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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. J

    Let's talk mushrooms for NK cell function/immunity

    I would just grow it at home. I have it growing here. They put it in salads in my wife's country. Takes a bit if getting used to at first as it is rather fishy tasting....nicknamed "fish herb". However once you get used to that it kinda taste good. If you do grow it be aware that it is very...
  2. J

    Letter to Dr. Coffin

    I think you have a good point dsdmom. It seems like there has been a history of bringing in non-CFS/ME experts who coincidentally always have a nay saying message. I do think its a good idea to invite "outside experts" to bring in fresh perspectives and for recruitment but it seems like...
  3. J

    Letter to Dr. Coffin

    I dont feel that your message to Dr Coffin is entirely fair or likely to be fruitful long term for ME patients. I dont believe he has suggested pyschobabble for a cause of ME? has he? I also dont think everyone would say they believe an infection is the only plausible cause for ME. It might be...
  4. J

    Severe Orthostatic & Vertigo Events

    There is actually a treatment for vertigo associated migranes. Dr Bell mentioned in his newsletter about a patient with persistent vertigo that tried the medication and it reduced their symptoms. If I remember right they didnt have headaaches.
  5. J

    Severe Orthostatic & Vertigo Events

    Interesting that you noted garlic as a trigger. They reported that they first suspected garlic, however, being from southeast asia their diet is loaded with raw and cooked garlic. Most days the garlic is clearly not triggering the severe attacks.
  6. J

    Severe Orthostatic & Vertigo Events

    Hi Athene, The symptoms appearantly started out in a more classical presentation but gradually progressed into a state where lying down gave little improvement to the baseline symptoms. However, if the person doesnt lay down on a "regular day" the orthostatic symptoms worsen as they stand longer.
  7. J

    Severe Orthostatic & Vertigo Events

    I was wondering if anyone else has severe orthostic and Vestibular events where they can't stand up without extreme vertigo and extreme orthostatic intolerance. The symptoms seem to be stimulated by most "M.E" related herbal/vitamin therapies such as antioxidants, b-12 and protein supplements...
  8. J

    IC Irony in POTS IV Treatments

    I would be curious to see if anyone has good effects drinking coconut water such as O.N.E. It would be great to get a few people to agree to drink one or two a day for a week to see if they have any benefit. I have had one person tell me they are able to tolerate being out of bed for longer...
  9. J

    From the 1st annual XMRV conference

    "I believe that Cohorts are going to become less and less important now that it is accepted that HMRV is real, and that it causes a disease. Simply put, if you test positive for HMRV and you feel ill, then you've got HMRV-related disease. I guess that diagnostic criteria will still be important...
  10. J

    From the 1st annual XMRV conference

    Its actually plausible for an antibody test to be positive without exposure. We dont know enough about this group of viruses yet to proclaim anything with 100% certainty. There is a reason why they have these conferences with differing opinions and why science is science. Its also worth...
  11. J

    B-12 - The Hidden Story

    "By decreasing virus load, HAART may down-regulate an overactivated immune system in patients, and antioxidant status may improve. Thus, vitamin B-12 might also increase, even without supplementation.... However, these decreased vitamin B-12 concentrations are not necessarily due to insufficient...
  12. J

    Myalgic encephalomyelitis (me), retroviruses, gambling & medical taxonomy.

    Not having these studies done as part of a first step in the process is problematic and confusing. If these XMRV type viruses are present in other illnesses at higher percentages than the general population than we have to alter current theories. Speculation here is fine, but there is still...
  13. J

    Media Coverage of Dr. Alters NIH paper, post stories here

    I dont see any point in the future that any finding will get the majority or the average person to take anything named Chronic Fatigue Syndrome seriously. I dont blame people for taking the stance they take. When I was studying virology at the university I came across an article on CFS and I...
  14. J

    stomach parasites

    I was supprised when I took CFS sputum, stained it and looked under the microscope... as I found a yet unidentified parasite. It appears to be different than the Klapowi parasite but it is also very small and nematode like. Patients are often tested for known parasites via stool but it amazes me...
  15. J

    Dr. Holtorf Queries ME/CFS Community: How are Antiretroviral Treatments Working?

    immune deficiency hypothesis For me, the immune deficiency hypothesis is a very valid idea for why XMRV is present. Particularly since XMRV is being reported in other illnesses where the immune system is not functioning properly. At this point, we simply dont know. That doesnt mean future...