Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.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
We alll do.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.
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.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?
What the hell is he doing screening research applications.Current/Future Projects
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Screening research applications: ME agreed to lead this area of work.
This project will be launched alongside the website.
Mark Edwards (ME)
PAPER 2: Conference 2015 Evaluation
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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.
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.
Mary Jane Willows and Ed Sykes?! A dream team.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.
What a complete joke. Why is Ed Sykes involved in any way? What valuable expertise has he ever displayed?
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.Has anyone seen anything from this? Would almost certainly be hilarious to see what these two had come up with.
CMRC Aug 16 minutes said:
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.