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    Anil van der Zee: David Tuller and the (s)PACE cake eaters

    Well worth a read and I love the t shirt (last photo).
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    Insomnia.

    @Squeezy - if I'd known you were awake too ..... The phone call from my friends was a little late for me yesterday evening and a little too long. Sure enough both brain cells overstimulated and still awake at 3.11 am too. Sigh. I must investigate this N-Acetyl whatsit @Louie41. It sounds...
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    Insomnia.

    Well thyroid meds could certainly bugger up sleep..... Levothyronine (T3) makes me really, really aired Too much Levothyronine (T4) wired but not as bad as with T3 & tired but s!eel badly. Too little T4 and its pretty much lights out - I can't think straight and call asleep everywhere but...
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    Does anyone else get IBS as part of a crash?

    I had really bad IBS and found great improvement by changing my diet. To the extent that as long as I behave I don't have to worry too much. It is an issue on the rare occasions I am away from home as it's difficult to manage what I eat. During a crash my gut definitely malfunctions. Nowhere...
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    Insomnia.

    Sympathies @Squeezy. It's really no fun. I've had trouble since becoming ill and at times have gotten to the point of just not wanting to go to bed at all as I dreaded just lying there wide awake your after hour. I agree with @Alvin - a lot of the sleep hygiene advice can be counter...
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    Does anybody know this?

    It certainly a good idea to get it checked out by a doctor @Inara. I think this is especially true for any symptoms that are new to you or symptoms that suddenly become worse.
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    Does anybody know this?

    I don't know if this is the same thing but it sounds like something I experience if I have repeatedly overdone it without resting up and allowing myself to recover properly. I may seem to recover after a few hours in a darkened room with absolutely no stimulus but I will continue to be very...
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    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    In the UK some of us do manage to get benefits. Some of us don't so e only getting after going to tribunals ( a bit like going to court), but it is always a battle. The arguments that have been used historically to deny benefits here were developed by the BPSers. So it may well be that even...
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    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    The thing is I'm not sure you can accurately compare the costs because the cost of treating cancer and MS involve actually treating cancer and MS and presumably improving and extending the lives of patients. The cost of treating ME (in the UK) doesn't include treating or improving lives...
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    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    I think the lack of outrage is because of ignorance. I think if people realized just how prevalent it is and how severe and that it could happen to them then they would be angry. You are right @Inara - this change must be brought about by many. I think this can be done - we just have to find...
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    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    True, it can be changed though, albeit slowly. I'm thinking back to attitudes to being gay in the 80s, to people who contracted HIV, racism.... Now those prejudices do, sadly, still exist, but they are not considered to be socially acceptable anymore.
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    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    And having failed to prove it they should have reassessed and moved on. I begin to wonder exactly who are the subjects of their experiments: the patient group: but as @Indigophoton points out they have already disproved their own theories. the establishment: just how far can they be pushed...
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    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    Well I looked up BM BCh & found: Bachelor of Medicine, Bachelor of Surgery, or in Latin: Medicinae Baccalaureus, Baccalaureus Chirurgiae (abbreviated in many ways, e.g. MBBS, MB ChB, MB BCh, MB BChir (Cantab), BM BCh (Oxon), BMBS), are the two first professional degrees in medicine and surgery...
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    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    Yes. A consultant paediatrician in the UK means a medical doctor who specializes in illnesses affecting children. Patients are usually referred to specialists by GPs in the UK (the US equivalent of a GP is a Primary Care Physician I think). ETA crossed post with Trish
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    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    I think she has the talent of a politician. Say something that sounds like it makes sense but all the while meaning something rather different. ETA ...but actions do speak louder than words.
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    ME/CFS and the immune system. Where are we now?Geraldine (Jo) Cambridge, PhD, Dep

    A good question @JamBob . Ritux aside, from Jo Cambridge's presentation I understood they have found a problem with B cells - specifically CD21 & CD24 molecules. The observations made by the UCL team may indicate some mitochondrial problem. I don't really understand the science. So...
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    ME/CFS and the immune system. Where are we now?Geraldine (Jo) Cambridge, PhD, Dep

    My take on it (what I hope it means) is that although Ritux itself is not going to be "The Cure", the team will have made some useful discoveries along the way that could provide useful information to J Cambridge and others. This information might provide clues as to where to look next and...
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    ME/CFS and the immune system. Where are we now?Geraldine (Jo) Cambridge, PhD, Dep

    The presentation itself is about 26 minutes and then there is discussion.
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    The Times: Nobel scientist’s researcher finds humiliating error

    And I respect him as much, if not more, for coming clean and admitting it than if the mistake hadn't been made in the first place.
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    The Elephant on the Couch: Side-Effects of Psychotherapy (Berk & Parker, 2009)

    How unbelievably cruel! If it were me I would rather no counsellor at all than a counsellor taking up my resources deliberately not giving me the help I need. If they're not going to help folk come to terms with death and dying, why are they there at all? Sounds to me like they should be fired.
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