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absolutely, i would LOVE to try & see what happened if i was able to really pace properly & see if it helped, to try all kinds of things but as it is its just an attempt to survive & get through as best i can. Life circumstances over which i have no control, simply wont allow it.

@Three Chord Monty was your post supposed to show something on reddit?

lol understatement :eek: :D

(my bolding) Sooo true. Particularly when we have PwME whose energy envelope/budget allows them to feel well enough to enjoy going on a 5 mile hike, & dont have many symptoms until they push too far & end up in PEM. It not much good if they are the people whose experience is being extrapolated...

so happy for you @TigerLilea long may it continue good luck with your booster @Kitty

brilliant

Welcome indeed :) Hi Katie great to have you with us

Thats pretty good i reckon. Although is this a typo?... having ME to begin with results in marked reduction in activity compared to pre illness levels. Shouldnt it read that, PEM results in marked reduction in activity compared to pre-PEM levels? I mean one's 'baseline' can be housebound, but...

very, very good points

I am struggling now, so I cant find your comments about past/moving forward/baggage & your concerns about how contructive input on the toolkit might be here, in order to quote them, but i just wanted to say that I can well imagine that you may have come on here, seen a load of comments about Dr...

Edited to add: this & my next post took me 2 hrs to write lol so i now see some of my points have been better expressed already by Trish etc, but i havent the strength to go through & edit/requoite Ohhh! :rolleyes: :confused: I read the release differently. See my bolding in the following...

very happy to hear that, i was concerned about Dr Gladwell's input, your reassurances are welcome.

yes Hi Sarah, great to have your input discussing this project. I cant imagine how hard it must be to care for someone with ME while also having it yourself. Your efforts to improve things for PwME in the NHS are appreciated particularly if you are also ill. Good to have someone with ME on the...

or when you actually are depressed, dangerously so, but you darent tell your GP & ask for help, because if you do from then on all your Me/CFS symptoms (that you've had for 20 yrs) will be suddenly reframed as depression. in my opinion its accurate awareness of what ME/CFS actually is & what it...

I agree that every doctor shouldnt be able to dx ME/CFS, thats absurd & actually impossible anyway. But i wonder if perhaps what they want (certainly what I wish were the case), is for every Dr/health professional to be re-educated that its not imaginary/malingering/conversion disorder. So that...

really? the wording implies these 'gold standard' techniques are already known... they arent, at least not by Peter Gladwell, or anyone at Bristol from the reports i heard, or Bacme, although I'm willing to bet he & the rest of BACME believe they know exactly what they are.... and therein lies...

Our experiences are very different, opposite in fact. I have the mental energy to do things, but my body wont fulfil what is asked of it. My motivation writes checques my body cant cash.

IIRC it was during the war though

lol mine goes well over that by the time i have stood up & walked to the bathroom

indeed but when people tell you (as their doctor) that they experience a robot as having more empathy than you.... well that says it all doesnt it