• 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. catly

    The Synergy Trial: Ritalin and Micronutrients

    Yes, I was in the trial. I never found out if I got the meds or if I got the placebo, but after the trial I received several months supply of the K-Pax supplement and a prescription for Ritalin. I stopped everything after about 3-4 months as they did nothing for me, good or bad.
  2. catly

    Pilot study: "Identification of anti-citrullinated protein antibodies in ‪CFS‬" plus call for funds

    I test low positive for anti-CCP antibodies and have a + ANA as well as+ TPO antibodies and confirmed Hashimotos on pathology, I've seen 4 Rheumatologists in the NYCity Metro area in the last 4 years- they all just looked at my fingers and said, no joint swelling -- see ya, although 2 of them...
  3. catly

    Join call by 12 ME/CFS Orgs to HHS to act on PACE concerns: MEAction petition

    I signed and tweeted earlier today!
  4. catly

    ME/CFS people working full-time (or close to)? What is life like for you?

    I wish I could work from home occasionally... Working from home is the only way I could continue to work full time. I am so thankful I have that opportunity, but even with this accommodation, most days are still a struggle.
  5. catly

    Information Commissioner's Office orders release of PACE trial data

    Just tweeted, plz retweet & favorite
  6. catly

    NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    I want to also thank @leokitten for being so brave and advocating to his employer, and also for helping to keep us informed!
  7. catly

    Dr. Collins wants to mend fences - my call with him

    Good idea! Personally I want to thank @viggster for reporting this news and for his efforts to help make this happen. It took a small village of truly dedicated people, I think, to finally move the needle..now let's hope we've reached the top of the mountain and things will only get better...
  8. catly

    Next CFSAC Meeting - August 18th & 19th, 2015

    I only got to listen into the last 1.5 hours today and probably won't get to listen much tomorrow, so I just want to say thanks to everyone who posted a play by play for todays meeting:thumbsup:
  9. catly

    ME Action - 21st Century Cures Act - New Action Alert - Help needed AK, KS, KY, LA, MI, NJ, WY

    All I can say is YIPEE! I've been following 21st century cures for over a year now saying to myself--this is the perfect opportunity for ME, ME/CFS, SEID--whatever you want to call it--where are the advocates? I'm so glad someone is finally taking the lead. Unfortunately I don't live in any of...
  10. catly

    Social Media - Community advocacy fail. Why?

    I also haven't gotten a chance to read this whole post but have to say that I really like twitter. I followed all the news, political, health related organizations I could think of including all the NIH, HHS, CDC etc. institutes as well as major healthcare providers. I don't read much of my...
  11. catly

    New VP of Research at Solve ME/CFS Initiative

    @znahle Much appreciate that you reached out to spend some time with patients and that you hope to continue to update us on PR:thumbsup:
  12. catly

    FDA approves new type of sleep drug, Belsomra

    After crashing severely over 2 years ago--for no apparent reason--just that I could NOT sleep more than an hour or so day after day--I really don't care that much now if I'm "addicted" to Ambien. To me, not sleeping is worse. Fortunately I've slowly improved over the last year or so to where I...
  13. catly

    Dear Dr Collins, Can the NIH spare a few dimes? by ex Washington Post journo with ME/CFS

    @viggster Thank You for this, wonderful appeal! @Bob thanks for the links to the retweets--I retweeted them all, followed all of the tweeters and tweeted to a few of my favorites (21st century cures reps Fred Upton, Diana DeGette, my senators/rep, Morgan Fairchild etc.) I hope that this letter...
  14. catly

    Patience

    Lovely song@trickthefox, left a smile I my face!
  15. catly

    Is myalgic encephalomyelitis/encephalopathy an inappropriate name?

    Benjamin Natelson, who has probably been one of the most prolific researches with publications on ME/CFs focusing on neurology/neuropsychology, believes there is evidence for encephalopathy or brain dysfunction in at least a subset of patients. Odd how most of his research, largely funded by...
  16. catly

    Would you try Rituximab?

    I would go for it tomorrow--I fit the "auto-immune" subset profile with severe Hashimotos, + CCP, +ANA, sicca syndrome. Anxiously awaiting the phase II study results.
  17. catly

    New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

    Exactly, RA is a great example but so are treatments for cancer, hypertension, diabetes etc. It's the general rule, I think , for most diseases- hence the new buzz word sweeping the medical field is "personalized medicine".
  18. catly

    New VP of Research at Solve ME/CFS Initiative

    Hello and a big welcome Zaher! So glad to see you've joined the forum. I look forward to learning more about you and your work at Solve MECFS. Also ditto what @Bob said about bouncing things off us!
  19. catly

    Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause

    I haven't heard anything about the meeting with Fauci, would have been nice to get some feedback.
  20. catly

    Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause

    @beaker Thanks for retweeting--I retweeted all of you tweets:)
  21. catly

    Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause

    Morgan Fairchild could be the "celebrity" advocate we've been hoping for. In addition to having had MECFS, she reportedly has a deep interest in virology and is known as a major AIDS activist--I think she did testify in front of Congress on AIDS. She seems to have taken an interest in helping...
  22. catly

    Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause

    I did another round of tweeting this article yesterday to my usual list of congress people snd representatives. Basically I tweeted the link and asked "Can you help?" And I got a reply back from Morgan Fairchild stating she would try! I do hope she continues to say involved in...
  23. catly

    Help me compile a list of research-funding ME/CFS charities in each country

    Are you also interested in private foundations that fund MECFS research? The Chronic Fatigue Initiative (CFI) funded by the Hutchinson Foundation comes to mind. http://cfinitiative.org
  24. catly

    Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause

    I think many of the organizations on this list are research organizations representing specific diseases. I'm not sure if they are also advocacy organizations. The bill that has passed is very broad and includes funding an additional 10 billion dollars to the NIH over 5 years. I have a thread...
  25. catly

    Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause

    I tweeted my Senators and my representative. NO response as usual. I also tweeted the 21st century cures key players; Fred Upton (MI), Diana DiGette(CO) and Joe Pitts(PA). I got a reply from Diana DiGette saying that they are "working on MECFS and other diseases". But, I was kind of...
  26. catly

    New VP of Research at Solve ME/CFS Initiative

    I think this is great news and a wonderful addition to our scientific community, which seems to be slowly growing and strengthening now with Ron Davis and the End MECFS, the Stanford group with Montoya and Mark Davis, and Lipkin/Hornig at Columbia. Then there are a bunch of others in the US and...
  27. catly

    Treatments top specialists are using

    I also see Dr. Levine. She spent a good amount of time with me in the beginning (5/2013) and followed-up often with phone appointments and close monitoring of labs. Quite honestly, I don't need a lot of time with her any more, I just see her every 4 months of so so she will keep writing my...
  28. catly

    Realistically there is no cure?

    Just to put things into perspective, the US House Committee working on the 21st century cures initiative keeps quoting something like there are 7000 known diseases and we only have cures for 500. So we are not alone. The good news is they got approval, or are close to it , to infuse an...
  29. catly

    Need help for another member with CFS-help!

    Hope it helps.
  30. catly

    Need help for another member with CFS-help!

    Found this for PA. http://www.dhs.state.pa.us/fordisabilityservices/homelessassistance/index.htm