• 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.

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  1. Delia

    EVENT! From The #MEAction network.

    I wasn't able to participate but did get the links via a different email. I like the the 350 site a lot.
  2. Delia

    EVENT! From The #MEAction network.

    The 350.org link didn't work for me. Another example of inspiration I'd like to see us try is Color of Change http://colorofchange.org As well as the join us link. Not sure what's going in with me.
  3. Delia

    Suggested new name for ME/CFS

    The IoM may appear to be asking us for a name but this no better than a bully in the schoolyard holding up your books over your head, to watch you struggle in pain. Don't fall for this trap guys. Since when has any patient cohort been Able to name a disease/condition, let alone be asked to...
  4. Delia

    NPR Covers the Controversy Over the Definition Effort

    May I post your screenshots to Facebook?
  5. Delia

    NPR Covers the Controversy Over the Definition Effort

    Good job taking screen shots! It's a very good idea to take them whenever possible when you are in a position as we are in now.
  6. Delia

    100,000 plp Signature, president Must issue a respond

    GG is right it has to be the special White House petition platform and the signatures must be collected within 30 days from the start. And even if you get a response, it's very likely to be written by staff fr the President, ie: the CAA/HHS. Also sorry to be a Debbie Downer! But I looked into...
  7. Delia

    First IOM meeting scheduled - Jan 27-28

    Oh! I see. Well, CfS is already going to mental illness in the US medical coding starting October 2014. So... My point on the nomenclature is actually let's use ME/CFS in the first round of raising awareness and fighting the IoM to build layperson support and build momentum. We have to have...
  8. Delia

    First IOM meeting scheduled - Jan 27-28

    Not at all. There is complete misunderstanding here. Jen was not censored. In fact the opposite has happened. She was doing a great job, prior to being pressured to change her terminology. [/Quote="Ember"] With all due respect, ME patients don't receive favourable treatment now, yet many...
  9. Delia

    First IOM meeting scheduled - Jan 27-28

    I answered in another post, another person misunderstood me on this point. I must have not been explaining myself well.
  10. Delia

    First IOM meeting scheduled - Jan 27-28

    Yes! As do hairdressers, employers, co workers (fir those who can work, or could use to work) grocery store clerks, (to help with groceries to the car) police officers (I have had the police called on me when trying to buy a dress for a wedding because the store clerks thought I was drunk...
  11. Delia

    First IOM meeting scheduled - Jan 27-28

    I should clarify! What you say is exactly what I meant by not existing! By making up that name in the face of real ME they created something that doesn't really exist (CFS) to hide the illness (ME) that does exist! I've been just, very badly I think, trying to say, if we say it's a subset, it...
  12. Delia

    First IOM meeting scheduled - Jan 27-28

    Ember, With all due respect, what CFS patient receives favorable treatment now? And I have to reiterate the difference between an advocacy/activist strategy to get to the table: a REAL table where all these differences can be sorted out with scientific integrity, we first need an activist...
  13. Delia

    First IOM meeting scheduled - Jan 27-28

    Fwiw, here is Jen's original message: Her Huffpost article http://www.huffingtonpost.com/jennifer-brea/
  14. Delia

    First IOM meeting scheduled - Jan 27-28

    I believe the term ME/CFS came about in 2003. I got sick in September 2005. I still can't find any doctors within 500 miles of me that even know the term ME. Or ME/CFS. 8 years after I got sick and ten years after they were put together. (Put together for imperfect reasons) Is anyone helped...
  15. Delia

    First IOM meeting scheduled - Jan 27-28

    I just gave this to my doctor today, to help me get the ME diagnosis, and the ability to bill it. http://www.masscfids.org/resource-library/8-diagnosis/456 I hope I wasn't wrong in thinking it would help. I would like to raise awareness so that people can know about this, if indeed it will...
  16. Delia

    First IOM meeting scheduled - Jan 27-28

    My best strategy got lost in this whole ME as a subset of CFS argument. Refusal to use ME/CFS for now and critical work and momentum and opportunity was thrown away. I have been trying to defer to ME advocates, but as you can see, I am quite bitter and hurt this weekend, as the whole thing has...
  17. Delia

    First IOM meeting scheduled - Jan 27-28

    Yeah, sorry about that! One of my trainers worked with MLK in the Southern Leadership Conference (and for God's sake I can't remember his name and I've been searching through pictures and articles since October to find him) but, he trained us to "get what you can that's as close to what you...
  18. Delia

    First IOM meeting scheduled - Jan 27-28

    Ember, I too, have been whole heartedly in the non engagement strategy. I did believe this is one of those very rare political situations where non engagement is critical. But, in seeing the horror show "experts" empaneled, I am glad for those who researched and wrote in to oppose them with...
  19. Delia

    First IOM meeting scheduled - Jan 27-28

    Oh d'oh. Sorry Andrew! I think I misread your post. I'm super sick. I just, not only feel strongly about not prematurely ridding cfs until we can absolutely kill it, but I just got burned in a very significant way in my personal life by the pressure the ME only folks have put on advocates with...
  20. Delia

    First IOM meeting scheduled - Jan 27-28

    It's reaching for the ball you want and dropping the ball you NEED. Which has always been the best way for oppressors to win.
  21. Delia

    First IOM meeting scheduled - Jan 27-28

    We are not sticking the name on them. That is all they know! By sticking to the language of the experts letter: ME/CFS we can not only bring them over to the ME info they need, but also speak in a language that most people know and bridge them over to ME and thus the CFS can be Kicked to the...
  22. Delia

    First IOM meeting scheduled - Jan 27-28

    But they aren't going against the experts letter. Even the experts knew not to drag this nomenclature into the argument at this point! That's what puts the ball into the HHS court immediately. Game over they won. The peril is the scare tactics being used to draw a line in the sand on the...
  23. Delia

    CFSAC Presentations - December 11, 2013

    Bless you! Thank you for sharing these!
  24. Delia

    Occupy CFS: My Feedback to IoM

    Well of course, silly, because small pox, and cancer, and pancreatitis are all completely different once you cross the border out of the US! Don't get me started on Canadian Pneumonia and Romanian AIDS!
  25. Delia

    Occupy CFS: My Feedback to IoM

    I sent a letter of endorsement for Chris' letter as well.
  26. Delia

    Occupy CFS: My Feedback to IoM

    I have sent emails endorsing Justin, gabby Jenny Spotilla and David egan's letters. If there are more I can read somewhere I'd like to endorse those too.
  27. Delia

    ME Demonstrations Scheduled for S.F. on 12/9/2013 and Washington D.C. on 12/10/2013

    There is a federal building near every US citizen: the US Post Office. Those can often be used for protests too. If people can't go anywhere. If people want to do this Send the press release to all the local media outlets, so you can get coverage. If you feel alone in your city, you might ask...
  28. Delia

    Canary in a Coalmine--Huff post!

    I just spent two hours trying to set up an account there. I gotta give up now. This really sucks. I'll try again later.
  29. Delia

    Canary in a Coalmine--Huff post!

    Tha Thank you!
  30. Delia

    Canary in a Coalmine--Huff post!

    Ho how do you comment? In the box that says "start a conversation" ?