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Thanks @Cheesus So i in the 'to' box on my email I just put atthedomainname.org i dont have a to put anything before the at symbol then? Sorry to derail the thread, but i think it'd be good to keep saying thank you - you never know when they might want to give some more away in the future :)

Very, VERY good. Cogent, professional submission. Huge thanks to all who put this together. Lets hope the NIH/CDC listen & act accordingly. To my mind this is critical if they are not to waste further money, time & more yrs of our lives on research which studies a bunch of people who're 'tired'...

thanks Joh & @Binkie4 ETA The pineapple fund website says you can "email contact at this domain" but gives no actual address ??? i dont know what that means am i being dense?

What wonderful wonderful news :) how does one go about saying thank you to them? does anyone know? I'm not on twitter or reddit.

thank you so much for that laugh @Jonathan Edwards & @Valentijn . I was just feeling so demoralised & infuriated, feeling that this tide of bullshit will never end, i needed that giggle so much :laugh: Dont forget, that PACE was "a great great trial"

Indeed.

You can read more about how this will unfold here. - they wont be reassessing anyone just trawling through the paperwork to see if anyone should have got points where they were denied on that one specific descriptor...

My brain is mush so i wont comment on the details of whats being said here but will say that i've agreed with all the comments so far. The CFQ is a joke. It's a pity its consequences are far from funny. Well done everyone for all your comments & submission, much appreciated :thumbup:

I cant bring myself to click the 'like' button to either of the first 2 posts on this thread, but I am glad there is a thread on this. I didn't know Richard Horton did that.

Oh God :( :facepalm: :( :banghead: I thought Norway was one of the 'good' ones, after their government apologised. So demoralising.

Yes sorry @Inara i realise i should have said "not that there is merely/only an abnormal amount or severity of pain/fatigue.... etc" will edit that.

Yes that is exactly how it is for me. Attempting to continue to exert at this point (trying to stand/crawl etc) causes vomitting, but if i can lie still on my left side for an hour or so in dark, warm, silence, I can recover enough to start moving about a little bit & talking again (if very slow...

Exactly, exactly exactly. For example, No disrespect to the MEA AT ALL, but i always hated the way they describe one of our symptoms as 'exercise induced muscle fatigue', i mean surely everyone has that? everyone's muscles feel tired after exercise - it just depends how much exercise - & that...

@Esther12 @Londinium @Trish you have articulated my own thoughts & feelings perfectly Unfortunately I fear Dr Myhill & her colleagues here will be held up as "see how these idiot quacks fire-up & encourage the anti-science brigade? this is why the patients are crazy, these are the doctors that...

What an abhorrent, repugnant & reprehensible display of the arrogant cruelty that we know so well.

indeed :)

Yeah it will be :eek::(:(:( They have previously not pressured people who are in the Support Group of Employment support allowance - these are those the gov't deem unable to do any kind of work related activity due to illness/disability. But the plans referred to in the article are ones to...

So good that this is being done. Many thanks to all concerned

Awful. But replacing psychoanalysis with ABA can in many ways be just as bad. In this article ABA sounds lovely, but one of it's aims can be to stop autistic children 'stimming' (- coping mechanism for what they find overwhelming), & train them out of their differences so they can basically 'fit...

Oh i probably wrong then, i suspicious of everyone since Crawley was disingenuous about the MEA on the radio recently trying to make out they didnt want research into paediatric ME when she knows perfectly well it was SMILE they didnt want.... it's all just so underhand & sly, & it feels like CS...