the revelations being that the Science Media Centre, and Fiona Fox its Director, have been given a much bigger role than the Collaborative have let on. At meetings the SMC are classed as merely 'Observers'.
.

Scarecrow, I do accept that you do not think that the emails are faked. That you were referring to a previous quote..... but the ("faked") reference was simply a prelude to further suspicion of the content of the Document as "biased".

Yours, Jeremy
.

 

[Scarecrow]

.
Scarecrow wrote: "The TT are presenting a mixtures of opinions and facts."

Where are the "opinions" in Jane Colby's document of email extracts?

There appears to be rather of lot of questioning the veracity of the content of Jane Colby's document, and when that doesn't work, portrayal of it as "biased". But little to address the Content of the Document, which reveals worrying behind-the-scenes actions and communications within the Collaborative, which were not revealed to the patient population until now, via an FOI. . One of the revelations being that the Science Media Centre, and Fiona Fox its Director, have been given a much bigger role than the Collaborative have let on.
.

.

Was the statement of May 2013, which included the erroneous 'gagging' allegation not an opinion?

You've still to show me where I have questioned Jane Colby's veracity? I believe that I have not and I know that I did not intend to.

I said 'likely to be biased' for the simple reason that the extracts are a selection to support a stance. Jane Colby's document does not read as an impartial appraisal.

I will make it crystal clear here that I am questioning TT's ability to make reliable interpretations of the material they are presented with. The statement was a big mistake to make. I am NOT questioning Jane Colby's honesty.

 

[Dx Revision Watch]

It's unclear from the summaries of meetings posted to date (July 13; Oct 13; Dec 13; Mar 14; June 14) whether an updated members list is going to be maintained for public scrutiny. There are various references within the meeting summaries to additional Executive members being approached, for example,

"an early career researcher" (Zoe Gotts, accepted),
"It was agreed to invite BACME (British Association for CFS/ME – a multidisciplinary membership organisation for clinicians) to join as an Observing member of the Executive Board."
Two references to "New membership applications were approved."

The patient orgs have webpages for the Collaborative but I am not aware of any page where the full Executive and membership are being posted and updated.

The lists of attendees for the most recent meeting summary (June 14) did not specify who is an Executive member, who is Secretariat; who are the Executive office holders; who has Observer status; who has Membership status - only who had attended as a Guest.

 

[Scarecrow]

@Wildcat You keep editing your posts after I have answered your points. It will make it very difficult for anyone reading this thread to make sense of the order in which things were written.

 

[Wildcat]

.
Scarecrow wrote: "I will make it crystal clear here that I am questioning TT's ability to make reliable interpretations of the material they are presented with."


Really?


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


ME - The Illness and Common Misconceptions - Tymes Trust
www.tymestrust.org/pdfs/metheillness.pdf

‘ME - The Illness and Common Misconceptions:
Abuse, Neglect, Mental Incapacity’

A summary originally produced for the legal profession


Jane Colby
Former Headteacher
Executive Director, The Young ME Sufferers Trust
The Young ME Sufferers Trust
Registered Charity 1080985
Founder Patron : Lord Clement-Jones CBE

Abstract

‘This document describes the disease of Myalgic Encephalomyelitis,
contrasts it with Chronic Fatigue Syndrome and explains why young
people with ME are commonly misunderstood as being abused or
neglected by their parents, or as lacking mental capacity to know their
own minds and make decisions affecting their lives.
It was written at the request of the Official Solicitor as a Judge’s briefing.’



~~~~~~~~~~~~~~~~



As Director of the Tymes Trust, Jane was Co Author of This Document, a Tymes Trust ME Association Joint Statement of Concern about the Esther Crawley’s Smile Trial into Lightning Process on youngsters :

http://www.meassociation.org.uk/stu...ss-is-unethical-says-joint-charity-statement/


“Unethical” study involving children”

‘A plan to recruit children with ME/Chronic Fatigue Syndrome to a scientific trial comparing the efficacy of an unproven psychologically-based training programme with specialist medical care is “unethical”, say two of Britain’s leading ME/CFS charities – The ME Association and the Young ME Sufferers Trust.

In a joint statement issued yesterday evening (4 August 2010), the two charities say:

We are issuing this joint statement due to widespread public concern, together with our own serious reservations, about a forthcoming study of the psychologically-based Lightning Process on children.’


~~~~~~~~~~~~~~~~~~~~~~~~~~~


Tymes Trust Report on Misuse of Child Protection Law against families of Children with ME. Presented to the All Party Parliamentary Group on ME (APPG), 2009.

The Forgotten Children - A Dossier of Shame - Tymes Trust

www.tymestrust.org/pdfs/theforgottenchildren.pdf



~~~~~~~~~~~~~~~~~~~~~~~


BBC/Tymes Trust Panorama Documentary 1999 ‘Sick and Tired’

The 1999 Panorama Survey and programme in conjunction with the Tymes Trust
Panorama Investigation ‘Sick and Tired’

http://news.bbc.co.uk/1/hi/health/509670.stm

‘ME children treated as mentally ill’



TRANSCRIPT - PANORAMA "SICK AND TIRED"
http://news.bbc.co.uk/hi/english/st.../panorama/transcripts/transcript_08_11_99.txt


.