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Actually the current NICE guidelines make it clear that there is no evidence to support the use of CBT or GET for those with severe ME, and that they are only appropriate for mild or moderate cases. Then it goes on several lines later to make suggestions as to what sort of GET would be suitable...

Well I tried to read it, but it isn't in my language of choice.

As you can guess, I have been thinking a lot about illnesses lately. Going back to my twenties, I went down with chicken pox, which was really nasty, and a few years later a pretty bad flu. In each case I woke up one morning knowing the infection had gone, but feeling utterly drained and grotty...

I think some carers can be a more reliable source for information than patients: that is certainly true in my household. My wife spots when I am flagging long before I notice it, and she remembers symptoms and severity much more clearly than my befuddled brain can manage.

I was involved for a while working on a website for a charity for the deaf, and we tried to use photos of actual members. They did give an air of reality to the site, but the quality of each photo was a real challenge.

I think the interesting part is my clarity of thought. This was when I was "trapped" in my hospital room (covid restrictions) and when my cataracts prevented me from reading/writing or watching TV. I started to play around with Fermat's Last Theorem (x^n + y^n = z^n) in my head, drawing sets of...

I remember a conversation I had way back with AfME about their use of stock photos, and the artificial image that was portrayed. Their argument, which I can understand, is that it is very hard to get hold of good quality real photos. Most of the photos that people provide of themselves are of...

I've been on a low dose (10mg) of prednisolone for a long time to stave off bad head pains. Strangely, after my recent bout of covid, in hospital, where I also had a high dose of another steroid and IV anti-fungal treatment, I seem to be able to manage on less prednisolone. Prior to that, while...

I wish they took the same attitude when printing some of the editorials about ME.

My brain has been scanned a couple of times, but not for ME. I was told I had some scattering of "white nodules" (I think), and when I said that I believed that it was common for folk with ME, was told that it wasn't unusual anyway. But I do have evidence that I have a brain.

Actually the Sussex and Kent ME/CFS society was running before Colin Barton took over, and I gather there was some unpleasantness. Certainly neither Barton nor the society is very open about how it runs, and does not like to be challenged. Bob and I did try to find out how the subscription money...

With PACE, the uptake of benefits increased a little. You need to look at the table in the McCrone et al report on the "cost benefits". https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808 edit for clarity: scroll down to the tables, click on them, then look at tables 3 and 4.

One of the key questions to ask any clinician who claims that CBT and GET are successful is to ask about follow-up assessments. Do those patients who tell their therapists/clinicians that the treatment has been helpful sustain that opinion, say, six months after the therapy has ceased? (The...

Liverpool "No formal follow-up due to the limited resources and our remit to cover the North-West Region. Patient can be re-referred and contact us for advice." Patients are treated on an individual basis, which suggests that there is no collation of results.

Unsurprisingly, when we carried out our Freedom of Information trawl of ME/CFS clinics in England, we found that virtually none of them would have been able to report on their outcomes. Follow-up was very poor, where it did happen the dropout rate was enormous, and independent follow-up didn't...

Thirteen people and relying on questionnaires? Time I carried out a study to show that bald, retired mathematicians are beautiful. Quote "The LP approach is neither purely psychological nor purely biological." Agreed. It is financial.

So, has my covid (in Feb) added to my ME? I'm certainly struggling to get back on to my usual plateau.

I ought to add though that I was and am on the mild/moderate side. That makes a massive difference. I don't know how he would have handled it if I had been more severely affected.

I too needed a clear statement that I would not recover in the forseeable future in order to get ill-health retirement. I was diagnosed by Prof Lindsay who had, I think, an excellent approach to me. He explained that he thought ME was pretty much for life, but with appropriate measures and...

Every three years when you reach 70!