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I had one done in about 2008. It was done privately by an endocrinologist and I was on a hospital ward for several hours. I was fine while it was being done but several hours later, I felt pretty awful. Climbing the stairs at Vauxhall station to get home felt like climbing Everest. HR...

Brainstorming 1.Sending a petition to Boards of Trustees of Action for ME and the MEAssociation, asking them to disentangle their organisation from working in a way that supports EC who repeatedly and consistently harangues, demeans and lies about pwme As pwme we wish it to be known that EC...

Yes, @Jonathan Edwards. Thank you for your contribution to the Buzzfeed article, and the other statements you have made in support of pwme. They are always very welcome, and I should have recognised them. I do remember one that was something to the effect that you are retired whereas other...

Many years ago in the 60s, I read a book called " the power elite" by C Wright Mills. The title describes what seems to be going on here. It is still available second hand on Amazon so I think I'll have to buy it and look for the parallels. Not sure that it covers how to challenge " the power...

Why do we have to rely on US researchers to challenge Esther Crawley? I know they do it very well but have we none of the home grown variety to do it? Or have the SMC and bio psychosocial school got all the power wrapped up? EDIT: the last question was a rhetorical one of course.

@Cinders66 I agree with most of this, but actually it is possible to refuse to give consent to too many consecutive tests, and I think an ME patient going into hospital should give careful thought to this prior to admission. A letter from your ME specialist, assuming you have one, explaining...

I watched " United 93", the story of the 4th highjacked plane on 9/11 that didn't reach its target. I have no idea of this film's appeal. Have watched it at least 5 times. Always a benefit these days because if concentration goes, it doesn't really matter. Part of it might be 'the story' of...

Have just ordered this. Out of stock at Amazon Prime but other sources available. Am very curious about these red blood cells and their different shapes. It seems to be being followed up now. What a shame it has been ignored for all this time. EDIT: the following added...

@TiredSam @rgn007 Also make sure pwme are not swept up into 8, they are prescribed B12 when recommended by Consultants, they are investigated for heart issues when they have heart symptoms and not left to deteriorate, nor told that ( many) people with ME are mad when visiting a cardiologist...

I was in hospital electively the week before last. I was very worried that I was not well enough to be in hospital, which actually sounds odd, and I posted that here. A certain level of fitness is required to " manage" the hospital experience. I rested very hard before I went in which would not...

@Luther Blissett Thanks Luther. Just had a look at this on the Amazon site which prints a fair bit of the preface and introduction as well as a contents page. The contents are as I remember although I recollect quite a small book which this doesn't seem to be. Maybe one day I'll enlarge my ME...

Thank you @MsUnderstood Dr Simpson's work made quite an impression on me even though it is quite a while since I read it. How interesting that you were a participant but unfortunate that the work was not pursued.

Dr Simpson and Nancy Blake published a book together, quite a short book, which I can't now see on Amazon. Nor can I remember if I bought the book. Dr Simpson died in about 2015 but Nancy Blake is still working on ME: she commented on Jenny Spotila's blog recently. @Mattie- I am working from...

The work of Dr Simpson on the haemorheological properties of blood seems extraordinarily neglected. I tried to have a conversation with a haematologist once about this bit he looked blank. There is also a condition ( which I have, another one) called factor v Leiden where the blood is sticky. I...

Last week I was admitted to hospital electively for tests, including general anaesthesia, relating to the mitral valve prolapse and severe regurgitation I experience. It's a condition more common in pwme than the general population. There seem to be at least two types, and the one I have is...

Has anyone asked TEDX straightforwardly where the other 35 comments are? Or has that question been disappeared too?

Definitely resend. Great letter Trish. Thank you for using your energy on it. Could you include a sentence in your covering letter referring to the significant progress by' real scientists' especially in the US over the last year since you sent your letter to him?

https://www.actionforme.org.uk/uploads/pdfs/cmrc-board-minutes-101017-draft.pdf Minutes of the Oct 2017 CMRC meeting 1. CS was not listed at all. Is this an admin error, or something more? Does CS remain a member of tthe CMRC? I don't think he is participating here yet. Perhaps @Jonathan...

I agree. I do believe it is time for CS to let go of his 'in the tent' argument but unfortunately, there is no sign of this. David Tuller's blogs have shone a light on what the BPSers are and have been doing which is nothing that benefits people with ME.

@Barry- I beg your pardon. You are right. Said my brain was fried!