• 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. G

    NIH to bolster RECOVER Long COVID research efforts through infusion of $515 million

    It would seem for perpetuity. For a disease for which we've known the exact cause for decades, for which there have been many effective treatments for decades, and which is probably 95%+ preventable in the developed world...
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    Philadelphia Inquirer article With Fauci on ME/CFS and Long COVID

    Oh, now that's rich...Anthony Fauci laying out methodology for solving Long Covid, after all he's done for CFS. Maybe he can enlist Suzanne Vernon to follow his instructions, and together they can accomplish nothing...as they've done for decades. Useless government employees both...
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    Philadelphia Inquirer article With Fauci on ME/CFS and Long COVID

    Indeed. Anthony Fauci cares about Anthony Fauci and Anthony Fauci's reputation. You can take it to the bank that anything he says is self-serving. I doubt there is a single individual who has done us more harm than he has...
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    New research offers clues to what causes long COVID — fuelling hope for eventual treatments Oct 21 2023 CBC

    They haven't wasted it. These people are "researchers" earning a good living...their interest is in researching Long Covid, not solving it. They've laid the groundwork for a lucrative future revenue stream, and endless "papers", all of which will end with the conclusion that "this merits...
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    Sinus surgery

    I can offer you two bits of "advice" based on my own experience. First, don't underestimate how serious a sinus surgery can be. Recovery from one is no walk in the park, and you shouldn't expect to be up and around for several weeks, at best. Second, I had bi-lateral sinus surgery done before...
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    Insomnia caused by intense internal agitation

    The best I can do is suggest that you spend some time on benzobuddies.org, and decide for yourself. I can tell you that benzos can famously cause exactly what you are describing, especially if taken for long periods of time...and Klonopin is probably the worst of them all. Benzos are very...
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    Insomnia caused by intense internal agitation

    I'd be very surprised if it isn't a consequence of long term Klonopin use. It sounds as if you have understood the risk, and what you probably need to do, so I won't give that lecture. It isn't unusual for benzos to eventually cause the very symptoms they are used to treat. Most doctors would...
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    Long covid, cfs, fibro, lyme etc

    I have literally had to laugh seeing "long-haulers" on TV going on and on about their lingering symptoms, and how they are no better, and aren't getting any real help even now after 6 months. I've been sick now over 35 years...I'd be curious to know how many of those same people gave even the...
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    Cured their ME/CFS, and went on to live their lives (35 Stories)

    Well, for just one example, a thyroid deficiency can mimic ME/CFS...and pretty clearly CCI has been recently shown to mimic ME/CFS. If treatment for either of these conditions eliminates a person's symptoms then clearly that person didn't have ME/CFS...the definition of ME/CFS requiring that...
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    Cured their ME/CFS, and went on to live their lives (35 Stories)

    I seriously doubt that ME/CFS is a heterogeneous disease, but the people who are diagnosed with ME/CFS are almost certainly a heterogeneous cohort. I also don't believe that people who were cured with CCI surgery had ME/CFS, as they clearly had CCI, which would be among the plethora of things...
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    important new book on Dr Fauci - with ME/CFS content

    I assume you haven't bothered to read the book, or any of its supporting material, before resorting to using the easy/cheap shots of "anti-vaxxer" and "conspiracy theorist"? Time will tell as to whether vaccines have been a net-positive or net-negative to humanity. I'm not against the...
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    Poll: what is your age bracket?

    I think all this tells you is who you are hanging out with :). I actually think the more interesting, and more relevant, question is how old you were when you first got sick...
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    crippling anxiety

    Please take this reply in the context that it is coming from someone who thinks that benzodiazapines, specifically Klonopin, ruined his quality of life for more than a decade. The sort of anxiety that you describe is exactly the sort of fleeting problem that benzos such as Ativan are good for...
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    Headache & Brain Fog - Improved by Anti-Pathogen Meds & Herbs?

    I have at times over the years benefited from rx antibiotics, antivirals, and antifungals, and have taken very long courses of each of them...several times each. The benefits were clear for each of them, but never sustainable. Always, there would be improvement, then a plateau, and then...
  15. G

    Advice on Ciprofloxacin

    No. All of the Cipro I took was substantially after I was diagnosised with CFS, and I was sick years earlier. In the early days of CFS, when Cipro was quite new, doctors were actually experimenting with it as a "treatment" for CFS...unsuccessfully of course. As with all drugs, side effects...
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    Advice on Ciprofloxacin

    Not to argue for taking Cipro, but years ago, before all the bad press, I took a lot of Cipro over the course of many years, for persistent sinus infections. I never had a single side effect from it. Most doctors avoid it nowadays because of it being implicated in tendon ruptures, but many...
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    Francis Collins steps down from the NIH

    Don't let the door hit you in the ass, Francis. Could you please take Anthony Fauci with you? If anyone thinks these people had any intention of helping, you need to go back and review the Straus years...
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    Moving to the U.S. 90% likely, where would you live?

    I'm sorry, but a lot of us who have lived in the U.S. all our lives would find that concept laughable...from a general standpoint, and even more specifically from a ME/CFS standpoint. Unless you're somehow entitled to some first class health insurance in the U.S., expect any health care you get...
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    Oxaloacetate

    Fair enough, but that 80% claim just screams BS, no matter how respected the source. And, if he truly has "helped many", what condition were they actually suffering from? No biomarker...no idea what a person who was supposedly helped was suffering from. The only thing of value I can see that...
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    Oxaloacetate

    Sounds like just another tall tale of "success" by a "ME/CFS specialist"...hardly a new development. We should all stop confusing doctors who respectfully acknowledge that we are sick with doctors who can actually do anything to help us...and save ourselves a lot of money chasing rainbows...
  21. G

    Positive response to oxycontin

    I'll take a shot at that...with full disclosure that I am just making this up, without much in the way of evidence, which, as near as I can tell, is what all the "CFS specialists" do all the time. I think we feel terrible all the time because our body has wisely adjusted itself to protect us...
  22. G

    I may have Lyme, need advice!

    It isn't really funny, but I had to LOL over that quote! I can honestly say that in 35 years every single one of the scores and scores of "treatments" I've tried could be summed up by some version of your quote, and besides the wasted money there's the side effects and wasted hours associated...
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    High performers PR survey

    It's easy to jump to erroneous conclusions within a self-selected cohort. Women are more likely to seek medical care than men, educated professionals are more likely to seek medical care than those less educated, in the US less well off people can't even afford to seek medical care, type A...
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    Someone Just Won Disability for ME at the ALJ hearing 2021

    It surely does, but the ALJ suffered no repercussions whatsoever, while I suffered without income for 7 years until a Federal Judge ordered Soc Sec to pay. And, on top of that, I lost $35K of my past due benefits to my lawyers fee (which is approved and set by the Federal Judge). It's...
  25. G

    Anhedonia & "agitated" sleep

    I don't have any suggestions, but you might consider that help may come in the form of a book instead of a bottle. You can get yourself into such trouble with drugs and supplements, but it's hard to get into trouble with a book. Sorry, I don't have any suggestions for a book on the subject...
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    Anhedonia & "agitated" sleep

    I wouldn't do that. What you describe is not really an indication for that drug, and you can get yourself into serious trouble using it. It tends to work for a number of things, until it doesn't, and then your problems really begin. If you can possibly avoid benzos, avoid them.
  27. G

    Update on potential long-term risks of vaccines

    Indeed. Someone should sell decals that can be applied to our TVs and computer monitors to remind us of this sad fact...
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    Someone Just Won Disability for ME at the ALJ hearing 2021

    It is important to recognize that almost all SSDI applications are rejected prior to a hearing before an ALJ, the exception being those conditions that "automatically" qualify for benefits, and CFS is most definitely not one of those conditions. No one should be discouraged by the first two...
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    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    While I've had my differences with Dr. Edwards attitudes, his background and past accomplishments lead me to not take his opinions lightly. He warned early on that Rituxan was likely not going to be the answer and wouldn't stand up to the scrutiny of double blind study. It didn't, and the...
  30. G

    And then there was one- anyone else in US still not vaccinated?

    I'm quite sure they've now inadvertantly (maybe...) opened the floodgates for full-on "shaming". I wouldn't be at all surprised if the shaming elevates to violence at times, as against the AAPI community. The biggest reason I won't get vaccinated is that I've learned after 35 years with CFS...