• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Graham

    Bob's funeral and donations

    Bob (Robert Courtney) Bob's funeral will be held at Feltham at 2:00 British Summer Time (Wednesday 11th April). You are invited to join us in a minute's silence then in his memory, if, of course, your time zone allows. His sister Vicki has created a JustGiving page for him, and has added some...
  2. Graham

    In Memory of Bob: A tribute from his friends

    I hope to try to print off the poster/card for Bob's parents next week, so please, if you are intending to write something for them, please do so this week: I'm always happy to help. Bob's funeral will be on Wednesday 11th April at 2:00 pm GMT (sorry, British Summer Time). His younger sister...
  3. Graham

    In Memory of Bob: A tribute from his friends

    Thanks Sasha. Just to add to that, I have editing rights, so if you have typed something in and posted it, but then aren't happy, I can edit it for you. It would be best to PM me rather than post here though, just to make sure I don't miss it. It isn't a clear process at all @bertiedog ! We are...
  4. Graham

    In Memory of Bob: A tribute from his friends

    UPDATE Some of Bob's many friends have put together this tribute to him. We do not think it is appropriate to discuss the circumstances of his death or the treatment that he received until the inquest is over, and will get back to you with more details then. In the meantime, we have created a...
  5. Graham

    Update on Alex3619: in hospital but doing well

    I hope you're right, Alex, and the IV antibiotics do the trick. I can just see the headlines - Patient finds the IV solution for ME. Hope all goes well.
  6. Graham

    Protein problems

    Thanks L1. Why, oh why, is my brain so messed up I posted this in the wrong section?
  7. Graham

    Protein problems

    Does anyone have any insights into a problem with protein digestion? A friend has been getting overwhelming panic attacks and muscle cramps for some time now, which do respond to a certain extent to Beta-blockers or benzo. This friend accidentally found out that reducing protein intake reduced...
  8. Graham

    PR Collapse

    And me.
  9. Graham

    PR Collapse

    I can't see "delete group" either, just a space between leave group and edit group.
  10. Graham

    PR Collapse

    The last time I tried to delete a thread, I ended up having to delete every message.
  11. Graham

    Rituximab Trial - SMC Expert Opinion?

    I struggle to understand your cynicism over the Science Media Council. Their position will be quite clear: the control group will be inadequate: the reliance on subjective assessment will be deemed unreliable: the lack of positive improvement with objective testing will show a failure to...
  12. Graham

    PR Collapse

    Don't get me wrong. I'm not optimistic, but I just think it is worth giving things a bit of time in the hope that such a large groundswell will have an effect. But if we do migrate to a new site, I'd like to suggest a new name for it - chicken brooding. Eggsactly!
  13. Graham

    PR Collapse

    It still doesn't mean that PR is doomed. There are some pretty stubborn and difficult characters here (and I hope you will do me the honour of counting me as one of them). If the board expands just a little, then Janet will not have enough influence to stop other members joining and diluting any...
  14. Graham

    PR Collapse

    Flaming cheek!
  15. Graham

    PR Collapse

    Can I butt in with a comment please? To me the strength of PR is in its members, not in its leadership. We aren't the Titanic, with a captain steering us all together: it's more like herding cats, or the Department of Education issuing edicts to teachers - everyone is too independently minded to...
  16. Graham

    SMILE trial results - MEA critique

    Thanks for producing the review, Charles. How many lessons do these people need before they realise that what they are doing is utter rubbish? If my sixth-form students had ever produced such work as coursework for their A-levels, we teachers would have gone home despondent that our teaching...
  17. Graham

    PR Collapse

    Is this why my "Alerts" warning at the top is playing games with me? I suddenly get 48 alerts, click on the drop-down and find none.
  18. Graham

    Anyone interested in this potentially paid one-off job?

    I'd be willing to give it a lookover (for free) if that's of any use. But I'm probably not the best person to do it. If anyone else would like to do it, then I gladly assist. After posting this I realised that I should have added that if someone would like to do it and be paid, I'm still happy...
  19. Graham

    PR Collapse

    I find it all confusing and sad. I don't have any real preferences on what to do about it: I'm not in the same position as many of you are when it comes to private information. So whatever you all think best, I'm happy to support.
  20. Graham

    Unrest for preorder on iTunes

    Ah, a wise move, oh Ms Fury (or may I call you Hell?)! Actually we have been quite surprised by the uptake. We've already sold over 40 tickets, and the posters, bits in local papers etc. have yet to hit the streets. We are being very optimistic and seeing whether we can get some staff from the...
  21. Graham

    Unrest for preorder on iTunes

    It's £200 to rent it to put on a screening: we are putting it on in a local "theatre" that seats 100, and, together with the hire of the hall, that brings the tickets up to around £3.50. But if just a few of you in your ME group want to watch it, then iTunes is a more appropriate route.
  22. Graham

    Unrest for preorder on iTunes

    It's a lot cheaper to see it at Crowborough or Portsmouth!
  23. Graham

    PACE and internal consistency

    I think I am going to have to write it out properly, clear my mind and put some work into it! Sorry for being muddled. I'm going through one of those longer brainfogged patches where I think I'm OK, but find I'm making mistakes that I really wouldn't normally make. It's a good job I'm not...
  24. Graham

    How to fund our latest paper?

    Have you seen this? twitter.com/bmjpatiented/status/915591330146942976
  25. Graham

    A NICE fairy tale

    Fair point! I've lost the plot. Thanks.
  26. Graham

    PACE and internal consistency

    I think we are still at cross-purposes here. Didn't they just add the extra criteria at the end? To start off with the criteria of having CFS was purely doctor-driven. They introduced arbitrary scores on the sf-36 and fatigue scales to select only the more severely affected, which meant that...
  27. Graham

    How to fund our latest paper?

    It might be worth a tactful enquiry: something along the lines of being grateful for funding the first one, and getting the ball rolling with the Journal of Health Psychology. Probably thanks to all that, the atmosphere is changing and we are into the big league.
  28. Graham

    PACE and internal consistency

    Sorry: I seem to be struggling with clarity these days. Only around half of the patients sent to ME centres would appear to have the condition: the others have something else, often undiagnosed sleep apnoea, heart problems etc. So out of 3000+ patients, we would expect around 1500 to be turned...
  29. Graham

    A NICE fairy tale

    No, I haven't worked on it yet. I tend to get these ideas, then there is a long gestation period when ideas become more coherent and consistent (in theory). Plus we are organising a local screening of Unrest which is taking some time. Which subset analysis did you mean? I know that White et al...
  30. Graham

    How to fund our latest paper?

    Thinking.