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If they weren't rattled they wouldn't be engaging. This is a far cry from when we were told 'science is self correcting. Do a bigger trial and prove us wrong'. The very fact they feel the need to defend themselves by minimising the impact PACE has had indicates they do not feel as nearly as...

I had some very positive feedback from healthies who'd viewed it on my FB page. The choice of images and quotes was described as 'so very powerful' more than once. The parent of a son who 'recovered' from ME with the 'help' of Lightning Therapy 15+ years ago was very moved by the song, she...

I don't entirely disagree with you @Jonathan Edwards, but I'd imagine paediatricians must be quite used to parents being very emotional when it comes to their sick children, whatever the ailment. I'd assume parents who are logical and unemotional when their children are very unwell are probably...

This thread has also made me think about how advocacy mustn't only be for the cleverest of us, especially when one considers that ME affects people cognitively. Hearts and minds need winning over, if a logical argument could win this battle we'd have won years ago, maybe more emotion is what's...

This is a problem I've had, anything longer than half a side of A4 isn't welcome. GPs really don't appear to have time to read anything detailed unless it affects a significant number of their patients.

@Dx Revision Watch as I worked with children with special needs in mainstream settings and as the daughter of a retired senior social worker I understand how the system works and wouldn't send the letter myself, but I defend the right of others to do so. It concerns me that pwME and those...

I think the authors have done very well to hold back the absolute fire and fury they must want to unleash on those who are complicit in harming their vulnerable children. Let's not judge, we aren't walking in their shoes. We don't know how hard they're having to fight or the extent of the...

I went to a Perrin sales pitch with Perrin himself when I'd been ill for about a year. He thinks severe patients who 'lie on the floor in front of you' are attention seeking or hamming it up and if you don't take 8 Veg Epa pills a day then you 'don't want to get better'. I have fairly strong...

He's getting very defensive Which can only be a good sign.

Wow, passive aggressive tweeting at @Lucibee now

Yes please, personal recs, good and bad will be really useful. I think an avoid list is just as important as a good list. She's only just managing to carry on teaching part time at the moment and a referral to the wrong place at this stage could mean the difference between her continuing to live...

My adult daughter has worsened recently and needs help, especially with orthostatic intolerance which is affecting her ability to work and increasing her anxiety. To date the only help she has had has been psychologically orientated, she's engaged with it fully and her latest NHS therapist...

I'm starting ranitidine today, will keep you posted!

It depends entirely who I'm talking to, where, for how long, what time of day and what about. A conversation where I'm having to recall and process information will have me floored within 5 minutes. A conversation with a 'difficult' character where I'm having to watch my words and second guess...

Bump! And a reminder that the performance will be livestreamed here at 3pm: https://www.facebook.com/intunechoircornwall/ for anyone who wants to join in and sing along (or just laugh at me blubbering like a Gwyneth Paltrow at the Oscars)! Set list includes Bridge Over Troubled Water...

While it isn't the 'PwME were right all along' article rubbishing PACE we'd hope to see from the Guardian, there are several leaps in the right direction. The balance is in our favour; Chalder only gets a short quote while Dr Weir gets quite lengthy quotes. Unrest and Wilshire get mentioned and...

Hehe, thank you. And there was me thinking the blue lippy makes me look like I have a heart condition!

We've organised a livestream - I've added the link to the original post at the top of the page. Please share and please click 'going' if you are interested in watching the streaming- thank you :) We've had a great sign up from choir members for this event, just under 60 members, I get all teary...

That's happening this week, the event will be shared on websites and Facebook.

@Amw66 I think we will be able to livestream to Facebook and link it to here, but haven't got it organised yet so I don't want to make any promises, just in case.