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

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Search results

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    MMS is it worth the risk?

    https://en.m.wikipedia.org/wiki/Miracle_Mineral_Supplement https://www.fda.gov/iceci/criminalinvestigations/ucm448541.htm WASHINGTON – A federal jury in the Eastern District of Washington returned a guilty verdict yesterday against a Spokane, Washington, man for selling industrial bleach as a...
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    MMS is it worth the risk?

    Hello @Wayne I thought I would add another link, from the United States Department of Justice. Do you want to make any comments about your involvement in promoting MMS? https://www.justice.gov/opa/pr/seller-miracle-mineral-solution-sentenced-prison-marketing-toxic-chemical-miracle-cure...
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    MMS is it worth the risk?

    Hello @Wayne Since you seem to be the "go to" person for MMS, can you comment on the FDA "Proposal to Debar"? Are you familiar with Project Green Light? Are you still recommending that MMS be marketed and sold? https://www.fda.gov/regulatoryinformation/foi/electronicreadingroom/ucm530843.htm...
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    Dr Nath's intra-mural study at NIH is currently recruiting

    Thank you for keeping us informed on NIHs progress in the ME intramural study. I applaud the work that NIH is doing! And as a bonus, they are moving at a faster pace than originally planned. Do you know if there will be any data sharing between the newly announced NIH grant funded ME research...
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    Dr Nath's intra-mural study at NIH is currently recruiting

    Great news!! NIH is stepping up to the plate! Thanks for all the advocacy work you do!
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    False hope?

    I can't offer you advise, it's a personal decision. I can speak regarding my journey. I always had hope, found a great doctor, and have been taking repurposed meds for several years. My health has improved, and I am very happy.
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    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    Done :) (Unfortunately I don't know how to use the strike thru font)
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    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    I think its fair to express ourselves, here on PR, in the same way we did about the PACE researchers. Are you saying we need to have a double standard?
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    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    Hi @Research 1st I read the translated articles, and formed an opinion. So you are saying that KDM is not being investigated by the Belgium government? I am not clear what data in the articles you are disputing? I am not familiar with the laws in Belgium, nor their statute of limitations. But...
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    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    How do you know how much money KDM has or does not have?
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    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    That's fair. I will wait for a guilty verdict, before I refer to KDM as a scammer. Two years is a long time to be locked up.
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    Solve ME/CFS Discovery Forum 2017

    Thanks @znahle It's great to get some balance here on PR, regarding directly communication from other non-profits for ME. From what I read, Solve is focused on being both proactive and positive advocates for ME? I am asking this because I have a distaste for orgs that focus attention on...
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    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    It's hard to understand why anyone would take him seriously after doing some research on his sordid past? Why don't patients take legal action and ask for their money back?
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    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    Old post "Makes sense. Another ME scammer that took advantage of desperate sick people, to pedal his own line of snake oil. No wonder people on PR are skeptical, and push for published, peer review research." Edited: New Post: After reading the articles posted in this thread, KDM appears to...
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    "Unrest" updates

    Unrest will be available to purchase on iTunes beginning October 10th FiveFootTwo is available to watch on NetFlix. https://www.unrest.film/watch#iTunes
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    "Unrest" updates

    Between Unrest and FiveFootTwo, I feel more hopeful about reducing the stigma for ME and Fibro
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I agree that in my case the brain is a symptom, not the cause. And if study meds/interventions can show improvements in before and after images, then I fully support this approach. Patient self reports are unreliable.
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    Solve ME/CFS Discovery Forum 2017

    Excellent mixture of folks to discuss the upcoming challenges. Edited to add: Are ME patients included in the speaker list?
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    Flu vaccine and ME/CFS - MEA info leaflet for 2017 - 2018 vaccine

    I would rather risk the chance of getting the flu, than risk the chance of living with any permanent damage associated with the vaccine. I usually try to be careful and avoid getting into situations where I could catch the flu.
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    "Unrest" updates

    Lady GaGa is ill and unable to perform; she is only 31 years old. She's either cancelled or postponed parts of her Joanne World Tour. (In the five foot two documentary, she talked about why she dedicated the tour to Joanne). She plans to get back on the stage on November 13. But as you could see...
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    Revisited - Does ME/CFS more closely resemble an autoimmune disease or a chronic infection?

    Tests done by the very best: ARUP Labs, Salt Lake City, Utah :)
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    Revisited - Does ME/CFS more closely resemble an autoimmune disease or a chronic infection?

    If I had tested positive for entero then I would have interviewed Dr Chia as a potential doctor to treat me. So how would he be able to say that entero is the common cause of ME, if he has not seen patients like me? I feel that for some people entero is a huge factor. But from my lab results...
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    Revisited - Does ME/CFS more closely resemble an autoimmune disease or a chronic infection?

    IMO, different things can trigger ME at the onset. The published research is in its infancy, and I don't think we can draw any broad range conclusions that apply across the board. I don't respond to treatments in the viral or autoimmune category, so my vote for myself, is it's neither.
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    "Unrest" updates

    @CFS_for_19_years I remember that story. Didn't recall the group name. So sad.
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Thanks! It was buried in there. When/if she replies to the 3 questions about using IOM, do you mind letting me know?
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Please send me the link to the FB page so I can read the post I checked her personal FB page and the Bateman Horn FB page. I can't seem to locate the post you are referencing. Thanks!
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Hi @Nielk I am looking at the form to participate in the research, don't know which specific study though, but don't see anything mentioned about the criteria used. https://batemanhornecenter.org/how-to-participate/ Do you have a link? Thanks!
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I am very pleased to see the NIH fund the research centers. As I recall a lot of effort went into this, both pitching the concept and designing a plan. Dr Montoya was a big advocate of the research centers. I don't see Dr Montoya nor his family members, nor anyone from the Stanford Fatigue...