• 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. radicchio4497

    NIH intramural research program update

    one interpretation that has been discussed is that with the wrong patient group this trial could devolve into PACE pt 2; we would have yet another very highprofile study which only hurts patients. i think there is room for optimism and i don't mind all the positive posts but i also appreciate...
  2. radicchio4497

    NIH post-infectious CFS study

    @duncan @mfairma some cool lady (NOT ME) is trying ot organize a protest at hhs in may. here is the link. I see a lot of really good netroots activism but the trouble is no one cares about us but us. need the public to take note. with all the good data methods these days, definitions might...
  3. radicchio4497

    Offensive Tweets

    um you guys technically forced exercise for ME patients, esp Severe ME patients, is torture. that makes Wessely and friends torturers. now i'm not condoning letter bombs, but what these researchers have done is inexusable, inhumane, cruel, etc. I can totes understand why some severely ill...
  4. radicchio4497

    hey kids, how do we get zuck on our page

    a number of us writing letters to congress are lobbying on these same lines: too many tax dollars spent keeping us fed and alive for decades while cdc continues to ignore us. who doesn't want to solve the deficit?
  5. radicchio4497

    hey kids, how do we get zuck on our page

    word on the street is he's throwing a lot of money around and not sure if we're on his radar! some preliminary discussion already here: http://my.meaction.net/local_chapters/science-treatment-policy-group/forum_threads/4030#message_15857 wondering if a Rich Person Awareness Hour might do the...
  6. radicchio4497

    Social Media - Community advocacy fail. Why?

    been seeing some good examples of this recently, the key is to couch the hashtags in a message outsiders might understand.
  7. radicchio4497

    Social Media - Community advocacy fail. Why?

    yeah I have noticed myself violating this etiquette once or twice if unknowingly. a few friends of mine have been wondering what would be the necessary leverage to get NIH to make more announcements like the one we heard earlier this month. is it a matter of getting enough of the right studies...
  8. radicchio4497

    Social Media - Community advocacy fail. Why?

    yeah @Kati have noticed that you're WAY on top of this shit, congrats by the way for me the trouble is keeping track of time and date, maybe there's some sort of alert system we could implement to get pwme on the same page? twitter mentions perhaps, wondering if the fb "event" system might not...
  9. radicchio4497

    Social Media - Community advocacy fail. Why?

    "engaging with professionals outside the field": seems to be a v onesided task from my experience, wanna give a neophyte a clue?
  10. radicchio4497

    Social Media - Community advocacy fail. Why?

    have been trying to convince people to piggyback trending hashtags as I think this moves us out of our echochamber a bit. clearly I am not v persuasive.
  11. radicchio4497

    Social Media - Community advocacy fail. Why?

    a problem easily solved simply by paying more attention (ok maybe not so easy for pwme). am not terribly good at formulating my own posts but will RT on command. half the battle seems to be creating posts worthy of such an honor. @TomKindlon seems to be pretty good at this so is...
  12. radicchio4497

    Social Media - Community advocacy fail. Why?

    haven't read thru this entire thread, but what do we think of explicitly mentioning people in replies in order to bring attention to a tweet which we deem impt or worthy of promotion. - is this spam - is this useful discuss
  13. radicchio4497

    How to use twitter for advocacy

    we gotta a bunch of very nonactive ppl too, and they do RT. I'm one of them: my acct is naught but an RT machine for those who are actually nonlazy enough to go and dig up the news. would also like to point out the delicious irony of patients being too ill to go on social media to advocate for...
  14. radicchio4497

    Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause

    has anyone tried flagging down any of the politicians whoring for votes this cycle? seem to remember someone getting a good question in at a townhall some years back. spoke to a congressional aide years ago and apparently no one reads emails either although x number on a specific subject will...
  15. radicchio4497

    How to use twitter for advocacy

    "MECFS community needs wider and better twitter involvement": is this a slur on patients because there are people who tweet 50+ times a day and they are my heroes. we're doing a great job on the twitter.