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

[worldbackwards]

It's all in the application, isn't it. Why do you think the (very vague ) clause was put in in the first place?

 

[Scarecrow]

.
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.’


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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


.

@Wildcat I've read the links as you requested, except for the BBC website article and the Panorama transcript. The two documents and the joint press statement are well written and presented. However, when you start to analyse them you soon run into problems. Here's the first paragraph from the first document:

The World Health Organisation lists Myalgic Encephalomyelitis as a neurological disease, classification ICD10 G93.3. It is potentially very severe and chronic. Since the middle of the twentieth century it has been recognised by microbiologists, virologists and specialist researchers as a complication of a viral disease, with enteroviruses as the most likely cause. Enteroviruses live in the bowel and are related to poliomyelitis.

This perfectly illustrates my point.

It would have been more correct to write "...it has been recognised by some microbiologists, virologists and specialist researchers...." and it would have been vastly more helpful to indicate if those microbiologists, virologists and specialist researchers held a majority, significant minority or unorthodox view.

To a casual reader it looks like the cause of ME was known about 60 years ago. That is just not the case.

 

[Scarecrow]

It's all in the application, isn't it. Why do you think the (very vague ) clause was put in in the first place?

Yes and I signed the Charter having thoroughly read and considered it. I don't find it all vague - it seems pretty plain English to me.

I'm not troubled by 3.1.3 and 3.2.3. It wouldn't dissuade me from submitting a FOI request nor from making a complaint if I had cause to. It also wouldn't prohibit me from criticising a research project. AT ALL.

 

[user9876]

It would have been more correct to write "...it has been recognised by some microbiologists, virologists and specialist researchers...." and it would have been vastly more helpful to indicate if those microbiologists, virologists and specialist researchers held a majority, significant minority or unorthodox view.

The thing that worries me about the tymes trust is that they (or perhaps Jane) are pushing this particular view of ME.

However, I think it is worth saying that as a charity supporting kids and their families they do an excellent job with good practical advice and help with the authorities. I know as a parent you often end up fighting doctors and teachers who think ME is just laziness or a lack of motivation and the TT are great in helping.

I think seeing the sharp end of the effects of those pushing psychosomatic views is the thing that makes them so wary and untrusting of organizations including people like White and Crawley.

 

[Scarecrow]

The thing that worries me about the tymes trust is that they (or perhaps Jane) are pushing this particular view of ME.

However, I think it is worth saying that as a charity supporting kids and their families they do an excellent job with good practical advice and help with the authorities. I know as a parent you often end up fighting doctors and teachers who think ME is just laziness or a lack of motivation and the TT are great in helping.

I think seeing the sharp end of the effects of those pushing psychosomatic views is the thing that makes them so wary and untrusting of organizations including people like White and Crawley.

I'm absolutely sure that's the case and well pointed out.

 

[Snowdrop]

"I'm not troubled by 3.1.3 and 3.2.3. It wouldn't dissuade me from submitting a FOI request nor from making a complaint if I had cause to. It also wouldn't prohibit me from criticising a research project. AT ALL." (Post #283)

That's definitely good news to hear. If you do make an FOI request or have a criticism maybe you can let us know how that goes.

 

[Bob]

For the record, I absolutely admire the TYMES trust and everything they do.

 

[Dx Revision Watch]

Yes and I signed the Charter having thoroughly read and considered it. I don't find it all vague - it seems pretty plain English to me.

I'm not troubled by 3.1.3 and 3.2.3. It wouldn't dissuade me from submitting a FOI request nor from making a complaint if I had cause to. It also wouldn't prohibit me from criticising a research project. AT ALL.

I note you omit the ill-defined:

"[taking] part in orchestrated campaigns against those conducting peer-reviewed research."

 

[Dx Revision Watch]

A purely hypothetical example for you, Scarecrow.

You've signed the Charter.

Let's imagine that a PI (Principal Investigator) and half a dozen co-applicants have submitted a feasibility study to an ethics committee for approval.

Funding is already in place from the Wellberg Trust.

The C.O.L.D.T.U.B. study protocol sets out that children aged 8 to 17 with moderate to severe ME of at least two years duration will be exposed to CBI (Cold Bath Immersion) twice a day, for four weeks. After four weeks, symptoms will be reassessed. The control arm will receive "usual medical care."

There are no published, peer reviewed studies into the effectiveness, safety and acceptability of CBI in adults with ME.

A significant number of patients, carers and organisations consider that before CBI is trialled on 8 to 17 year olds, studies should be carried out in adults and evaluated for the safety of application of CBI in children with ME.

Let's imagine that several patient organisations publish a joint statement in opposition to this research pilot and issue a form letter to be sent to the ethics committees and funders. Or an ad hoc advocacy group is formed to organise opposition to this ethics committee application.

So here we have an example of an orchestrated campaign against a PI and co-applicants conducting a research study.

Do you consider that those organisations who have signed up to a Charter containing the clause you have signed up to would feel in a position to lend their support to such a campaign or to encourage their memberships to support it?

 

[Scarecrow]

I note you omit the ill-defined:

"[taking] part in orchestrated campaigns against those conducting peer-reviewed research."

There was no significance in my omission.

 

[Scarecrow]

A purely hypothetical example for you, Scarecrow.

You've signed the Charter.

Let's imagine that a PI (Principal Investigator) and half a dozen co-applicants have submitted a feasibility study to an ethics committee for approval.

Funding is already in place from the Wellberg Trust.

The study protocol sets out that children aged 8 to 17 with moderate to severe ME of at least two years duration will be exposed to CBI (Cold Bath Immersion) twice a day, for four weeks. After four weeks, symptoms will be reassessed. The control arm will receive "usual medical care."

There are no published, peer reviewed studies into the effectiveness, safety and acceptability of CBI in adults with ME.

A significant number of patients, carers and organisations consider that before CBI is trialled on 8 to 17 year olds, studies should be carried out in adults and evaluated for the safety of application of CBI in children with ME.

Let's imagine that several patient organisations publish a joint statement in opposition to this research pilot and issue a form letter to be sent to the ethics committees and funders. Or an ad hoc advocacy group is formed to organise opposition to this ethics committee application.

So here we have an example of an orchestrated campaign against a PI and co-applicants conducting a research study.

Do you consider that those organisations who have signed up to a Charter containing the clause you have signed up to would feel in a position to lend their support to such a campaign or to encourage their memberships to support it?

So, I'd be taking part in an orchestrated campaign against the proposed study then, wouldn't I? It wouldn't be against 'those conducting peer-reviewed research'.

 

[Scarecrow]

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

So is the ME Association no longer a member of the Collaborative?

 

[Dx Revision Watch]

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

So is the ME Association no longer a member of the Collaborative?

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

The MEA issued that joint statement in August 2010.

 

[Scarecrow]

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

The MEA issued that joint statement in August 2010.

And I would expect them to do exactly the same thing tomorrow in response to C.O.L.D.T.U.B.

 

[Jonathan Edwards]

So, I'd be taking part in an orchestrated campaign against the proposed study then, wouldn't I? It wouldn't be against 'those conducting peer-reviewed research'.

Absolutely agree. Scarecrow. I have signed up to this paper too, I suspect, but I see no problem with voicing objection to bad research. There is a lot more to say on various sides but ...

 

[Dx Revision Watch]

@ Dr Edwards

In this other thread

you wrote

"Peter White: PACE trial

"I think I can only describe Dr White’s presentation as out of place. He presented a single slide of outcomes in the PACE study and claimed that it showed clearly that two treatments worked. He then spent the rest of his talk saying how unreasonable it was that patients did not gratefully accept this conclusion, indicating that this was an attack on science (if I remember rightly)."

Should we assume, then, that Professor White considers that his research should not be subject to the same level of scrutiny as any other research?

Or does he consider that having his research challenged by the laity to be unreasonable and an "attack" on science (if that is what he did say)?

 

[Dx Revision Watch]

My point being - at what point is legitimate criticism of research from any quarter perceived as unreasonable and as attacking science?

At what point do FOIs requesting data in order that published research findings can be properly scrutinised by the research/clinical field or by interested and informed members of the public, who may be stakeholders, be considered "vexatious," and who decides?

For that matter, at what point does the raising of parliamentary questions become burdensome and who decides what is acceptable and what is not: the Parliamentary Table Office, the MRC, Support4rs, the UK CMRC Executive, individual members of the Executive?

 

[biophile]

(quote 16)

Harassment

Harassment is most damaging in the form of vexatious FOIs.

Complaints are also causing problems. Researchers are still dealing with complaints about them to the GMC.

House of Lords Debates on CFS/ME can result in Parliamentary Questions which often require detailed responses.

We do not know how many freedom of information requests have been submitted or what proportion are vexatious.

But here is an example of an allegedly vexatious request:

http://forums.phoenixrising.me/inde...or-recovered-in-pace-trial-turned-down.25057/

Anna Sheridan asked:

I am particularly interested in the results of the 6 min walking test, (as reported in the original PACE paper) and would be grateful if you could provide me with mean and standard deviation results for those who, in your latest paper: 'Recovery from chronic fatigue syndrome after treatments given in the PACE trial.' are considered recovered. Please break these down, if possible into therapy type.

The university refused because they said the requested information was not held. They also refer to a letter which will be published in the future on the issue of the 6MWT (the letter basically claims that the 6MWT data were unreliable).

Sheridan submitted another request some time later. Once that was refused as a repeated request, Sheridan pointed out that the underlying data required to calculated the requested information does exist. The university conceded the data exists, but:

For your information the appropriate limit is £450, calculated as the estimated cost of one person spending 18 hours in determining whether the information is held, then locating, retrieving and extracting the information. Section 12 of FOIA therefore make provision for public authorities to refuse such requests.

The processes would include work of a statistician to perform the various programming and data file operations as well as the calculations to produce accurate data. Moreover, as there is no longer a statistician employed by the PACE trial, one would need to be recruited for this operation and trained.

Once the data was extracted, calculating mean SD from a list of scores could be done in under a minute.

Clicking on Sheridan's profile on that website reveals a follow up request made at a later date:

https://www.whatdotheyknow.com/request/raw_data_for_6mwt

As you will be aware my FOI request from 27th November 2013 was declined, and that decision was upheld by the information commissioner, as it was decided that by law that requesting a calculation meant counted in this case as not 'holding the data'. The commissioner, however recommended to me that I ask for the raw data, because as, he established through a conversation with you, this is data that you do hold. Therefore I would like to request, (for the participants for whom you have data), the 6 min walking test results both before treatment and at follow-up for: 1) Those who are recovered according to your published criteria.

This was the response:

After due consideration we are refusing your request. Section 14(1) of the Freedom of Information Act 2000 states that public authorities are not obliged to comply with a request for information if that request is vexatious.

Sheridan replied (without an answer yet):

I am writing to request an internal review of Queen Mary, University of London's handling of my FOI request 'Raw data for 6mwt'.

I am particularly surprised that you see my request as vexatious - it is certainly not my intention. Rather, this is important information that I am sincerely interested in, and which I know that you hold. I would like to point out again, that while my previous request was refused, the Information Commissioner himself recommended that I make this new request asking for the raw data.

As a scientist, I am seeking to understand the full implications of the research that you have conducted. As a patient, the distance that I can walk is of incredible concern, and has huge implications for activities that I can undertake and therefore quality of life. When deciding to undertake a treatment such as CBT or GET, it is surely not unreasonable to want to know how far the patients who have recovered using these treatments can now walk. Again, I know you have this data, and believe strongly that it would be in the public interest for it to be released.

 

[Esther12]

What if a patient group thought that a researcher's work was of such poor quality that they should not be provided with further funding? What would they need to do before that became an unacceptable campaign? Are they not allowed to even make such a judgement? Are researchers allowed to engage in an orchestrated campaign against a patient group? I am uncomfortable with some of this stuff, but also, quite like the idea of White trying to argue that the terrible harassment of vexatious FOIs like the one Biophile posted should mean that those responsible must be kicked out of the collaborative.

 

[biophile]

Does this scenario seem familiar?