UK CMRC Nov Board meeting - Grand Challenge confirmed, Davey Smith keen

[Scarecrow]

Case definition and subtyping come under the scope of the project.

Is it not a bit premature to assume they will use Oxford and then use that assumption as a basis for criticism before we know any of the details?

 

[Simon]

I don't know enough about breast cancer and asthma to comment on whether the statement that there are many different "diseases" (as opposed to subsets of one disease) is true or whether this is just Holgate's or whoever personal view/interpretation of the data

There's a Nature paper somewhere showing 13 diff types breast cancer tumours at the molecular level, some of which are the same as those in other tissues.

On the other hand, we have no idea what Oxford criteria select, it could be some subset(s) of ME/CFS or it could be something completely unrelated. I know a lot of people who are always fatigued but have nothing resembling ME/CFS.

We alll do.
My point was to include Oxford-not-other-mecfs-criteria patients as a group, but not as the entry screening criteria (othewise the cohort could end up being mainly 'tail' and little of the 'dog'). But even CCC or whatever mecfs is highly unlikely to be homogenous, as the example of breast cancer (nice distinct disease) and many others shows: anything defines by symptoms is likely to be broad by nature, whatever those symptoms are.

Case definition and subtyping come under the scope of the project.

Is it not a bit premature to assume they will use Oxford and then use that assumption as a basis for criticism before we know any of the details?

Yes: I suspect there will be a huge amount of attention on and debate around the best criteria to use. Many of the points being raised here are valid, but it's a tad premature to damn something where the researchers who will run the project haven't all been signed up yet, let alone had a chance to meet and discuss these issues.

 

[duncan]

There is an argument that the time for a patient community to be vocal (and even critical) about potential criteria, and, yes, involved researchers and historical bias is before the research begins.

 

[Dolphin]

Current/Future Projects

[..]

Screening research applications: ME agreed to lead this area of work.
This project will be launched alongside the website.

Mark Edwards (ME)

What the hell is he doing screening research applications.

He's the guy who got the MRC grant who is interested in "Functional Movement Disorders". Hasn't published any ME/CFS studies as I recall.

 

[Dolphin]

PAPER 2: Conference 2015 Evaluation

[..]

The CMRC conference is of immense value for biomedical researchers in the field of CFS/ME. At the moment, each research team is searching for answers under their particular streetlamp. The CMRC conference is the only meeting point (in Europe, possibly globally) at which these teams come together to report their findings, and to generate ideas for future research and collaborations.

There's the Invest in ME symposium/conference each year.
And the IACFS/ME conference which is a lot bigger than the CMRC conference every two years.

 

[jimells]

There's the Invest in ME symposium/conference each year.
And the IACFS/ME conference which is a lot bigger than the CMRC conference every two years.

Maybe the CMRC should come here once in a while to find out what is happening; they might discover they ain't the Center of the Universe.

 

[medfeb]

Excuse my ignorance but how does the MRC fit in with this effort? Is there any cross-fertilization? Any agreement on critical items such as the scope of disease and case ascertainment methods, measures, etc? And who will make those decisions for the MRC effort?

http://w3.cost.eu/fileadmin/domain_files/CA/Action_CA15111/mou/CA15111-e.pdf
A new European research network for ME/CFS called EUROMENE has been approved by the European Cooperation In Science And Technology (COST), in layman terms, COST is going to fund professional collaboration between different research teams throughout Europe.

PR thread here
http://forums.phoenixrising.me/inde...h-network-for-me-cfs-funded-by-cost-eu.41509/

 

[K22]

What the hell is he doing screening research applications.

He's the guy who got the MRC grant who is interested in "Functional Movement Disorders". Hasn't published any ME/CFS studies as I recall.

I agree. This was the biggest alarm bell for me, I wasn't sure if his expertise was being used to purely assess scientific quality but I don't remotely regard him as an ME or CFS expert. This I s where the UK hugely lags behind the States, CDC use of experts draws on Peterson, Klimas, Basteman etc. When I read the names in these minutes, the dream team of Mary Willows (AYME - promoter of PACE & NICE & BACME) & Ed Sykes (SMC media rubbish feeder) , Esther Crawley (fatigue plus one NICE criteria user) , Edwards (FND) , Sonya from AFME (establishment propper upper) , I don't feel reassured. I know experts can't be magicked up though and our past is still limiting our present in that respect, along with continued use of the name and criteria of years back where the illness was very much framed as behavioural & not enough is done in the uk to inform Drs otherwise.

The minutes suggest the CMRC will have 2 focuses for the next year, the grand challenge & the next conference. Stephen Holgate is focusing on one (possible) IOM report aspect but ignores the calling for the scrapping of CFS, the need to focus on multi system disease, especially the PEM aspect, the need to pump up funding etc. When I hear the talk of need for very broad criteria I loose interest, although I accept others more scientific than me see grounds for optimism for this approach here. I'm just not so interested in the subgrouping of chronic fatigue but the subgroups of a much more tightly defined disease state. Im concerned it's just continuing the long UK broad tent fatigue approach of Wessely , White & Crawley rather than honing in on multi symptom CFS & ME which surely would get to the "useful stuff" less quickly for the very sick.

Maybe the grand challenge will contribute to the field but this is all taking some time & the UK is still not doing enough to really offer hope to those seriously ill.

 

[Esther12]

4 Code of Conduct for Communication

MJW and ES have produced a draft code for consideration by the Board. This is to ensure clarity regarding how communications and how members can and should engage in scientific debate as well as in relation to CMRC matters.

There was a discussion in relation to specific points which will feed into some further amendments and be re-circulated for final approval.

Once approved, the final draft will be placed on the new website.

Mary Jane Willows and Ed Sykes?! A dream team.

What a complete joke. Why is Ed Sykes involved in any way? What valuable expertise has he ever displayed?

Has anyone seen anything from this? Would almost certainly be hilarious to see what these two had come up with.

 

[Simon]

Has anyone seen anything from this? Would almost certainly be hilarious to see what these two had come up with.

I'm pretty sure the final outcome was a new clause that drops any reference to harassment and instead promotes the importance scientific debate. My guess would be that this clause was only passed after much discussion within the CMRC.

The last CMRC board minutes did say it had been approved but didn't specify if the latest draft (as described here) had in fact been passed unamended, though I think that's the case.

Charter and Terms of Reference Approved

 

[Esther12]

I'm pretty sure the final outcome was a new clause that drops any reference to harassment and instead promotes the importance scientific debate. My guess would be that this clause was only passed after much discussion within the CMRC.

The last CMRC board minutes did say it had been approved but didn't specify if the latest draft (as described here) had in fact been passed unamended, though I think that's the case.

Thanks Simon. I was hoping for more detailed guidance from them!