• 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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    Science Mag News Brief Followup to #MEAction

    Duhhhh, "print"...thanks, Bob!
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    Science Mag News Brief Followup to #MEAction

    "The print version of Science 21 Aug 2015 features a followup to the excellent online article cited by @@Bob last week on another thread." I couldn't find the followup; could you provide a link? Thanks!
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    Lyme Patients vs CDC - should we join?

    The community has to help to find a law firm that will take this on! We have tried in the past, with no success. There was a case of a patient out West somewhere, who won a big lawsuit for his/her CFS...if anyone could find that, and the lawyer who won the case, maybe that atty would know a firm...
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    Drinking TONS of water!! Always thirsty

    I had diabetes insipidus for a while; strangely, it passed, as many symptoms of ME/CFS do. I drank and drank and peed and peed and never quenched my thirst. An endocrinologist gave me some nose spray med (years ago, can't remember name...DVAP?) and when I used it I would bounce from wall to wall...
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    The Shocking Truth

    Yes, usedtobeperkytina, I agree; offensive. These actions did make the government and public take notice that we are invisible no longer. The repercussions and attention continues and will not stop. The Ad inspired even more scientists to jump on the bandwagon, aligned with long-time...
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    Article: The Stars Begin to Align at the NIH: A CFS Review Panel. For CFS!

    Good news! I'm not opposed to shrink with dental expertise: one of my 1st symptoms of severe CFS related problems was TMJ! Had surgery; wonderful results! I am worried about Dr. Jones; how is he going to reverse his positions on ME/CFS all of a sudden...could he be wrangling for the head of the...
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    New, Improved Project ENOUGH!!! thread

    It is the other Project Thread: (MAJOR PUBLIC MEDIA CAMPAIGN) "ME/CFS Worldwide Patient Alliance" on FB/Causes, with over 1038 members and $5K donated in just 6 weeks! The Goals are listed on the Home page; it will involve 1/4-1/2 page Ads in the Washington Post and then, if donations allow...
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    Major Public Media Campaign Launched - This WILL Get the Attention of MILLIONS!

    For those who don't know, the Cause was originally named "Our Voices, Our Message, Our Lives", but it was being confused with PANDORA's slogan, so it was changed by patient votes to "ME/CFS Worldwide Patient Alliance". This Cause on FB is dynamic, with patient input constantly, and we are voting...
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    CFSAC holding a Science Day on Oct 12, before Oct 13-14 meeting

    It also includes Suzanne Vernon, who helped write the "Empirical Definition" of Reeves, et al?
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    VIP Dx MAJOR ANNOUNCEMENT on Jun 1 !

    Good News, first that George is back; I'd like one of those bones to gnaw on while I await the FDA approval for this test and insurance paying for it! There are three of us here in our home, all with CFS diagnoses, and who can afford the antibody and culture tests for us all?
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    Watch CFSAC meeting online Monday 9-4 EST May 10

    Wasn't that Dr. Hannah of the NIH...later, she gets really angry!
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    A New Term! - "Bodily Distress Syndrome"

    Drown them with meaningless words If this crap is called science by any journal, they should be reported to the appropriate medical societies in their respective countries. I believe all these papers are deliberately being put out now in order to confuse the issue of the causative...
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    Time for the Big Talk. How's the CAA doing?

    justinreilly, I agree 100% with you...if the CAA does not come out with all guns blazing at the next CFSAC meeting, we should all agree to ask them to resign and let it begin anew with another national org. I cannot wait until May 10th! There had better be not only words, but decisive action...
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    Comment by 'txfriend' in 'Taking Back the CFSAC'

    I will be asking for all you have recommended, Cort, PLUS: 1. As the nation's blood supply is now at risk, with the XMRV findings, it is imperative the CFSAC be allowed to follow the science, not the psychobabble, to it's conclusion. The CFSAC can do that. 2. Do not downgrade the CFSAC in any...
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    Comment by 'txfriend' in 'Taking Back the CFSAC'

    In one breath, you say the gov't does not pay attention; in the second you say numbers mean something. I don't think anything but a Congressional Inquiry will mean anything at all.
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    Let's "adopt a sequence" (with funding) of an XMRV isolate!

    Monthly from all would help... I'm giving $25 monthly with a credit card thru the XMRV Action Network. I am also getting a little money from the recent sale of a tiny rental home; I managed the property, getting half the proceeds. I plan on giving 10% of my share: it's my 'tithe'...to US.
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    CAA article on ME/CFS in Pain Practitioner Apr 2010

    I thought this a fairly good article, for a change. I was surprised to see the CFIDS part mentioned, as they had abandoned that phrase for a long time; I have repeatedly challenged them on this point. So, all in all, I feel the article went a ways towards enlightening a group of people who may...
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    Comment by 'txfriend' in 'Ampligen, Serotonin and Anhedonia'

    LOL, I can only think of your wife right now...but she sounds really neat, letting you have it for taking it out on her...which, of course if perfectly normal (we always hurt the ones we love when we are an emotional wreck, don't we?). Actually, this is really a wonderful piece, Kelvin; the next...
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    Article: British Medical Journal Published: 11th Feb 2010

    It is interesting how often 'chronic fatigue' is used in place of CFS. IMHO, the only reason there is unclear treatments is because there is no valid scientific research looking for contributing factors; there is only an assumption of psychological factors, not born out by double-blinded...
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    Project: THE WHOLE THING

    Three Problems I See: Samuel, this is brilliant! Thank you so much for putting your little energy to such a daunting task, and thank your 'contact' for helping us do this. My problem is with the term ME. First, it is non-existent in the U.S., as far as I know. Secondly, the U.S. is used...
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    Comment by 'txfriend' in 'Dr Bell's January 2010 XMRV lecture - full transcription part 2 of 2'

    Thank you, freeprisoner! Wonderful job of transcription for us. I'm so hopeful I can't stand myself!
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    Article: Dr. Reeves Out at the CDC

    Wonderful, Rrrr! The CFS thread has begun at cdcchatter.net. Note: if you go to the old one, it was deleted because of negative attacks on persons of interest. The thread is under the 'reorganization' area. If you respond, please, let's keep it civil and don't celebrate too much on that...
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    txfriend

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    XMRV Replication Studies

    Hi, Muffin...RE XMRV Replication Studies I'm with you, muffin...I have a 21 y.o. grdau with CFS since age 14. She just came to live with me as she was destitute, unable to care for herself, and with no health insurance or ability to fend for herself and fill out forms for SSDI/SSI. I'm doing...
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    XMRV International Advocacy Strategy: Help us start a Facebook page?

    hi all... I did email the author of the video/blog and he immediately wrote back, saying he did make a mistake, and he was getting the "CAA written" erroneous info taken off his blog, but that it would take a few days. Very kind person, very understanding of the critique. Very amenable to...
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    Add a comment on CDC/CFS website!

    How the CDC/CFS Info is Wrong! The important thing IMO is that anyone, with any other illness can still get CFS/ME! So, when Reeves says some of these patients have 'other' illnesses, he's right, but that doesn't mean they exclude getting CFS! If one has Diabetes, they can still get...
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    XMRV International Advocacy Strategy: Help us start a Facebook page?

    Video is Great; Petition Isn't... I saw the video, which is great, but the petition is so full of poor sentence structure, grammar and punctuation, I would like to see someone edit it to reflect Americanism, LOL. Also, at the end of the page, after "Sign the Petition", there is a...
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    XMRV International Advocacy Strategy: Help us start a Facebook page?

    Wonderful! I have joined and donated! Incredible job, you guys. I am SO IMPRESSED. I'm pc illiterate, so I am not able to help, but will support you in every way I can. Just a thought: Don't think Autism, even though implicated in the XMRV study, is considered life threatening...or...
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    XMRV International Advocacy Strategy: Help us start a Facebook page?

    Parvo, Frickly, et al Is there some way you all could put the name of the FB page and/or "global" name at the beginning of each of your posts/replies? It's real hard to find it the one or two times over 10 pages... Thanks so much!