• 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. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    I got them to change it to "chronic fatigue syndrome" and explained the difference and why it was important. They changed the title pretty quickly, so yay! Now if only we could get then to use Myalgic Encephalomyelitis! I tried but the interviewer had a tough time with it We'll get there!
  2. marygelpi

    Increase Funding For CFS/ME @ NIH (In conjunction with #millions missing protest)

    Thanks Mary Senior! I guess you can call me junior :)
  3. marygelpi

    Pix/reports from the #Missing Millions protests today

    Thanks Bob..I reached out to her with the petition..it's worth a shot! You never know. Thanks. The Rally for signatures ROUND TWO has begun. Just 10,000 away from the goal. We can do it. I KNOW IT! Crap my head hurts.
  4. marygelpi

    News Video: Living with chronic fatigue: Woman struggles with the 'invisible disease'

    :heart: Thank you @Comet!! I feel the love :)
  5. marygelpi

    News Video: Living with chronic fatigue: Woman struggles with the 'invisible disease'

    Dudes, thank you, all of you! It was sort of luck that we got the news to do the video. A girl saw the petition on Facebook...she sort of knew of me because we both studied journalism at LSU. She went to my blog and liked it, and the petition really resonated with her. She facbeooked me and said...
  6. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    @Bob Duude! Thank you so much. It means a lot to hear the encouragement. IT's been a long road. And that interview was actually a few months ago. We were trying to get it aired by PROTEST time in the spring but just couldn't make it happen. The really frustrating part is that he interviewed Dr...
  7. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    @Comet Thanks so much!! I'm happy but feel like there is so much more to do! One day at a time I guess. Next stop...calling state officials. I'm tired just thinking about it waaahh :)
  8. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    @GG really? I saw at first they had that and then immediately emailed the journalist and said they had it wrong. He said they would fix it asap and they did. When you pull it up now do you still see just "CF" in the title? Let me know and I will have them take a look. I hate when people call it...
  9. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    Hey @Sasha, This news story is from local news in New Orleans..but shines a light on CFS. Best part, no comments section underneath :) Honestly for the most part, everyone who sees it and who's signed the petition have been crazy positive and encouraging! We're now going for 50,000...final...
  10. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    Hey friends, The local news here in New Orleans aired a five minute segment on ME/CFS, living with the disease, funding issues, and mentioned the petition! woo woo. I am hoping this will just help with exposure and since it is online, it can be shared anywhere. Anyone feel free to use this if it...
  11. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    I'm actually not on LinkedIn and have not posted it there, and don't know if anyone else has. Would love if you could share it there, it's still slowly crawling upward in signatures :) I'm sending it out soon to Collins/Burwell.. But might as well get as many as possible before then. I'll post...
  12. marygelpi

    Pix/reports from the #Missing Millions protests today

    Agree with you Ben.. It was an awesome sense of connection to a community that is usually only "together" through online forums, if we're healthy enough to even participate in that. (Like this one, haha) Even for those who couldn't attend, there was a sense that everyone who DID represented us...
  13. marygelpi

    Pix/reports from the #Missing Millions protests today

    Thanks Dude! We were there in spirit, Monty too :)
  14. marygelpi

    Millions Missing Coverage

    @Rivka Dude, that article was great. Thank you for writing it and helping shed some light. Just the fact that your two other roommates recovered but for you it triggered something major, I don't know, it seems to say something about possible genetic predispositions for it. Otherwise, all three...
  15. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    Yo dude, fear not!! The petition is not going to close, I just thought it would be great to hit 35,000 by protest time because it's just such a solid number, isn't it? :) And it'd be great to plop a binder filled with 35,000 names of people supporting our demands for change on any policy makers...
  16. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

  17. marygelpi

    Millions Missing Coverage

  18. marygelpi

    Millions Missing Coverage

    ""My daughter, age 21, and the other 2.5 million Americans suffering from the neuro-immune disorder called M.E./CFS (myalgic encephalomyelitis/chronic fatigue syndrome), have an abundance of grit." I have no doubt this parent is telling us what difficulties his daughter has..However, how does he...
  19. marygelpi

    Phoenix Rising supports the Millions Missing global day of protest

    Hey Cort, Mark, and Everyone.. My original comment accidentally got buried inside of another post. I'm glad to see yall supporting the ME Action Group Efforts. I just wanted to make sure everyone who reads this also knows they can sign the petition, which a few of us are working on printing out...
  20. marygelpi

    Phoenix Rising supports the Millions Missing global day of protest

    Hey friends, Just wanted you all to know, you can also SIGN THE PETITION which has gained traction and will be presented to congress members and to the head of NIH and Secretary of Health and Human Services and asks for major increase in ME/CFS research funds. It's at 31,000 signatures now, but...
  21. marygelpi

    May 25 (new date) #MEAction funding demo , Washington DC & elsewhere - patients & supporters

    Hey guys, just wanted to remind everyone to sign the petition to raise funding at the NIH, especially if you're unable to make it to the protest. It's not too late! This way all our voices can be heard. Anyone can sign (from any country) and it only takes roughly 30 seconds. We're at 31,000 now...
  22. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    Hi Bob, Thank you for your encouragement! I was lucky really.. Living in the time of social media and having so many different outlets in which to share it is what helped it take off. A woman who had nearly 300,000 followers on Twitter shared the petition.. And that same day it received...
  23. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    Hey Sasha, That was a great article. Thank you for sharing. I did want to mention that the local New Orleans news is doing a story on the petition, me, the illness, and what it's like living with an "invisible disease." I have no idea how it's going to turn out, but despite what's said in the...
  24. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    THANK YOU!!! Been trying to post everywhere!:) really appreciate it. I think if we rally we can really get our numbers up! We hit 30,000 yesterday.. I say we go for A solid 50 what do you think? Thanks again :) keep sharing, we're getting there!
  25. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    Hey there, So, there is no "magic number" to get to, you obviously just want to get as many signatures as possible to back your cause and put public pressure on the decision makers. Once the petition reaches a "desired" amount.. We reach out to the decision makers- Burwell and Collins. Since...
  26. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    Hi Justin, That's awesome, I've been doing the same. I've been diagnosed with both pots/ dysautonimia and also Lyme...and think most people with CFS probably have some form of one of those. I know with the right research we can find all the answers to the these "co-infections" and conditions. I...
  27. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    Hey GG,' They allow as many signatures as we can get! We hit 30,000 yesterday.. Pretty cool! I say we make it to 50. After you get as many signatures as you think is "enough" to back your cause, you reach out to the decision makers and talk-- Collins and Burwell. If our signature number keeps...
  28. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    Hey Bob, Thank you for signing.. I've been trying my hardest to post in it on every online social media group that had me/CFS/fibro in their name.. My thumbs are tired! I posted it under the "advocacy" and then "petitions" page on this site but there are no replies. Been trying to think of ways...
  29. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    Pace is next on my list.. But I sorta feel like they are slowly going down the tubes on their own wihen every scientist with decent smarts reads it and completely invalidates it. I don't think pace is going to be around (legitimately) much longer. I think retracting it from the lancet is next...
  30. marygelpi

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    Hey guys, So for the first one hundred emails Collins and Burwell get an email with the campaign and the attached letter with every signature. Then after that, every 100 signatures they get a "digest" email that informs them of another 100 signatures AND sends them the most recent comments on...