Crawley: How to deal with anti-science BRS2017

[Luther Blissett]

A bit meme crazy today...

 

[lilpink]

Well I'm sorry, but I do not buy into the MEA's "better to be inside the CMRC tent etc."

Wickedly lifting a tent comment from a camping forum (which I will properly reference at : https://backpackinglight.com/forums/topic/52688/) I notice that whilst "Granted design, stitching, tear strength, .....tensile strength, zipper strength etc. play a role in how robust a tent is to forces that may be exerted upon it .....it would appear that often the weakest link are poles"

I think EC is the pole when it comes to the CMRC 'tent'. It's going to collapse at some point isn't it? Just a question of when. I think if I was inside that particular tent and could see the storm clouds approaching, as they most certainly are, I'd lope off to the nearest hotel. Being inside a tent is only worthwhile if the tent is built to standard... I think many (probably 'most' but how do we quantify such things without making up data ? ) patients and advocates regard the CMRC tent as having been dragged out of the bargain bin at an army surplus store and most definitely not to C21st spec.

 

[RogerBlack]

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.

I think many of us would oppose orchestrated campaigns against those conducting peer reviewed research - the campaign should not be about 'those conducting' - it should be about the research they are doing.
I care not one whit about Ms Crawleys (for example) personal life, or her professional life outside CFS/ME.

Any campaign against Ms Crawley on the basis that she is an evil woman, or that she should be sacked due to her beliefs is not something I would support.

I believe 'appropriate scientific debate' includes calling for retraction of publications with significant errors, pointing out the errors in public forums, making appropriate comments to funding bodies making sure they are aware of these prior statements, and their contradiction by other evidence.

This is not a 'Campaign against those conducting', it's a 'Campaign against the research that happens to be conducted by'.
A subtle, but important distinction.

(However, depending on who is arbitrating this, it may be missed.)

 

[Dx Revision Watch]

Several years prior to the launch of the CMRC, the MEA had run a petition against the PACE Trial; they had also released joint statements with TYMES Trust regarding the proposal to carry out a feasibility study involving children and adolescents with ME/CFS into the use of the Lightning Process; the MEA also submitted complaints in relation to the SMILE Trial to ethics committees and the DoH.

Would such activities on the part of the MEA now be construed as "orchestrated campaigns against those conducting peer-reviewed research" and in breach of the CMRC Charter?

I have always considered that part of the remit in setting up the CMRC was to control

a) patient criticism

b) public criticism from charity members of the CMRC.

In the other thread, Dr Shepherd has said:

...I also wrote to Stephen Holgate and my colleagues on the Board of the CMRC yesterday to raise a number of concerns and objections about the presentation AND to make it clear that I/we fully support members of the patient community who have made constructive use of Freedom of Information Act to obtain unpublished data from the PACE trial.

But I doubt that MEA intends to publish the content of that letter.

 

[Esther12]

I have always considered that part of the remit in setting up the CMRC was to control

a) patient criticism

b) public criticism from charity members of the CMRC.

I had been supportive of the CMRC, but the more I've seen from them, the more it seems that large part of it was about trying to control patient criticism and make life easier for researchers doing junk-science.

 

[Dx Revision Watch]

I think many of us would oppose orchestrated campaigns against those conducting peer reviewed research - the campaign should not be about 'those conducting' - it should be about the research they are doing.
I care not one whit about Ms Crawleys (for example) personal life, or her professional life outside CFS/ME.

Any campaign against Ms Crawley on the basis that she is an evil woman, or that she should be sacked due to her beliefs is not something I would support.

I believe 'appropriate scientific debate' includes calling for retraction of publications with significant errors, pointing out the errors in public forums, making appropriate comments to funding bodies making sure they are aware of these prior statements, and their contradiction by other evidence.

This is not a 'Campaign against those conducting', it's a 'Campaign against the research that happens to be conducted by'.

A subtle, but important distinction.

(However, depending on who is arbitrating this, it may be missed.)

For those who were involved in the setting up of the CMRC, "harassment" was a very elastic concept.
Examples of alleged "harassment" had included:

http://www.tymestrust.org/pdfs/shiningalight.pdf

Submitting FOIs
House of Lords Debates on CFS/ME resulting in Parliamentary Questions

 

[user9876]

For those who were involved in the setting up of the CMRC, "harassment" was a very elastic concept.
Examples of alleged "harassment" had included:

http://www.tymestrust.org/pdfs/shiningalight.pdf

Submitting FOIs
House of Lords Debates on CFS/ME resulting in Parliamentary Questions

Basically they are on an anti-democratic crusade in labeling measures put in place to ensure government operations are accountable as harassment.

If they are not willing to be accountable in the way determined by parliament then they should not be taking government money (including university wages).

 

[jimells]

NOW PWME ARE UNEDUCATED, CRIMINAL, DRUGGIES

Oh the irony!

According to the standards imposed on us by establishment hacks, I certainly fit that description...

I've never enrolled in a university, although I've audited several university classes and graduated from a technical school. I've always found self-education (and the School of Hard Knocks) to be much more useful for my purposes.

And according to The Law, I've been a criminal druggie for the past 40 years, due to my use of cannabis. But that's all in the past, since it is finally legal in Maine for me to sit on my own front porch and smoke a joint.

As for being some kind of radical militant anarchist, well, that is a mantle I wear proudly, as a former member of a radical labor union.

 

[Dx Revision Watch]

...But I doubt that MEA intends to publish the content of that letter.

And I think the MEA should publish their concerns as communicated by Dr Shepherd to Prof Holgate.

The MEA represents the interests of their membership and a broader constituency who need to know how this matter is being addressed. Prof Holgate's response should also be made public.

 

[slysaint]

I think EC is the pole when it comes to the CMRC

Intense.

eta:

 

[Jo Best]

I think EC is the pole when it comes to the CMRC 'tent'.

Intense.

ME people! You're so Money Supermarket Anti-Science!

 

[Somer]

For those who were involved in the setting up of the CMRC, "harassment" was a very elastic concept.
Examples of alleged "harassment" had included:

http://www.tymestrust.org/pdfs/shiningalight.pdf

Submitting FOIs
House of Lords Debates on CFS/ME resulting in Parliamentary Questions

Thank you for sharing this Tymes Trust link - I'm slowly getting educated...

 

[TiredSam]

I notice that whilst "Granted design, stitching, tear strength, .....tensile strength, zipper strength etc. play a role in how robust a tent is to forces that may be exerted upon it .....it would appear that often the weakest link are poles"

It's the way it's been thoroughly stiched up that bothers me. I appreciate the sentiment of remaining inside the tent to have more influence, but surely for that to be worthwhile everybody within the tent should have at least a modicum of good faith.

That is plainly not the case here. The deputy chair is engaging in back-stabbing, manipulative behaviour and her definition of "collaborative" is one directional ("everybody in the collaborative must collaborate with me, I don't have to collaborate with anyone else except my BPS overlords"), plus various other members / charities / observers have a history of bad faith with ME patients (eg representatives from AfME and SMC to name just a couple).

These arguments have all been thoroughly rehearsed on PR. But is there any reason why we have to call it a tent? Whose idea was that, and why are we all going along with it? If we're doing analogies, why not call it the lion's den, or a swamp, or a cesspool? A public lavatory?

 

[Dx Revision Watch]

Thank you for sharing this Tymes Trust link - I'm slowly getting educated...

You're welcome, Somer.

There is a Dropbox version here, which some may find easier to read:

https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf

 

[Dx Revision Watch]

...But is there any reason why we have to call it a tent? Whose idea was that, and why are we all going along with it? If we're doing analogies, why not call it the lion's den, or a swamp, or a cesspool? A public lavatory?

Just quoting Dr S, here, TiredSam:

But I/we believe it is far more important to be 'inside the tent' of an organisation such as this, especially when it has a considerable influence over the direction that research into ME/CFS is moving forward here in the UK

but I'm fine with "swamp".

 

[TiredSam]

Just quoting Dr S, here, TiredSam:



but I'm fine with "swamp".

I think the phrase "big tent" was being used at the beginning, maybe the CMRC came up with that themselves. Whatever. I like swamp. As in "drain the swamp".

 

[Dx Revision Watch]

But I/we believe it is far more important to be 'inside the tent' of an organisation such as this, especially when it has a considerable influence over the direction that research into ME/CFS is moving forward here in the UK.

I believe it is far more important to stand up and say "This tent/big tent/swamp" is rotten to the core and I won't sit round a table that enables this kind of behaviour."

 

[Countrygirl]

 

[Dx Revision Watch]

Thank you for sharing this Tymes Trust link - I'm slowly getting educated...

Somer, there is a reference in the TYMES Trust document to a service called "Support4rs."

Their website is down at the moment, but (from an earlier thread):

This is the website for support4rs:

http://www.support4rs.com/

"support4rs - The Government's Preferred Supplier...

... contracted to provide protective services with regard to Animal Rights Extremism to research councils, public research institutions and medical research charities. Consequently we work collaboratively with the leading research locations throughout the UK drawing upon the experience of each for the benefit of all."

We assess the current intention and capability of Animal Rights Extremist groups and what risk they present to members of the biomedical research sector.

We assist with the compilation and maintenance of management plans and procedures needed when responding to any animal rights related incidents or threats.

We advise stakeholders in respect of proportionate responses to incidents and the balance between lawful protest and unlawful activity.

----------

From the same thread:

Sunday Times magazine feature article, May 5, 2013

http://forums.phoenixrising.me/inde...-uk-cmrc-tymes-trust.32302/page-3#post-497978


Extracts from "Review of the first three years of the mental health research function at the Science Media Centre"

http://forums.phoenixrising.me/inde...-uk-cmrc-tymes-trust.32302/page-3#post-497983

PDF for SMC review: http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf

 

[Dx Revision Watch]

For an "observer" the SMC is firmly embedded within the CMRC and that review from SMC makes for chilling reading.