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I feel for the "dogged" unpaid grad student from Turkey "who never said 'no'"

Don't go forgetting that Andrew Lansley was also Secretary of State for Health, before Hunt. I never will.

This.

So I wonder which 3 papers he is refering to here: 2 day CPET paper? And?

Pity the letter to the Times wasn't published

Is it worth collecting useful documents in a separate MUS documentation thread? I think it would be useful for anyone who needs to to be able to find things like the Goadsby letter easily in the future. edit to add: Actually, no question. It would be useful.

It's PEM related for me. Sleep is always one of the first things to go haywire. PEM often results in no sleep at all. Otherwise I sleep 9 or 10 hours, but I'm artificially woken in the mornings by my husband's routine. (I'm ok with that - cup of coffee together in the morning is quality time...

I think we all know why.

I was thinking this. For over a week now I've been thinking about a public bed protest. Nothing concrete, just that beds take up a lot more public space. Better still if they block traffic slow convoy style. It's also how I can see myself actually managing to be at a demonstration with minimum...

I don't know - she was replying to my letter before last! Will draw it to her attention but I don't want to spam her.

Quick update. Really pleased to find an email of support from my MP today - amongst other things said if GET and CBT stay in the guidelines she will fight it.

Take heart - this radio programme, (it's content, a few things aside, and that it happened at all) was good news. I'm only sorry it happened because Gary Burgess ended up in the same boat as us. Newton's trying to do decent biomedical research in a difficult climate. It is a pity she didn't...

However, she didn't need to make that comment at all. There were other things she could have made more useful comment about

I can see a difficulty in that Ms Lucas withdrawng support from this group could be percieved as a withdrawing support from pwme. This might be an issue for Lucas and she may see it that way herself

I think it's possible NICE, or the committee, will try it on. But I agree with the comments that we are in stronger position for the reasons mentioned. I hope it's strong enough, I'm guardedly optimistic. I think it's also possible that we might see an improvement in the guidelines but that the...

Over a hundred signatures in less than 5 minutes! If that could be translated ot people on the streets of London protesting that would really scare the government! It's now 123,200 eta I find the thought of scaring Jeremy Hunt in that way very appealing.

Perhaps I was unclear, apologies if I was. My meaning was simply that they successfully took over and occupied the science debate (and policy making too of course) so they need to be challenged on that front too. edit for clarity

My own expectations of Jeremy Hunt are just about zero. It's probably still good to keep raising ME however we can. So it looks as though the Bill was presented twice and lapsed twice.

It's good to have such stalwarts who put the work in even if it's duplicated :laugh: (Well done to both @Andy and @Barry) Unfortunately Jimmy Hood died in December last year so we can't ask him about it https://en.wikipedia.org/wiki/Jimmy_Hood edit - added capital letter to name

People on the make and their dog are on it... I don't think we should be surprised; shocked maybe, but not surprised.