• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Frickly

    New Yorker endorses Obama

    This is a very good article from the New Yorker endorsing Obama for president. The Choice by the editors "The reëlection of Barack Obama is a matter of great urgency. Not only are we in broad agreement with his policy directions; we also see in him what is absent in Mitt Romney—a first-rate...
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    Phoenix Rising and Me

    Glad your back Jody. :)
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    Saturday Night Live

    Awww...bummer. :(
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    Saturday Night Live

    SNL mocks last Obama/Romney townhall debate. So funny! http://www.huffingtonpost.com/2012/10/21/snl-second-presidential-debate_n_1996561.html?utm_hp_ref=politics&ir=Politics&ncid=edlinkusaolp00000009
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    OUR FAVORITE DRUG (HOPE), AND TIME TO SAY “AUF WIEDERSEHEN”, October 8, 2012, by XMRV Global Action

    OUR FAVORITE DRUG (HOPE), AND TIME TO SAY “AUF WIEDERSEHEN”, October 8, 2012, by XMRV Global Action "Suffice it to say that the XGA team has reached a turning point, and we wanted to exit with a positive statement about hope. This is not a capitulation, rather an opportune time for us...
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    OUR FAVORITE DRUG (HOPE), AND TIME TO SAY “AUF WIEDERSEHEN”, October 8, 2012, by XMRV Global Action

    We’ve already found an error in our Resources for XGA members:Somehow we linked Jennie Spotila with Frank Twisk’s Twitter account. The resource list should read: ME/NEURO-IMMUNE BLOGS: Occupy CFS: www.occupycfs.com TWITTER: Jennie Spotila: https://twitter.com/knittahknits
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    OUR FAVORITE DRUG (HOPE), AND TIME TO SAY “AUF WIEDERSEHEN”, October 8, 2012, by XMRV Global Action

    "Suffice it to say that the XGA team has reached a turning point, and we wanted to exit with a positive statement about hope. This is not a capitulation, rather an opportune time for us individually to focus on our health and our respective advocacy initiatives. October 8th seemed like an...
  8. Frickly

    Low-dose naltrexone (LDN) - how's it working for you?

    It was hard in the beginning. Migraines and could not sleep. the sleeping issue kept getting worse until I was exhausted. I started taking it every other day for about a month and that solved the problem immediately. Then went back to 4.5 everyday with no problem. I have been on it going on...
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    Group appreciation card for Dr Ian Lipkin

    Tania should get an email that the card was delivered. Tania will get another email if it is not opened and then she will need to email the link to him.
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    Group appreciation card for Dr Ian Lipkin

    Just a reminder that this thank you note will be sent out on November 20th. http://www.groupcard.com/c/pksqMSv2bjQ
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    Since your ME/CFS onset, have you caught the Cold & or Flu more or less frequently?

    I don't think I can answer on the poll. In the early years of my illness it was a relapsing remitting kind of thing and I was sick all the time. In the last few years, since my illness turned from relapsing to a constant thing, I never get sick. No colds, not even a sore throut. I started LDN...
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    Group appreciation card for Dr Ian Lipkin

    taniaaust, Maybe you should edit your first post in this thread and add the link to the group card. That way people don't have to scroll to page two to find it.
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    Group appreciation card for Dr Ian Lipkin

    I just now saw your message and sorry this was stressful. Looks like you got it worked out. I will sign and share on facebook. Thanks you!
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    Group appreciation card for Dr Ian Lipkin

    taniaaust, you just need to pick out a thank you card. The message you write will not be the main message of the card but just a note/signature placed with all the others that will be made. Did that make sense? I just woke up. Thanks for doing this.
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    Demand a permanent halt to the multi lab Lipkin study

    Here is a link to group cards. The first one is free and easy to do. I have already used my free one but will certainly sign it if someone sets it up? I agree that we should not bombard Dr. Lipkin with emails but would like him to know that his work is appreciated...
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    Demand a permanent halt to the multi lab Lipkin study

    I am still around but spending most of my free time on facebook. Sorry for the confusion. I always tell my husband to listen to what I mean not what I say. :) I meant you can't compare the Lipkin study with those two. I am thankful that Dr. Lipkin has taken such an interest in this disease and...
  17. Frickly

    Demand a permanent halt to the multi lab Lipkin study

    Um..Can you really compare the two Angela? I don't think so.
  18. Frickly

    Demand a permanent halt to the multi lab Lipkin study

    Never thought I would see a day when patients were actually petitioning for research to stop. This makes no sense.
  19. Frickly

    Please Help Nominate Annette Whittemore for Citizens Medal!

    Please Help Nominate Annette Whittemore for Citizens Medal! http://apps.facebook.com/causes/posts/762563 President Obama is searching for an outstanding American who will be awarded the Citizens Medal, the nations second highest civilian honor. Please join us in nominating Annette Whittemore...
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    GcMAF trial

    Dr. Enlander, How would someone get involved in your trial?
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    GcMAF trial

    Dr. Enlander, How would someone get involved in your trial?
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    POLL: Swollen lymph nodes: Did you have these before getting ME/CFS, or did they only appear after?

    Swollen lymph nodes in my neck were my first symptom, years before any others. Now they are almost always at least a little swollen but do fluctuate with my other symptoms. I had to go on steroids a few weeks ago because they were so swollen it was pushing on my esophogus and making it difficult...
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    WPI Matching Fund 2/27/2011 - 3/31/2011

    Thank you Andrew!
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    Tina Tidmore on the RADIO! Spreading Critical Information on ME/CFS!

    Link to Recording Radio Interview & Advocacy Updates from MCWPA by XMRV Global Action on Tuesday, March 8, 2011 at 11:01am. A message from ME/CFS Worldwide Patient Alliance: Leslie Carol Botha with KRFC in northern Colorado interviewed Tina Tidmore about the history of ME/CFS outbreaks...
  25. Frickly

    Tina Tidmore on the RADIO! Spreading Critical Information on ME/CFS!

    Thank you! Thank you for taking this on Tina. You did a great job!
  26. Frickly

    WPI Matching Fund 2/27/2011 - 3/31/2011

    Thank you so much Andrew for this generous gift. I will donate an extra $10 through facebook causes in response to your offer. :thumbs up::smiley-hug::Sign Good Job::Retro biggrin:
  27. Frickly

    Article: Time to Make a Difference Together by Marly Silverman

    This quote from above is very disturbing and CRUEL. I am sure the families that pandora have helped do not think they are "dead weight". And if really ticks me off when someone tries to tell me where to spend MY money. I donated to the MCWPA and glad I did. In fact I just sent another donation...
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    Article: Stars Not Aligning Any More: CFS NIH Grant Panel (SEP) Reverts, McClure on Board

    I have sent a whirlwind of emails and also contacted my representatives, Amy at WSJ and Mindy at CFS Central. Unbeleivable......:Retro mad:
  29. Frickly

    Article: Not One Alone: CFIDS Association Board of Directors Take a Stand For the Power Of 'We'

    My goodness parvofighter.....I would have just said that the CAA seems to be totally out of touch with what the patient community they are serving wants and needs.....but I will buy your argument as well. :)
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    Dr. Jay Levy found no XMRV in my blood

    Hi Cort, glad you finally got your results. I am still waiting on mine. I still am not sure what result I am hoping for. I have been waiting so long that I think at this point I just want an answer. I would also like to know how you feel about the news?