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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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Search results

  1. K

    Cortene Peptide for MECFS? "Curative"?!

    I don't know if it will cure your CFS, but it could grow a lot of nose hair.
  2. K

    Deficient EBV-Specific B- and T-Cell Response in Patients with Chronic Fatigue Syndrome

    I've had CFS/ME for many years. Back when, I tested negative for mono, which I assume looked for EBV (or whatever). So yes,it makes me wonder if the real problem is lack of adequate immune reaction to the virus, a lack I still have.
  3. K

    The role of IP-10 in Chronic Fatigue Syndrome

    Not surprised since Rapamycin is an immune suppressant like Rituximab, so by tamping down the immune response the CFS/ME sufferer feels better. I'm reluctant to try it as it may be that the immune response is a reaction to a pathogen. What if Dr. Pridgen is right and it's caused by a herpes...
  4. K

    ME/CFS: An Infectious Disease by Dr. Rosemary Underhill

    Yes, very refreshing to know that there are actually real scientists involved in the effort. I just found it very discouraging that so few autopsies have been performed on deceased ME/CFS victims. How else can researchers analyze the presence of a virus in the nervous tissue?
  5. K

    Staph vaccine to treat CFS??

    With millions of sufferers around the world, I would think that a company which stumbles on a significant palliative would jump at the chance to offer it, given the obvious financial rewards. These guys must not be very business-savvy.
  6. K

    What about inherited immune deficiencies?

    I had a tonsillectomy at age two and had a lot of trouble with infectious diseases as a youth. I got what I thought was mono at age 21 in a flu-like illness, but it became chronic CFS/ME for the next four+ decades. Since having ME/CFS I get exhausted and have pressure headaches etc., but seldom...
  7. K

    Neuroinflammation in Patients with CFS/ME: PET study

    The people getting CFS had some of the ones you mentioned, but in addition some of the more standard ones, like headaches and extreme fatigue. I've had the post-exertional malaise, pressure headaches, and cardiac arrhythmias, which I'd say are the most common symptoms I've seen. The flu-like...
  8. K

    Neuroinflammation in Patients with CFS/ME: PET study

    I don't know if any actual researchers read this forum, but if they do, they should contact Dr. Komaroff for more information. I think the viral cultures may still be available. This definitely started as an epidemic in my college. And if it's an enterovirus, or any kind of virus, which it...
  9. K

    Neuroinflammation in Patients with CFS/ME: PET study

    Dr. Komaroff, in his summary shown on Cort's blog, explained that (as I recall) enterovirus from gut tissue of CFS patients had been grown in mice; Dr. Komaroff hoped more researchers used the specimens. When I got sick, several others also got it, which seems to confirm that CFS is probably...
  10. K

    Neuroinflammation in Patients with CFS/ME: PET study

    The results here certainly accord with my symptoms. I have a lot of fluid pressure and terrible irritation that is probably caused by inflammation in the brain tissue. I too wonder why this sort of investigation wasn't carried out sooner. I haven't seen this study discussed on Cort...
  11. K

    Detection of Mycotoxins in Patients with CFS

    Therefore, I assume that he will be out with data showing how his treatment helps CFS patients. Nevertheless, I'm confused as to why, if mycotoxins produce the symptoms shown above and they are different than CFS symptoms, that CFS would have different symptoms if CFS is caused by mycotoxins...
  12. K

    Detection of Mycotoxins in Patients with CFS

    The above symptoms do not really match CFS. Thanks for posting them though.
  13. K

    Detection of Mycotoxins in Patients with CFS

    I haven't been following this thread for a while, but I did notice that someone asked whether Dr. Brewer could present concrete results, i.e., has anybody really been significantly helped or cured via mycotoxin therapy? Yet, all I seem to find is more circumloquacious techo-babble. I'm tempted...
  14. K

    Experiences of daily activity in CFS/ME and their implications for rehabilitation programmes.

    First, I worked up to this point gradually over decades. Second, I have a very high threshold of pain as per an electroshock experiment I was in as a youth - above the legal limit, so I can push myself. And yes, Dr. Bell diagnosed me with CFS - I have typical symptoms. Finally, I have no idea...
  15. K

    Experiences of daily activity in CFS/ME and their implications for rehabilitation programmes.

    This sounds like gobbledygook. I think we all know that there is a correlation between exercise and the symptoms, but I try to exercise to keep in reasonably good shape. That way the symptoms stay relatively constant. I usually do about 20 minutes of body-weight exercises per day, plus either...
  16. K

    One Theory To Explain Them All? The Vagus Nerve Infection Hypothesis for Chronic Fatigue Syndrome -

    The vagus nerve explanation seems very likely to me. I have been sick many decades with CFS, and after investigating the role of the vagus nerve, it could indeed be responsible for some of my symptoms, such as the occasional cardiac arrythmias, IBD, near-fainting spells, as well as the fatigue...
  17. K

    Detection of Mycotoxins in Patients with CFS

    I get that, but would the immune system cause mycotoxins to to be secreted into the urine? Somehow I doubt it.
  18. K

    Detection of Mycotoxins in Patients with CFS

    Interesting. I first got CFS in the 1970s in college. At the time, I was living in an old off campus dorm in NYC. It was winter. I was on the first floor, the floors were cement and the place was very dank. A dorm neighbor of mine also got CFS. The mold thing makes sense as a factor then, but...