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George M is expecting some flak. If so I will probably respond with a letter.

I am a bit involved with other things at present to engage in polishing what looks like a very good draft letter. I am very happy to sign a letter if it helps and if I do I will go through it in detail in case I can suggest anything. But others have done the work and know the detail so I doubt I...

Part of the problem is that there is no scientific community any more. It has been destroyed by the publication companies and by politics related to commercial pressures with universities. The science community I grew up in with people like Andrew Huxley and Francis Crick simply no longer...

The reality is more depressing. Big national patient organisations for big common diseases of which an example might be hmm nudge nudge, maybe that one, can be as misguided as the Science Media Centre if they want to be. I have been there done that.

I am not saying that and I remarked to Hutan that I agree with you on that. But look at it this way. As a seasoned biomedical scientist with a track record it is very clear to me that the combined expertise and knowledge base of S4ME members in terms of worthwhile research in ME/CFS is way...

Not sure what voted or directed would mean here? If someone else funded it and the patients were keen I cannot see we can object. it might have been better to put money into other things but to be honest there were precious few leads to pick up on. I don't think XMRV was a fraud in the sense of...

This is where I would worry. Patient organisations are a very mixed bag. There are very few official 'national organisations'. For rheumatoid in the UK there are several different sorts of organisation, some purely patient run, others mixed. Some have strong links with particular researchers...

I think Hutan is talking about all these things.

And surely that is entirely their prerogative. Implausible theories sometimes turn out right. The problem there was just poor lab science. There is a big difference between the influence of direct patient funding without scientific peer review - which until recently has been fairly limited -...

Except that all research involving patients is already under patient control in the form of informed consent. I think the idea is just to ensure that that process genuinely occurs in good faith - which includes things like patients not discovering later that studies are published behind paywalls.

I can see that getting a set of standards together that can be agreed on by a good range of ME/CFS-specific charitable funders might be a nice idea. It might even be agreed by some of the general funders like Versus Arthritis and Wellcome.

Yes but that is an exceptionally bad paper and not one from the Biobank I think! I doubt the steering group would have approved sending out samples for a project like that. It would be nice if groups like Fleischer et al did not undertake such studies and draw such conclusions but I find it...

You have a point there but there is a valid reason for being against the psychosomatic theory. It was the one thing that PACE disproved conclusively. Despite patients reporting that they felt a bit less symptomatic they had no increase in activity or ability to go to work. The theory stated...

I think the argument is a bit back to front here. From my perspective no researcher worth their salt should set up a project without clear approval of patients. I don't think anyone is suggesting that they need to have the approval of any particular pressure group - maybe like CFIDS. When I...

Indeed. My point was very much a politically driven one!

Promoting is different from recruiting. DecodeME was a bit unusual in that every possible route was used to try and attract lots of people. I had misgivings about bias but in this unusual case it may have been the least problematic approach. My memory of the requirements set up by the UK ME...

If the situation is anything like rheumatoid and osteoarthritis I suspect it is not so much that T2 becomes T1 as that gradual onset T1 in an adult who is not thin is likely to look like and be assumed to be T2. It may even behave like T2 to the extent that carbohydrate restriction and weight...

This is one thing that I think could be shouted from the rooftops. It should be a matter of law. Not specific to ME/CFS of course but no harm in saying it in whatever context. I would strongly advise against that for just about any disease and certainly for ME/CFS. It will not produce a...

I actually think the recruitment may have been a huge problem. Things are complicated but in a sense their argument that the problem is 'effort preference' is based on proving that PWME could do everything, they just preferred not to. And that could very well have simply reflected the fact that...

I am not very keen on the idea, other than simply saying that ethical research is that which has good enough methodology to provide useful answers that help PWME. There is huge pressure from certain patient and public groups to allow access to unlicensed unproven treatments and to ban vaccines...