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Is there some reason that this isn't as appalling as it seems to be to me?

I do wish they would give us more than 5days notice, 2 of which are weekend days. I know that rooms for such meetings cant always be booked a long time in advance, but somebody must have known before today that a reformof the APPG was on the cards? If they'd let us know earlier I could have had...

:sick:

Yes that was my initial understanding of 'genetic' … I wouldn't know that it meant anything else unless I was an active member here. So i'd say that was a very important point. Perhaps it could be added to the FAQ? @Andy ?

Indeed. & what would help our case even more is a comparison with otherwise healthy but significantly deconditioned individuals (assuming there was a difference of course!)

Don't know whether this has been picked up on but someone on MEAfb said they cant provide saliva for DNA (tried & failed) because of dry mouth. I know that's a side effect of many medications & a symptom of sjorgens too.... So some of those who might want to participate (& qualify) may not be...

Me too, I cant bear doing those symptom diaries! I don't have a smart phone because I cant use it to send texts the lack of keys makes it impossible, & it really irritates me that everyone on the planet is assumed to use one. But am happy to download an app onto my windows laptop if...

Precisely! :banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead:

:) I love that idea ETA Although maybe not. it could too easily be twisted?... (look away now if you easily upset by nasty comments about sufferers) quite a few deriders love to use the fact that M.E. spells 'me', to suggest we are selfish/lazy etc... "it's the ME(me) syndrome", "It's all...

@Andy apologies if this has been already pointed out but the FAQs have a typo shouldn't that be either 'previously proved helpful in identifying', or 'previously provided helpful information (or some other word) in' A big thank you for everyone's hard work on the study & on the site too.

Sorry I haven't the energy to quote everyone, but just wanted to say that although I can see the point of wanting to subtype.... I agree with all the arguments against having any additional questionnaires included. At this point it should be only what is necessary for the GWAS.

The most effective anti stigma campaign would be for them to stop describing people in this way, well for them to stop describing people full stop. If those who are creating the stigma packed up & went home it would eventually fade away. The perversity of people whose views create the stigma in...

I'm always amazed that they seem to think that changing perspective on symptoms can allow a 'valued life' - ie continuing on with a normally functioning life - they must be completely ignorant of what the symptoms actually ARE... As if if that were possible we wouldnt all already be doing it...

:laugh::laugh::laugh:

oh no I'm so sorry to hear that! If you ever pick this up @Gary Burgess I hope it all goes well & you make a full recovery.

I've never had cellulitis @Barry but yes i'd say that was very like it indeed. That wondering of 'am I going to make it to the bathroom' is very familiar.... Now imagine some dick of a Dr suggested that that 'wondering', was itself what made you feel weak. Errr no Dr it's the sensation of...

I think I can speak for us all & say Happy Christmas & New Year to you too @Chris Ponting :) thanks for all your hard work on this

(took the liberty of correcting assumed typo :) ) yes lol, i'm covered in bruises because of that phenomena. And it's always a surprise, I never expect it even after nearly 2 decades. I'd love to know what the BPS assumed mechanism for that is. I can't see how deconditioning can cause it...

yes... I find that one of the weirdest things - it makes me wonder what on earth the mechanism could be that makes me unable to control my limbs/walk properly after thinking/talking too much. It's not just weakness but proprioception & all coordination goes completely haywire.

As was discussed by a bunch of us on the other thread about the study - i'm sorry I cant find it now perhaps someone else can? - I think the best way is to try to get Chris Ponting + Sarah Jarvis + a patient on TV - ie The One Show, This Morning etc I'm sure that would reach masses of people...