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Not an easy one to answer. There are some intelligent people working in closely related fields who might see the value in testing something. After all Fluge and Mella weren't even in the field but were motivated. When IiME wanted to set up a rituximab study in the UK I organised a team who could...

Yes I agree. We learn. My original concern was not about posting experiences of this sort but more in terms of appearing to try to champion a drug in terms of comparing side effects with other drugs and so on. I suspect that people posting at the moment are just enthusiasts, but enthusiasm can...

That seems to miss the point. Vulnerable desperate people may be just the people to 'take the risk'. We have to consider the effects of our actions on everyone. That makes no sense to me. Posting anecdotes on forums is not a way to get treatments established - it has nothing to die with...

But vulnerable, sick, desperate people are not necessarily in a position to 'take into consideration'. And how would you find that out without a trial? But nobody is in a position to know. I am just expressing my opinion as a doctor and someone who has seen the harm that comes from...

I wish I understood what sort of things go on in the heads of people like Garner.

No I said nothing about false or exaggerated stories. I was talking about constantly trying to argue the benefits rather than the downsides of an unproven therapy in a way that we can reasonably assume has a risk of inappropriately encouraging others. Certainly the insurance companies will look...

I think you may be missing something big. There has been a long term discussion about this issue and it started elsewhere - and it is probably the main reason why we are now on S4ME. Over a period of time it became clear that some people want to be able to make encouraging posts about...

You don't really learn about clinical evidence quality until postgrad training though.

This is a pretty shocking admission. We send out info to docs that isn't necessarily what our guidance says - just something dumbed down they can read quickly. And of course the message comes from a communication executive (just called Janet). So she wouldn't realise just what a howler she is...

I realise that people should be able to discuss drug options openly but I do have serious concerns about what is effectively gossip being spread on the forum. As you know, I introduced rituximab for non-haematologic autoimmune disease and had experience directly or indirectly with hundreds of...

I wouldn't worry too much about Dr McFarlane. He calls himself and independent psychiatrist and seems to have a bee in his bonnet about conflicts of interest. He doesn't understand methodology. I don't think he is going to be taken terribly seriously by anyone as I suspect he has rubbed everyone...

I am afraid that is just a list of the current buzz-words. I would want something more original or specific to read on.

Neuropsychiatric, as opposed to psychiatric is probably most commonly used to indicate changes in mental activities associated with known metabolic, toxic, inflammatory or degenerative disorders. So it would be used for hypothyroidism, alcoholism, Alzheimer's, Parkinson's, MS. It would cover...

I agree. If it was called something like 'Therapeutic attitude' meaning being supportive, respectful and kind to patients then I agree that would be a non-specific factor that might bias because it did good in a non-specific way. But the term 'alliance' seems to me very specifically used to...

Well that would seem to me to be very much the source of bias. The bias not being from the researcher's allegiance to a theory but the 'client's' allegiance to the therapist. The generic mechanism indicated by Chalder is that the patient has to accept the positive nature of the treatment and go...

I think you may have missed the point. Symptoms are absolutely where medicine starts. My development of rituximab for RA was absolutely dependent on listening to symptoms - but DETAILS of symptoms. Symptoms are only any use as part of a history. If we ask if someone has pain we get nowhere...

It is interesting to see the open acknowledgement of the likely main source of bias in studies, and the fact that they even have a word for it - 'therapeutic alliance'. How far away is that from therapeutic connivance or conspiracy? In the 1989 Chalder paper it is overt connivance. The patient...

That makes complete sense to me. Symptoms that put you in hospital will be due to pneumonia, which will resolve fairly quickly. Symptoms for other reasons may well not. I think bundling all these people into 'LongCovid' may be pretty unhelpful.

I wouldn't worry about cortisol levels. When I was a registrar I did a study on patients coming in to hospital and just being admitted to the ward was associated with a rise in cortisol -regardless of why they were coming in. Much as expected.

There's something peculiar about this story. Compare it with this story. Last week there was an unusual combination of heavy rain and high wind and water came through the bedroom ceiling and spoiled the carpet. I told my psychotherapist about this and she asked if it had ever happened before...