• 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. K2 for Hope

    Vote Daily To Help Blue Ribbon Foundation Win $50K For Medical Fellowships For ME

    73391
  2. K2 for Hope

    Has anyone used SSDI's "Ticket to Work" program to return to work?

    I guess a lot depends on what you are claiming as your illness. I have "CFS" (they don't call it ME/CFS), arthritis, chronic kidney disease, fibromyalgia, IBS, skin cancer (melanoma, so far treated with surgery and over 200 skin punches), depression and a "few" other issues. It took over 1 1/2...
  3. K2 for Hope

    Has anyone used SSDI's "Ticket to Work" program to return to work?

    Just an FYI, if you state that you can work part time, yes, they say that you can "fast track" to your disability payments again, but you then have "re-prove" that you are disabled. Read about some people that tried this. One guy tried, couldn't do it, then they reopened his case and...
  4. K2 for Hope

    Lyme Patients vs CDC - should we join?

    Jennifer: Thanks for posting the info. Where did you finally get a positive Lyme test result? Or how did you get it? I would like to get another test (at least one that would be correct). Never mind. I see a whole post on the subject of Lyme testing. But, I would be curious to know how you...
  5. K2 for Hope

    Lyme Patients vs CDC - should we join?

    Thanks for your input. I am not sure exactly how to join, but have posted in their FB page that I believe that there are other organizations that would like to be included in the legal suit (if they can find a lawyer that will take it.) I truly believe that the CDC needs a "wake-up" call. They...
  6. K2 for Hope

    Lyme Patients vs CDC - should we join?

    There is a Facebook page for "Lyme Patients vs CDC". Here is what they have posted in their about page. About Have you been harmed by CDC diagnostic criteria? To become a Co-plaintiff e-mail a brief statement to CureTheCDC@gmail.com #CureTheCDC Description #CureTheCDC is crowd-searching for an...
  7. K2 for Hope

    What is the real question the IOM is asking?

    Thanks, Kina. I couldn't find the original email from the IOM posted anywhere so, I wanted people to see exactly what the IOM is asking from Phoenix Rising. Also, the "Statement of Tasks" had not been posted, so I wanted everyone to have an idea of what the IOM is also tasked with completing...
  8. K2 for Hope

    What is the real question the IOM is asking?

    Not that I don't agree Silverblade, but we have a few people trying to put a presentation together and they wanted to get community input....
  9. K2 for Hope

    What is the real question the IOM is asking?

    Also, everyone should know what their "Statement of Task" is. ************************************************************************************************************************************** Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome STATEMENT OF TASK...
  10. K2 for Hope

    What is the real question the IOM is asking?

    In regards to the real question the IOM is asking of the "stakeholders", it needs to read from the original email as they have not requested our input on whether they maintain the contract, but the following, which we, as a community, need to respond to. We can argue all we want about the...
  11. K2 for Hope

    Vote Now, Vote Daily, Vote from Anywhere - Photo Finish in the Nature's Bounty Charity Contest!

    As a reminder for myself to vote everyday, I added the voting website to my bookmarks and placed it first in the top line of my browser. I can add and delete the contests that are running and it helps me to remember. I also know that the "fundraising and contest" group has created a daily...
  12. K2 for Hope

    Vote from Any Country for ME/FM Charity to Win $20,000!

    Kina, Thanks for letting us know that Reach for the Rainbow is helping your family. I love animals, but I also love people. And there are people like us who need help just like we do. To All: I am now voting daily for both as is appears that both orgs are helping people who really need it...
  13. K2 for Hope

    Vote from Any Country for ME/FM Charity to Win $20,000!

    Now, it at 8183. but we are still in 4th place... Keep voting.... :)
  14. K2 for Hope

    How does one help fund ME/CFS Orgs when we are many but limited in cognitive or physical ability?

    Right now there is a contest that runs til March 29th, 2013. The winner could be "ME/FM Action Network (Canada)" and they are currently in the top 5. They could win $20,000 to continue their efforts to support ME/CFS patients if only enough people would vote daily until the end of the contest...
  15. K2 for Hope

    How does one help fund ME/CFS Orgs when we are many but limited in cognitive or physical ability?

    For those who want to help bring more money to ME/CFS causes, but have cognitive issues, financial limitations, physical ability, lack of lottery wins or a rich Uncle, there is a way to help fund many ME/CFS orgs that doesn't cost anything, requires minimal physical ability and limited cognitive...
  16. K2 for Hope

    Nature's Bounty $20,000 Voting Contest:help, FAQs and Updates (Vote from any country)

    Due to my "short term memory" issues, I used someone's advise (cannot remember who) and "bookmarked" the current contest into a new folder called "Fundraising and Voting" on my personal browser. I then moved this new folder to be the first one I see when I open the browser I use (currently using...
  17. K2 for Hope

    Please vote for ME/CFS Australia this month. $5,000...

    All it took was following the instructions that have been written above and less than 1 min to find it in my "spam box". This would be a very simple way to have another ME/CFS org get money to help all of us. Please, if you can post in a thread here, please, please help the orgs that keep us...
  18. K2 for Hope

    Please vote for ME/CFS Australia this month. $5,000...

    I had to find the email in my "spam" box, but it was there. I clicked it and it took me back to the contest page with a link to see the group I voted for. DONE! :)
  19. K2 for Hope

    Did CFSAC's 'High Priority List' Illegally Bypass Public Input?

    The Public Citizen also asked to have Crestor removed from the FDA drug approval list as it can cause kidney damage. http://www.citizen.org/Page.aspx?pid=3212 I took it not knowing about the kidney damage, as the side effects listed do not state that. http://www.crestor.com/c/home.aspx...
  20. K2 for Hope

    Public Citizen Acts on CFSAC Problems

    Thanks, Jenny for being so alert and responsive and thanks to the Public Citizen’s Health Research Group for asking resolution. Jenny, would it help if we "joined" or "contacted" the Public Citizen's Health Research group and sent emails about this? I guess we will watch this thread and you...
  21. K2 for Hope

    Cross Country Trip to meet other Phoenix Rising community members!!

    Hmm... So, what we are talking about is "herding" people with ME/CFS.... :eek: That sounds almost more difficult than either herding cats or goannas.... :D (Please don't be offended with this analogy as I think anyone with this illness will understand the complexity we are referring to...)...
  22. K2 for Hope

    Cross Country Trip to meet other Phoenix Rising community members!!

    Kurt: I think flexibility is the most important as the planning was a bit haphazard. The idea came about, then was put on hold for several months, then it resurfaced, went under and resurfaced, etc. The actual event was "decided" on a Tuesday to leave on that Thursday, but the brain had...
  23. K2 for Hope

    Cross Country Trip to meet other Phoenix Rising community members!!

    Tammy: I have dreamed of that often, but always thought is was just a "pipe dream". I am glad there are so many here that may be interested in doing something like that. To All: Thanks for your input as I wanted to be sure everyone realized this was for all of us, not just those who are...
  24. K2 for Hope

    Cross Country Trip to meet other Phoenix Rising community members!!

    This was meant to uplift spirits as I believe Adin is now on oxygen 24/7 and wouldn't be able to go through something like this right now. Little Bluestem, You are correct. We LOOK healthy and happy, but what would have been a 2 week trip turned into almost a month due to the need of...
  25. K2 for Hope

    Cross Country Trip to meet other Phoenix Rising community members!!

    Uh, I didn't try to find them.... Guess they just "hissed" by me... :lol:
  26. K2 for Hope

    Cross Country Trip to meet other Phoenix Rising community members!!

    Easier for those of us who are not "scientists" and hopefully, will give some hope to all!
  27. K2 for Hope

    Cross Country Trip to meet other Phoenix Rising community members!!

    OK, for those that asked... :rolleyes: here are some of the rest of the pics. You need to open the first one to see the caption and then just scroll to the right to go through them. http://forums.phoenixrising.me/index.php?useralbums/cross-country-trip-to-the-southwest.104/view
  28. K2 for Hope

    Cross Country Trip to meet other Phoenix Rising community members!!

    Willow, I thought this whole illness was science fiction. (at least I used to think so.... :ill: ) I mean where else can you go to do less???? I'm almost sure we live in another world... :alien: Karen
  29. K2 for Hope

    Cross Country Trip to meet other Phoenix Rising community members!!

    WillowJ: A teleporter? ;) Yikes, would we get some kind of notice???? :eek:
  30. K2 for Hope

    Cross Country Trip to meet other Phoenix Rising community members!!

    Oh, Dreambirdie, I know exactly how you feel. That was one of the reasons for publishing this. Sometimes, I wish we all lived in a "little" country somewhere.... with Dr's and caretakers and friends where we could at least get together once in a while - even just for dinner, so we could see...