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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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Search results

  1. D

    Research studies re CFS patients 'Typical Day" with out regard to variation.

    This is still ignored and may be one of the keys to understanding the pathophysiology. Any study or survey whose data doesnt take this into account might so too flawed to be meaningful.
  2. D

    Depression Poll

    I assume it wasnt my post that was upsetting you...right :=} again bravo. I was also particularly touched by the recent suicides of young people. To me suicide is something to learn from as a sign of a failure someplace, suffering not acknowledged, signs ignores, help not offered, someone...
  3. D

    Depression Poll

    Bravo for your courage. Every other group of people with chronic illness and dissablities have higher rates of depression and suicide than healthy counterparts. How is it as a group we are any different. Bravo for accepting your illness and " knowing" you are sick" and not being afraid...
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    Name preference? CFS, ME-itis (2 versions), ME-opathy, SEID, or Ramsay

    You are right. For some unclear reason they differentiated CFS from idiopathic CF by the difference of having 3 instead of 4 out of 8 symptoms. One symptom less and you had simply chronic fatigue instead of chronic fatigue syndrome. I don't understand why they did this. It has not been of...
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    Name preference? CFS, ME-itis (2 versions), ME-opathy, SEID, or Ramsay

    Idiopathic is a good old fashioned simple term understood as signifying a real disease by all clinicians, researchers and scientists. It should be included as part of the name for our thing.
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    The IOM clinician's guide is out

    Comments limited to the "Clinicians Guide" re diagnosis. Not a bad start esp since the greatest need has been to convince clinicians that ME/CFS is a severe, systemic, idiopathic physiologic dysfunction, meaning of unknown origin. Beyond that, since this is chapter is to help clinicians make a...
  7. D

    Article: Dr. Mikovits and Dr. Racaniello on XMRV

    Cort....you should sign this one with your last name. I understand it and so far it seems to make some sence and I am not a virologist.... Good work
  8. D

    CFS Blood Bank Drive

    ditto what she said.....
  9. D

    Chronicfatiguegate.....

    It has a certain ring, doesnt it?
  10. D

    sleep meds

    Warm milk. Really. The tryptophans are activated by heat and within 20 minutes after drinking it, you are asleep....... An evolutionary solution. Warm milk made babies sleepy so their fussing wouldn't alert nearby tigers or whatever. It helped keep baby and mother safe.... It is...
  11. D

    Conflicting Papers on Hold as XMRV Frenzy Reaches New Heights

    Very good advice. From my experience, I also would add, that if you are asked a question that you dont want to answer, don't answer it, just answer a question of your own. In other words, many reporters really are not listening to what you say, they are getting the next question ready...
  12. D

    FDA/NIH PAPER IN LIMBO; PATIENTS UNITE, by Mindy Kitei

    Mindy is walking point on CFS. Great straight reporting. She will be in the running for a Pulitzer if this keeps up. CFS CENTRALS STORY NEEDS TO BE DISSEMINATED AS WIDELY AS POSSIBLE.... It speaks for itself.....
  13. D

    Research studies re CFS patients 'Typical Day" with out regard to variation

    One way to evaluate any study of fatigue is to ask yourself how they looked at activity levels. Did they take variation into account. If they didnt, time to put on your skeptic hat.....This is an example of how not to do it.... Originally Posted by glenp 4. The...
  14. D

    Nature.com report that Alter paper reviewers want "additional studies"

    TYPICAL DAY ????? Any study of CFS that asks patients questions like this ignores the periodicity of the disease. This can't be stressed enough.....You can be good one day, and bedridden the next. Any analysis based on these questions that try to get at exhaustion levels will be...
  15. D

    CFS Central - Q and (no) A with CDC SCIENTISTS

    sorry that i offended you by saying i sensed frustration. I was just projecting my own feeling of frustration.
  16. D

    CFS Central - Q and (no) A with CDC SCIENTISTS

    You are getting at something very important. Many of us had lived a long time before we had CFS. We had had all sorts of infections from flu's to ameobic hepatitis infected teeth, concussions, gunshots and broken bones. Then we got our thing. No question about it. It was startling, like...
  17. D

    CFS Central - Q and (no) A with CDC SCIENTISTS

    I respect your opinion and sense your frustration however there are acute or slow onset to many of the same diseases in medicine. It is part of any medical history given to medical providers. Sure it is self reporting, but so is all medical histories.... and this information can be collected...
  18. D

    CDC XMRV Retrovirology Study on CFS Published

    I have a bit of experience in this venue.....pm me...
  19. D

    CFS Central - Q and (no) A with CDC SCIENTISTS

    you raise a good point. I know within five minutes of talking to anyone if they have the same thing as I have....This doesnt mean that I know if they have CFS, all i am saying is that I know if they have my form of CFS. Five minutes...guaranteed.... Maybe I should start my own cohort....
  20. D

    CFS Central - Q and (no) A with CDC SCIENTISTS

    I understand acute onset. I was at work, perfectly well one day over 20 years ago about to go into a meeting. Then suddenly, really suddenly, I can time it within five minutes, I told my colleagues I was feeling so bad that I had to go home. It was pain, fog, exhaustion. All at once and...
  21. D

    Nature.com report that Alter paper reviewers want "additional studies"

    I dont think that the National Academy of Sciences could be intimidated by CDC. They are in different leagues. As previously stated previously The Proceedings of the the National Academy of Sciences (PNAS) has confirmed that they have two different tracks to publication, one for members...
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    Nature.com report that Alter paper reviewers want "additional studies"

    We are on the same page.....if this was about some virus in mouse baldness....it would not have it sent out for more action. I agree... Pure science is supposed to be apolitical, real science as practiced in the world is not.... esp when it has impact on health policy....
  23. D

    Nature.com report that Alter paper reviewers want "additional studies"

    With headlines like this in Nature about a putative positive study being held back because of outside pressure, (no matter how "scientific" the reason ) it definitely means more money, I think there will be more funding for other studies, , perhaps even money coming from CDC...... It...
  24. D

    Nature.com report that Alter paper reviewers want "additional studies"

    The petition requests to "Tell the DHHS to allow the NIH and FDA to publish their papers without undue procedures and hurdles." I appreciate the thrust of the petition and think it could be useful, however it seems that the non publication of the paper is the result of the PNAS asking for...
  25. D

    Nature.com report that Alter paper reviewers want "additional studies"

    Nature puts out story with headline "Chronic fatigue findings were held back" and says that the PNAS reviewers of Alter paper are asking for the additional studies before it will publish the paper. If true this is big...... additional studies will be funded now for sure.... This is...
  26. D

    CDC XMRV Retrovirology Study on CFS Published

    The answer is one word. Pharmaceuticals.
  27. D

    Short term memory loss and Foggy Brain

    i totally relate. bam.... for no reason..... something just pushed a button..... I find that in severe attacks the pain is the worst thing....My sister stayed at my house this week. She saw an attack. She is now a believer.... She was simply amazed at the changes I went through....
  28. D

    ERV (Scienceblog.com)'s take on CDC's paper....and Alter's paper's review process...

    srmny......I did go to the same page, a a bit futher down than your highlighted quote I found a special route to publication for members...It is still there... It seems they are in the process of changing this..... again.as I previously stated. ..i dont know how significant this is, but there...
  29. D

    CDC XMRV Retrovirology Study on CFS Published

    How do you promote this post to a thread...It is really important. This is what is needed....I am not a virologist and so I want more analysis of of a virology papers and virology techniques by virologists......more please....
  30. D

    ERV (Scienceblog.com)'s take on CDC's paper....and Alter's paper's review process...

    cbs and dannybex.....i hear you......but I like a little edge.....and I am not too worried about people with different ideas...there is a need to know everything she knows.. for example her point about the special line to publishing for members in PNAS I didnt know, and while maybe not that...