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I know of someone who had aids and grab bars etc. around her home. Suddenly, the advice was that ME patients shouldn't have those, despite her being assessed as needing them in the first place. So, instead of just leaving them, they showed up in a van and removed all the aids from her house...

The Daily Mail article quotes him: So an interpretation of this quote I assume. Edited - the text quoted do seem to heavily imply behavioural therapy will do the trick.

I detect a pattern with some of these folk such as Vogt and some of these twitterers: They seem to believe that their own subjective experience is a Universal Truth applicable to all mankind. It strikes me as some sort of psychological issue where they need to put their own experience above...

A quote from @Sasha 's link: Well, quite. the muscle tone of someone under anaesthetic will be very different so it won't really be what a normal exam would feel like for the doc either. A sedated or anaesthetized person isn't going to say: "Ow, that hurts! Which vet school are you from?"...

I got tinnitus very young. My mother used to tell me off because I'd get up in the middle of the night, sure the TV had been left on. In those days when the channel went off air they transmitted a high pitched noise. Or maybe the fridge door was open..... Eventually, I learned to live with...

That's awful @Allele . :hug:. I had the heeby jeebies and everyone treated me with absolute respect. How can they possibly expect you to have any trust of faith in them if they behave like that?

That's just it apparently, @Trish, they don't. The patient victim is completely unaware. No respect.

I think the day may come when this type if evidence proves useful.

I think the link @Andy posted was a link from the facebook page to the MERUK page, rather than to facebook.

WTF? I had no idea they did this! Well, if some see this as being ok, their attitude to women with hard to diagnose conditions is hardly surprising. I wonder if this happens in the UK too?

This is precisely it. We need to wake them up to the fact it could be them. So far the BPS narrative has encouraged the general population to consider us to be psychologically and emotionally weak at best and malingerers at worst. This has prevented the ordinary person from identifying with...

Patients know their individual stories, but doctors must surely be aware and feel some shame/embarrassment/stupidity when they've brushed patients off repeatedly only to eventually find there was a real problem after all. To discover that their own attitude has caused needless pain, suffering...

Ah. OK. I was diagnosed as moderate and then deteriorated to severe so I don't know what mild might be like and didn't want to assume.

The snag is the limit isn't fixed. My being in a good phase, bad phase or in between dictates the limit. Even the same, simple task on different days takes different amounts of energy. Much more of lower available energy levels on a bad day or in a worse phase. It isn't static. Maybe this...

For me it depends on the phase I'm in: Going downhill exercise of any sort, including gentle stretching will make me feel much worse. In a bad patch, I can't even do stretches. My body doesn't like it and I will feel like I've been poisoned even if I just try to do a little. Trying just...

My interpretation was that, as psychs are supposedly the end of the line in diagnosis,they have no one else to dump patients the patients they can't help onto. If that is the correct interpretation of what was meant, it's hard to know where to start putting them straight. :confused:

She's definitely crossed over from a parallel universe.....

Although they say this, I believe they used a modified version of the London criteria. My understanding is that Ellen Goudsmit was one of the authors of the London criteria and was rather annoyed they refer to it as the London criteria when is is not precisely that. More slipperiness.

I get both joint and muscle pain. That can be confusing, especially in the muscles around a joint. Joint pain seems to affect all the joints in my limbs. It seems to be easily triggered by repetitive motion, so fingers and wrists are particularly vulnerable to it. I don't get any redness or...

They've pulled this before - was it White who said they weren't studying ME? Maybe someone should now ask him what, in his opinion, the difference between ME and CFS is?