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I applaud & welcome the fact someone has gone to the bother of doing the seminar. 40 minutes about what has changed and how. It also highlights how labyrinthine the system is. 40 minutes - not on explaining the benefit, how to in the form and what additional info you'll need with advice on...

I was originally diagnosed with ME in the late 90s. My consultant told me that he would use the combination ME & CFS - I'd have to dig through paperwork to see if it was ME/CFS or CFS/ME. He told me this was because some in the medical profession didn't acknowledge ME and only used CFS...

Hmmm.....I don't think that just because drugs might be safe individually it necessarily follows that they'll be safe in combination unless they are very confident in their knowledge of both individual drugs. I suppose if they're existing & well known drugs they might have reason to be. I...

It's like watching a car crash in slow motion, while you stand there helpless..... My heart goes out to these guys. It's far too soon to think they'll end up one of the millions missing but I reading tgeir posts brings back unwelcome memories for sure. I'm staggered (& you really would think...

From the blog :laugh:. Value for money for my donation to the crowdfunding right there.

Isn't this burnout an area of special interest for Gerada anyway? I seem to recall something a couple of years ago where she was going on about GP burnout and how those pesky patients are causing significant stress and burnout in the medical profession.

It changed for me over time. When first ill I would suffer PEM immediately - extreme shakes, weakness, dizziness, needing to lie down asap, and so on. As I deteriorated from moderate to severe & I am not capable of overexertion to the same degree the delay of up to 3 days became clearer. I...

I see what you mean @Barry and while I don't deny that many ME patients do feel that "fatigue" is a component of the condition, it the THE component that has had the most focus over the last few decades and is one of the driving forces behind "lumping" conditions together and the development of...

You just beat me to it @lunarainbows! Their Director of Research Dr Megan Arroll is a Chartered Psychologist (CPsychol) From bps.org.uk I just don't have the capacity to do anything much about it at the moment.

If vulnerable and desperate ME patients are involved then I think it's worth bringing it to the attention of both @Action for M.E. & the MEA (@Russell Fleming). The individuals involved may not have been overtly coerced, but may have felt obliged to agree. In the same way therapists' clients...

Absolutely - my list wasn't meant to be exhaustive by any means. If we're going to link illnesses in any way then it would be more beneficial to tease out the differences rather than just assume they're all alike. Maybe the differences in the details might tell us something, because treating...

When I worked alongside salespeople there was a technique called FUD. I utterly loathed working with anyone who in any way endorsed it. Fear Uncertainty and Dismay. Scare people into thing there's this tide of demand about to sweep in. No one knows how bad it will possibly be, but you need...

Might as well have just said "tired and a bit sore" and been done. Awful. This is a huge step back.

Bolding mine. I was diagnosed with Hashimoto's many years before developing ME. As a sufferer of both I don't believe the two feel the same, to me at any rate. I think this is where the experienced patient counts - my own personal view. In the beginning I fought against ME and waged constant...

Yep. I think many of us, when we first became ill did exactly that. I know I did. Everything else went out the window as I tried to cling on to the ability to work. One of the things the coronavirus pandemic has demonstrated is that life without going to work, the uncertainty of when normal...

Good old Countess of Mar. Big loss to us but she deserves to put her feet up. There were times when it felt like she was one of the very few people who kept me going. I wish her the best of health to enjoy a long & happy retirement.

:thumbup: Thanks for the reminder - I knew there was something I planned to do, I just couldn't quite remember :rolleyes: Edit - done!

WTF?? Not only is this ignoring that if PACE proved anything it was that this doesn't work. Charities who carried out patient surveys - the only real long term follow up & the only attempt to capture harms - discovered that not only do these therapies not work, they harm. Then, as...

Oh. That's where that came from. Interesting to know.

Even if there is no response, there's no longer any deniability either. There's a nice public record of them being told quite clearly that their claims are misleading and why. If people are harmed by this in future, even if by having their correct diagnosis delayed, then the company may well...