MRC Research workshop: Note and presentations published

[Dolphin]

Dammit I think I just lost a big post moaning about how totally conservative and shit stuff like this is and how the document is the usual mixture of truth, half-truth and gibberish at every turn. And how patients, who are fed up waiting for decades, are making less conservative decisions about when it's time to self-diagnose and self-treat - in the absence of any treatment or medical research for so many years, seems not unreasonable...

(that was the gist of it, however there may be some interesting science in there somewhere, although the content seems blurred to me)

Here it is, Mark:
*********

First reading of the document is that it is a 50-50 compromise of some extremely promising information with a twisting of every key point to let error and falsehood in, and thus designed to suggest promising avenues to a land of ever more starkly defined confusion, with sense and nonsense mingled seemlessly.

The recent XMRV retrovirus study had produced interesting results. However the involvement of XMRV remained unproven and *the study would need to be replicated using *fresh biological samples,* different methodologies*, other cohorts and disease controls. It would be premature to use tests for this agent in diagnosis, or to initiate treatment studies, until such replication had been achieved.

So now, it's not enough that an independent research team replicate the XMRV test findings, we need *multiple test methodologies before we may diagnose [diagnose what, XMRV+ status?] and before treatment studies may be 'initiated' *[does this include initiation of contingency forward planning? Has a risk assessment for been carried out for the "what if?" scenario?]

These multiple methodologies are in addition to the 4-test combination used in the WPI's Science study, the subsequently refined test with greater sensitivity, and the recently released antibody test, naturally. Further studies with these tests that our (admitted-to-be poor quality and thin-on-the-ground) experts can develop to sit alongside the American and German methodologies, on various cohorts, confirming the findings, are required before we can start testing [any?] treatments.

Of course they are describing their own policy and approach which is to take their time and consider both sides of the story until evidence compels them to do otherwise, with a mind stubbornly and emptily wide open - and if nothing else they have been very successfully doing that since 1955.

In the absence of patient provision beyond CBT and GET (vying for place as to which is riskier for UK patients with both "most effective" on the mildest of patients, but with good evidence of extremely damaging and even life-threatening effects on many including the most sick, particularly in the case of GET where drop-outs and damage have received at least some attention, overseas), which provision is in any case merely monopolised support and coping mechanism advice, in our case unhelpfully - dangerously - applied as a placeholder in the management of our particular Medically Unexplained symptoms, and which provision is not a treatment -- in the _*absence of any medical treatment** or research for two or three decades*_ many impatient patients are taking a less cautious approach.

It would seem that such unwisely experimental patients (who should really wait to see what it all does to monkeys and mice if they know what's good for them - for the patients I mean, not the monkeys and mice), together with those who trust those patients' accounts, retain the lead over the MRC in their understanding. These reportedly dangerous and reckless individuals are prone to thinking they kind of basically know what hasn't been proved yet - and much more besides - but don't *really *_Know _it in the sense of "multiple replicated methodologies successfully applied to multiple cohorts and a big room full of sheepish psychologists listening to endless retrovirologists (student recruitment for whom may soon be under way) describing their work throughout the mid-to-late 2010s on alternative XMRV-test replication methodologies" but only in the widely-known-to-be-unreliable 'informed-as-possible trial-and-error' sense of "What works for us", now rendered even more worrisome by the darn internet...

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[Mark]

That's the one! Thanks ever so much Dolphin, how on earth...??

 

[oceanblue]

(Off Topic) changing settings

One can change one's settings so one gets an E-mail for messages in threads one has already replied to (called subscribing to that thread).

Thanks, Dolphin, really helpful. I saw the settings page when I joined and didn't understand a word of it, but now I've used the forum I see how useful it is. Great to be able to see the most recent posts at the top.

 

[Dolphin]

That's the one! Thanks ever so much Dolphin, how on earth...??

Well, it could be because I got an E-mail saying there was a new message with the text of the message or it could be ... (do do do do, do do do do...)

 

[Cookie Monster]

MRC CFS/ME Expert Group

The Group is chaired by Professor Stephen Holgate, chair of the MRC Population and Systems Medicine Board and brings together leading experts in the CFS/ME, from associated fields that may be involved in the underlying mechanisms of CFS/ME and from the charity sector:

• Professor Stephen Holgate - University of Southampton – Chairman
• Professor Jill Belch - University of Dundee
• Dr Esther Crawley - University of Bristol
• Professor Philip Cowen - University of Oxford
• Professor Malcolm Jackson - University of Liverpool
• Dr Jonathan Kerr - St George’s University of London
• Professor Ian Kimber - University of Manchester
• Professor Hugh Perry - University of Southampton
• Dr Derek Pheby - National CFS/ME Observatory
• Professor Anthony Pinching - Peninsula Medical School
• Dr Charles Shepherd - ME Association
• Sir Peter Spencer - Action for ME
• Professor Peter White - Bart’s and the London School of Medicine and Dentistry

For declarations of interests for members of the Expert Group please see ‘Declarations of Interest’.




The link to declarations of interest returns:

Hi Mark

You can still bypass the error code to see the "declaration of interests" by instead using the submenu link in the far left hand column/ "main menu". Three members are still yet to make any declaration after all this time!!

http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/DoI/index.htm

Some of the more insightful info:

Prof I. Kimber - shareholdings in Astra Zeneca,Syngenta... See more
Prof P. White - consultant for DWP and Swiss Re-insurance
Prof S. Holgate - consultant for Novartis, Merck,Roche,etc

And the not so insightful:
Prof P Cowen - no declaration made -?
Prof H Perry - no declaration made -?
Prof M Jackson - no declaration made ?

 

[Esther12]

I've just noticed that these files are now off-line at the MRC, so very handy having some of them on ME Agenda:

https://meagenda.wordpress.com/2010/05/14/mrc-research-workshop-note-and-presentations-published/

https://meagenda.files.wordpress.co...-cfs-me-research-workshop-19-20-nov-20091.pdf

Thanks Suzy.

I wonder if there's some way to make them easier to find via google? It took me a bit of luck to track them down from the original, down, links.