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    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. Revday

    Should People Conform to Our Disability?

    Dear people, This thread reads more like a slam book from Jr. High. It's awful you should talk about your friend like this. And some of you know her? How awful for her. I have found that those who will suffer in silence areoften embarrased by their limitations, like to feel like victims, or...
  2. Revday

    Demonstration at the CDC

    I don't know if this has been discussed. Too tired to read all. Act Up did Die In's at public places of interest have been thinking about Sick Ins for some time now. Like the front of the door of the CDC. Maybe chained to the door will get the police involved, Be prepared for arrest with...
  3. Revday

    Vancouver Canada

    [O.M.G., I'm rich!----Silver in the Hair ----Gold in the Teeth----Crystals in the Kidneys----Sugar in the Blood----Lead in the Ass----Iron in the Arteries----And,an inexhaustible supply of Natural Gas. I never thought I'd accumulate such wealth - helen41 Very funny and so true!
  4. Revday

    Article: A Hitch in its Step: PACE Trial Indicates CBT/GET No Cure For CFS, 60% of Patients Show No

    This question has probably already been answered but... Have these or any other researchers just given their cohorts antidepressants and then record if they recovered throughly? It seems counterintuitive not to try this route. My guess is that would be too easy.
  5. Revday

    Retrovirology Publishes Five Papers on XMRV and Contamination

    Like SilverbladeTE and Max said... When we stop acting like those that hold power just don't understand and start demanding that the cover-up be uncovered, then we could get further. We need to reserve our energy for fighting against their ghastly, obvious complicity in our suffering and our...
  6. Revday

    Retrovirology Publishes Five Papers on XMRV and Contamination

    I have believed for some time that ME/CFS is a bio weapon. I know it sounds crazy. I believe the experts at the CDC and in the UK aren't stupid, simply mistaken, or uninformed properly. They have been covering up something about ME/CFS for 20 plus years. It's interesting you found Murdock (King...
  7. Revday

    Article: ME/CFS Orgs Petition the CDC For Change

    Huh? "Phoenix Rising is not on the list of organizations that signed the letter; we had a few issues with it that we couldn't resolve..." Who, What, Where, Why, and How please? :sofa:
  8. Revday

    Article: The Golden Girls: our reality in a humorous context

    Thanks for posting. I may watch it over and over today. :In bed:
  9. Revday

    Retrovirology Publishes Five Papers on XMRV and Contamination

    We need more links to journalists andf build a network of Dr.'s that will quickly and widely refute this political kind of horse play. Maybe someone will be well enough to follow the money and find who or what is behind these efforts to dismiss ME/CFS as legitimate? I know... I know... something...
  10. Revday

    Sound Sensitivity Causing Panic Attacks

    I freaked out Sunday all over my nursing aid because when she returned from an errand, with her adorable four year old, I could not take the sounds of the cartoons anymore. Light is giving me neuropathy in my eyeballs. Sound feels like a cold wet blanket that has been dropped on me from a high...
  11. Revday

    Comment by 'Revday' in 'How sexism gave men a "woman's disease"'

    Wonderful. Feminist philosophy.... It's nice to read some from another member. ME/CFS has been joined seamlessly to sexism, for me, since the beginning. I Think that ME/CFS is cutting edge for a shift in men's conscience about women. lol. I am reminded often of a book, I think Virgina Wolf...
  12. Revday

    Comment by 'Revday' in 'I should be happy, but it is killing me'

    :sofa: Grief comes in like a tsunami. Then the waves keep messing things up. Finally the waves calm down and the grief recedes. I have struggled with my own anger/grief and come through to acceptance. And I know as it has been for so long grief will come again and I will learn something new...
  13. Revday

    The Wheelchair Question...

    Back in the day, in the years when I first came down with CFS/ME and could still work and walk and stuff I said something to a dear man that was dying due to HIV. He told me he didn't know if he could use a cane. I said please use what you need honey cause pain may be a part of Life but...
  14. Revday

    Anyone else seem "immune" from colds and viruses?

    Lordy, I'm one of the catch anything that flies by me. :sofa:
  15. Revday

    Article: Report From the OFFER 2010 Conference

    I enjoyed your post. Help me understand what your saying about doesn't progress past a certain point. I know my illness has increased in severity for the past five years and I've had CFS since 1986. I'm now recliner or bed bound most of the day. Thanks. :sofa:
  16. Revday

    T-shirts to raise awareness and funds

    Hi all. There is a t'shirt on GLeenz that I have always liked. The idea is funny and thoughtful without being maudlin or too cutesy. I think it could be the basis of one for us. http://store.glennz.com/slowingdown.html It's the one with the super hero on a mobility scooter. I wonder if Gleez...
  17. Revday

    Article: Clinical trials now!

    Brass ovaries indeed! :sofa:
  18. Revday

    Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Populat

    There is a measurable factor that is wide spread among those with several personality disorders. Persons with these PD's can not take responsibility for their actions or the consequences there of. Their coping mechanism is to see others as having the same issue that they actually have. This is...
  19. Revday

    Article: Who's In? and Who International XMRV Workshop

    How nice for them. While we have suffered and died "they" don't want to step on anybody's (fragile ego-driven) face? Although I understand and respect your reasoning you do not appear cognizant or very empathetic to the CFS community's ugly historical experience. Please don't blame those of...
  20. Revday

    I Contacted CDC re False Info on XMRV Site

    CDC Website Inquiry This is the response that I received from the letters to the CDC: RE: CDC Website Inquiry From: CDC-INFO <CDCINFO@cdc.gov> Add to Contacts To: xoxoxoxoxoxoxoxoxo Thank you for your submission to CDC-INFO. Your comments have been forwarded to the appropriate...
  21. Revday

    I Contacted CDC re False Info on XMRV Site

    Did It. I've sent this letter as well as the first (tweaked) :winking: to the email recipients you've suggested. Thank you for your work.
  22. Revday

    Comment by 'Revday' in 'XMRV at the Fed: Conspiracy or Confusion?'

    :sofa::victory::smiley-hug:
  23. Revday

    FDA/NIH XMRV paper ON HOLD

    I cut my political teeth during the Vietnam Conflict, so I have what y'all might call A History. Question: Do government officials lie? Answer: Are you kidding me? Where have you been for the last ten -thirty years? Although I am too sick to join in fully I needed to say that. What I know...
  24. Revday

    German study finds xmrv

    If this has already been posted my apologizes. These two statements are in the CDC post of the research. http://www.cdc.gov/eid/content/16/6/1000.htm The CDC web site has place to email the authors with comments. I think it might be important that others respond to these misleading...
  25. Revday

    Article: The Committee on Itself: the CFSAC Comittee on XMRV, the CDC, Its Charter a

    Thanx. Thank you Cort for your response. It helped me to understand the lay of the land. I sure appreciate you and all the others who can stay so informed. Politics makes me nuts, obviously Your a light in the CFS medical black out here in Atlanta. :sofa:
  26. Revday

    Article: The Committee on Itself: the CFSAC Comittee on XMRV, the CDC, Its Charter a

    Not so much. Cort I appreciate the work you do. Your reports are informative and even uplifting. I don't have that agenda or energy and I am trying to live with this colossally devastating illness that day by day takes more away from me. I am scared but more then that I am disgusted with those...
  27. Revday

    Comment by 'Revday' in 'Lightning Strikes a CFS Patient'

    The inclusion of NLP techniques caught my eye. I can't find it again but I know it is here in the comments. I have practiced most of the techniques of NLP for about 28 years. I've found that they can be helpful in making changes to personal history, feeling nature, and phobias but I would be...
  28. Revday

    Comment by 'Revday' in 'Fighting the Insensitivity of Others'

    Kevin I too have dragged myself to doctors only to have the same awful experience as the last one. Insanity is doing the same thing over and over expecting a different result. So I have done something different. If I need a doctor for scripts or have caught yet another bug or have extra-florid...
  29. Revday

    XMRV CFS UK study #II

    Thank you Donna.