• 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

  1. BEG

    NIH intramural research program update

    @viggser I spend a good bit of time (health permitting) on Twitter. The tone of your writing here is completely different from that of your tweets. On Twitter you are demanding that the advocate community accept the "generosity" of the NIH and play nice-nice with them. With some twitterers you...
  2. BEG

    When does the P2P report come out?

    Please check this link for accurate info. about dates, etc. https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs/workshop-resources
  3. BEG

    Vote from Any Country for ME/FM Charity to Win $20,000!

    1,477 votes just a minute ago.
  4. BEG

    Bob Miller asking for comments to Dr. Oz

    I'm too brain-fogged right now to compose anything meaningful. However, it has occurred to me that it would be a good idea to keep a document on one's computer chronicling your personal story of illness and adding links from time to time which pertain to one's symptoms. Then it would be ready...
  5. BEG

    How do people manage their home support hours?

    Big hug, Tania. That's the catch-22 of it all. We must expend our own energy to get the kind of help we need. I have a house cleaner who comes every other week at 8:30 A.M. Before she arrives, I've already straightened the whole house including putting bathroom items in cupboard and off the...
  6. BEG

    Carnitine deficiency, other ways of treating?

    Mij, Thanks for that most helpful link. Brown-eyed Girl
  7. BEG

    Bob Miller ends hunger strike on a high note - stop mass emailing, new focus

    Thank Bob Miller on this thread and here: http://www.cortjohnson.org/blog/2013/02/09/ending-my-hunger-strike-with-accomplishment/#comment-1658
  8. BEG

    Mary Schweitzer's new blogpost

    Bumping. This is a must read. Follow the links to Jenny Spotilla's articles as well.
  9. BEG

    FDA declines to approve Hemispherx's Ampligen new drug application

    Hi Laurel, What exactly was the activity monitor that you wore? Heart rate monitor? Step counter? Something else? Thanks, Brown-eye Girl
  10. BEG

    FDA declines to approve Hemispherx's Ampligen new drug application

    Mary Schweitzer has also been helped by ampligen and has been very vocal about that and other ME/CFS issues at the CFSAC meetings. I'm not sure I've spelled her name correctly.
  11. BEG

    Bob Miller calls for NIH trial for Ampligen: phone & email to support his ongoing hunger strike

    Bob's status (as of 30 minutes ago) from Courtney Miller on Hunger Strike for Ampligen facebook page: Courtney: Bob's ok. More tired today, and taking a nap now. Be assured we're monitoring him well. He wants you to know the federal offices are hearing from everyone. Keep it up! We are being...
  12. BEG

    Cort's blog: FDA denial of Ampligen exposes out of touch agency; Hemispherx to appeal

    Yes, it is a good article. Thanks for posting this, Sasha.
  13. BEG

    Great Opportunity for Phoenix Rising to Represent the ME/CFS Community at CFSAC!

    Who are the advocacy team members at this point besides the board, obviously?
  14. BEG

    FDA declines to approve Hemispherx's Ampligen new drug application

    Bold is mine. Waverunner, you appear to be in the know about this sort of thing and it bears repeating. Over the last two years, I've watched my husband and a small team bring a patented product to market. For phases I and II, the money came out of their own pockets. The costs, however, for...
  15. BEG

    FDA declines to approve Hemispherx's Ampligen new drug application

    I can't see why the NIH of our cash-strapped, debt-ridden country will come up with the money to fund an Ampligen trial. We should implore Bob to begin eating. I'm still shocked by the news and not thinking straight, but I don't believe we should let this issue die.
  16. BEG

    Bob Miller's press release - do you have media contacts?

    Interesting. Their stock is down again, too. Forgot to mention that Diane Will said someone had already emailed her a PDF file which she thought was the press release that I sent her. She was driving and couldn't take a look at it. I sensed that Diane has empathy for Bob. Said, "So sad...
  17. BEG

    Bob Miller's press release - do you have media contacts?

    Diane Will called me. It seems the FDA gives/issues (?) PDUFA DATES at which time they give their yes/no to a drug. If the PDUFA DATE will be extended by the FDA, the company is notified. Diane says that she has seen extensions as short as 1 -2 days and as long as 4 -5 months, but that the FDA...
  18. BEG

    Bob Miller's press release - do you have media contacts?

    Just called Hemispherx Biopharma in Philadelphia. Said I was a CFS patient, and a fellow patient was on his 6th day of a hunger strike to get FDA approval for ampligen. Also said that the community was emailing daily to the FDA with over 750 people participating. I asked about an FDA meeeting...
  19. BEG

    Bob Miller on hunger strike: support him by emailing FDA about Ampligen - decision imminent

    Kati, with just a little reworking, this would make a great email. Even though you are Canadian, it speaks very well to the FDA.
  20. BEG

    Bob Miller on Hunger Strike: Send This 1-Minute Email to Get FDA Approval for Ampligen

    Done. Here is my submission to the Human Rights organization. It can also be tweaked to send to NBC, CBS, and ABC. Copy if you would like. An NBC affiliate in Reno, NV, ran a story about a CFS (Chronic Fatigue Syndrome) patient, Robert Miller, who is speaking out concerning the FDA's...
  21. BEG

    Bob Miller on Hunger Strike: Send This 1-Minute Email to Get FDA Approval for Ampligen

    (The book Merry mentioned by Gene Sharp is available for Kindle rather cheaply. When the Syrian revolutionaries were just beginning, they consulted with Gene Sharp, who, of course, recommended nonviolence, and told them they needed to change the system by working within its institutions...
  22. BEG

    Bob Miller on hunger strike: support him by emailing FDA about Ampligen - decision imminent

    Done. Thanks, Bob, for your willingness to take on such an extreme measure. Take care of yourself.
  23. BEG

    URGENT: Email the FDA about Ampligen now and daily – final decision is imminent

    Emails daily. Going to sign the petition now.
  24. BEG

    Dr. Charles Lapp

    The last I heard from friends who see Dr. Lapp is that Dr. Black is still there. There are several of us forum members in close proximity to each other -- just mentioning it. Think we have all been to Hunter-Hopkins probably because it is close by. I haven't been there in a number of...
  25. BEG

    FDA should give CFS patients access to Ampligen! --Online Petition

    And I wonder what % of patients will benefit? No ill effects? I was in Trial 516. I can tell you about ill effects. And it was confirmed, while I was attending a CFSAC meeting, by 2 ladies from Hemispherex who said to me, "we hear about this all the time," The drug company must find the...
  26. BEG

    Medical Sadism at CFS Central

    I went to a local support group meeting for Fibro and ME/CFS where the main speaker for the evening was a woman demonstrating Tai Chi. I looked on in horror as she stood tall, brought her arms overhead and proceeded to stretch them at all sorts of angles and also performed all sorts of postures...
  27. BEG

    Multi-site Clinical Assessment of CFS - CDC

    Yes, SOC, that is a nice objective viewpoint which I seem to lack when it comes to the CDC. You were very right on and nailed it with respect to seeing the positives and negatives. Thanks. However, weren't several of these clinicians previously involved in defining ME/CFS with the ICC...