• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. I

    Fundraising for Clinical Study for Potential ME/CFS Treatment

    Probably not since it has only been approved in Argentina. But I would sure try it if it were available in the US.
  2. I

    LDN

    inhouse.com in Vanuatu. Used them for years and they're very dependable. https://www.inhousepharmacy.vu Seems like they would be close to you, more or less. I recently stopped using LDN, just forgot then got lazy, and within 3 days my feet swelled up so much I couldn't get shoes or boots on...
  3. I

    Comment by 'Iquitos' in 'Anyone tried cannabis?'

    Yes, I use it regularly. I grow my own here in CO where it is legal. It is expensive if you have to buy it. The biggest thing it helps with is insomnia. The THC wears off in about 3 hours so I get up to go pee, use my bong and a dose of tincture (made from the whole plant, stems, leaves &...
    • Iquitos
    • Blog entry comment
  4. I

    Have you lost, gained or stayed the same weight?

    It would be interesting to know the gender of the respondents. I've read that men tend to lose weight with this disease, and women tend to gain. Don't recall where or when I read that.
  5. I

    New Blog By Dr Jamie: The Myth of Vaccine Safety

    @Valentijn "I'm not saying she's necessarily wrong about everything, but I have trouble taking her proclamations seriously, unless she has something substantial to back them up." Would this "proclamation" be substantial enough for you...
  6. I

    Does anyone know of a pain pill without food dye?!!!

    It's not a pill but medical cannabis is good for pain, especially menstrual pain. Queen Victoria of England used it for that.
  7. I

    Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

    @ Bob You said "I can't see the govt agencies ever rejecting this report wholesale." They don't have to reject it. The history of IoM reports on a variety of subjects is that the various governmental entities that paid for them simply IGNORE them. Which is not to say I don't agree with you on...
  8. I

    New Blog By Dr Jamie: The Myth of Vaccine Safety

    Dr. Deckoff-Jones doesn't "buy into" anti vax "propaganda." She's educated enough to form an opinion and as a doctor has seen for herself how some are harmed by vaccines. The cases won by victims of vaccinations and paid damages by the US government are not "anecdotal." Personally, I don't...
  9. I

    An interesting day

    Once again, it takes knowing someone with the disease for some people to "get it." @alex3619 I'm beginning to think this might be a turning point. Last week I had my first appointment with a new PCP. She said she didn't treat MECFS but she didn't act like she didn't believe it existed. Then...
  10. I

    An interesting day

    Actually it was written by Dr. Kent Heckenlively for the most part.
  11. I

    New Blog By Dr Jamie: The Myth of Vaccine Safety

    Kina said "I have to wonder why is all this anti-vax stuff consistently posted on Phoenix Rising as we are a site for ME/CFS." I'm not "anti-vax" -- I'm pro-truth and pro-choice. Do you disregard or disbelieve that many members of Phoenix Rising say they got CFS from a vaccination? And that...
  12. I

    Tenofovir, is it similar to cmx001?

    @heapsreal http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/000594/human_med_001113.jsp&mid=WC0b01ac058001d124 (of risks it says "....mitochondrial dysfunction (damage to the energy-producing components within cells than can cause problems in the blood).)
  13. I

    New Blog By Dr Jamie: The Myth of Vaccine Safety

    From the PBS interview of Anthony Fauci, head of NIH: http://www.pbs.org/wgbh/pages/frontline/health-science-technology/the-vaccine-war/anthony-fauci-risks-from-vaccines-are-almost-nonmeasurable/ Excerpt: PBS: There’s a lot of distrust of the NIH, CDC and the scientific community. What do you...
  14. I

    Tenofovir, is it similar to cmx001?

    Sorry, I must have read it elsewhere. I'll see if I can find it again.
  15. I

    Tenofovir, is it similar to cmx001?

    http://forums.phoenixrising.me/index.php?threads/mitochondrial-dysfunction-linked-to-neurodegeneration.36318/#post-574316 And this thread has info on the alleged damage to mitochondria of Truvada and other arvs.
  16. I

    Mitochondrial dysfunction linked to neurodegeneration

    If this is right it could help explain why treating us as depressed has been harmful and other treatments might also be helping cause the fatigue. He says antidepressants, antibiotics and analgesics all damage mitochondria.
  17. I

    "Very high levels of arsenic" in top-selling wines

    When I read the original story on this some of the commenters pointed out that you would have to drink 1.5 bottles of wine per day to imbibe the amount of arsenic that is permitted in 2 liters of drinking water. I think it's much ado about nothing. Unless you're drinking 1.5 bottles of wine per...
  18. I

    Effects of early childhood trauma on HPA axis function in CFS patients

    It's the attempt to make it into a psychosocial cause that is objectionable. There are other biomedical reasons for HPA axis problems. This "study" is just another waste of money, paid out to the psychobabblers. Just think of all the groups whose members have been "abused" in one way or...
  19. I

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    I am not a part of any group. I object to CAA claiming to be my "voice" when in fact it's a Trojan Horse. There are already other petitions calling for more research funding. I've signed. If you don't know the harm that CAA has caused us, and continues to cause us, that is really sad. Don't...
  20. I

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    Yes, they periodically adopt another persona so that they can fool those who don't know the history.
  21. I

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    And Kenney/McCleary was able to pay herself megabucks while the rest of remained impoverished by the disabling disease.
  22. I

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    Yes, It's no accident that their "scientific advisor" is Suzanne Vernon who used to be the CDC's Bill Reeves' sidekick and has her name on many of his "scientific" "research" papers, such as those supporting the psychosocial "causation" such as child sexual abuse and women's gynecology. Some of...
  23. I

    More participants still needed for Jason mortality survey - can you help?

    It would be a study to point those denigraters to, those who say this disease doesn't kill anyone. It seems to me that those who have lost someone to this disease have suffered partly because of the lack of recognition that this disease kills. I'm thinking of Sophi Mizra and her mother's...
  24. I

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    @Misfit Toy Charlotte, of Charlotte's Web fame, uses a product made here in Colorado by two brothers who do it for children with Dravet's-type epilepsy. It doesn't come from China. They grow it right here in Colorado and process it here. They actually use a special variety of cannabis, not plain...
  25. I

    Tremendous Success using Marijuana as Sleep Aid

    @Hip I have not tried adding commercially produced CBD to my cannabis. I feel like my 7% THC to 7% CBD medical cannabis varieties have sort of done this anyway. I have never had anxiety as one of my symptoms but I have noticed on user ratings that some varieties are claimed to be helpful for...
  26. I

    Tremendous Success using Marijuana as Sleep Aid

    Thanks @Wayne Yes, this is just how desperate a patient has to be to try cannabis, at this point in time. There are similar stories in various places around the world. But it's all "anecdotal" until researchers conduct those blinded trials. ;) There are several youtube videos featuring Rick...
  27. I

    Tremendous Success using Marijuana as Sleep Aid

    Yes, I agree the reduction in the ratio of CBD to THC has probably been inadvertent. I wonder whether your experience would have been different if you had had access to a low-THC variety with a ratio of 1:1 with CBD. The varieties I grow have a ratio of 7:7 in % of THC to CBD. I don't...
  28. I

    Tremendous Success using Marijuana as Sleep Aid

    @Wayne The "War on Drugs" was started by Tricky Dick Nixon as a way to disenfranchise anti-Vietnam War protesters. He commissioned a government study on it, the Shafer Commission, hoping to be told it's "reefer madness" all over again. The report he got said it's not a gateway drug, it's not...
  29. I

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Yes, it is quite possible to be allergic to cannabis. Hope you stop itching soon! On the other hand, it could also be a contaminant if the hemp paste originates in China where chemicals in soil and water are not controlled and hemp is sometimes used to clean up soils.
  30. I

    Tremendous Success using Marijuana as Sleep Aid

    Yes, THC is the compound that induces psychosis, IF psychosis happens. It doesn't affect most users that way. And yes, CBD does balance out the affect of THC. But there are dozens of other cannabinoids that we don't really know the affects of, that probably balance it, too. Skunk varieties...