• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. D

    Comment by 'deboruth' in 'Ozone Therapy – A Review'

    I have had remissions from ozone therapy, probably based on its anti-viral and anti-bacterial properties as well as positive effect on immune system. Direct ozone intravenous infusion I consider totally superior to autohematotherapy and direct is what I did. It is also possible to do rectal or...
    • deboruth
    • Blog entry comment
  2. D

    Potential Suramin Alternatives - Sytrinol and Kudzu (Anti Purinergic Therapy)

    It's about ways to discourage clotting. Plavix was a new drug using a new mechanism to do this. The point about Suramin is that the anti-purinergic activity it can be used to induce is also anti-thrombotic. The discussion is about anti-purinergics that act to discourage the biological cascade to...
  3. D

    NIH still needs patients

    SARAH, please note that CFSAC has no role involving Congress. CFSAC exists to report to/advise the Secretary of Department of Health and Human Services. It is one among a number of such advisory committees. Thus, it is part of the Executive Branch, not the legislative. People who have served on...
  4. D

    Beware of Aiding in the Burial of ME!

    Since the disease ME forced me to become an historian I shall do my professional duty by revising errors as far as possible. Two messages that essentially all PWME can agree with appeared in the IOM report: 1. The disease is a serious physiological disease causing great harm, and 2. The disease...
  5. D

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    Surely someone needs to begin an academic project of interviewing and testing the SMILE children to gauge the effects and reactions of this trial being double-bind, as opposed to the scientific ideal of double blind. Please note: Esther Crawley has just gotten nominated for the award that Simon...
  6. D

    Dr. Chia's stomach biopsy

    Actually, Dr. Nancy Klimas hits infected mice with corticosteroids to create the mouse model of Gulf War Syndrome. Of course there is no money for a mouse model o ME. Dr. Komaroff has said that the Chia work needs to be replicated. But NIH told him never to come back to them with an enterovirus...
  7. D

    Crawley: How to deal with anti-science BRS2017

    Sorry to say this, but the UK ME charities seem to be unable to do any public relations to get out the truth about the situation, while the Science Media Center has done a high-powered bang-up job of getting out falsehoods along the lines EC was promoting to the nephrologists -- ideas developed...
  8. D

    Petition: Opposing MEGA

    Jo, as a humble colonial, may I respectfully request investigation and disclosure of how the internationally accepted term "post-exertional malaise" or "PEM," generally agreed to refer to PWME characteristic of collapsing, with failure to recover for ages and ages, somehow in the MEGA proposal...
  9. D

    New Org!: ME/CFS International Alliance

    Who invited Chowdhury to p Good idea, contacting her. But don't count on truth changing her mind. That seems to be a problem with a lot of people.
  10. D

    New Org!: ME/CFS International Alliance

    That's really not quite what I was looking for. Get out the spy glass and back to work please.
  11. D

    New Org!: ME/CFS International Alliance

    Causes: mostly viral initiation though ag chemicals can do. mold toxins for some can be thing making more susceptible to the viral being bad. The paradigm wold be that something (like mold, but also other things) comes along and makes the person worse and it all kind gets stuck in a mode with...
  12. D

    New Org!: ME/CFS International Alliance

    What is the relationship between Chowdhury and Creepy Crawley?
  13. D

    New Org!: ME/CFS International Alliance

    She put your name on without you having been involved with the decision to write the letter! Jen, that's disgusting! And I'm pretty sure either a crime or at least
  14. D

    New Org!: ME/CFS International Alliance

    Well shot Andy. I can't believe they wrote "just because we don't know the cause..." I know the cause. I hate the way NIH and CDC et al insist no one knows the cause. We know the causeS.
  15. D

    Livestream today! IACFS/ME Preconference event at Institute of Neuro Immune Medicine

    Not to worry should you miss the live stream -- the webcast will be up for retrieval at any time within a couple of days or thereabouts.
  16. D

    Stony Brook's Friedberg on $600,000 Grant for Studies in Chronic Fatigue Syndrome

  17. D

    Professor Sir Simon Wessely to be made Regius Professor

    Ah that dry British humour. Us Yanks just can't beat it.
  18. D

    Training videos for English GP's on how to deal with CFS patients

    Keep in mind that Dr. Gerada, besides being Simon Wessely's wife, was the enormously influential head of the GP's union who helped usher the Wessleyite theories into preeminence in government. Meanwhile British pundits are tearing their hair out over the question of why Britain is not successful...
  19. D

    Trudie Chalder to speak at Norwegian Research Seminar

    There are literally hundreds of papers already showing breakthroughs in understanding on biological basis -- dating back to 1986, when Caliguri at Dana Farber (Harvard's cancer institution) published with Anthony Komaroff et al on the low NK cytotoxicity in ME patients (aka cfs patients in the...
  20. D

    Chemobrain (& CFS): critical review & causal hypothesis [=somatoform via biomed]

    That's not bad news, that's good news: makes it easier to explain what we are complaining about.
  21. D

    Chemobrain (& CFS): critical review & causal hypothesis [=somatoform via biomed]

    I think we should put together all of the incompetent and inappropriate government employees with evidence of their incompetence (including new Tuller proof on fraudulence of GET and CBT endorsements), point out that all must be eliminated and follow up with communication to Congress as...
  22. D

    Chemobrain (& CFS): critical review & causal hypothesis [=somatoform via biomed]

  23. D

    Dr. Collins wants to mend fences - my call with him

    Brian, we are super grateful that you were able to add a personal dimension to our 30 year quest for our citizens' rights to be treated like human beings by the NIH. Let me offer a small lesson in accounting, of which I had two years at business school. I understand about journalists not going...
  24. D

    Dr. Collins wants to mend fences - my call with him

  25. D

    Jen Brea launches mass-advocacy platform — #MEAction goes live!

    Beg pardon Sasha, but we have to start opposing the thought that ME "has no known cause" or "etiology," which is part of the NIH disinformation campaign and excuse for no research. In fact, ever since the CDC's excellent Dubbo project causation has been documented, albeit not completely. Which...
  26. D

    "Physical or Mental: Why it Matters" (March 31 blogpost by Clark Ellis)

    Keep in mind that Wessely and White and their coterie are disgracing academic psychiatry with particularly poor quality research. I have read vastly better, such as a paper on optimal family or other group living conditions for schizophrenics returning to outpatient status (highly critical...
  27. D

    The End ME/CFS Project: History Taking Root

    Great stuff. Can Francis Collins and Anthony Fauci go on blackballing and sabotaging M.E./"cfs" research with this caliber of scientific talent and professionalism on board?
  28. D

    MEAdvocacy.org Update and a Call for Continued Support

    Excuse me. I just want to insert one small pedagogical note about the issue of using the "ME." In actual fact, the outbreak that brought attention to this disease in the US was that of several hundred people in Incline Village Nevada (Lake Tahoe) starting in the winter of 1984-85. That outbreak...
  29. D

    anyone seen or seeing Dr. Enlander?

    I hugely apologise for somehow sending my criticism to the wrong person. I myself winced on re-reading this and seeing that I used the phrase "total ignorance," which is not appropriate in almost any context. I can see that I intended to respond to unfounded rumours and unjustified criticisms...
  30. D

    Surprisingly good outcomes for people who get ME/CFS after Mononucleosis (Glandular Fever)

    Simon, there is nothing pleasing about being in part time work in your 30s, as these people seem to be. In your 30s you need to be in full time work to be on a path that will enable you to support yourself and have a retirement. In this case only 27% have full time jobs, which is proper...