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

[Wildcat]

@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.

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No. I have edited a couple of posts, added something which I remembered. That is not uncommon.

But I did not do that after, or as a result of, reading your subsequent posts. Its not unusual for posts to appear whilst one person is writing or editing. The posts cross.

 

[Scarecrow]

Sorry, I'm missing the point. Please explain.

 

[Scarecrow]

I mean about #220

 

[Wildcat]

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@Scarecrow – Re Post 220 –


You may question the Tymes Trust’s “ability to make reliable interpretations of the material they are presented with."

But it would appear that the Official Solicitor, The All Party Parliamentary Group on ME, The ME Association re the Smile Trial, and the BBC Panorama team, don’t agree with you.
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[Scarecrow]

Fair enough but that in itself doesn't make the material high quality. I've not read any of them so can't really comment.

And it certainly doesn't address the point that I keep making and which you keep ignoring. The statement of May 2013 contained a massive error. Tymes Trust alleged that the CMRC Charter contained 'gagging clauses'.

Did the Charter include such clauses?

 

[Snowdrop]

RE: post #207 (Suzy Chapman)

Thank you. Thank you. Thank you.

Thank you so much for a very clear and on point post on the issue at hand.
I've been wanting to comment but am experiencing extreme brain drain.

Some of us seem to be discussing what can be apprehended at face value. IE. how the conference went. Was it good or bad and then weighing the SMC/Collaborative accordingly. To me this is not the issue. I am very glad for the positive research efforts and biomedical studies being done but it remains to be seen when a battle is won is that the end of the war? (sorry for the violent metaphor).

 

[Wildcat]

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Scarecrow wrote re the Tymes Trust and the TT Reports that I just I posted in Post 220 (Tymes Trust Material/Reports prepared for the Official Solicitor, The All Party Parliamentary Group on ME, The ME Association re the Smile Trial, and the BBC Panorama team) :


Scarecrow wrote: "Fair enough but that in itself doesn't make the material high quality. I've not read any of them so can't really comment."




@Scarecrow: Well, why don't you read them? You have commented, by questioning the Tymes Trust's "ability to make reliable interpretations of the material they are presented with"


I presented you with evidence to the contrary, which you say you haven't read. It appears that you don't really know much about the Tymes Trust. Why don't you just try reading those Documents I posted, before further questioning the "ability" of the Tymes Trust Charity for Children with ME.

Its a shame that so few people are aware of the work of the Tymes Trust, or aware of the Tymes Trust Reports.



EDIT Addition:

http://www.tymestrust.org/

http://www.tymestrust.org/aboutus.htm

Jane Colby FRSA, Tymes Trust Executive Director

Jane Colby is a former head teacher and a member of the National Association of Educational Inspectors, Advisers and Consultants (now ASPECT). She co-authored the largest ever epidemiological study of ME (Journal of Chronic Fatigue Syndrome 1997) which revealed that ME is the biggest cause of long-term sickness absence from school. As a medical and educational author, she has been published in the Journal of Clinical Pathology, the British Medical Journal, The Lancet, the British Journal of Special Education, Special Children and other journals, and the national press. She now writes and edits the Trust's publications.

Jane prepared the questionnaire for the BBC Panorama programme on ME, is author of ME - The New Plague on the relationship between ME and poliomyelitis, and Zoe’s Win (for children with ME). She edited Young Hearts, a collection of inspirational poetry by young people with ME; the foreword is by Terry Waite CBE, who launched the book in the historic venue of Warwick Castle.
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[Scarecrow]

I may read them if I get time. But you still haven't commented on the alleged 'gagging clauses'.

 

[Esther12]

tbh, I often feel like I'm missing out on some background knowledge with debate about the politics of ME groups, and I've been trying to follow this thread to see what I could pick up, but wouldn't it be better to e-mail TYME and ask for a copy of all the e-mails than to spend time here debating whether the unseen e-mails were presented fairly?

 

[Wildcat]

@Scarecrow:
CMRC Charter - Action for ME
www.actionforme.org.uk/Resources/.../Documents/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.


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In the SMC and Professor Wessely and Dr Esther Crawley's statements, ‘harassment’ has been conflated with lawful actions, including writing for an FOI, writing to the National Research Ethics Committee, and making complaints to the GMC about a doctor.


Re “orchestrated campaigns against those conducting peer-reviewed research”

That would appear to include one of the Tymes Trust Documents which you say you haven’t read,

This (Criticism of Dr Esther Crawley's SMILE Trial):
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.’
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[Scarecrow]

tbh, I often feel like I'm missing out on some background knowledge with debate about the politics of ME groups, and I've been trying to follow this thread to see what I could pick up, but wouldn't it be better to e-mail TYME and ask for a copy of all the e-mails than to spend time here debating whether the unseen e-mails were presented fairly?

Probably

 

[Wildcat]

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By all means write and ask for the emails. I am worn out with locating and collating and posting documentary evidence for this thread, which is time consuming. . I just hope somebody reads the Tymes Trust Reports and the other TT material.

I must say that I am shocked at the impugning of the Tymes Trust charity as "biased" since Jane Colby released those pretty shocking email excerpts.
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[Scarecrow]

@Scarecrow:
CMRC Charter - Action for ME
www.actionforme.org.uk/Resources/.../Documents/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.

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Yes, that's one of the clauses. I quoted that one and 3.1.3 much earlier in this thread to demonstrate that the 'gagging clauses' were in fact nothing of the sort. Do you agree?

Re “orchestrated campaigns against those conducting peer-reviewed research”

That would appear to include one of the Tymes Trust Documents which you say you haven’t read,

I don't just 'say' I haven't read them. I haven't, in fact, read them. I'll let you know when I do.

 

[Scarecrow]

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By all means write and ask for the emails. I am worn out with locating and collating and posting documentary evidence for this thread, which is time consuming. . I just hope somebody reads the Tymes Trust Reports and the other TT material.

I must say that I am shocked at the impugning of the Tymes Trust charity as "biased" since Jane Colby released those pretty shocking email excerpts.
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Once again, your quotation is completely out of context. I 've already addressed that point. In case you missed it, here we go again:

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.

 

[Wildcat]

@Scarecrow: I have just posted about the Charter 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.;

Looks very much like a gagging clause. I refer you back to my post 230, quoting documents which you say you haven't read.. In particular the MEA/Tymes Trust Statement condemning Dr Esther Crawley's (Collaborative Vice Chair) SMILE Lightning Process Trial on children as "unethical".


Jane Colby is by no means the only person to use the term "gagging clause" about the 3.2.3 part of the Charter.

But perhaps you have not read those other critiques of the Charter.
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[Wildcat]

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Scarecrow wrote: " Jane Colby's document does not read as an impartial appraisal."


Jane Colby's Document of emails reads as a wake up call. The Collaborative has not been transparent with us.


Goodnight, Scarecrow. Perhaps you could find time to read the important documentary evidence I posted.

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[Scarecrow]

I have just posted about the Charter 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.;

Looks very much like a gagging clause. I refer you to my post 230, quoting documents which you say you haven't read..
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I feel like I'm going round in circles. I quoted clauses 3.1.3 and 3.2.3 myself in post #156 and pointed out that they were not gagging clauses. Agreeing not to harass someone is not being gagged. To be honest, you really shouldn't need to sign a declaration not to harass or abuse someone. It's common decency.

I promised you, you will find nothing in the Charter that prohibits members from commenting on or criticising research or conclusions. That is normal scientific discourse.

 

[Scarecrow]

@Scarecrow: I have just posted about the Charter 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.;

Looks very much like a gagging clause. I refer you back to my post 230, quoting documents which you say you haven't read..

Jane Colby is by no means the only person to use the term "gagging clause" about the 3.2.3 part of the Charter

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But perhaps you have not read those other critiques of the Charter.
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You've edited your post again, so I'll just address the last two sentences.

Jane Colby is by no means the only person to use the term "gagging clause" about the 3.2.3 part of the Charter

That still doesn't make it a gagging clause. It's a 'don't harass or abuse anyone' clause.

But perhaps you have not read those other critiques of the Charter

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Why would I need to? I'm perfectly capable of reading the Charter itself.

 

[Wildcat]

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The SMC, Dr Crawley and Prof Wessely have already, and repeatedly, conflated harassment and abuse with legitimate courses of action.
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[Scarecrow]

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Scarecrow wrote: " Jane Colby's document does not read as an impartial appraisal."


Jane Colby's Document of emails reads as a wake up call. The Collaborative has not been transparent with us.

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I think that we will have to agree to differ about that.

I'll let you know when I've read the documents you linked.