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His subconscious mind must be quite different to other peoples. It's disappointing that your friend responded the way he did after the effort you put in, @Sunshine3 but let's hope he does help by contacting congress members.

Excellent show Gary, thank you.

Plenty of time to develop a secret S4ME handshake too Wish I was going, but at least there's the DVD and I hope some feedback from those attending

@arewenearlythereyet I understand. We'll just disagree on that aspect of intention. I don't like being associated with the video either. edit to add last sentence

Hi @arewenearlythereyet You are entitled to your view, and I really don't like the video clip myself and would prefer that it wasn't associated with something I signed, but I think you have made a stretch too far in your interpretation. You don't know that this video is intentionally a blatant...

I also don't know why there isn't more noise about the lack of funding in the UK. We just seem to be dancing to the tune of others all the time instead of setting the agenda.

I haven't got the energy to even think about this. I hope Francis Collins has and that his thinking results in much better funding for ME research.

The trial didn't go wrong, politically speaking, for some.

Page about the 71st Health Assembly on the WHO website for general background: http://www.who.int/world-health-assembly/seventy-first

Yes, it does, but I don't know the %content in apple cider vinegar. It's also in other fruits than apples and tastes sour.

Good points @Squeezy My take away is that it could be useful for some, but it's far to early for me to want my daughter trying it. In a decade the knowledge of the risks will be clearer.

My brain has just blown a gasket reading the poll, and I can't to do it. Does this mean that talking to people face to face is less draining than doing the poll? o_O I'll take this as a sign I need a rest

In the UK complaints go to the General Medical Council (GMC). Currently, there is a complaint led by Dr Sarah Myhill to the GMC with supporting complaints from patients about the PACE trial investigators and harms from GET. Parents of children with ME are less likely to complain because there's...

I take it all back ( well, some of it) because my MP has now signed - I'll email to thank her this weekend.

And there we have it. All that money spent on poorly evidenced treatment clinics without due care for their responsibility to patients and the tax payer.

Ditto. Getting a reply from my GP feels like finding a hen's tooth. No signature on this EDM, even though she expressed support the one time she did reply, and said she knows people personally who are affected. I'm beginning to think she's understaffed or just not very good at it or something...

Thanks @Andy for the summary. I hope this initiative helps people with ME, but I'm also not impressed at the lack of transparency. I wonder too where the accountability to patients lies.

I've got a feeling we've previously discussed what is a better word elsewhere on the forum and 'activity' came up as a better word. The problem with 'exertion' and 'exercise' is that they suggests things that take a lot of energy like running, or digging when much more minimal activity causes...

Sounds really good @Liv aka Mrs Sowester please pass on a thank you to all the women in the choir for doing this for us (I'm not on facebook)

Now contrast the ME/CFS biobank facebook post with the Esther Crawley and BACME online efforts for ME Awareness day...