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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. P

    Reason why women come down with CFIDS more than men?

    The iron study did not correct for luteal cycle, and was with ten women, 5 of which had a hysterectomy in the patient group. That is not a matched control. The men were fine, so it is irrelevant. I am pretty sure there is a better study that says some women are iron-deficient but that one is...
  2. P

    I wasted an extreme amount of $$ money for supplements with no effect

    Start buying your supplements at GNC - if they do not work, return them. If they don't have the one you need, well, it probably is not going to work anyways!
  3. P

    Reason why women come down with CFIDS more than men?

    Women produce a great deal more estradiol than men, which is directly immune enhancing. Further, the immune system changes during pregnancy to accommodate an embryo, so that is an extra factor men do not possess. Minor issues include self-report of symptoms and different ages of death.
  4. P

    Photopheresis to restore ME/CFS immune tolerance? (T-Cells / Immature DCs / Apoptotic leukocytes)

    Quick notes: the Klimas study increased pro-inflammatory cytokines in the transplant, it is the converse of photophoresis. The photophoresis results look similar to regular double filtration plasmapheresis. I would be cautious if suggesting photophoresis and ECP are comparable. Any UV will...
  5. P

    Post in /r/medicine

    It is a massively heterogeneous patient population with no known etiology or cure. Your next patient is in 8 minutes. The examples you mentioned? These doctors do not just dislike CFS patients, they don't like any patients.
  6. P

    Dr. Kaufman patients. Anyone Bartonella positive in Galaxy Lab being treated here?

    I have unrelated question but it would be much appreciated. Is it pretty easy to get an uber/lyft from San Jose Airport to Dr. Kaufmans?
  7. P

    Will the results of the Phase III Rituximab trials leak before publishing?

    Journals prefer you embargo your results fully. It is the journal's advantage of exclusivity. The vested interest of stockholders outweighs the journal preference, and in turn average positive results can be published in second-tier journals. F&M do not have such an obligation. Releasing them...
  8. P

    Working from Home

    99% of my income comes from one site, it is truly passive, and made $27,500 over 5 years for one hours work. I have approximately 40 other sites that I have made $111 from over 5 years (this is about break even for its investment). These stats are shown here, 2.4k visitors on Google, 12k...
  9. P

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Generally speaking, anything outside of the brain. Rapamycin could function differently in the periphery than it does in the brain, although no models used are applicable to CFS. Two spikes exist in CFS onset - the first being 18-22 that correlates closely with the age of first sexual...
  10. P

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I am not past begging anyone who will listen (my wife, this forum, my dog) that this disease in most cases is completely unrelated to the periphery, primarily in fast-onset patients. If you look at the reviews of CFS by neuro-anatomists they explain this in detail. It is repeated cytokine...
  11. P

    Anyone tried Nicotine chewing gum to increase dopamine levels ?

    I have used high-dose nicotine for six years. Some days the effect is subtle, other days it makes me feel awful. I have PM'd you.
  12. P

    Rituximab for MCS and CFS

    Hello, again. Could you please PM me the name of your physician?
  13. P

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I am discontinuing the rapamycin after 14 days; ultimately, it was not the panacea that was described earlier and I did not expect it to be.
  14. P

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I am on my second week of Rapamycin. I can't describe any further, as it will not be helpful in this early stage. I have quick viral onset CFS with classic symptoms, Tri-Guy.
  15. P

    Which difficult to obtain treatment would you most like to try?

    No problem, Jesse, I am always amazed at your hard at work at collating this information. Keep pressing. I'll update on the rapamycin thread. David's, that is impossible for me to say one way or another, but that being excess leukocyte debris would fit within the teleology of what I described...
  16. P

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I tolerated 3 mg of sirolimus well, that's 1 mg/20 kg and 1.3 per m2. I am taking it once per week. Treating drugs like wine, the earthy tones and general body feel of rapamycin are reminiscent of azithromycin. If I am completely cured, I will come back and tell. I'm not worse, that's for sure...
  17. P

    Which difficult to obtain treatment would you most like to try?

    Hi, David. You've certainly gone through the ringer. Thanks for being a pioneer. A subset of CFS is caused by a stressful event or genetic predisposition to deterioration of the blood brain barrier, causing an inappropriately localized response to the replication of neurotropic viruses (or any...
  18. P

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Coinrx.is has not sent the medication 8 days after paying for it, so I drove down to Mexico to get it, and they do not have it either.
  19. P

    High-frequency rTMS for the Treatment of Chronic Fatigue Syndrome: A Case Series

    If you really want this done, go to Thailand. My total cost was about $3000 including travel. There is not a strong as a psych lobby in the United States compared the United Kingdom in terms of CFS, so I do not feel victimized by the establishment. I received 40 sessions of rTMS theta burst. It...
  20. P

    Immunotherapy against EBV: Targeting EBV infected cells using immunotherapy

    Partial results from this trial (with vested interest) were disclosed on April 20, 2017, with 3 of 6 patients improving. It is an exceptionally weak trial design given it is Phase I. Lot of normal responses of marginal improvement you would see from a state-of-the-art MS drug but here is one...
  21. P

    Rituximab for MCS and CFS

    Thank you for sharing. You mentioned OMI, is there a reason other than fiscal you did not go this route?
  22. P

    A List of Worldwide Verified Rituximab Providers

    I know various sources of rituximab treatments do not wish to be made public, or are operating under individualized circumstances For CFS exclusively: - That one neurologist in China - OMI - Fluge & Mella
  23. P

    Explaining CFS Symptoms to Well People

    I say I get migraines. I have never had a migraine. It's not entirely incorrect, kind of like a full body migraine. Sorry true migraine sufferers, they seem horrible. But that's what I do.
  24. P

    CFS Research Study with Lumbar Punct - Upcoming CFS study with Dr. Baraniuk at Georgetown University

    I am in this study. I am spending a great deal of money to participate. I will be Facebook Live-ing my lumbar puncture, in case someone wants to watch a grown man or woman cry.
  25. P

    The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis

    RTX is talked about in the paper. I am not sure what you mean, here. I think you understand more about CFS than I do, but RTX would reduce viral load in the periphery, and as a result the CNS would have less of a reservoir for T-cell activation, since that interchange exists. The depletion of...
  26. P

    Looking for info on stimulants in CFS

    Using Fukuda criteria, dextroamphetamine improved attention and executive function. 1/3rd of patients found methylphenidate helpful at least occasionally. Which was an extension of this trial. Personally, I've found dextroamphetamine (pure, not Adderall) at 5-10 mg to have the least side...
  27. P

    Cytokine Inhibition in Patients With Chronic Fatigue Syndrome: A Randomized Trial

    I am only partially informed on the intricacies of patient selection criteria in CFS. The NIH study excludes people with CFS longer than 5 years duration, too. The cutoff was used because IL-1 is higher in recent onset patients. I know it is still run-of-the-mill pernicious data massage --- but...
  28. P

    Recommendations for doctors who use anti virals?

    Dr. Enlander - my insurance covered both the visit and the Valcyte was free (I don't remember if I applied with Roche or my insurance inexplicably covered it).
  29. P

    Has anyone achieved remission or recovery from treatment by any doctor?

    That's hard to delineate because if you've had CFS for less than six months, you're more likely to spontaneously remit. What is likely, however, is that if EBV is causal in CFS like some suspect, then early intervention with antivirals would impart some benefit. A small pilot trial of...