Search results

I am thinking of sending him a personal letter along the lines of .... there are only a couple (?) of researchers and scientists in the UK prepared to stand up and say what a disgrace the PACE trial is: most of the ones signing the letter to The Lancet calling for an independent re-analysis are...

Link it to their allowances?

Yes, I admit that I over-simplified! But the essential idea is that I don't think that this sort of patient support is a natural part of our focus. But my brain manages "simple" much more easily. Of course we support each other, and I don't claim for one minute that the limerick thread is built...

There is a side to this debate which hasn't been mentioned – the nature of this forum. There are very many good things that should be done on behalf of people with ME, but none of us has the energy to be involved in all of them, or even some of them. This forum was set up with a very specific...

I did a couple of hours private maths tuition a week, and that was easily enough for me to pay the lower NI rate. But, years spent bringing up children, or caring for someone also count: I'm not sure what the rules are now, but Kathy got her contributions for looking after her mother, then we...

That is certainly true of a minority. But what worries me is the large number of dedicated medical professionals, who aim to do their best and who genuinely do have the patients' interests at heart, but who follow the CBT and GET lines because they have had it drummed into them time and time...

Perhaps we could have an S4me stand and hand out the green JHP books, with me, Tom, Keith, Carolyn, Jonathan, and David all offering to sign them (for a small phee of course). Perhaps, instead of being known as the PACE trial issue, it should be called the S4ME issue.

I think children can suffer the most from assumptions that the condition is primarily psychological, especially if it is tied up in child protection approaches. There is a danger here though in falling in with the common belief that psychological conditions are relatively silly and you just...

The number of ME centres in the UK is limited, and the idea of "name and shame" is potentially very troubling. But how about listing the good ones? Or even listing all the centres, and adding beside them the number of good recommendations received? Then, if any centre doesn't receive any, or...

Could we set up a similar diagram showing how doctors fall into the trap of thinking that this sort of approach works, and it becomes the easiest path to follow in what was once their brain?

@Jenny TipsforME : I'm not sure how to answer that. I prefer to shop in quiet, uncluttered supermarkets – a busy, noisy one tires me out more quickly. But I don't get vertigo symptoms (unless Kathy starts chatting to someone, and I'm just standing there for several minutes). I'm not really a...

I still drive for up to an hour in an automatic, perhaps 3/4 hr in a manual, but cannot converse unless the road in front is straightforward. Nor can I listen to music any more. But that's different because it is making different claims to my brain, and both cells are pretty tied up with the...

Backtracking for a moment on @Trish 's comments about muscle "fatigue", when I first went down with ME I had no diagnosis, no supportive GP, and struggled on with my job, teaching. At lunchtime all staff were expected to return to the staffroom (a couple of hundred yards away) to pick up any new...

In a way this is like Russian roulette. There may only be one cartridge in the gun (there may be none!), but the consequences are terrible. There are enough concerns expressed about GET, and enough anecdotal evidence, to say that the potential is there for GET to create significant, long-term...

If you want to search for ME, and avoid every blog that uses "me", put it in square brackets [ME], and that carries out an exact search. Well, at least it seems to do that for ME.

But Limericks, like my dog's hair, Just turn up in heaven knows where: You think you are clear, Then more rhymes appear: Escape them? You haven't a prayer.

@Barry , we can't continue with the plot if people keep mixing us up. They might work out that we are in fact the same person. Or, in fact, that there are only really three people behind all the different "faces" on this website. It's all part of the quantum theoretical proposal that every...

Not my link, I'm afraid @NelliePledge

Thinking about my own early days with ME, I carried on working for 2½ years (no diagnosis, no-one acknowledging how ill I was, mortgage to pay), so I really was in a bad state when I finally quit. Walking 100 yards was a real struggle. (So was walking 100 metres, with a French accent.) As I...

Bob and I were members, way back. We objected, and to Colin's push on the Lightning Process, and he became very unpleasant about it. It is far from a democratic organization.