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    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. Erik Johnson

    A review of HHS actions - as I see it

    I have a suggestion. Remind the CDC that they did see this low NK evidence in the outbreak which was the subject of the Holmes investigation, which culminated in the creation of a syndrome, and ask them why it was not followed up on. ----------------------------------- Simmaron Research...
  2. Erik Johnson

    A review of HHS actions - as I see it

    Dr Komaroff's presence in Incline Village was no fluke. As told in Osler's Web on page 144, this was the work of Ted Van Zelst, whose daughter was stricken with what was then called CEBV Syndrome. Frustrated at the CDC's lack of motivation and disinterest in moving the science forward, Van...
  3. Erik Johnson

    A review of HHS actions - as I see it

    North Lake Tahoe Bonanza Nov 16 1987 "Incline Victims Show Cell Abnormalities" Tests Reveal New Clue in Fatiguing Illness by Chris Fotheringham NLTB Managing Editor Laboratory results published this week in a prestigious medical journal confirm that over 50% of Incline Village...
  4. Erik Johnson

    Is ME Infectious?

    I have no means of knowing what the virus is. I leave that to the experts. But that doesn't stop me from looking at other factors. During the Incline Village epidemic, I saw this same pattern of severity corresponding to cold and damp weather, just as Acheson did. I knew that neither...
  5. Erik Johnson

    Is ME Infectious?

    http://healthypets.mercola.com/sites/healthypets/archive/2013/09/16/cyanobacteria-blue-green-algae.aspx During the 1985 Tahoe Mystery Illness incident, I staggered down to the lake for some fresh air. A storm had rolled through the day before, throwing slimy silt and sediment up on the beach...
  6. Erik Johnson

    Is ME Infectious?

    Don't give up hope.
  7. Erik Johnson

    Is ME Infectious?

    I told Dr Bryon Hyde how the clusters of illness at Tahoe happened in moldy places and proposed that it was a bunch of people all together with mold AND a weird flu which combined to give the "flu" an extra bit of oomph. It sounded just like the Montreal party that Dr Hyde almost attended...
  8. Erik Johnson

    New article by Cort on 2-day CPET -- this time about Dr. Betsy Keller in New York

    PEM is confirmed in CFS. The following abstract is in error, and should be retracted. ------------------------------------------------------------- Psychiatry Research Volume 200, Issues 2–3, 30 December 2012, Pages 754–760 Cover image Myalgic Encephalomyelitis (ME), Chronic Fatigue...
  9. Erik Johnson

    Autonomic symptoms at baseline and following infectious mono in a prospective cohort of adolescents

    "Further studies are needed" -------------------------------------------------------------------------- A Cluster of Patients With a Chronic Mononucleosis-like Syndrome Authors Holmes GP, Kaplan JE, Stewart JA, Hunt B, Pinsky PF, Schonberger LB. Journal Information JAMA 1987;257:2297-2302...
  10. Erik Johnson

    Is ME Infectious?

    Desperation Medicine by Dr Ritchie Shoemaker Chapt. 23. Surviving Chronic Fatigue Syndrome ... page 345 It began in Nevada, in a tiny community on Lake Tahoe known as "Incline Village". It was here, starting back in 1985, that two observant physicians began to notice a strange pattern in...
  11. Erik Johnson

    Another newbie begging for help on 23andme results!

    Documentary "I Remember Me" The description in the newspapers in the beginning of the video are perfectly accurate.
  12. Erik Johnson

    Comment by 'Erik Johnson' in 'Conservation of Confusion'

    Those of a perverse nature care more about carrying on what they do than prudent ones care to put a stop to them. . don't want to find anything that could possibly interfere with their hypothesis, and control the input by careful selection of their study group.
  13. Erik Johnson

    Comment by 'Erik Johnson' in 'Conservation of Confusion'

    I can totally substantiate this concept. If CFS researchers wanted to solve CFS, they would ask "How did this syndrome start? What set of circumstances set this in motion, what did they know, and when did they know it?" The fact that no CFS researchers have done so, univerally making the...
  14. Erik Johnson

    Is ME Infectious?

    CFS may have been the warning for nanoparticles that nobody heeded September 13, 2013 at 2:21pm During the 1985 Incline Village “mystery illness” it seemed that common household molds were suddenly having a devastating effect on all of us. Everyone knew it, everyone noticed this, but it was...
  15. Erik Johnson

    Is ME Infectious?

    There are a million other things to look into, so this is important, but no more important than anything else. No reason to elevate it in importance. Except for a few trivial details. It was at ground zero for the syndrome, it has shown up over and over, and some of us who concentrated on it...
  16. Erik Johnson

    Is ME Infectious?

    http://www.moldreporter.org/blog/chronic-trichothecene-mycotoxicosis-may-be-indistinguishable-from-cfs/ Chronic Trichothecene Mycotoxicosis May Be Indistinguishable From CFS Objective: Chronic exposure to trichothecene mycotoxins (mold-produced toxins) is known to be both immunotoxic and...
  17. Erik Johnson

    Is ME Infectious?

    http://phoenixrising.me/archives/6895 I studied medical HISTORY, because i was a neophyte in medicine, but a pretty damn good salesman. I was making about $20 grand a month in 1987, though i often felt REALLY sick! Sadly and Stupidly, i did NOT read the Bible, which says that even God rested on...
  18. Erik Johnson

    Is ME Infectious?

    The first thing CDC epidemiologist Dr Gary Holmes and head of the CDC's herpesvirus division Dr Carlos Lopez did during the 1985 investigation into the Tahoe outbreak was to write up a proposal that roughly 20 patients should be selected for long term study. What an incredibly sensible plan...
  19. Erik Johnson

    Lipkin finds biomarkers not bugs

    The variability was in my quote from Dr Ramsay. Yes, I know what controls the crash phenomenon, and it is linked to leptin signaling.
  20. Erik Johnson

    Lipkin finds biomarkers not bugs

    As you might expect....It's complicated. Leptin stimulates MSH "Melanocyte Stimulating Hormone" Which in turn regulates the innate immune system. High Leptin and low MSH is seen in illnesses where toxins are stored in the fatty tissues. The high Leptin makes weight loss extremely difficult...
  21. Erik Johnson

    Lipkin finds biomarkers not bugs

    In addition to regulating the hunger-response, Leptin controls the release of toxins from the fatty tissues. Lipkins findings of Leptin is consistent with "the elusive biomarker for CFS" that we have known about for about fifteen years now.
  22. Erik Johnson

    Is ME Infectious?

    Dr Hyde picked up right away that the incubation period for the Tahoe illness made HHV6 impossible. But it was JUST RIGHT for Type A influenza. http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf A Brief History of Myalgic Encephalomyelitis and an Irreverent History of Chronic...
  23. Erik Johnson

    Is ME Infectious?

    I wondered if Dr Lipkin would find Type A influenza. For this is what was going around during the Tahoe Mystery Illness. ------------------------------------------------------------------------- http://phoenixrising.me/archives/19083?cpage=1#comment-386427 The big pathogen hunt draws a blank...
  24. Erik Johnson

    Is ME Infectious?

    http://phoenixrising.me/archives/19083?cpage=1#comment-386427 Lipkin and colleagues also found upregulation in Leptin, a hormone that plays a key role in regulating energy uptake and use, and Serpin, a protein family with multiple roles. More obscure cytokines, and and their cousins chemokines...
  25. Erik Johnson

    Is ME Infectious?

    Since the very beginning, it is as if trying to tell researchers about this throws a switch in their minds to the "off" position. Scientific curiosity is instantly swept completely out of their minds forever. It is almost as if the mere suggestion of a clue causes "researchers" to recoil in...
  26. Erik Johnson

    Is ME Infectious?

    I was very sick, and couldn't afford to be so picky as to ignore obvious clues. Now that Dr Lipkin has run up against the same roadblock as the rest of the CFS researchers of having no easily identifiable culprits spring out of his testing, perhaps he will open his mind to the uninvestigated...
  27. Erik Johnson

    Is ME Infectious?

    I just got word that Thomas Hennessy Jr. has taken life. Most people don't know this, but he was part of the Tahoe cohort. He became ill while skiing at Squaw Valley.
  28. Erik Johnson

    Is ME Infectious?

    None of the other doctors took any precautions. It has been 29 years of absolute refusal to investigate any other clue but a virus. I deleted my posts because of the absolute sheer universal disinterest and antagonism to having this incident be investigated. People clearly want to never...
  29. Erik Johnson

    Is ME Infectious?

    Clearly, something other than the "weird flu" was involved that resulted in a higher degree of contagion. It was enough to make the difference between recovery and chronicity. And it was also enough to dictate the level of post exertion malaise. Due to a conceptual process that "saw" only...
  30. Erik Johnson

    How does Rituximab relate to other ME research?

    I can scarcely describe how bizarre it is to see references to the Tahoe outbreak as being of interest when no CFS researchers are interested in it.