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All the haemophiliacs in the UK who got AIDS and Hep C from blood products even after it was known there might be a problem.

I think an answer is needed for this one.

I agree. Someone seriously interested in the topic should be posting on S4ME, not treating it like a peep show. After all, it's not that hard to do!!

This is quack garbage Robert. What would be the point of sequencing all the RNA in your stool? You might as well sequence the RNA in your front garden flower beds. Or measure all the trainer shoe sizes in a landfill. Even if the microbiome mattered to disease, which I doubt, this would be a...

None that I know of. These tweets remind me of London Borough of Barnet Refuse Collection Department. They have stickers that in effect say 'however awful a mess you are in we are determined to persuade you that we are doing a brilliant job to look after your interests'. (We even have people...

This makes sense to me, but I am a bit more optimistic. CCC is probably not ideal for clinical classification but I think the IOM proposal at least indicates a fresh look with PEM as a focus. My impression from talking to scientists in the UK (as apposed to babblers of various sorts) is that CCC...

This thread has been split from here. As issues were quite intertwined, a number of posts have been copied. In copied posts, text not related to this topic has been greyed. This makes sense to me, but I am a bit more optimistic. CCC is probably not ideal for clinical classification but I...

Does anyone know what this means? 'including leaving work well if they are too ill to continue'

But people on S4ME are not so dumb, so all is not lost.

Because they are dumb, @Sasha. The sad reality is that most people in charge in science are dumb.

The crucial breakthrough in treatment of malignant diseases of the immune system (leukaemia, lymphomas) came when it was understood that complete removal of diseased cell clones could be achieved with combinations of drugs leading to long term cure. The target is relatively easy to understand...

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...