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

    To become a member, simply click the Register button at the top right.

Search results

  1. T

    The Scottish Good Practice Statement on ME-CFS is online now.

    I'm surprised by this as the Scottish parliament has appeared to be on our side on many issues. I imagine that they have been poorly informed by expert advisors.
  2. T

    UK Media coverage of NIH/FDA paper

    Hi pictureofhealth, my post on the thread you mention was just a copy and past of a post in another thread. It's just a version of my post from http://www.guardian.co.uk/news/datablog/2010/aug/25/stds-england-region-gender-ethnicity-statistics with a better explanatory introduction. I don't have...
  3. T

    Dating...

    I find it very hard to relate to people now. Having taken that step away from everything i have come back to a point of heealth whereby i can say that society and the people therein are mad. The ambitions and dreams that drive sodiety seem pointless to me, still ill after so many years...
  4. T

    The thank you thread

    Thank you my scientific friends. May you all live long and prosper. May your lifes work make my life work.
  5. T

    Come in the UK's media,your time has come !

    Because we have nothing to lose and everything to gain, as well as having truth on our side.The question you should be asking is "How can we lose".
  6. T

    UK Media coverage of NIH/FDA paper

    No need to thank me Meadowlark. If it wasn't me it would have been someone else i think but thank you for your kind words. It's not very often that we get to feel useful and you have made me feel useful. Thank you. I don't know if the M.E makes trying to understand the science harder or if it'd...
  7. T

    http://www.cfidsreport.com By Craig Maupin

    The idea of what happens "after" has been one that has plagued my thoughts during the brief spells of better health i've experienced. I know that i can't once more become the person that i was before the illness since i have been so mentally changed by my experiences, a little for the better , a...
  8. T

    Come in the UK's media,your time has come !

    I had just assumed that the Guardian piece was just a sop to complaining voices, as was the M.E/CFS and benefits piece in the "comment is free section". It's just something taken off the wires and has no analysis of what it all means for patients or of the implications for blood supply. I'm...
  9. T

    Piece on benefits in the Guardian - needs comments

    I posted twice but the main thrust of the debate seems less about health and it has become a place for people to complain about taxation.
  10. T

    ME Association (UK) Summary & Statement on Lo/Alter et al Paper

    I find the more established advocacy groups in the in the UK to be very poor at representing M.E/CFS patients. They should have fought the Wessley school argument for argument and allowed the facts to defeat the fiction of the biopsychosocial nonsense. Instead we get very tame press releases...
  11. T

    Sensory Overload

    Yes, it's as though the mechanism that should tell the brain that it has enough detail fails and we go on to collate more information and make more connections between things. My friends do think i'm a little crazy because i'm forever pointing out what appears to me to be obvious but to them...
  12. T

    Nose, Sinuses, Eyes, Throat, Teeth... non-stop suffering, anyone?

    I had some similar symptoms to yourself on and off for years until the past year or 2 when it became almost a constant problem. It wan't until i had some sort of bone abcess and the dentist got involved again, after i started feeling electric shock like pain in my teeth, that got a diagnosis of...
  13. T

    Ears ringing?

    I've had tinnitus for varying lengths of time since the onset of M.E/cfs 20 years ago. It doesn't really bother me on it's own but it can mess about with my ability to get to sleep so that becomes a problem. I used to entertain visitors by pretending to run my hand over my head, as though i...
  14. T

    Sensory Overload

    I find the sensory overload one of the most difficult symptoms to deal with. It has pretty much ended my social life because everywhere is just so noisy and overy simulating. It feels as though my brain doesn't know when to stop trying to add detail to what i am seeing and as sush leaves little...
  15. T

    Funny veins/ problems drawing blood

    I have veins a drug addict would kill for. It's as though someone has drawn them in with a blue marker pen. The phlebotomist has always finished drawing blood before i can get into full Tony Hsncock "blood doner" character.
  16. T

    Are some of us stuck in fight-or-flight mode?

    I've always described some of my emotional states that way. I've never heard anyone else sum it up that way so i'm pleased that i'm not alone in my thinking. I've always linked it with a faulty immune system reaction.
  17. T

    UK Media coverage of NIH/FDA paper

    My meds have the same insomnia inducing properties as well as the babbling. 15-20 hours of sleep per week over the past 3 months has certainly robbed me of some of my coherency. I've tried to drum up more support on this thread...
  18. T

    UK Media coverage of NIH/FDA paper

    There is an old John Pilger story he tells about meting a group of Russian journalists after the fall of the Soviet union. The Russiians make the point that in the old Soviet Union it took a huge and brutal police state to get the old Soviet press to all print the same fictions and to try and...
  19. T

    Media Coverage of Dr. Alters NIH paper, post stories here

    It's Alec Guinness as George Smiley in "Tinker, Taylor, Soldier, Spy". Very apt when it comes to dealing with the CDC and the Wessley school.
  20. T

    UK Media coverage of NIH/FDA paper

    Hi everyone. I've been lurking on these boards since the rumour broke about the Alter paper some months ago. I finally decided to post because someone said i was a clever man. :-) Anyway, i've tried to pretty much highlight the importance of the Lo/Alter paper in the Guardian and hope everyone...