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It's a lot to ask, though, given that they're lost their child in such traumatic circumstances and then had to deal with the inquest. And done so much groundwork before and during the hearing, too. I hope the pressure comes off them now. They may need time to grieve all over again.

Even if it happened, I wonder if it would achieve more than the inquest and the media coverage. Everyone can see it was a complete clusterfuck, and what that poor young woman and her family had to endure is horrifying. The fact that the inquest was relatively short and the information coming...

Yes indeed. I suppose they meant liquid foods taken by mouth as well as the NG. Let's hope she recommends the system is changed to make it more straightforward for other approaches to be tried, so doctors don't base decisions on recommended practice for unrelated conditions, or fear...

Only because she can't know. None of us can, not really. There aren't enough recorded case histories of people who are as ill as Maeve for there even to be any statistics. Sometimes people who're very unwell get into a cascade situation, where a treatment triggers major consequences or a...

No, NJ/PEG weren't tried. NJ was considered likely to fail, PEG doesn't seem to have been discussed.

Just quoting my own post in case this appears out of sequence: one of the important things about this verdict is that it is itself evidence. Doctors and hospital boards cannot now say they didn't know severe ME can be fatal.

The outcome was mostly what I expected, though that hasn't make it any easier to hear. It would have been impossible for the coroner to say that Maeve's death might have been prevented, or that an individual doctor took unreasonable decisions. There's too little evidence, too few case histories...

If it looks well set up enough to give clear results, I imagine it'd be good practice to wait? If not, then I guess there's an argument for doing a rigorous trial. On a personal level, I wouldn't want to sign up to a trial of any of the meds currently under discussion. I'm not sure any of them...

Thank you, that sounds like a useful move.

As we don't yet have much on which to base a big high profile research study, I'd like the APPG to push for the basic groundwork on ME/CFS to be done. We don't know: how many people have ME/CFS; what proportion of those who develop post-infection syndromes are still affected two and five...

I think we should be doing exactly the opposite, and fighting to hang on to ME/CFS until we know more about it. ME/CFS has the advantage of being recognised and in use. It's already beginning to look as if we might have a battle on our hands against coding it as FND in order to get around the...

That's what happened to me. In my case, the psychiatrists I was referred to were really helpful; they worked out very quickly that I didn't have the characteristics of someone with an eating disorder, just as any other specialist could spot the absence of patterns they see every day. The problem...

Until you find out they were wrong too. Or ploughed on with research that, with the benefit of hindsight, probably held back progress. Or might have been Nazi collaborators, and also got stuff pretty wrong. I have a diagnosis of Asperger's syndrome, which is a bit awkward. All names are...

Salt helps my OI, too, and generally makes me feel less unwell. I used to add a bit to food, till I stayed with someone who didn't use salt in their cooking and realised my muscles weren't on fire any more. It's so painful that OI's the lesser evil. Next best is leg compression. It doesn't...

Yup. And if anyone had found a way to "fix" it, they wouldn't be posting stories on Facebook. They'd be a busy specialist in a clinic or a hospital.

I thought it might be an idea at one time, but not now. National and international healthcare agencies have been actively moving away from naming conditions after people for some time, quite rightly I think. Lots of reasons, but not least because it has the effect of privileging white, male...

As nobody asked him for his opinion and he obviously has nothing remotely intelligent or useful to say, hopefully they'll think he's irrelevant.

Other than my legs (which have a fixed weakness ), I can build some muscle. Possibly even normally for someone with my body-type: slow-twitch predominant and very mobile joints. Decent at endurance, hopeless sprinter, never going to look like a boxer. I've been able to do it since I first...

It could be, but there seem to have been endless problems getting the manufacturer to part with any—or something like that. That could be resolved now, though, I've lost track. It seems to have been on the list of possible disease modifiers for yonks.

It's not that I don't think it's a good idea, and it would be popular with patients. I just worry about what the realistic medication options are, and how many have enough convincing potential to sway a funder. Specially if it's not going to include LDN or Mestinon.