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This is not very coherent. Am still not expressing myself clearly after anaesthesia but I wanted to comment below. Have scanned David's article and I am even more concerned that MEA continues its link with Esther Crawley via CMRC. Have commented on MEA fb page on this if anyone cares to 'like'...

From a reading of the letter, I think there were considerable time constraints in play e.g. he began by saying he hoped it reached them in time to be considered and there was a mention of Dec 7th. This may have meant it went off in a rush.

Heartbreaking with not an ounce of self pity. I know I used the same word as you @Trish. It just fits best.

http://occupyme.net/2017/11/25/for-serious/#comments I came across Nancy Blake again when she responded to Jenny Spotila's blog last week. She's obviously still very involved in the ME scene, but apart from the book with Leslie Simpson, I haven't come across her. In her discussion she posts...

@arewenearlythereyet I don't think so. Part of his argument was something to the effect that after red blood cells had been ' fixed' for a while, they assumed certain properties which they didn't have if they were analysed immediately on drawing the blood, i.e. we were misled in concluding the...

Am writing from memory but I did once have a copy of a book written by Nancy Blake and Dr Leslie Simpson. It was the same Nancy Blake. I remember her CV. His contribution was about the properties of red blood cells in pwme: he theorised something to the effect that blood cells differed in...

@Forestvon Well done! I think the ME community is going to have to act individually as well as as a group and it will enhance our effect. It's harder to push away an individual well argued communication with rubbish about group harassment. I think we should all be looking for opportunities to...

@large donner It might also be worth pointing out that Bristol uni staff i.e. Crawley ( I am presuming that teaching is one of her responsibilities) are presumably teaching students course content that is not supported by the revised scientific evidence available. I can't imagine either that...

Do we have any Bristol alumni here? I read last week that Russell group universities including Bristol are investigating the wealth of their alumni with a view to tapping them for a donation. Follow the money. Surely we/ ME community has an alumnus from Bristol. A complaint from potential...

Hi - thanks for starting this thread @Sallycatherineharris I find it hard to describe how the news affected me. It was surprising and actually shocking. I have not been one to seek the elusive holy grail. For 9 years I did supplements etc with some degree of acceptance of the illness and...

http://cureme.lshtm.ac.uk/the-uk-mecfs-biobank/ Research nurse ( names has disappeared-ugh) recommended following progress on website. There is a place to put your email address on link above for info updates.

Confirmation received this morning from the research nurse that I am not suitable to provide samples for biobank. It was as I expected. I had also asked whether samples could be collected at home because that hadn't been fully stated. They can, funded by the NIH grant. This is great because...

Had a very prompt reply from the research nurse at the biobank requesting information giving criteria I can't comply with. 1) need to be younger than 58 (18-58) 2) must not be on steroids or antivirals ( affecting immune system) 3) address must be given. I might fit there since I am in London 4)...

I think Invest in ME is currently doing a doubling of donations for a short time. @Jo Best

Thanks Andy. Have contacted them.

@Andy Is there an email address for the biobank?

Have answered primary progressive but have been diagnosed with a heart issue needing surgery so this may be making a significant contribution. EDIT: there could be a link between ME and the heart condition via RCCX theory but please don't ask me to explain that. Sharon Meglathery writes about them.

@Graham I meant on the forum because I don't live in Sussex. We came quite a way to see the film. For some reason I wanted to be part of a group at a screening. Thank you for organising the event. Must have taken a lot of energy. We so wished to stay longer for the Q and A- if you have the...

@Graham @MEMarge It was good to meet you this afternoon in Crowborough. I recognised Graham immediately, and MeMarge almost as quickly. I was sorry not to have a chance to speak to you afterwards: would have liked to stay for the Q and A, and tea and cakes, but I was crashed. It was a fair...

Thank you @ChrisH It's been helpful to hear from someone who has gone through the experience. Good wishes.