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Disgraceful this concerted campaign of abuse of pwme continues. Just had a heartbreaking email from a severely affected pwme, ill since teens in early 80s, isolated with no friends, living alone on benefits after parents died, disbelieving family and neighbours, unhelpful struggling care...

Was it the NY Times too - thought it was the NY Post.

They are not told of the grave risk of harm so dont know they need to opt out, so can innocently agree.

The non existent specialists who wouldnt do home visits if they existed :-(

Annabel Senior

LOL thanks. That's great you did too - if we all do a bit, every little helps :-)

Good time to raise awareness at Christmas with visitors on the move now as you never know how many it might reach. Download and print ME awareness leaflet (large print, bold, boxes so easy to read) #MEawarenessand comic strip showing effects of PEM from Www.mechat.co.uk/db/tips.htm A...

I wrote separately from the template but got the same reply.

I am blocked too - didnt know and dont recall tweeting to her but clicked the link to see her other tweets and just found I was blocked.

Not a problem drawing blood but I always crash afterwards, drained in both senses. Fits with the theory of low blood volume.

LOL certainly hope not as I am an alumna of QMUL - wrote and told the principal or vice - forget which - how I was now ashamed to admit it.

Dr Anne Macintyre, respected ME doc and M.e sufferer. Published it in the 90s when I was first ill, new edition 2009, but googled and said she was still ill 2011.

Sorry such a lot to read. I was trying to work out how many on the committee so far have actual experience of seeing housebound severe and very severe ME patients who need home visits or at very best stretcher ambulance. Edited last sentence to make clearer as no good if they only see them at...

So sad to see Brynmor John's name and to think despite his death, nothing happened :-(

I didnt think the question bizarre as assumed he was just being helpful to make David aware of a useful court case in case he didnt know about it.

Be careful about standing too long in a queue as well - I used to take a light folding garden chair when first ill but have to do everything online now.

Couldnt agree more, Simon, in fact just tweeted reply to someone that things have looked up more in last 2 yrs both research and MPs' interest than in preceding decades so hopefully the more recently wont suffer as long as old-timers. As you say we just need governments to put in big money and...

Wonder if the missing amount was the estimated cost of the cbt therapists who administered it, if paid separately by their regions. Dont know how the funding would work.

There are collected tips on coping with Christmas here. Shopping page links not updated as people use google so much now. Start in Sept though January a good time to get cards, wrapping stuff etc - bit late for this year though! http://www.mechat.co.uk/db/tips.htm#Coping I have started my...

Deconditioning theory completely wrong in my case too, as in many cases, as I had had PVFS after a flu bug 3 times before for between 6-10 weeks and recovered to full fitness each time. So I just thought 'here we go again' and did exactly the same things as before but never recovered and here I...