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yes I know just what you mean Kitty Precisely Barry, that's why I cringe every time Dr Shepherd says it (brilliant as he is at so much for us) I wish that could be rephrased, I have mentioned it to them but it clearly wasn't taken up on, but that's another thread. @Samuel I never heard of the...

this

agreed. That's why the MEA's description of 'exercise induced muscle fatigue' in their 'what is ME?' information, is so unhelpful imo... because everyone on the planet has muscle fatigue after the common understanding of 'exercise'.... "yes dear, my leg muscles are knackered after I go for a...

such a good idea Trish It's a bummer. But perhaps we need to rephrase what we say so that instead of saying 'causes harm'.... I just considered a few alternatives but they all seem to have the same problem, because until we know what causes ME, we can't really say 'causes permanent worsening...

Thanks for that @Lisa108 I'm way too foggy to even read the whole paper, but I managed the Conclusions. But i still cant really make head or tale of what they're saying. Would be very appreciative if anyone could do a lay-language summary. I'm very interested in anything to do with...

Am hugely appreciative of all the hard work our representatives are doing. But i'm afraid i'm with @Esther12 - i'm not expecting much of an improvement, in fact despite all the efforts of those on our side, i'm still expecting them to pretty much rubber stamp the old recommendations but with...

The sci-hub link no longer works, after so long thats not surprising but I cant really tell what they're saying from the abstract, not sure how to search for the full paper anywhere & am too gormless to do so right now anyway, but i'sd be interested to know what they're saying about cortisol

Every morning without fail I have an amount approx the size of an almond of brown or yellow phlegm. I have to spend a few mins clearing it, it's been like that since about 5 yrs before becoming ill - so about 25 yrs. I then intermittently a few times through the day have the same but it's...

A huge well done thank you to Elizabeth for sharing her story. It's so very sad, and angering, to hear about what happened to her. Unfortunately this paragraph Is a little confused? It makes it sound as if the PACE trial was completed & the NHS clinics being set up after PACE was conducted...

they are so thick honestly. It's cumulative... the activity threshold for triggering PEM is CUMULATIVE. He did a lot more phsycially so could so a lot less cognitively, it could easily have been demonstrated in the opposite way. Many adolescents have spontaneous recovery or it could have been a...

Yes I sure it is. But I find that extremely irritating because these small signs can be clues. me too, & these started around the same time as the pee smelling intermittently stronger - when I was 'mild', & have continued over the yrs. I'm not menopausal & was only 30 when the 2 things started...

LOL neither do I! But when it smells strong you dont have to actively 'smell' it, it wafts up at you out of the bowl. Ugh sorry that's a bit TMI :sick: :speechless: :D Mind you i do have a very sensitive sense of smell, always have had since i was a kid. I could smell a bonfire with the windows...

Yes my pee absolutely stinks when I am bad. Not the same regular urine smell but stronger, but just i dont know, nasty & 'not right'. I do get very very thirsty when I'm bad & therefore pee a bit more but nothing changes that smell. I not noticed a colour change but I will observe. FWIW it was...

Yes I found that offensive too. With the implication that those that don't get better simply don't want to change. It's all in the patient they need to change and, of course, change only occurs when the person wants to change. Edited to add - not being sarcastic in the last sentence - people DO...

At the end of the survey, revealing all the flaws... they then contradict themselves by 67% of them saying the think they are providing good care!

Ooo, that's a great idea! @Gary Burgess would you be interested? If you were well enough of course.

Precisely. When I saw a relative a few yrs ago (for the first time in about 20 yrs - so not since before I was ill) & circmstances required me to reveal I had ME. Regardless of what I told her she treated me as if she wasn't sure whether I was a fuss pot making a big deal out of feeling...

Yes something like The One Show or This Morning would be great for this I think. I don't watch either, but I have seen them a handful of times over the years, & this is just the sort of story that would go down well, especially if they got the doctor that they like - that lady who set up...

That's very interesting thank you for pointing it out.

I'm actually pleasantly surprised by this. As you say @Trish it's not perfect, but for them it seems quite a step.... it doesn't pander to the BPSers nearly as much, in fact the comment about PACE is jolly critical in comparison with their historic stance. And respectful or her to go to the...