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

[alex3619]

@alex3619 - Many journals literally will not publish any statement in a letter which is not supported with a citation, with the possible exception of the opening sentence. Logic and reason are insufficient to them - there must be an authority.

I don't disagree, but focusing on citation is limiting the argument too much. For a start there are places we want to publish where more than one or two citations is the kiss of death. This is a much broader issue.

 

[Scarecrow]

I really do feel that this is a edited document that just serves to encourage paranoia and not be helpful to research or the needs of the ME community at all.

Yes so what a professional in a field asks another professional for suggestions.. So what he wouldn't be who I would turn to for advice but like it or not some people do see him as a leading researcher and someone who is able to direct people.

Paranoid thinking will not help anyone.

I agree. I went to the conference today but I'm too wiped out to write anything coherent just now. I'll post further tomorrow.

 

[alex3619]

I really do feel that this is a edited document that just serves to encourage paranoia and not be helpful to research or the needs of the ME community at all.

Yes so what a professional in a field asks another professional for suggestions.. So what he wouldn't be who I would turn to for advice but like it or not some people do see him as a leading researcher and someone who is able to direct people.

Paranoid thinking will not help anyone.

Yet subservient or conciliatory thinking doesn't help us either. Drawing premature conclusions based on some data is a problem, drawing possible inferences based on inadequate data is a problem, but not asking questions is also a problem.

I don't think we have been anything like vocal enough. Not even close. The answer is not to ask fewer questions and let things be, but to ask more focused and informed questions ... and ramp up their frequency by orders of magnitude.

There are multiple domains of questions involved here, from issues in science versus politics, to economics and ideology. Just because we disagree with, for example, a scientist on some issue of political strategy, does not mean that we should disagree with them on the science. These are separate issues.

Politically the entire medical and scientific professions have failed us. Yet the biomedical solutions will come from them too. Different domains, different questions, different advocacy positions.

 

[ithought]

Name calling really isn't helpful just because you don't agree with my experience and views. It's time we moved forwards from being scared of psychiatry to actually educating them on the illness and making a difference for those who for what ever reason end up under there care... Whilst we are saying 'it's nothing to do with psychiatric services ' we are leaving those who need psychiatric services due to the long term effects of ME or for what ever reason open to abuse.

 

[Bob]

Name calling really isn't helpful just because you don't agree with my experience and views.

I think you've misinterpreted Alex's comments. Alex wasn't rude, and didn't call you any names. He was simply contrasting "paranoid thinking" with "subservient or conciliatory thinking", for the sake of discussion, and wasn't accusing you of either.

 

[Amused]

Possibly a non-sequiteur - but - has anyone asked Holgate whether or not what he initially intended is what's happening? Just wondering....

 

[Snowdrop]

Possibly a non-sequiteur - but - has anyone asked Holgate whether or not what he initially intended is what's happening? Just wondering....

That would be a useful bit of intel.

 

[alex3619]

Possibly a non-sequiteur - but - has anyone asked Holgate whether or not what he initially intended is what's happening? Just wondering....

This is an example of one of the things we could be doing. I don't think its outside the topic. I think we need to engage more scientists and doctors in the debate. We are stakeholders, yes, but so are they. Its a mistake to presume, even if there is evidence of bias, that the intentions of someone are not genuine. People stuff up, people have different views.

I don't doubt there are people who have agendas against our interests. Yet when we try to infer intentions we are on shaky grounds. Its better to deal with statements and the facts, and show they are unhelpful or wrong.

It came up on another thread recently, I think, that many with psychogenic views probably believe what they are saying. I think that is right. Its the views, their beliefs, and the reasons for those beliefs that need challenging.

This includes tolerance for psychobabble.

 

[alex3619]

Those wishing to investigate further need the emails. Taking things out of context can always be claimed to be misrepresentation. Whether it is or is not can not then be substantiated. It becomes "one said" and "the other said".

It was pointed out to me elsewhere, and I totally agree with this, that in the absence of those emails we can still move forward. When/if those opposed to these claims wish to bring up the topic of context, we can ask them to provide the full context point by point. The Tymes Trust has selected specific statements. Sweeping claims these might be wrong are also hard to substantiate. Its a philosophical position of mine that almost anything can be wrong, yet we cannot advance if we require complete evidence of every little thing.

Context is often relevant in contentious issues. It does not mean we cannot advance our understanding even without full information.

 

[Esther12]

Is anyone in contact with people at Tymes, so could ask if they are planning to make the e-mails publicly available?

edit: Maybe they're already on-line somewhere?

 

[Dolphin]

Name calling really isn't helpful just because you don't agree with my experience and views. It's time we moved forwards from being scared of psychiatry to actually educating them on the illness and making a difference for those who for what ever reason end up under there care... Whilst we are saying 'it's nothing to do with psychiatric services ' we are leaving those who need psychiatric services due to the long term effects of ME or for what ever reason open to abuse.

The proponents of the CBT school of thought suggest that the sort of information patients organisations and the like give is exactly the wrong sort of information. So the more influence they have, the less likely education programs will be to influence psychiatric services (and the more likely the psychiatric services will have been taught "bad" information from the CBT school).

 

[alex3619]

Is anyone in contact with people at Tymes, so could ask if they are planning to make the e-mails publicly available?

edit: Maybe they're already on-line somewhere?

I have wondered about this. Somewhere else I pointed out there may be legal barriers. While someone might get information via FOI requests, do they have the right to publish that in full? Indeed, they would need that right for the UK specifically. I do not know the answer to this question, but I think brief excerpts may be all they have the legal right to use.

 

[Valentijn]

I don't disagree, but focusing on citation is limiting the argument too much. For a start there are places we want to publish where more than one or two citations is the kiss of death. This is a much broader issue.

That's why it's so important to know where the useful data is published (and/or buried). And that's why seemingly obvious or unnecessary publications such as Kindlon's "Harms" paper and the stuff published by Twisk and the published patient surveys regarding GET and CBT are so absolutely essential. They give us that cited basis for stating the bloody obvious!

 

[Dx Revision Watch]

If this thread is going to degenerate into framing legitimate concern about how a group has been assembled and about its modus operandi as "paranoia" then there is little point continuing to input. It is evident from the material that has been released that the Science Media Centre, Fiona Fox and their very dirty media campaign is embedded in the Collaborative.

Is that alright then?

 

[Min]

If this thread is going to degenerate into framing legitimate concern about how a group has been assembled and about its modus operandi as "paranoia" then there is little point continuing to input. It is evident from the material that has been released that the Science Media Centre, Fiona Fox and their very dirty media campaign is embedded in the Collaborative.

Is that alright then?

No, it's shameful.

 

[Bob]

Is anyone in contact with people at Tymes, so could ask if they are planning to make the e-mails publicly available?

edit: Maybe they're already on-line somewhere?

I have wondered about this. Somewhere else I pointed out there may be legal barriers. While someone might get information via FOI requests, do they have the right to publish that in full? Indeed, they would need that right for the UK specifically. I do not know the answer to this question, but I think brief excerpts may be all they have the legal right to use.

If a public body releases information via a FOI request in the UK, then that info is considered to be in the public domain, and can be shared freely. So the recipient of the info is legally permitted to share it freely and to publish it all. The info is considered public property, once released. That's my understanding of it anyway.

 

[alex3619]

Thanks @Bob. Then perhaps we might approach them to publish things in full?

 

[Bob]

Thanks @Bob. Then perhaps we might approach them to publish things in full?

I can't see any reason why not. I might have asked them myself but I'm not doing great at the moment, so don't feel like doing anything proactive.

 

[Wildcat]

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It is clear from the document of quotes (the subject of this Thread) that a great deal has gone on behind the scenes in the Collaborative, and certain people consulted, that we were Not informed about. That raises most definite concerns in the ME community about the Collaborative.

Those concerns are justified and should be aired, and are being discussed here.


There is concern that the Collaborative has not been transparent.


It was not made clear early on that Prof White, Dr Crawley and BACME would be involved.


It was not made clear that Professor Wessely was consulted and asked to give certain input. It was not made clear that Prof Chalder would have anything to do with the Collaborative.


Those developments were not made public by the Collaborative in any of its public statements, or in its sanitised Minutes. It should be remembered that Minutes are not a transcript, they are a more detailed summary from which statements made in meetings can be, and frequently are, omitted.



It was not made clear from early on that the Science Media Centre (SMC) would be given an insider role.


The Science Media Centre is not neutral.
The SMC itself, and its Director Fiona Fox in particular, via her previous Media outlets (the magazines ‘LM’ and Spiked’), has a long and contentious history of very actively promoting specific political and industry agendas. Agendas which include taking a stridently Pro GM stance whilst claiming to be an independent and neutral 'clearing house' for science reporting,


The Science Media Centre's documented history of overtly biased and inflammatory activities (on matters other than ME) has been widely criticised and reported on in the UK National Media. (Evidence to follow in a new post)




The Science Media Centre was instrumental in creating and orchestrating the fawning media reports on the PACE Trial, and went on to generated cascades of hostile and defamatory media material about the patients, portraying legitimate actions carried out within the law, as ‘harassment’. The media blitz has extended over years now.



So it’s disingenuous of the Collaborative to claim that the Science Media Centre (SMC) representative (Ed Sykes) is merely “An Observer". As an Observer, Ed Sykes would not speak at meetings. But the role of the SMC in the Collaborative is not that of passive observers. Its role is Active. The SMC Representative just doesn't speak at meetings


The Science Media Centre write the Press Releases. And in them have continued to perpetuate their campaign of portraying the patients as nasty and dangerous in the Collaborative .


Such a tactic can only be in direct opposition to the purported objective of the Collaborative to attract new researchers.

From the Colby emails it is clear that Fiona Fox (SMC Director) has already had an active inside role in the Collaborative.
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[Wildcat]

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Continuing my last post:.....

Its deeply inappropriate for the Collaborative to have on board an Agency (The Science Media Centre) which is not neutral, and has already instigated and propagated huge amounts of media coverage that is hostile to ME patients, and which has deviously portrayed legitimate courses of action (FOI requests, legitimate complaints through formal legitimate channels) as 'harassment'.....


The SMC is now propagating the same agenda again by grafting it into the Collabarative Charter and Press Briefings. As previously stated, The Science Media Centre is embedded within the Collaborative, and the Science Media Centre is not neutral.


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https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf?dl=0
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‘Ed Sykes, SMC Head of Mental Health, attends the meetings of the Executive Board on behalf of the SMC’


‘On the 1st February 2013, an email was sent from the out-going Head of Mental Health at the SMC. It was a “write up of the main points to come out of” the ‘CFS’ meeting held at the Wellcome Trust the day before.
(quote 13)



quote 18)
from Action Points
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SMC – run FOI Act brainstorm
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ALL

– look for opportunities to publicise CFS/ME research and give background

information about the condition

-

Support4rs – work with Peter White and Simon Wessely to develop resources for
dealing with harassment

-
SMC – run a press briefing on biosocial illness to improve public understanding.

Fiona Fox to get information from Trudie Chalder and Rona Ross-Morris

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Re the SMC Action Point regarding “opportunities to publicise CFS/ME research and give background information about the condition”
(reference quote 18);


on 17th April Esther Crawley informed the Collaborative that the press release regarding the launch had been rewritten and “hopefully incorporates most of your comments. I hope this is now the final version.”
(quote 23)

She clarified that this press release concerned the launch of the Collaborative, and not the press conference, which was to take place separately. Journalists were sent a separate invitation to the press conference. She explained: “journalists will already have received this invitation from the SMC about the press conference (pasted below).”
(quote 24)




The press conference invitation ‘pasted below’ began – “Science Media Centre
News Briefing
–
"What? Chronic Fatigue Syndrome – unravelling the controversy”
(quote 25)

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It stated “Chronic Fatigue Syndrome (CFS; also known as ME) is an incredibly
controversial field, not just in terms of public perception, diagnosis and treatment but even for the very researchers trying to help who have experienced campaigns of harassment from some patients.”
(quote 26)

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