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    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. blackbird

    ME/CFS feature on BBC West Midlands radio this morning - 29 March 2010

    Not something regulars here get accused of very often.......
  2. blackbird

    ME/CFS feature on BBC West Midlands radio this morning - 29 March 2010

    It's amazing how much umming and ahhing people do when you come to write it down, even when it doesn't sound too bad just listening. I've kept it to a minimum, but did edit a few bits where those 'pause for thought' words and sounds just made the text lose it's thread. I was unsure about...
  3. blackbird

    ME/CFS feature on BBC West Midlands radio this morning - 29 March 2010

    JM: .but right now we're talking about M.E. It's a very debilitating illness, used to be known, very disrespectfully, as yuppie flu, but it can really have an effect on people's lives. We're discussing M.E. now on BBC WM. And, I want to go straight back to Dr. Charles Shepard who's an M.E...
  4. blackbird

    ME/CFS feature on BBC West Midlands radio this morning - 29 March 2010

    JM: And you really believe that this started to bring you out of the disease? TB: Absolutely certain. And, I then went on, with some help, in the specialist clinic I went to, I was introduced to a food rotation plan. Whereby, you eat a certain type of food every five days, so that you give...
  5. blackbird

    ME/CFS feature on BBC West Midlands radio this morning - 29 March 2010

    JM: Well, Patricia, my guest in the studio, Tina Blake, is nodding her head. Actually, reading your notes Tina, you spent a lot of time sleeping at first didn't you? So you can relate to what Patricia is saying. TB: Absolutely. Yes, probably sort of sleeping 18 hours a day. But, basically I...
  6. blackbird

    ME/CFS feature on BBC West Midlands radio this morning - 29 March 2010

    M: Erm, Dr. Shepard, what should people do on the first sign of the symptoms that Tina's just described? CS: Well, I think if they're going through the picture that Tina has painted, and it is a very typical picture of someone who's starting this illness, they need to go and discuss this with...
  7. blackbird

    ME/CFS feature on BBC West Midlands radio this morning - 29 March 2010

    Joanne Malin = JM Charles Shephard = CS Tina Blake = TB Tony Britton = AB (Anthony, so that there isn't confusion with Tina Blake being TB) Joanne Malin: Right, now it was given the label yuppy flu. Some employers and even medical professionals refused to believe it was a real medical...
  8. blackbird

    ME/CFS feature on BBC West Midlands radio this morning - 29 March 2010

    Thanks for linking that IF. Has taken a while, but I've transcribed it for anyone who might have been interested but missed the one week iplayer window. It's quite big, so will take a handful of posts to put up in total I suspect.
  9. blackbird

    CBT and GET The patients have their say

    I would have been on the NHS CBT/GET program but I didn't take them up on it. I doubt I'm the only one, and though it can't be said for certain, what are the chances that I'd be added to their positive stats, but might have been worse if I'd actually followed a GETprogram?
  10. blackbird

    NEW UK Study website for WPI

    sorry about that guys. You just never know what people will get up to. Maybe I'm crediting the psych lobby with more knowledge of what testing and info is coming from those actually looking for a cure. Or crediting them with less ego than they have. (As if they'd condescend to be looking at...
  11. blackbird

    NEW UK Study website for WPI

    I don't know, why would someone pretend a disease didn't exist........ I found it on the facebook page. It just looks very unprofessional, but maybe it is. Just people trying to help, so may well be totally legitimate. Sometimes it pays to be cautious though (I may just take that too far...
  12. blackbird

    NEW UK Study website for WPI

    Spidey senses tingling on this. Site looks a bit iffy, couldn't fid that link on the WPI facebook page. whois says the site is registered to someone. May be fine, he may be a web guy, but something seems a bit fishy to me. edit: Just noticed, on the links page, there is only one to the...
  13. blackbird

    What about ME?- documentary

    Between these two links, I find that just about anything video related can be played. Media Player Classic Codec Pack This is for Windows machines, and you may not need the codec pack, but I've always installed them as a pair, and can't remember the last time I couldn't get a video to play...
  14. blackbird

    Turn ME into WE - Join the New Emergency Action List

    Nice. I've been away a while, still catching up on everything here. When I was last about there were a few advocacy ideas, and I was trying to get 'US' to work. ....and all the time what I really needed was WE.
  15. blackbird

    You Won't Believe What Else King's College Researchers Can't Find!

    you can't leave this place for a minute. I saw the heading and had my reply all ready, and you're five pages in already !! For what it's worth, on reading the thread title, the first thing I thought of were arses. Closely followed by elbows.
  16. blackbird

    Dating...

    What a smashing thread. Hardly getting out of the house does throw a spanner in the works, even if you were looking on the web. How do you meet up? Even without a separate dating area, this could be as good a place as any to meet up. so, in that vein....... I'm a male, looking for a female...
  17. blackbird

    Doctor billing patient: Check this out.

    unbelievable. surely they can't get away with that?
  18. blackbird

    The Fight is on...Imperial College XMRV Study

    I feel like I'm just emerging from a bit of a hibernation, and I'd like to help with this. A valia says though, it isn't just him. Any chance of expanding to the whole cabal? The round robin citation and referencing must be fraud surely?
  19. blackbird

    Famous (and sort of famous) ME/CFS sufferers

    No problem. Given the amount of writers here, I guess the odds were pretty good there'd be a match. And in case anyone wants to check his twitter/blog, @HurstAkaMiwurdz is now @HurstAKA and his blog: http://hurstm.posterous.com/
  20. blackbird

    Do you look markedly younger than your age?

    I look a lot younger than I am, but as others have said, have started catching up recently. I dare say it might be something you wouldn't be as happy to say if you looked older than you are, but are there members who don't fit this? Otherwise it's looking like a clean sweep. In light of the UK...
  21. blackbird

    Weight Loss

    I'm a little shorter, and a little heavier, but heading the same way. I was sick for a few days a couple of weeks ago, and lost half a stone in about 5 days. Gained a little after that, but still slowly wasting away.
  22. blackbird

    new article "Taking the Scrooge out of Chronic Fatigue Syndrome"

    Great stuff. Will twitter it forthwith. I think some of the zealous champions are here cutting their teeth already.
  23. blackbird

    XMRV International Advocacy Strategy: Help us start a Facebook page?

    It was a bit off topic from the thread, but some ideas I'd had were posted in the 'rebrand cfs' thread: http://forums.aboutmecfs.org/showthread.php?t=1712&page=18 I think the bigger the group the better. Strength in numbers. Even more with the way ME/CFS is marginalised. So many non ME...
  24. blackbird

    XMRV International Advocacy Strategy: Help us start a Facebook page?

    It was a bit off topic from the thread, but some ideas I'd had were posted in the 'rebrand cfs' thread: http://forums.aboutmecfs.org/showthread.php?t=1712&page=18 I think the bigger the group the better. Strength in numbers. Even more with the way ME/CFS is marginalised. So many non ME...
  25. blackbird

    Can someone help me interpret this please.

    Apart from a week in bed recently, I've been fairly good recently. ...and start to wonder if it's all real. Good job I've got a symptoms diary for the last 8 months or so. Will have to have a read back I think.
  26. blackbird

    The Difficulty of Speech

    Having stayed in the house a lot over recent months, I haven't really done much talking, so hadn't noticed, but this is a real problem for me too. A couple of months ago I had a really bad throat, and was told that it was an infection, and to take ibuprofen and paracetamol until it went away...
  27. blackbird

    Our Roll of Honour for 2009

    fresh_eyes Adding DC Comics and Warners to the Red Cross for legal disputes. Publicity here we come............
  28. blackbird

    Chase Community Giving - Your Vote Could Be Worth $1 Million in Donations!

    I posted about this a few times on facebook, but no friends voted (well, one did, but I made them sign in on my computer when they were here and did it for them). Unless someone has an interest, they probably won't bother. I think the way facebook now splits feeds may have something to do...
  29. blackbird

    help "re-brand" CFS

    @teejkay - If you think any of the ideas could be useful in brochures, feel free to run with them. I'm going to have to ease off for a few days, but I'm all about the initial idea anyway, so if the start point is useful, it's probably better for someone else to use it. @charityfundraiser - It...
  30. blackbird

    help "re-brand" CFS

    OK, sorry about the multi posting, but they were separate things. I'm going to have to take a seat in the stands and watch here for a while anyway. I started a first steps to recovery thread days ago, and it's sorely neglected. The benefits people are hardly likely to magic away the problems...