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oh amen to that!! If anyone ever sees me doing it for goodness sake, please clobber me! Sooo glad we have you, and others repeatedly pointing it out Jonathan, its easy to fall into that trap if one isnt careful. I think thats spot on. FWIW, for me (with a non identified 'initial' virus), it...

Yes, i know people dont like malaise & i agree to a point because of the connotations with swooning victorian ladies. But the problem with 'fatigue' for me is that almost everybody thinks they know what it feels like. And as you say feeling grim isnt like being exhuasted after too much...

thanks all i read it now. indeed

Many many stories on that page, i dont see the relevant one? I'm not good at sifting/finding key bit from a lot of info, i cant see it?

Total misunderstanding of what CFS is. It's not 'starved and exhausted' thats the whole point. If it were we culd simply improve our diet and rest, & the problem would disappear. Idiotic.

No and neither does an severe ME sufferer, the comparison you're making with your own experience, is an accurate comparison to my own experience. But the words you used initially were about 'wanting' to get on the bike - thats what i was responding to. I was saying that as a person with ME what...

But if you had some degree of flu every day for 20yrs, and it had decimated your life and getting on that bike might give you a chance to get your life back, to regain all the things you had lost. To have a 'life' again. You would give it a damn good go, because while you might not 'want' to get...

This is what happens when you think one thing behind closed doors & say another thing publicly. They act & apologise as if its the advert that's the problem, as if the advert was some kind of anomaly, rather than an illustration of the usually unseen. I'm not a particular fan of quoting...

How. Patronising. Stop telling people what i believe. And what my voice and body language are. You never met me! And you're Wrong.

i worry a lot

great response, many thanks to all

Im a bit confused. So this is a book by fiona fox, has anyone read it does she talk about ME/CFS,? Are the quotes about Crawley's harrassment complaints from the book itself or are they an example of how dreadful the SMC is (in contrast to Ernzt saying it's marvellous)?

really? i wonder what that is?

I can relate to all you say Mithriel, that is a good description. Thats again why i hate the 'fatigue' word. But i dont want to get my on my soap box about that haha!

Yes i remember that House episode.... I only came to House in season 2 (there was no streaming/catch-up back then). And so it was only later when i was a fan, that i came across the CFS episode. I was gutted & watched no further series in protest. I'm amazed but grateful that Greys hasnt done...

I've shared elsewhere on the forum how anxiety/anger and the resultant significant improvement in all symptoms (assumed to be from adrenaline release) can fool me into thinking i better than i am - and therefore sometimes wrongly believe that the bout of PEM is over leading to further activity...

my bolding yes ... there is a delay of 24-36 hrs before between the over exertion and PEM starting. But day 1 of PEM is never the worst, day 2 is worse, day 3 is hell but it usually reaches its zenith on day 3 for me, then the number of very bad days before recovery begins depends on quality...

So... am i interpretting this correctly.... it's something that is 'promising' but needs to be replicated with bigger numbers before getting excited. And DecodeME should be able to find it if it's there to be found?

I looked at that & i agree it could be helpful. But this.... (from the presentation) my bolding. this is at the heart of the problem with psychiatrists involvement with ME/CFS in the first place. They dont understand the circumtances, or have any kind of handle on them, usually, or believe they...

It makes me cringe when people all over the place make these claims for ME that are not substantiated, no matter how nice they might sound and how desperate we are to be taken seriously. The fact that DwME are doing it is just unbelievably unhelpful, despite my having huge respect for some of...