• 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.

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  1. slysaint

    Esther Crawley Paediatric Prevalence Study Funded by Action for ME

    see also http://forums.phoenixrising.me/index.php?threads/hazel-odowd-pace-author-webinar-for-gps-sponsored-by-afme.52135/
  2. slysaint

    Comment by 'slysaint' in 'Journal from my Moderation Cell, Day 2'

    have you dug a tunnel out yet?
  3. slysaint

    25 Oct E Crawley speaking at Better Science Better Data event......

    had to laugh when the list comes up with 2 'Lightning talks' just before ECs listing!
  4. slysaint

    "Unrest" updates

    As they did off the back of #millionsmissing http://forums.phoenixrising.me/index.php?threads/action-for-m-e-agm-to-feature-unrest-film.54140/
  5. slysaint

    25 Oct E Crawley speaking at Better Science Better Data event......

    I remember when I asked the question how she gets away with all the things she does and gets viewed as an expert, JE replied 'Because she is on committees'.........seems this is right.
  6. slysaint

    25 Oct E Crawley speaking at Better Science Better Data event......

    " 14.30 – Keynote #3: How open should open data be? Esther Crawley, University of Bristol" "Esther also leads a research team which investigates the epidemiology and treatment of CFS/ME in children and adults. The epidemiological work uses the Avon and Longitudinal Study of Parents and...
  7. slysaint

    Prof Sir Regius Simon Wessely on Judicial Appointments Commission

    Maybe he'll combine his two new roles and get judges he doesn't like detained under the mental health act?
  8. slysaint

    Driving with ME/CFS

    I had to give up driving when I fell ill..........I just don't think it would be safe; on a par with drink driving, not so much because of 'the fatigue' side but of cognitive and sight problems that can come on very quickly out of the blue.
  9. slysaint

    Esther Crawley - talk 17th Nov Mood disorders Centre, Exeter Uni

    University of Exeter Professor Esther Crawley (University of Bristol) - Title TBC Mood Disorders Centre Think Tank seminar series A Mood Disorders Centre seminar Date 17 November 2017 Time 12:00 to 13:00 Place Mood Disorders Centre Mood Disorders Centre Think Tank seminar series...
  10. slysaint

    Mrs Sowester's Magic Beans

    will that mean you become a dominomatrix?:wide-eyed:
  11. slysaint

    "Unrest" updates

    email from #MEAction Unrest is almost here While Unrest's UK theatrical premiere is still a week away, it's already started making waves with this interview with Jennifer Brea on BBC Radio 4's The Film Programme and this piece in the BMJ. We at #MEAction are so thrilled to be partnering with...
  12. slysaint

    Mrs Sowester's Magic Beans

    Further ideas for development: cyanide supposedly smells like almonds; maybe add a drop or two of almond essence to give it that bakewell tart appeal? arsenic is in rice products (eg rice cakes) so it can't do any harm.......maybe use this fact in future advertising.
  13. slysaint

    Article: "The SMILE Trial Lightning Process for Children with CFS: Results too good to be true?"

    discussed here: http://forums.phoenixrising.me/index.php?threads/guest-post-by-dr-keith-geraghty-on-smile-trial-on-coynes-blog.54861/
  14. slysaint

    Mrs Sowester's Magic Beans

    do you accept livestock (eg a cow) in lieu of payment........only I know someone called Jack who might be interested.
  15. slysaint

    Mrs Sowester's Magic Beans

    do they jump?
  16. slysaint

    Cosmopolitan: Millions of Women Suffer From a Disease That Virtually Sucks the Life Out of Them

    This does bug me a bit when some imply "it's a bit of a mouthful so let's not use it". So are the names of a lot of diseases (you only have to watch an episode of Doc Martin!). Acute disseminated encephalomyelitis (ADEM) is a disease and you don't hear people saying 'ooh dear what a...
  17. slysaint

    Pain in sides

    maybe look into oxalates?
  18. slysaint

    Defining and measuring recovery from ME & chronic fatigue syndrome: the physician perspective

    "Physicians conceptualised recovery as complete symptom remission and a return to premorbid functioning (adjusted for with age)" I would think this is what most people consider recovery. It is common sense, apart it would seem for the likes of Crawley, White Sharpe etc who seem to equate it to...
  19. slysaint

    Neurobiological idea for some of the psychiatric stuff maybe?

    Maybe you'd like to introduce yourself.....? Not quite sure why you come up as a Senior Member.
  20. slysaint

    "power drain" feeling when walking

    I confess that at one place I worked at (long before I fell ill) there was a guy who used a wheelchair and one day I was horrified when I saw him in the carpark, get up out of the wheelchair, fold it and put it in the boot of his car. People assume that you use a wheelchair not because you...
  21. slysaint

    Misdiagnosed: How Children With Treatable Medical Issues Are Mistakenly Labeled as Mentally Ill

    "Now open to the possibility of PANS, hospital physicians agreed to treat her with intravenous immunoglobulin, or IVIG. Derived from the plasma of over a thousand donors, IVIG is used to treat a number of serious and life threatening medical conditions, including PANS. Sophia also underwent...
  22. slysaint

    "Unrest" Documentary Reviews

    Once Dismissed And Hidden, Chronic Fatigue Patients Speak Up Science Friday article on Unrest also [Our podcast, “Undiscovered,” digs into the treatment controversies over chronic fatigue syndrome.] https://www.sciencefriday.com/segme...ten-hidden-chronic-fatigue-patients-speak-up/
  23. slysaint

    "Unrest" updates

    Unrest comes to UK: "Next, Unrest will be released in the UK on Friday 20th October, plus special previews at the BFI Southbank on 16 October and in Brighton on 18 October. We are just weeks away and are so excited to finally bring this film and this story to the broader public!"...
  24. slysaint

    "Unrest" updates

    Haven't seen Unrest yet, but I did watch Lady Gagas documentary (5 foot 2) last night........didn't know anything about her before. It was a bit all over the place, noisy, fast moving (not recommended viewing for pwME); but it did show the periods of intense all over pain she goes through. Her...
  25. slysaint

    More from Science Medica Centre on SMILE

    around 24:00 to 26:00
  26. slysaint

    More from Science Medica Centre on SMILE

    What about the 'rogue' molecule Ron Davis' team found in the serum? Are any other scientists trying to identify it/replicate the finding?
  27. slysaint

    BPSers using new research to justify psychological treatments

    This seems to be creeping in a lot (from Psychology Today) A New Approach to Treating Hard-to-Cure Illnesses If your body knew what was wrong, what would it say? Posted Oct 01, 2017 "A Stanford University study published just last month validates the intuition I had about Carla, showing that...