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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

    Dr. Roger Mazlen-New York

    I cant say how he is from a patients perspective but I have had several conversations with him and was involved in one research project he participated in... so I would say he is worth while to try to see if its not to much a burden to get to his location. He seemed very kind, knowledgeable and...
  2. J

    Please help with SEVERE pots/dysautonomia; ANY tips appreciated

    Usually these protocols you have studied include supplementing sodium/potassium levels with something similar to a Gatorade (salt) and coconut juice (potassium + other minerals). You can also try to use your muscle pump to increase flow while laying down...including mild leg, butt and stomach...
  3. J

    Dr Enlander and OI using EECP

    I have always wanted someone to try this treatment and it seems he is starting :) http://www.youtube.com/user/denlander794#p/a/u/2/MVYpORKjJRQ http://www.youtube.com/user/denlander794#p/a/u/0/YoXsaGYXHV8
  4. J

    Atlanta Unfiltered - CDC insider to run research on chronic fatigue syndrome

    I certianly dont feel like I know what causes M.E. but I do know that what the CDC has done is flat out awful and it would be hard to defend ethically. History will show the evil that has been leaking from the CDC CFS program in an obvious and definative way but who has time for that? Its just...
  5. J

    Atlanta Unfiltered - CDC insider to run research on chronic fatigue syndrome

    I really think we should be asking those in power to remove all funding from the CDC CFS program. They have always used their CFS funds as a means to further humiliate patients with their psycho-nonsense and self-fulfilling negation "studies". M.E. patients would be far better off if the CDC...
  6. J

    BWG Phase Two Results - Webinar

    I remember Dr Darryl See doing a study showing patients had an average of 37.5 infections. My question would be if something is setting up the immune system to over produce antibody? For example, possibly a low level of transient reactivation that even happens in healthies could cause an over...
  7. J

    How many human pathogenic retroviruses are known?

    There are quite a few canidates for "pathogenic human retroviruses" but not accepted into the club yet. So unofficially, I think there is more but thats not a widely held view. One that has always peaked my interest and one we haven't heard much from lately is the JHK virus...
  8. J

    Gordon Medical Associates (Collaborator with WPI) - Mikovts lecture and XMRV Findings

    Exactly, that's why we really cant have the answers we really need for a rather long time.. we are still in "does it really exist in patients or not" exercises. Maybe a maverick will come in and set one up but I wouldnt hold my breath. I just wish science was more flexible and allow duel...
  9. J

    Gordon Medical Associates (Collaborator with WPI) - Mikovts lecture and XMRV Findings

    "Just to say 'well look that person has XMRV but they are healthy', is in fact possibly not accurate" I was actually referring to that fact that it makes it harder to prove causality because you will have to observe these people to see why they are not sick and watch them over time .. possibly...
  10. J

    Gordon Medical Associates (Collaborator with WPI) - Mikovts lecture and XMRV Findings

    pictureofhealth - Very well stated, great questions and valid hypotheses...that might be proven correct. Mikovits is brilliant!! She is asking the right questions and I think M.E. research has gain momentum because of her research. If only she was given the funds required to really test her...
  11. J

    Gordon Medical Associates (Collaborator with WPI) - Mikovts lecture and XMRV Findings

    The good news for Americans is they are legal and are available. I know a couple docs that will prescribe them for CFS when indicated by XMRV. The only catch is.. who is willing to risk themselves with so much uncertainty? There is not only the side effects/damage in traditional usage but many...
  12. J

    Gordon Medical Associates (Collaborator with WPI) - Mikovts lecture and XMRV Findings

    "Actually it does. The 2 other known human exogenous retroviruses (HIV and HTLV) are both causative for serious disease, and certainly not secondary infections. We know in mice that MLVs cause serious degenerative neuroimmune diseases." Unfortunately, this reasoning has nothing to do with...
  13. J

    Australian Neuro-immune center - Possible 'extremely significant' theory' for CFS?

    Thanks heapsreal. Here is a quote from a paper they published. I could be wrong but it seems the NK bright subset is playing a significant role in innate immune regulation whereas the NK dim is more cytotoxic. "Significant decreases in neutrophil respiratory burst, NK cytotoxic activity and...
  14. J

    Gordon Medical Associates (Collaborator with WPI) - Mikovts lecture and XMRV Findings

    Sounding more and more like a secondary issue rather than the primary cause. I think the only way this virus is going to be the cause of M.E. is if a situation arises that lets this virus run wild in the body... at which point we have to ask what happen to allow this? Genetic factor...
  15. J

    Spanish XMRV researchers to report Dec 9 on immune dysfunction

    Thank you for sharing this infomation with us.. Sounds like they are doing some top notch investigations there. If anyone knows anyone close to this research group then maybe they can ask them to set up a paypal or some way to donate that is a bit easier.
  16. J

    Spanish XMRV researchers to report Dec 9 on immune dysfunction

    The good thing is that there are so many legit virologist and immunologist involved now that whatever the verdict turns out to be..it will probably actually be the truth... I just hope when/if they discover XMRV is not the "be all" for M.E. that all these talented people and $$ don't fade out...
  17. J

    Spanish XMRV researchers to report Dec 9 on immune dysfunction

    "He says that what they have found is that in PWCs there's a deficit in the production of IgC antibodies" Do you think he might have said IgG? There have been reports of IgG subclass deficiencies... but often thought of as sub-clinical.
  18. J

    Spanish XMRV researchers to report Dec 9 on immune dysfunction

    CD8 Unless they are defining a specific subgroup with altered CD8 T cell numbers then it would be inappropriate to say M.E. has diagnostically speaking higher or lower CD8 T cells. They could also be refering to CD8 T cell function and not numbers. There is a subgroup of M.E. patients known...