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no me neither but when I look at that definition am I wrong in seeing depression as the underlying agenda (apart from the oxygen supply/demand point)

and can now be followed up with further PQs pressing the inadequacy of the situation

agreed @Trish given there are already a few petitions out that talk about GET/CBT Im not convinced yet another one is an effective advocacy tool. And anything long and rambling is ineffective in getting messages out and actually can be counterproductive due to lack of clarity. I doubt the...

it has been posted onto MEaction facebook page but I dont think thats the same thing as it being shared by MEAction

i know it says it isnt a guideline but for information - but I hope NICE folks are all taking note and the information is being taken on board by them I think it is a pretty good overview and would be comfortable sharing this with anyone I need to educate about ME (even though I'm in the UK)

unsatisfactory but hopefully has caused a bit of a kerfuffle for the MHRA and DoH officials concerned and highlighted that the current situation is not acceptable

we need to do a @Webdog on this and on the Patient.co.uk page it links to it does mention issues have been raised about CBT/GET but in a skimming over kind of way - no mention of PEM, fatiguability as far as I can see maybe a good project for the autumn

I had to switch from having Radio 4/World Service on low in the background all night to Classic FM as the talking was keeping me awake but I only have the smooth classics programme going on catch up as it gets more up beat after that and that would keep me awake or wake me up I have tried a...

I know MEA have asked questions about it on website to get some info on peoples experience of it would be good if they could do something to back up its use with acceptable evidence. I feel uncomfortable taking it without it being on my medical record or any proper discussion with GP about it...

Kings BPS Mafia strike again

yes I had it from the largest one which Im surprised to find is actually a non profit because it seemed very corporate to me and didnt have charity ethos https://www.insighthealthcare.org/about-us/ unfortunately a lot of education and health businesses appear to benefit from charitable status...

Norman Lamb is a former Health Minister in the coalition govt and he has signed up to Dr Myhill's MAIMES campaign, alongside Vince Cable his party leader http://www.drmyhill.co.uk/wiki/Medical_Abuse_In_ME_Sufferers_(MAIMES#MAIMES_Update_2_July_2018_-_32_MPs_signed_up_and_158_MPs_adopted.21 so...

the CBT for over 65s project Sharpe is doing to keep them out of hospital might as well be called CBT for Alzheimers its only a couple of steps from that to LP isnt it. And thats how it all happens - incrementally - CBT ifying of everything is opening the door to potential LP ifying of everything

maybe it seems to them like a big gesture as even what to us is a weasel worded nothing statement means they are having to admit publicly in writing that there is an issue

i actually think exertion intolerance is a good description as it isnt just exercise intolerance it is doing anything that requires too much energy intolerance so I think it has to be exertion however I can see why some folk arent too keen particularly when I looked at the definition - adjacent...

If I was on the new NICE guidelines committee I would be asking for cost effectiveness issues to be addressed before I would consider including CBT/GET in scope

is there any value while most of the focus is on the key stuff while we are waiting for biomarkers in spending a bit of money doing some tests to show what works best in practice to help people with symptoms, sleep - eg Amitryptyline vs Melatonin vs anything else thats currently being used - eg...

yes these treatment packages are "products" just as much as a course of antibiotics and should indeed be subject to monitoring in the same way.

yes exactly this is why I get my melatonin via a friend over the counter from Walgreens in US as the GP said it could only be prescribed by a specialist and there isnt one in my area :banghead:

hi @chicaguapa wondering what makes you say PEM comes on more quickly because she's younger - not heard of that before - but then I've only been learning about ME for a couple of years and know virtually nothing about how it affects children.