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I’m assuming that those last two are two different versions of the same basic questionnaire? That would seem not so different from the change that PACE made (which does undermine their approach). I don’t know how easy it is to get a Parliamentary enquiry set up, but I assume there is a certain...

My views of PACE's methodological flaws are on record, but there are a couple of issues around these particular arguments: PACE have already argued that they primary outcomes are still self-reported fatigue and function; they changes from categorical to continuous reporting*, but that's not...

Thanks. And it’s really good to hear you have those links coming in. I fear it might also be The Bubble in action :(.

Thank you all!

I’ve just posted a blog about the important new paper from @Carolyn Wilshire @Tom Kindlon, David Tuller and others that exposes serious flaws in the PACE Trial PACE trial’s findings fundamentally challenged by a new study In a nutshell: Analysing PACE the way the authors originally promised to...

Thanks, Sasha! I hope people will enjoy the blogs and will sign up to follow it. Here's the full text of my first blog (make the most of this one, I will probably never write one this short again :)) Welcome to ME/CFS Research Review Welcome to the ME/CFS Research Review blog, which aims to...

Thanks, Jo. Where we have disagreed, it’s only been over tactics, not the overall goal of getting much more, high-quality, biomedical research.

I don’t think so. The test is primarily used for cardiopulmonary diseases. There is very little data for any other conditions. I think there was a pilot study with data for one HIV and one MS patient, but that was it. And that’s a hole that needs filling in this field: we need good data for...

Apologies for the misunderstanding Yes, the goal of the CMRC is to set up a platform to enable research and to generate a pile of cash for biomedical research. Neil Harrison’s current functional disorder project is totally independent of that and predates him joining the board. Now corrected!

He’s not leading the CMRC but one board member among many and I think we need to look at the whole picture. The deputy chair is Chris Ponting, and another recent person joining is Professor Patrick Chinnery, a much more senior academic than Harrison and a mitochondrial specialist. I don’t...

as far as I’m aware, the government did not allocate specific funds to dementia. But you’re right that this will require a sea change in attitude from funders. The key point about the dementia platform is that it moved on from the current “competitive funding“ approach, with the MRC let’s...

That's a fair question. I certainly hope that members of the board will be planning new research projects; Chris Ponting was talking about the potential for genetics and the board minutes talked about a genomics study. Two new board members (Chinnery and Elson) are mitochondrial specialists...

Brian Vastag asked me to post this here as he isn’t on Science 4 ME. Hi - I'm nearing the end of week 2, visit 2 of the NIH study. Thought that I'd reiterate to the community that the study is still recruiting and still needs patients. To volunteer, contact patient coordinator Angelique Gavin...

I've just posted my perspective on these developments: CMRC's new biomedical focus and big ambitions (my new blog)

Full disclosure: seems the right time to say that Chris Ponting and I have known each other for many years (since 1983, he reminded me) and it is fair to say that I am the reason he first took an interest in ME/CFS. As a successful scientist running a multi-million pound research programme, he...

The CMRC's new biomedical focus and big ambitions In a dramatic move last week, the UK CFS/ME Research Collaborative (CMRC) committed itself to a new, biomedical direction. It has started taking concrete action to engage with patients and also announced ambitious plans to enable much more...

I agree it’s positive. The CMRC has already said that they are looking for an open platform, which would be open to all comers. So it’s not a fund grab by the board. But yes, the pie has to be big enough to produce decent slices. That would mean at least an order of magnitude more money than...

Some progress already, a presentation to the MRC Population and systems medicine board yesterday clearly went well:

There does seem to be a very big change from the CMRC in its attitudes to patience and willingness to engage with them: There will be either one or two members from the patient advisory group, And two of them joined the February board meeting (it looks like the full members are yet to be...

The minutes state that should BACME vote for a joint conference, “discussion would be needed with the CMRC membership.” presumably includes the patient associate membership. And I suspect many biomedical researchers on the board would have reservations about such a move as well. The BACME...