• 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. K

    Peggy Munson blog: A call for radical activism ACT-UP style

    I love the "nuts" campaign -- although nuts have the wrong associations for pwc :Retro rolleyes: Aruschima, I do think it's a very good draft of your letter, and I would be happy to help with further writing and editing. I have a lot of writing experience of various kinds. I'm sending you a...
  2. K

    Peggy Munson blog: A call for radical activism ACT-UP style

    And it takes time to plan something impressive. And to organize everyone to participate. Do you know more about the meeting? Kim
  3. K

    Peggy Munson blog: A call for radical activism ACT-UP style

    Well, morbidity is exactly the point we want to make. I'm not sure it's possible to be too morbid, we have lost our former lives and identities to this disease. We could dress up like zombies to illustrate our "Night of the Living Dead" existence...and so could our friends and family...
  4. K

    Its lawsuit time . . .

    Thanks, Cloud! I'm originally from Oregon, but grew up partly in Mendocino, and partly in the Bay area. Yes, we should all be very concerned about the lengthy pattern of successful attempts to denigrate every valid discovery pointing to a biological, not psychosomatic, etiology for the...
  5. K

    Peggy Munson blog: A call for radical activism ACT-UP style

    I posted the following comment to Peggy Munson's blog: Peggy, thank you so much for speaking for so many of us who want to see ACT UP style advocacy. We do have a critical window of opportunity to influence our government, because of the connection established between XMRV and ME/CFS. I...
  6. K

    Its lawsuit time . . .

    As long as doctors are following the recommendations of the CDC or other "best practices" kind of guidance that currently recommends CBT or GET, I don't think they can be successfully sued for malpractice. Unless a doctor does something that constitutes malpractice under current law and...
  7. K

    (Not ME/CFS-specific) How to start a movement (short video gives a tip)

    Inspirational! Thanks for posting Browneyed Girl. Kim
  8. K

    Its lawsuit time . . .

    It is inconceivable. It's worth doing anything we have to do, to make it stop. I would also like to see an ME/CFS legal fund set up to help individual sufferers with their specific legal issues. There are existing laws that can help protect us from discrimination in employment, healthcare...
  9. K

    Its lawsuit time . . .

    Rafael, comparing our situation with those who brought class actions against Big Tobacco and abestos. If you haven't read "A Civil Action," you should -- it's a legal thriller that helps those of us who aren't attorneys understand the difficulty and complexity of a class action law suit. It's...
  10. K

    Very Important News regarding Dr Myhill and the GMC

    The relativism promoted in the Universities for many years has done much to lower the status of facts in the academic community. Facts, as facts, have been denigrated or ignored in some circles for at least a generation. I'm getting a sort of general impression that government...
  11. K

    Let's talk PAIN

    Hi, Meadowlark: I think contacting Alison Bested's office for a referral to a g.p. or pain specialist is one of your best bets, so good luck finding someone in the local area! How amazing that Dr. Bested says she has been privileged to treat ME/CFS patients, too! And the HIV doctors might...
  12. K

    Advocacy - Is it possible to have a real discussion about on the web?

    I also want to thank Tina for her post. (I'm against the dashes, too. I don't know how you can stand typing it out.) Otherwise, Pandora is a great name. I supported Pandora in Chase Community Giving, but I hadn't known they were doing advocacy as well as research. Hi, Wayne. I just...
  13. K

    Let's talk PAIN

    For some of us, the only good vaccine is a dead vaccine :)
  14. K

    Let's talk PAIN

    Hi, Meadowlark -- If you do a search on this board, you might find some recommendations for good doctors in Toronto. Finding one has made a huge difference in my life. I still have migraines and ME/CFS but at least I know someone is trying to help me, not groaning, sighing, and eye-rolling...
  15. K

    Advocacy - Is it possible to have a real discussion about on the web?

    I like ME/CFS because I spent 7 years undiagnosed, not knowing anyone else in the world who was sick the way that I was, until one day I ran across something Byron Hyde wrote, and the words, "Myalgic Encephalomyelitis." I had read the CDC's definition of the Chronic Fatigue Syndrome much...
  16. K

    Its lawsuit time . . .

    Hi, Cloud: I think we would almost have to look for an established law firm to file a class action suit. Law is so specialized, and the type of suit we are talking about is so complex that we would otherwise have no hope of winning. Maybe an initial goal could be to find volunteers who...
  17. K

    Let's talk PAIN

    I'm so sorry about the harsh circumstances you are facing, Meadowlark. Fiorcet worked for me on, the few times I have taken it. I am thinking about asking for a prescription, but worry about the addictive potential. I have noticed that when I am having migraines, I am not having PEM...
  18. K

    Its lawsuit time . . .

    The real questions are: which laws are they breaking? What evidence is available to prove those claims? If it isn't immediately available, how can we get it?
  19. K

    Let's talk PAIN

    I had a 'flu vaccine in 2003 that activated shingles -- probably involved live, attenuated Influenza virus. The Rubella component of MMR is made from live, attenuated virus. But I did get a Tetanus vaccine this year with no ill-effects, and so we are doing all killed vaccines now, too. I just...
  20. K

    Let's talk PAIN

    I haven't noticed that Tramadol induces dependence. I've gone off it entirely without ill effects, other than the uncontrolled pain. I step up the dose when I'm in worse pain, and step it back down when I improve. The most interesting thing I've ever heard about Tramadol was when some...
  21. K

    Let's talk PAIN

    Thanks, sickofcfs. I hope your daughter's migraines don't progress. My migraines didn't start until I had been sick for several years. I also think vaccines (Influenza, followed by MMR) played a role in the progress of my illness. Now my daughter's school wants me to get her vaccinated for...
  22. K

    Let's talk PAIN

    Thanks for sharing your daughter's experience with me, Sickofcfs. I will bring it up when I have a doctor appointment next week. I hope I don't have to go to a pain clinic, especially because the waiting list will be year long anyway. I don't think a lower dose of sumitriptan would work for...
  23. K

    Advocacy - Is it possible to have a real discussion about on the web?

    Thanks, Urban Travels. I agree that an organization like ACT UP should not seek non-profit status. Doesn't really need it, either. I am vaguely aware that there are several different types of non-profit status an organization set up as a legal defense fund could seek, depending upon its...
  24. K

    Its lawsuit time . . .

    I wanted to say a bit more about my background, and also to say that this project needs people with various talents and skills to get off the ground. We need attorneys to head it up, but other people need to be involved in fund-raisng, media campaigns, public relations campaigns, etc. I am...
  25. K

    Advocacy - Is it possible to have a real discussion about on the web?

    I think you make some excellent points here, Mark, especially when you point out that "all charities and NGOs are compromised to some extent with respect to politics by the laws that govern them." This is an obvious source of frustration for people who want the CAA to do what it (perhaps)...
  26. K

    Let's talk PAIN

    Hi, Urban Travels: I had FM type-pain at the beginning of my illness, which I no longer have on a daily basis. I remember being desperate about how much pain I was in, and doing some interesting things like swilling Robitussin cough medicine, or doing guanifesen therapy, to deal with the...
  27. K

    Its lawsuit time . . .

    Good point, GG.
  28. K

    Its lawsuit time . . .

    So many people here have great ideas/insights into what could or should be done in terms of setting up a legal defense fund. I am very much in favor of moving ahead on this project, and intend to look into what I can do to raise seed money in the U.S. I think a legal defense fund should...
  29. K

    Where does the CAA

    Hi, Cort: I am really in favor of a one-two punch, (repeated as many times as necessary) or a "good cop -- bad cop" approach to our advocacy efforts. Although I have been sick for 7 years now, I didn't get diagnosed (by Dr. Bateman) until about six months ago. I've spent most of the time...
  30. K

    Article: Report From the OFFER 2010 Conference

    Thanks, urbantravels. I shall stop worrying about the possibility of becoming an accidental organ donor. Kim