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Here's a less medical input. A good friend of mine from our local ME support group has just undergone such surgery in Barcelona. The transformation so far has been spectacular, although of course it is early days. In that context I'd like to make two points. The first is that many people who...

First of all, you have to decide upon your theme and the target audience, or the workload will overwhelm you! Even then, trying to pull everything together is really difficult. I try to keep my videos short, and it's a terrible task dumping all the good stuff just because there isn't room for it...

To be honest, it's a massive task. Really she would need to get a broad overview, then decide what to build it around - patients, children, research, poor-treatment, medical attitudes, education, portrayal by the media, benefits, severe ME, etc. Any one of them could be a full video. I'm always...

Thanks Bluestem! My cranial desert probably does lack stimulation. Discussing light in general, I'm an owl and always have been. I go to bed late and prefer to get up late. You can bomb me with blue light in the mornings and I'll still prefer to sleep. I'm also a keen gardener, and like to be...

Back in the sixties a friend of mine had a minor op, and was excused PE for a term. At the end of that he received a reasonable report from the PE department as a lad who did his best. So he never went back: each time there was a PE lesson, he went to the library. His next PE report noted his...

If you go in for three half days, what does that count as?

So far I have read that they had problems with sixth-formers who were only required to attend appropriate lessons, which was why they proposed to change their primary measure from school attendance to sf-36. (page 10 of the feasibility study) As an ex-secondary school teacher, I have no idea...

I'm still working back through the original documents, but originally they did intend to use school records, then ended up just asking the kids. Trish is more or less right about the measure: the possible responses were ½day, 1 day, 2, 3 , 4, and 5 days. What I haven't found yet is what...

It is quite close to me, but I've never really known much about it. I tried getting in touch a couple of times, but didn't get anywhere.

Agreed. That is why I started the thread with that. I am playing around with an article that could include some sort of comment about this, but would be reluctant to do so unless I was sure it was more than just a rumour that attracted me. Certainly the ones that I have come across have been...

Do GPs dealing with human beings have to give up when they have family members who are human beings?

I have come across a small number of medical professionals, pretty much across the full range, who either have ME or a close member of their family does. In almost all cases, they have preferred to keep that fact secret, because of the potential reaction of their colleagues. The same seems to be...

If you trawl through the "secret files" held at Kew, which covers late 80s and 90s, there are a few bits of complaints that the MRC had not funded any biomedical research, and they didn't manage to quote any examples to counter that. Normally they dig back in time to prove that they are fair. So...

I forgot to add that my overall estimation is that only around a quarter of spending on ME research is what we would call biomedical, and that the total amount spent over the last 40 years into such research is of the order of the amount of money spent currently in one week into research into...

I did produce three videos on funding: one comparing overall spending by NIH on different conditions (Depression, Lupus, MS, Diabetes, HIV/Aids and ME/CFS in 2011, and then an updated one to show the increase in spending on ME in 2017 (screenshots attached - note the dramatic changes!)...

"The idea that nothing can be done ..." Aaaarrggghhh! How about the idea that constantly labelling it as a purely pschological state means that many doctors don't even try to treat basic symptoms! Rant over.

I can't read it: is it subscription only? I haven't counted them: the numbers will be high, and it is tedious to sort out the UK ones. But the number of studies funded by the MRC, by NIHR and by Wellcome could be counted. That will miss any UK ones funded through other charities. One problem is...

I can't believe I did anything to help! I'm sure there is an imposter going around pretending to be me, because I have no recollection of half the things I am supposed to have done.

If there were treatments that helped people with non-ME chronic fatigue but harmed people with ME, it would be important to distinguish between them. "Rehabilitative" CBT and GET are ineffective all round, so should be irrelevant. There shouldn't even be an option of "Well give it a go and see."...

In one way I would like to see what happened if the process were reversed. Rather than seek to give a name to each condition, knowing the tremendous variation within them, doctors instead focused on what treatments were appropriate to certain combinations of symptoms. Yes, I know that's a weird...