• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. D

    Defining and measuring recovery from ME & chronic fatigue syndrome: the physician perspective

    As you say, children don't have the knowledge base to know that they want biological measures of recovery. And depending on when they got sick and how long they have been sick, many would not remember what their premorbid level of function was like. (Much less would they know what "normal"...
  2. D

    A new section for "Illnesses of Unknown Etiology" in the Journal of Translational Research

    @A.B. thanks for posting this. I hope the articles they publish will help us all!
  3. D

    Physiological measures in participants with chronic fatigue syndrome, multiple sclerosis and healthy

    I'd be interested to know what form of MS the participants had and whether that made a difference in their test results.
  4. D

    David Tuller / Trial by Error: Retired PACE Investigator Peter White and Swiss Re

    @Snowdrop - I can't find the screenshot either. The first part of today's post is current, and the second part if a re-post from 2015. It looks as though the freeezepage link is the screenshot Tuller is referring to in the current post.
  5. D

    Peter White gets set to speak at Swiss Re Insurance Medicine Summit 2017

    David Tuller has a piece partly on this: Trial by Error: Retired PACE Investigator Peter White and Swiss Re http://www.virology.ws/2017/08/07/trial-by-error-retired-pace-investigator-peter-white-and-swiss-re/
  6. D

    David Tuller / Trial by Error: Retired PACE Investigator Peter White and Swiss Re

    @Snowdrop @lilpink I think he is referring to http://institute.swissre.com/events/Insurance_Medicine_Summit_2017.html#tab_5@sno
  7. D

    Peter White gets set to speak at Swiss Re Insurance Medicine Summit 2017

    You'd think by now they would be tired of "chronic fatigue" (or at least be "chronically fatigued" themselves), but nooooo.... Just don't ask them where they get such stamina... ;)
  8. D

    Peter White gets set to speak at Swiss Re Insurance Medicine Summit 2017

    The full-text of Wessely's article can be read here: http://simonwessely.com/Downloads/Other/OldWine.pdf
  9. D

    Peter White gets set to speak at Swiss Re Insurance Medicine Summit 2017

    He's recycling a title of Wessely's: Psychol Med. 1990 Feb;20(1):35-53. Old wine in new bottles: neurasthenia and 'ME'. Wessely S1. Author information Abstract The history of neurasthenia is discussed in the light of current interest in chronic fatigue, and in particular the illness called...
  10. D

    anyone under 30 ?

    @notmyself - There are many chronic diseases that people live with for decades. From my experience (this may not match everyone's experience) this disease requires a great deal of flexibility in one's expectations regarding physical and/or cognitive activity levels. One has to try to find a new...
  11. D

    anyone under 30 ?

    @notmyself - Assuming that onset at a younger age means less severe illness doesn't match the experience of most patients. Some under 30's are far too sick to use internet connected devices. Finding this forum within about 1 year of onset is very unusual unless patients already know about the...
  12. D

    Pediatric Primer

    Based on the reference, I think the quote about pain in 10-30% of pediatric patients is saying that fibromyalgia as a co-morbidity occurs in just 10-30% of young patients. But as @Dolphin says, the wording is unclear.
  13. D

    Pediatric Primer

    Okay - here's another inconsistency in the primer because the diagnostic worksheet (p.7) says "Rarely is pain absent"
  14. D

    Pediatric Primer

    @Dolphin I am so glad you are going through the pediatric primer! Thank you for sharing your thoughts and insight. For what they are worth, I recently shared some of my thoughts about it on OccupyME
  15. D

    Join us for a Community Symposium on the Molecular Basis of ME/CFS! Incredible opportunity!

    @neweimear This is the transcript of the first afternoon of the June CFSAC meeting. https://www.hhs.gov/sites/default/files/2017-06-29-cfsac-meeting-transcript.pdf There might be more info beginning around p.40 Hillary Johnson asked Vicky Whittemore about clinical trials.
  16. D

    CFSAC Webinar June 29-30 Agenda & Call-In Number

    June 2017 CFSAC audio recordings and transcripts https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/2017-06-29/index.html
  17. D

    CFSAC Webinar June 29-30 Agenda & Call-In Number

    This link leads to recording and transcript of the NIH July 10 teleconference
  18. D

    My embarrassing, ignorant questions!

    @markielock - Have you read "Thirty Years of Disdain"? Long version - https://www.dropbox.com/s/hjbt3s13k61frda/Thirty%20Years%20of%20Disdain%20-%20Background.pdf?dl=0 Shorter version - https://www.dropbox.com/s/mreey7q7lb2v0zd/Thirty%20years%20of%20Disdain%20-%20Summary.pdf?dl=0
  19. D

    question re OMI, Kogelnik, Kaufman and PEM

    @Kati - I am asking on behalf of patients who need to be evaluated but want to be certain they are being appropriately diagnosed.
  20. D

    question re OMI, Kogelnik, Kaufman and PEM

    Do Drs. Kogelnik, others at OMI, and/or Dr. Kaufman require PEM to diagnose ME/cfs?
  21. D

    Pediatric Primer

    (I have not read it yet) http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full .....
  22. D

    CFSAC wants your comments regarding pediatric education

    @Inester7, @Valentijn @taniaaust1 @Tom Kindlon Pediatric Primer published 19 June 2017 http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full I will also start a separate thread for it.
  23. D

    CFSAC wants your comments regarding pediatric education

    @Inester7 - A Pediatric Primer is in publication. My understanding is that it will be available soon.
  24. D

    Join us for a Community Symposium on the Molecular Basis of ME/CFS! Incredible opportunity!

    I am unclear if all of the experts listed are actually attending/presenting. My understanding is that some people are listed who were invited, but are unable to attend.... I hope @Ben Howell, @Janet Dafoe (Rose49), (others?) can clarify.
  25. D

    Incidence of ME/cfs in a large prospective cohort of U.S nurses

    @Snow Leopard - good point that this is a select population. Female, educated, healthcare professionals. To clarify - NHS in this paper refers to Nurses' Health Study .
  26. D

    How does POTS make you feel?

    @Jemima37 - have you read http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf?
  27. D

    EPI-PEN recall 13 March 2017

    Several sites now show a longer list @Chelby and include expiration dates through October 2017. (Tagging @Gingergrrl, @Webdog, @Jennifer J also because you each noticed the initial post.) The list of EpiPens recalled in the US can be found below: EpiPen Jr 2-Pak® Auto-Injectors, 0.15 mg - Lot...
  28. D

    EPI-PEN recall 13 March 2017

    It appears to be brand-name only (not the generic) "....The recalled product was manufactured by Meridian Medical Technologies, a Pfizer company, and distributed by Mylan Specialty between December 2015 and July 2016. The expanded voluntary recall is being initiated in the U.S. and also will...
  29. D

    Louisiana (USA) radio station to have a programme on ME/CFS on March 30

    From the post: "Airs Thursday, March 30, 2017, at 6 p.m. We all get tired, but when generalized fatigue becomes a problem for six months or more, it may be Chronic Fatigue Syndrome. Tune in Thursday at 6 p.m. for Health Matters: Mental Health Edition. Dr. Mark Vigen, psychologist, and Dr. Shelly...