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And, sadly, this is one area where few medical professionals have much in the way of skills. Recently, in hospital, one doctor wanted me to start taking allendronic acid because I have been taking a low dose (10mg) of prednilosolone for a long time. I asked if he had read the studies on...

But surely VO2max is a measure of fitness: more specifically of endurance. Deconditioning implies a change in an individual's level of fitness. Without a measure of what is normal for that individual, it is impossible to say if an individual is deconditioned. Deconditioning also, as a term...

Does "deconditioned" actually exist? Less fit than before certainly does: in my case that wouldn't take much proof. But before I had ME I was pretty fit and active. Many of my colleagues were less so. Is there a magic level at which they could be deemed to be deconditioned? Could I have been...

LC? I had an aunt LC.

One of the hardest things with pacing is that there is no sudden marker to say "Whoa! You've done enough!". My wife sees me starting to go a bit pale around the eyes, and tells me to stop, but I'm not aware of it: I'd carry on well into PEM territory before I notice. I think this is one of the...

Oh, @Milo , you certainly defined what was at the root of the mess during my times in hospital. Everyone had well-defined responsibilities: no-one was actually looking after me as a whole person. They were all dedicated and caring, but the system was terrible.

There are certainly many people with ME who need to be told, repeatedly, by professionals, particularly physios, that they cannot exercise through this illness, and that doing so can cause serious and possibly permanent setbacks. Agreed that there is no scientific evidence base for this, but I...

We keep hearing from "experts" who claim that their treatment is effective, and yet, when you dig further into it, there is no long-term follow-up. They are susceptible to the "Thank you very much, doctor: you have been really helpful, and I feel a lot better" syndrome, which seems particularly...

I must admit that after a year of various hospital stays, my physical strength has dropped markedly. This makes me remember a man who completed a Chalder Fatigue questionnaire for me (along with over a hundred others) a number of years ago when I was trying to get to grips with how patients...

I have thought a lot about this over the years, especially with Sharpe, Wessely, White, Chalder and Crawley. I don't know any of them, have never met them, so it would be wrong of me to leap to conclusions, but to my mind there are only three possibilities. Stupidity – a complete inability to...

That would be good. My understanding is that much of the cognitive testing looks at cognitive performance compared with "normal". The problem with that is that we do not know what each of our healthy "normal" performance is. If you were to measure my mathematical skills, you would conclude that...

When I first went down with ME I reported to the doctor that alongside the pain and cold ache in my legs my toenails had stopped growing. I just got that look. A few months later, when they had started again, each nail had a ridge, and the nail later peeled off as is grew up. Yet my...

I think this lack of follow-up is a crucial element in bad medical practice, and is why Jon's comment to the NICE committee about the ME clinics providing long-term support would actually prove to be a very strong force in our favour. Faced with the evident truth that few people recover from ME...

Very interesting. It's amazing what can be learned from medical history, and how little doctors have learned from it. There was an article recently about cholora being spread in mental institutions back in the 19th century, and the lessons learned there were not to transfer any ill person to a...

You may be interested in this article from The Conversation about the unreliability of sleep trackers. with a variety of related sleep articles underneath...

It frustrates me when such people expect us to accept small improvements in answers to questionnaires on health as evidence of efficacy, yet deny the accounts of large numbers of patients who insist that GET has harmed them.

It was well worth the struggle to read it, @EducateME !

I don't worry too much about the definition of brainfog. My analogy is with driving. I used to cruise along an open, country road, listening to music, chatting to a passenger, noting what was in the mirror. In fog I would have to focus very closely on what lay ahead, my speed would drop...

Apart from the fact that I have never yet had a crash like Invdivisible Woman (who can't be parted from her dog), I'm pretty much the same. I used to teach maths, but if you were to give me a tougher maths A-level question, I'd have to read through it several times, and would never be able to...

Agreed, not counting chickens, but NICE, parliament debates, the MRC and even NIHR investing a thimbleful in biomedical research ... just think what the reaction will be if NICE doesn't carry through!