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  1. Merry

    Controversy on Rituximab

    I appreciate your enthusiasm, loki, but we're taking the thread off topic. Let's continue this discussion in a private conversation, or you can start a thread on curcumin.
  2. Merry

    Controversy on Rituximab

    @loki, I'm glad that curcumin made such a difference for you. I haven't heard of anyone else enjoying such striking success with curcumin. I took capsules for more than a year and didn't see any difference at all. My best wishes to you for continued improved health. Please take care.
  3. Merry

    Controversy on Rituximab

    No need to apologize. I mistakenly guessed that "loki" is a female name, then I checked your profile -- and Wikipedia. Whitney is so very ill that I can't imagine that curcumin could make a difference. I don't know what he may have tried in an earlier, less severe stage of illness. I can't...
  4. Merry

    Controversy on Rituximab

    If by "she" you mean Whitney, let me point out that Whitney is male. Or perhaps you mean his mother, Janet. I wouldn't know what has or hasn't been tried, and I wouldn't presume to advise the family and Dr. Kogelnik on treatment.
  5. Merry

    Controversy on Rituximab

    I read that Whitney did try Rituximab, but I can't remember who said that. His mother, Janet Dafoe, has posted information about his treatment on Facebook and on Health Rising. Or maybe Cort, who has, I think, met the family mentioned that Whitney tried Rituximab.
  6. Merry

    Controversy on Rituximab

    For Harriet Hall to write about Whitney Dafoe and his family and Dr. Kogelnik in this way, based on supposition (gossip passed to her by a female Phoenix Rising member) is really shabby. She even offers Whitney's forum userid to the world. Geez. The gossip in me would certainly like to...
  7. Merry

    Stream "Forgotten Plague" free, limited time

    You are most welcome, @Folk. I, too, hope that people besides patients and caregivers see the film. The general public, including clinicians, still don't get how seriously debilitating this illness is. The interviews with patients and caregivers were moving -- even depressing, yes.
  8. Merry

    Stream "Forgotten Plague" free, limited time

    Oh. Sorry. If I hear of another opportunity to watch the film free, I'll contact you.
  9. Merry

    Stream "Forgotten Plague" free, limited time

    Although I couldn't, after entering the password, get the video to play directly from my post, when I clicked on Vimeo, I could play the video on the website.
  10. Merry

    Stream "Forgotten Plague" free, limited time

    @Cort, it's not 7 pm EST yet. The film is just over an hour.
  11. Merry

    Stream "Forgotten Plague" free, limited time

    The new ME/CFS documentary "Forgotten Plague" is available now through 7 pm EST (12 am GMT) Monday, the 18th, on Vimeo. Link: Password: forourfans My source of information about this...
  12. Merry

    MedPage Article Says "Real Answers Needed" For ME/CFS

    Oh, thank you, @Cort! That's a great response. I didn't trust myself to post a calm response or one that made sense. I googled to find out who H. Robert Silverstein, MD., is and am astonished to discover that he's grew up in the county seat of the same rural Ohio county where I grew up...
  13. Merry

    MedPage Article Says "Real Answers Needed" For ME/CFS

    Good article, but I wish someone would challenge the comment by H. Robert Silverstein, MD, who insists that patients suffer from a false illness belief and a sense of entitlement and can only recover if they exercise (and change diet -- no potatoes!). He claims that patients get ridiculous...
  14. Merry

    No to Genes for Good data for Dr. Klimas crowd source

    Ana at ME/CFS Genes, one of Nancy Klimas's research projects, wrote today in response to my question about whether or not the ME/CFS Genes project can use raw data from Genes for Good: The thread that discusses the request from Dr. Klimas for raw data from companies that analyze genetic...
  15. Merry

    PACE trial a Trojan horse for Dept. of Work and Pensions?

    Researchers asked participants for information that was irrelevant to the research but might have been useful to those investigators who had worked, or were working at the time of the trial (Peter White?), as consultants to insurance companies.
  16. Merry

    PACE trial a Trojan horse for Dept. of Work and Pensions?

    Although participants were promised that their data would be secure, the staff failed to follow through.
  17. Merry

    PACE trial a Trojan horse for Dept. of Work and Pensions?

    Dr. Speedy posts at his blog, The NICE Guidelines, more information, written by Margaret Williams, on the lack of guarantees of confidentiality for PACE trial participants: http://niceguidelines.blogspot.com/2015/12/just-when-you-think-it-cant-get-worse.html
  18. Merry

    Stat News reports on James Coyne's request for PACE data

    John Henry, owner of the Boston Globe, started Stat News to carry news on the life sciences. In today's issue Ivan Oransky and Adam Marcus report on James C. Coyne's request for data from one of the PACE studies.
  19. Merry

    ICD Code Bizarreness

    The link, unfortunately, didn't take me to the list of bizarre codes. I could use a laugh. Maybe this link will work: http://www.prohealth.com/library/showarticle.cfm?libid=22111 Yes!
  20. Merry

    Aspartame Can Cause Fibromyalgia!

    I recall that years ago when someone offered one of my brothers a diet soft drink, he said no to it with the explanation that aspartame gives him a headache.

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