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after following the link above, the link there to the participant info sheet is non existent so it cant be read before taking part

Yeah. I can understand why the active thinking bit goes slow & stops working but I cant understand why in PEM there is no longer any 'automatic function' either - I can't even do the things that at my best require no active thought. And although I've had many other illnesses I never experienced...

@rvallee that was a fascinating video! thks for sharing. What I find so interesting about it is that as it presents "Gun" - the part of us that does all the automatic stuff we don't have to think about because we've done it so many times & it's become automatic... & "Drew" the part of us...

This is a particular bug bear of mine. They never (or at least I've not seen) compare with an established organic disease. I suppose they cant can they, because they might start getting results where we looked more like those with organic disease than those with depression.

Well spotted @Simbindi I haven't the heart to read those 3 articles, but I agree its very disturbing that this is what they're being taught. :laugh::laugh::laugh:oh that did make me laugh I really needed that this morning. thank you:D

They will always get it badly wrong, any of it, all of it, on any aspect of the ME/CFS subject, while ever they get input from the 'experts' - ie BPS taught therapists from any of the clinics... especially the ones geographically or otherwise closely linked with the key BPSers. The fundamental...

I find 'sensitive' formulations some of the worst, especially in skincare.

sorry not sure what you mean...? switch to what? The 'Air' spray is to naturally disinfect the air without chemicals. I use it after the Asda delivery men bring my shopping into the kitchen to help me unpack - they are often coughing & snivelling - because I cant get any through-flow of fresh...

I recently been using these products. I don't know if the claims about bacteria/virus killing are true but they certainly don't upset me like usual cleaning products do as there is no odour & they work to clean stuff. https://www.dewproducts.co.uk/products

I started writing a long post but then I realised I needn't waste my energy because everyone else has articulated it all so well. I agree with every word on this thread so far. Precisely.

Well I wouldn't have thought so no, but then i'm not any kind of scientist so perhaps I am wrong.

It Is management speak... I was taught it in management training 25yrs ago. Since achieveable and realistic are the same thing... it's just another example of the love of idiotic acronyms

If you follow the link @ladycatlover & click on one of the 'support' buttons, it will come up as 'you have already taken this survey if you signed up already :) …. lol I know this because I couldn't work out if i'd done it either. so you don't have to search for it...

@Andy How long do you expect them to take to decide whether to fund the study or not? Is it unpredictable or is there a rough estimate for how long such decisions usually take

I can't overstate my gratitude for all the work you & your team have done on this @Dx Revision Watch This is me, sending you a huge bunch of flowers & large box of posh chocolates. :emoji_bouquet: All PwME around the world are profoundly indebted to you for this. Thank you

Ean Proctor in his own words... The video was made in the early 90s (it says that Virginia Bottomly was health minister I think that was early 90's?) so the picture quality isn't great. There is a neurologist talking shite at the beginning. Ean's bit comes a little later. It doesn't say...

crikey. I hope the questionnaire is better than that! - it sounds more like the Chalder Fatigue Scale, which is all 'more than usual/less than usual etc', which is why it's so utterly useless & easily to manipulate the results.

Happy to see them prioritising @Andy :) happy to be patient. please confer gratitude & encouragement to them

Agreed. What would be truly terrible is if we were unable to recruit sufficient numbers for this study because of privacy concerns introduced due to enthusiasm for the possibility of other, as yet unknown, unspecified & unplanned studies. ISTM that the critical thing is to ensure we get enough...

I agree. I've been very positive about this study, but when it dawned on me that BPS people (mentioning no names but we know who we mean) might be able to get their hands on my saliva sample & contact details, it makes me feel like I don't want to participate OR recommend that anyone participate...