• 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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  1. mfairma

    Farewell – A Last Post from Anne Örtegren who has just lost her struggle with ME

    He is. I'd heard Angel from Montgomery years ago, but only really started listening to him in the last few months. I used to absolutely love Bob Dylan, and still do, but Prine's storytelling is more meaningful and vivid and his wit is more good hearted and sorrowful to Dylan's sardonic...
  2. mfairma

    Farewell – A Last Post from Anne Örtegren who has just lost her struggle with ME

    This is so sad. I don't cry much any more, but reading this left me in tears. People just don't deserve to live with this. It's all so much. The terrible suffering and how things get worse with time, how your life becomes more and more circumscribed as time passes, as the illness sets in . . ...
  3. mfairma

    "Unrest" updates

    My wife and I watched Unrest last night. *** A few spoilers ahead *** We had seen some early footage of the film some years ago, so knew going into it that the story she wanted to tell would be different than the story we would want told. But, having interacted with Jen on several occasions...
  4. mfairma

    The Real Problem With Chronic Fatigue Syndrome (ME/CFS) Funding: blog by Cort Johnson

    Fundraise if you want to make a difference, even if its hard to raise money when no one cares. Our advocates are incrementalists and you'll need superhuman patience to spend your energy that way.
  5. mfairma

    Poo transplants beyond the yuck factor: what works, what doesn’t and what we still don’t know

    Calm down, Banya. We all know you're in the pocket of big Ovaltine.
  6. mfairma

    Cytokine signature associated with disease severity in chronic fatigue syndrome patients

    I appreciate that. If I knew in advance, I might have been less taken back by it. But, I was more irritated before that surprise when I read that awful Telegraph article.
  7. mfairma

    Cytokine signature associated with disease severity in chronic fatigue syndrome patients

    My wife just forwarded from a friend the Science article in which my story makes up the first paragraph, which was a surprise. While the writer of the Science article apparently talked to my mom some time ago, I would have preferred to have had a chance to speak directly if I was going to be...
  8. mfairma

    CFSAC Webinar June 29-30 Agenda & Call-In Number

    Yeah, I used to be baffled at how they acted and how they slept at night, now I'm just baffled why anyone bothers to participate.
  9. mfairma

    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

    Good thing he didn't wear a fish tie . . .
  10. mfairma

    America’s Hidden Health Crisis: Hope for Those Who Suffer from ME/CFS (posted by CDC)

    Yup. All they have to do, whether intentionally or not, is just enough to placate patients, which isn't much given our history, and that saps patient desperation to demand more quicker and reinforces "reasonable" advocates who don't demand and who encourage patients to view incrementalism as the...
  11. mfairma

    Media coverage of Matthees PACE recovery reanalysis: post links here

    "This unfortunate episode can serve as a wake-up call and it points out the value of freely sharing raw data with other researchers. Good scientists want to know if they are wrong. They want to have their work scrutinized and should be willing to share their data without the requesters having to...
  12. mfairma

    Blog:6 Signs of Chronic Fatigue Syndrome and Unusual Steps to Deal With It

    Well, this all just made me chuckle. Thanks for posting. So absurd I can't even fathom being irritated.
  13. mfairma

    Cytokine Inhibition in Patients With Chronic Fatigue Syndrome: A Randomized Trial

    I took Kineret for eight months or so, following high IL-1 labs, and it definitely was effective. The effect was not massive, but I was much sicker at the time and the improvement was significant at that baseline, and very welcome.
  14. mfairma

    Giardia-specific cellular immune responses in post-giardiasis chronic fatigue syndrome

    I fell sick following protracted infection with giardia. I've always felt, however, that the antibiotics used to treat were likely more responsible, as I had sudden onset two weeks after the second course of antibiotics prescribed, which was metronidazole. I've read since from others with...
  15. mfairma

    "Unrest" Documentary Media Coverage

    That's not a mistake. I have that. Best treatment is a home remedy, solution of salts and spirits.
  16. mfairma

    Psychology's Racism Tool Not Measuring Up

    So, I finally got a chance to read through this article. It's very long, but has a ton of parallels to this disease, so I thought I would pull out some choice quotes and observations to make it more accessible, because I think it's fascinating. Given the length of what I pulled out, I'll do that...
  17. mfairma

    Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

    I think Jen did a fantastic job, so congrats and thank you, Jen! What an achievement! I think Jen's emotion, personality, frailty, and vulnerability are some of the greatest strengths of this video because they give it rare heart and a gripping immediacy. I think she could have carried it on...
  18. mfairma

    Psychology's Racism Tool Not Measuring Up

    http://nymag.com/scienceofus/2017/01/psychologys-racism-measuring-tool-isnt-up-to-the-job.html I thought this article might be of interest to some. It's long, and I haven't read it all yet. It's about a web associations test that supposedly measures our implicit bias for and against various...
  19. mfairma

    Live feed of 12/13 January CFSAC Meeting

    No one. Just me making a joke about how 30 million seems kind of impressive, but then isn't when spread over 5 years.
  20. mfairma

    Live feed of 12/13 January CFSAC Meeting

    Ha! "NIH to spend 200 million on finding cure for CFS*" *Over next 100 years
  21. mfairma

    The Great NIH Exercise Initiative: A Boon for Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia?

    Lol, isn't that Cort's bread and butter? This seems interesting, but five years and not being included directly as a focus of study are ridiculous. Having been sick for seven years now, the prospect of it being good news that we might have a very useful reference in five more just makes me...
  22. mfairma

    #SockItToMECFS challenge from the Bateman Horne Center

    Does laziness count? My socks do tend toward vibrant colors. On this thought, is anyone still collecting shoes? I have some bright pink and neon hightops that could stand out with a bit of cleaning.
  23. mfairma

    Unger et al: CDC Grand Rounds: Chronic Fatigue Syndrome — Advancing Research and Clinical Education

    I didn't bother reading. I applied the Unger test. Is Unger involved? Yes? Then don't waste your energy. There are other people involved, but her name is enough to know there will be some shit slogging to do, whatever the good.
  24. mfairma

    Canary in a Coal Mine becomes 'Unrest'

    I don't disagree, but it's not my decision and ultimately ownership for these decisions lies with Jen. That's just the nature of crowding-funding. Jen is already way ahead of the curve in that space for even producing an end product. SMCI has more of a duty to be accountable than does Jen...
  25. mfairma

    Canary in a Coal Mine becomes 'Unrest'

    @Nielk yeah, I agree, but it's hard to introduce the naming issue in a few sentences without going into more substantive (and tedious) issues that might have distracted from the points Jen wants to make and way she wants to sell it. I totally agree that, in 2016, we should be long past the...
  26. mfairma

    Fatigue in an adult attention deficit hyperactivity disorder population: A trans-diagnostic approach

    I was being a bit literal. I had just taken out the trash and was thinking about all the waste we create, then logged on to see this. Guess my joke could have been a bit clearer.
  27. mfairma

    Fatigue in an adult attention deficit hyperactivity disorder population: A trans-diagnostic approach

    That may be @Webdog. It's an interesting question, though I doubt this study can say anything useful on that subject. It's amazing how driven they are to insert their tentacles into every little nook and cranny possible. CBT/GET, the universal cure.
  28. mfairma

    Fatigue in an adult attention deficit hyperactivity disorder population: A trans-diagnostic approach

    It's nice to have this forum. Whenever I'm feeling particularly wasteful, I can just logon and see how much garbage other people create.
  29. mfairma

    ketamine injection

    That's interesting. Thank you! You can get diagnosed with CFS despite not having PEM, through the CDC Fukuda as well as the British Oxford definitions.