• 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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  1. starryeyes

    "Facts about COVID-19": Swiss Propaganda Research Article

    And the responses I'm getting are why I really can't be here. I'm just trying to give you factual information that I feel needs to be known, make of it what you will but you might want to actually click on the link and really read it first. I'm just trying to find the truth like everybody...
  2. starryeyes

    "Facts about COVID-19": Swiss Propaganda Research Article

    Covid-19 Facts (Ironically called Swiss Propaganda): https://swprs.org/a-swiss-doctor-on-covid-19/ Excerpt: Professor John Oxford of Queen Mary University London, one of the world’s leading virologists and influenza specialists, comes to the following conclusion regarding Covid19: „Personally...
  3. starryeyes

    Some Coronavirus Patients Show Signs of Brain Ailments

    Thank you for posting this Annikki. With all that's going on it's really hard to keep up. Now we know what other signs to look for in ourselves and loved ones. Take care.
  4. starryeyes

    Another ME death on April 29th 2019: Jacquie Beckworth aged 23

    RIP Chronically Jacquie. Someone asked why she was tube fed? I believe it was because she was suffering with distressing intestinal symptoms on the daily. She felt so much better being tube fed, and she did most of the work involved in her tube feeding herself. People think she had...
  5. starryeyes

    What Can I Say To My Fibro Doctor?

    Thanks, Valentine. I haven't been able to handle the drive to the peninsula so I may just be stuck with my doctor, but I might be able to try it again. It's too bad the traffic has gotten so much worse here, I can't be in the car that long, not even as just a passenger. I've given him papers...
  6. starryeyes

    Can weed cause Chronic fatigue?

    Hi Wolfcub, can you tell me which painkillers you can tolerate? I'm super sensitive to all meds like you and since we both have ME, maybe I can tolerate meds you can. I just want to have something I can use for things like surgery besides Ketamine cream (which doesn't go into the bloodstream)...
  7. starryeyes

    What Can I Say To My Fibro Doctor?

    I'm mostly bedridden with moderate to severe ME and Fibro plus the worst case of endometriosis the lab at Cedars Sinai has ever seen. My Fibro doctor who I have to see for disability tells me like you would talk to a kid that I just need to make up my mind to start exercising. I've been trying...
  8. starryeyes

    SF Bay Area Primary Care Doctor Recommendations

    Dr. Barbara Bishop is an internest and she's understanding about ME. Address: 1580 Valencia St # 201, San Francisco, CA 94110 Phone: (415) 550-0811 She knows she can't fix ME. She's good for a regular PCP and disability for ME.
  9. starryeyes

    Does anyone have experience with Talia Gracer, MD (Bay Area)?

    Dr. Barbara Bishop is an internest and she's understanding about ME. Address: 1580 Valencia St # 201, San Francisco, CA 94110 Phone: (415) 550-0811 She knows she can't fix ME. She's good for a regular PCP and disability for ME.
  10. starryeyes

    XMRV YouTube Video

    Thank you very much everyone. I'm so glad you liked it. That inspires me to make more videos. starry
  11. starryeyes

    XMRV YouTube Video

    Hi All, I made a YouTube video celebrating the XMRV finding in PWME: http://www.youtube.com/watch?v=3XOor24YYmw
  12. starryeyes

    Whittmore Meets w / Mrs. Obama

    This is great news. I really hope that something good comes from this for us all.
  13. starryeyes

    A good disability attorney

    This is another great source of information: http://www.disabilitysecrets.com/ Actually, I would make copies of the CFS Symptom Chart on this page as many of the notes are already there for you and just circle and color in what's appropriate at the time you fill it out. I filled them out...
  14. starryeyes

    What do you eat for breakfast?

    I eat a half a chicken burrito for breakfast everyday. What?? I live in California. There's a Taqueria on every corner. :cheeky grin:
  15. starryeyes

    Evidence Aside, Drugs First Choice for Insomnia

    I have to say I like this title which shows this much on the front Forum page: Evidence Aside, Drugs First :cheeky grin:
  16. starryeyes

    Comment by 'starryeyes' in 'Need a little help please'

    Hi Jimbob, Is this the CAA's Biobank?
  17. starryeyes

    A good disability attorney

    I suggest not using a Disability Attorney. They'll only make you do all the same work you have to do to get Disability anyway and then they'll get some of your money. Disability Attorneys give great advice to follow to get your Disability; State or Private plus there are comments at...
  18. starryeyes

    Cleveland Clinic & XMRV & CFS doctors?

    Hi Fern, It's good to hear that the CC have a doctor who gets that our mito aren't working properly. I hope you have a good experience with the other doctor you see. I'm looking forward to hearing how it goes. It would be great if they test you for XMRV.
  19. starryeyes

    Comment by 'starryeyes' in 'hiding'

    :smiley-hug: Maria. I hope you start feeling better soon.
  20. starryeyes

    Chronic Pain Campaign website

    I like how they made it look like we were wandering in a maze with the writing on the walls.
  21. starryeyes

    German study finds xmrv

    I've been thinking along these lines. They still need to find DeFreitas's CAV again too as that is another retrovirus that was found in us. Since it sounds like XMRV is being found in other illnesses maybe you need XMRV and CAV to end up with ME/CFS. Once they find CAV again they should be...
  22. starryeyes

    emergency report from China

    I can relate. I'm a walking difficulty too. That is a great way to describe us.
  23. starryeyes

    emergency report from China

    That's fascinating Rosemary. I wonder if that has implications for us. She's lucky she had a sister willing to do a bone marrow transplant.
  24. starryeyes

    Nevada News Makers interview with Annette and Dr. Donnica Available for Download

    Thank you for transcribing Dr. Donnica's remarks Koan. I don't have the energy to transcribe much but I did want to quote Annette Whittemore saying: I'll say. Wow! Also, what Dr. Donnica said is very true. It costs more to not treat us as many of us live for decades in a disabled...
  25. starryeyes

    German study finds xmrv

    Thanks for sharing free and Stone. I think we also need to remember the large number of children who have severe ME/CFS. Most likely their bodies were not run down by adolescent or adult activities.
  26. starryeyes

    Show Your Socks!!!

    Those pictures are wonderful Spin. :Retro smile: Thanks for sharing, it's almost like being there. :smiley-hug:
  27. starryeyes

    Im sad

    Having CFS makes me feel lost like Alice: But I'm so glad I get to be here with all of you here who understand what it's like to be mad and sad about being ill: :smiley-hug::smiley-hug::smiley-hug::smiley-hug::smiley-hug::smiley-hug::smiley-hug: starry
  28. starryeyes

    Comment by 'starryeyes' in 'Beached whales, dental hygiene and wabbling'

    Maria, I'll admit, with that title you got my attention.
  29. starryeyes

    Epicanthal eye fold?

    I have this and I know it's from CFS and you're right, extra sleep doesn't help.