• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. M

    Anybody seen how Medscape is burying accurate ME/CFS info?

    Could possibly be a search engine filter bubble. Just like with Google, different users can get different search results based on their past activity (and other personal data). Users typically get search results that confirm their prior beliefs, while info that doesn't match prior beliefs is...
  2. M

    Why do people with depression like listening to sad music?

    Thanks for the kind invitation, but I feel more comfortable posting music in members only threads. :)
  3. M

    David Tuller: Trial By Error: Kaiser Permanente Changes Course

    Another excellent David Tuller article about Kaiser Permanente and ME/CFS. Reeducating Doctors About ME/CFS http://www.berkeleywellness.com/healthy-community/health-care-policy/article/reeducating-doctors-about-mecfs
  4. M

    Tracking CCI / AAI MRI & Treatment outcomes

    I was given a 2.5T supine MRI to rule out CCI. Is 2.5T supine adequate for CCI diagnosis?
  5. M

    % with cfs are unemployed?

    A recent study found "47% were unable to work". Fukuda criteria. Onset patterns and course of myalgic encephalomyelitis/ chronic fatigue syndrome Chu et al 2019 https://www.frontiersin.org/articles/10.3389/fped.2019.00012/abstract
  6. M

    Healthwise to "retire the GET/CBT topics" from medical content

    Some good news. The orphaned GET/CBT pages on the main Kaiser Permanente website have been removed by Healthwise. Test the links yourself (they redirect to the top level ME/CFS page)...
  7. M

    Healthwise to "retire the GET/CBT topics" from medical content

    Just a quick note. Due to a technical glitch, the GET and CBT pages still exist on the Kaiser website. Although nothing actually links to them, these pages unfortunately show up in searches. These orphaned GET and CBT pages are scheduled to be deleted on Jan 8.
  8. M

    is swimming(aerobic exercise) recommended for us?

    I like to go back to the Workwell Foundation letter on GET, which advises against increasing aerobic exercise. It goes on to say careful training of the anaerobic system (mindful of heart rate limits) may be possible.
  9. M

    Healthwise to "retire the GET/CBT topics" from medical content

    Just sent a private message with details. Both Healthwise and Kaiser are aware there are some regional websites with outdated content and this is in the process of being fixed.
  10. M

    Healthwise to "retire the GET/CBT topics" from medical content

    I would like to thank @Learner1 on PR for their assistance with contacting Healthwise. :)
  11. M

    Healthwise to "retire the GET/CBT topics" from medical content

    If you are on Twitter, consider thanking @Healthwise for removing Graded Exercise Therapy and Cognitive Behavioral Therapy from their ME/CFS content and the Kaiser Permanente website. Alternatively, you can contact Healthwise directly on this webpage: https://www.healthwise.org/contact.aspx
  12. M

    Healthwise to "retire the GET/CBT topics" from medical content

    Graded Exercise Therapy and Cognitive Behavioral Therapy are no longer recommended in the Healthwise content for ME/CFS on the Kaiser Permanente website. Yay! See for yourself at this link...
  13. M

    Adderall XR—Friend or Foe?

    Anything that worsens the push-crash cycle should be avoided. Also, let's not forget that the KPAX002 methylphenidate study reported no significant statistical difference in self-reported group scores of fatigue and other measures between active treatment and a placebo. First do no harm. PS...
  14. M

    Attention Deficit Disorder (ADD) or just part of CFS?

    I'd feel more comfortable talking about this in a private forum or via private message. I will say, however, that no, I've never been bipolar/had periods of euphoria. But some of the other parts sound very familiar. It wouldn't surprise me if the Caudate nucleus was involved in some way.
  15. M

    psychosomatic is the root of all?

    @alex3619 Lecture on the health impacts of stress. "With rich scientific content and plenty of humor, author and biologist Robert Sapolsky illuminated the causes and health impact of stress at the 2018 Saward Lecture."...
  16. M

    psychosomatic is the root of all?

    Doctors usually (not always) pay attention to the CDC. https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/etiology-pathophysiology.html
  17. M

    Healthwise to "retire the GET/CBT topics" from medical content

    The Healthwise ME/CFS content update should be pushed out to the Kaiser Permanente website in mid-November. GET and CBT will be gone.
  18. M

    Can You Help Me Decipher this MD Response?

    Just wanted to chime in here. UpToDate is in the process of completely rewriting their ME/CFS content. They've already made some changes. UpToDate is using the new CDC Info for Healthcare Providers for their rewrite (so one would assume no more GET/CBT). They have also said they would change...
  19. M

    Are you totally convinced you have CFS?

    The new CDC Info for Healthcare Providers has a list of "Other Conditions for Evaluation" that resemble ME/CFS. https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/other-conditions.html It includes: Fatigue conditions: Hashimoto's disease hyperthyroidism diabetes mellitus iron...
  20. M

    WebMD overview on ME/CFS

    WebMD has at least removed their very old, even worse, Healthwise ME/CFS content. Some of us raised a stink with WebMD about that, so perhaps it had some effect. There is also this WebMD article: https://www.webmd.com/chronic-fatigue-syndrome/what-is-chronic-fatigue-syndrome The top level for...
  21. M

    Dr.Chia ...are there was to get your insurance to cover?

    Kaiser Permanente has no ME/CFS specialist in-network (I have this in writing), and apparently automatically denies out-of-network specialist referrals as policy. The only way to get an outside referral for ME/CFS specialist care from Kaiser Permanente is (California only): File a complaint...
  22. M

    Are you totally convinced you have CFS?

    Some common diseases to rule out are listed on the Stanford CFS Clinic website. https://med.stanford.edu/chronicfatiguesyndrome/faq.html For the lists of diseases, scroll down to the "Do I have chronic fatigue syndrome" section towards the bottom of the page.
  23. M

    #OMFScienceWednesdays-The hunt for elusive pathogens in ME/CFS, by Jaime Seltzer, M.S

    I'd love to see Enterovirus D68 tested for, if that's possible. https://www.sciencedaily.com/releases/2018/02/180226122534.htm http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(18)30094-X/abstract
  24. M

    Healthwise to "retire the GET/CBT topics" from medical content

    If you have a Twitter account, tweet a thank you to @Healthwise
  25. M

    Healthwise to "retire the GET/CBT topics" from medical content

    Just wanted to say Healthwise told me yesterday me they are trying to get WebMD content updated.
  26. M

    Healthwise to "retire the GET/CBT topics" from medical content

    I'm sorry, but I don't know the answer to your questions. However, Kaiser Permanente did 2 updates of their Healthwise ME/CFS content last year, I believe. In March and November.
  27. M

    Healthwise to "retire the GET/CBT topics" from medical content

    If you'd like to thank Healthwise for committing to remove the GET/CBT modules from their ME/CFS content, they have a "Contact Us" page. Healthwise deserves a big thanks for taking this step towards better care for ME/CFS patients. https://www.healthwise.org/contact.aspx
  28. M

    Healthwise to "retire the GET/CBT topics" from medical content

    Yes. At the bottom of the pages, you should see the trademarked Healthwise logo, a copyright statement, and the names of the content reviewers. For example, here are the current GET/CBT Healthwise modules on the Kaiser Permanente website: GET -...
  29. M

    Healthwise to "retire the GET/CBT topics" from medical content

    One of my personal advocacy projects for the past 16 months has been to try to have Healthwise remove the GET and CBT modules from their ME/CFS content. Healthwise provides medical content for many major healthcare corporations in the United States, including Kaiser Permanente with its 13...
  30. M

    Your Dream Place for an IACFS/ME Conference: Take the Poll

    I stand by what I said: Stanford is not in San Francisco (the poll says this) and Stanford has an annual ME/CFS conference. Nothing more. Thanks for the additional information.