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The ethics of these things very much involves what the purpose of the exercise is. If it was to make a TV programme showing that you can fool people that is unethical. I do not have the energy (even me) to look at this carefully but my impression increasingly is that it is now ethical open...

I think that is a good question. Why has a representative from MRC been sitting on the CMRC committee all the years when the ME Biobank was not represented on that committee?

Hi @youngscum, EDS 3 is a term now often used for people who are hypermobile. However, we do not have any genetic information on most people with hypermobility and I personally think it is unhelpful to call this EDS at all. EDS covers a group of rare diseases (maybe one person in a thousand or...

Good point, but I suspect the connections were in place.

This is where I remain puzzled as to exactly what role CMRC plays. Normally scientists apply directly to MRC. MRC can have all sorts of subcommittees focusing on priorities, but they are within MRC. I am unclear whether CMRC is an applicant for funds or a facilitator of funds (in which case why...

I agree. In fact the moment is pretty weird because it is nonsense. How can a trial allow patients to: 'decide for themselves what treatment is likely to be best from (sic) them' ? The patients did not do any deciding what was best - the PACE authors kept that job to themselves. Patients...

This does not sound plausible to me and I worry if a scientists is talking about immune mechanisms and is this sloppy. We do not have any good reason to think rituximab works at all in ME now that we have the phase 3 data. Moreover, if resistance was something told with CD20 it would have been...

Sounds reasonable. If the symptoms have not gone away the prednisolone dose is clearly not too high if it is relevant at all. I would want to make a decision like this on the basis of a chest x-ray and routine spirometry tests.

This would make sense for pneumonitis but pneumonitis is more than just an asthmatic or bronchitis reaction. This sort of approach would apply if a chest x-ray showed pulmonary infiltrates ('shadowing'). The dose equates to about 30-80mg. The advice looks pretty shoddy in fact. I ma not sure...

I appreciate your desire not to seek medical advice and I hesitate to respond but in this situation I think I should make some comments. The overriding risk with prednisolone at this dosage is gastrointestinal bleeding. Above about 20mg daily the risk is significant, although chiefly in older...

Looking more closely it seems that people were told they might get a placebo but they were not told the objective of the study or that everyone was going to get a placebo. That sounds equally illegal.

I haven't looked at this in detail but it sounds as if the study was illegal - giving people placebos without them knowing it. That is not full informed consent. You can probably be sent to prison for that! Or at least dismissed from your job for misconduct.

This is a review written as part of the EU COST Action grant. It includes people from various European countries. This really has nothing to do with funding actual research projects. It is a networking and communications exercise. As to whether German grant giving bodies give enough attention...

Does he disclose a conflict of interest? Like earning a living?

Until death has been cured I am not sure that the term cure is ever more than an asymptote of hope. But is cure necessary? Lot of conditions are kept under complete control for years - and often until something else ends the story. We have to eat food to keep alive. We are not without...

I am sorry but this lady sees to be in cloud cuckoo land - and sexist. This stuff about trials only being on men is nonsense. Women are excluded if they cannot guarantee not to be pregnant and the treatment might be dangerous for a foetus. Otherwise there has never been any discrimination...

I think Dr Vogt may be worried that scientists can actually see inside his brain and see how hot it is. Moreover, they can do it through cookies on his cellphone without him even knowing. All the scientists in California are giggling over all the strange temperature spots in his brain. No wonder...

I said most districts because it does not always apply. However, if there were no health centres there could be twice as many hospitals. And for those outside town doctors based in hospitals (where they can keep up to date on knowing what they are doing) can do local clinics or old fashioned...

If we were not sure about the diagnosis we covered all the important and reasonably likely options - often by a period of observation and monitoring vital signs. Not getting the diagnosis straight away was common and provisional diagnoses were sometimes wrong. But I am not sure what any of that...

The blurb gives pretty little idea of what the science is about. In general I am pretty sceptical about the idea of recruiting patients through adverts. The people who respond may be unrepresentative for all sorts of reasons, especially if the research centre has a reputation for being...