• 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.

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

Search results

  1. V

    Medical gaslighting finally is being recognized by the mainstream press

    Gaslighting is from the 1944 Ingrid Bergman film Gaslight - forget details but someone tried to make woman and others believe she is mad by making gaslight flicker etc when she was sane all the time.
  2. V

    Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

    I am sure I saw somewhere the total millions granted in uk so far to psych research and the paltry total granted to biomed research - was trying to remember when telling friend about this US grant. Anyone got the figures?
  3. V

    PEM and pacing

    So do I, but hard when I live 200 miles frm close family and old friends, so they need to plan travel in busy lives and stay overnight. Am housebound so choice between crash or never seeing them.
  4. V

    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    I wrote to a neurologist in the 90s (whose name annoyingly I cant remember as so long ago) as think he had an advice leaflet, and he sent me a copy saying that there was nothing physically wrong and patients needed to accept that a biomedical cure would never be found! I replied I was...
  5. V

    PEM and pacing

    When first ill I found it hard to work out why sometimes I was ok and other times not as I could get out to shops for an hour then, but found the worst crashes corresponded with when I had remained standing still eg talking to friend. Crashed badly standing too long and been severe ever since.
  6. V

    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    She uses broad criteria, not requiring PEM as key symptom, so I think she is right to say several different illnesses but the awful thing is she never stresses the danger of longterm possibly lifelong relapse if you have Post exertional malaise.
  7. V

    Guardian article "I had CFS. the Lightning Process at least offers hope."

    Lets hope the Times article marks a turning point. Still had Chalder comments at end but none of the other papers headlined the struggle of pwme as Whipple did but just quoted the SCM.
  8. V

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    After digging the garden you can get pain but not PE Malaise, ie feeling ill, muzzy headed and Flu symptoms as well.
  9. V

    I wish someone had warned me when I first got ME... therapies and treatments

    You can have orthostatic intolerance and not necessarily have POTS. I had thought they were the same.
  10. V

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    It adds to dilemma - do you tell consultant about unrelated prob that you have ME.
  11. V

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    if Crawley had ever posted a caveat that Cfs is umbrella and ME patients have pem so not good for them to do GET or Lp then noone wd mind but she has never to my knowledge done so.
  12. V

    I wish someone had warned me when I first got ME... therapies and treatments

    In Charles Shepherd,s book he talks about loadbearing muscles, and that seems to fit as standing all the load is on your feet wheras walking it varies.
  13. V

    I wish someone had warned me when I first got ME... therapies and treatments

    I wish I had known 20 years ago about the danger of standing still. I had discovered that graded exercise gave PEM but not that standing still would give even worse PEM. Mainly in bed ever since.
  14. V

    Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

    I am sure Esther Rantzens daughter recovered three times in the DM, once after stay in psych hosp, then few yrs later after LP, then when she had coelic after all and said after lp she had had to fake it.
  15. V

    MEA hear back from NICE about the identity of ‘topic experts’ | 13 August 2017

    I was told by a neurologist I had emailed for info years ago that he told all his patients that a physical cause of ME would never be found! Cant recall his name unfortunately. I emailed back that I was surprised that a scientist would believe absence of proof is therefore proof of absence.
  16. V

    Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England

    Always subjective answers, no actometers in sight :-(
  17. V

    May 12, 2017 Is International ME/CFS and FM Awareness Day

    You can download ME awareness leaflets for the general public, (in larger print with bold and boxes so easy to read), plus the brilliant comic strip showing effects of PEM, so that those going to demos or events could take some to distribute. Www.mechat.co.uk/db/tips.htm I have printed a lot...
  18. V

    BBC Radio 4: The Life Scientific with Simon Wessely, 14th Feb 2017

    In the late 90s/ early 2000s I sent for info from a neurologist whose name and hosp (London somewhere) annoyingly I forget, and in an email to me he said CFS patients have to accept that a physical cause will never be found!! I replied saying absence of proof not proof of absence, but he didnt...
  19. V

    $240,000 raised!!! #TripleTuesdayOMF- For every $1 donated OMF will receive $3!!! $100k goal!

    I ask for donations to ME research for Christmas and this is a bargain if they 'shop' early. Have already had two early Christmas triple presents :-)
  20. V

    PEM or something else....