• 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.

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

Search results

  1. bananabas

    Muscle spasms triggered by light gestures

    Hello! I discovered something recently, as many of you I have occasional muscle spasms. However, I discovered that I can trigger them very badly when doing very fine gestures with my fingers. For example, if I play with a grain of rice and I try to pass it from finger to finger as gently as...
  2. bananabas

    Work Accommodations Resources

    Europe. But I just wanted some general recommendations as a starting point, to help structure the document.
  3. bananabas

    Work Accommodations Resources

    Hi all, I was wondering, for those of you that got diagnosed by a knowledgeable ME/CFS doctor, did he/she provide you with a document for the HR department at your workplace? My doctor wants to write some recommendations for me but he has very little experience and would like a...
  4. bananabas

    Chinese medicine

    Hi everyone, sorry for the long break. This has probably been discussed before, but does anyone have a recent experience with Chinese medicine? I am considering a few weeks trip to China soon, and would really appreciate some tips on how to find the right doctor/treatment, as well as getting...
  5. bananabas

    Project proposal for a dedicated ME wearable device

    Unfortunately, there are no new developments. The startup that was originally involved in this project decided not to pursue it further. I'm really sorry :(
  6. bananabas

    Low neutrophyl/neutrocytes count and coldness

    I just got the results of my blood tests (attached as PDF), and it seems my neutrophyl count (highlighted with a black rectangle) is pretty low. Does anyone else have this? Is it connected to CFS? Everything else seems to be normal, but these are just routine blood tests, nothing specific. I...
  7. bananabas

    Did you have any problem with aerobic exercise before becoming ill? Like childhood?

    Count me on the "athletically troubled" list too, Sushi!
  8. bananabas

    Project proposal for a dedicated ME wearable device

    I was just reading a review about the Angel Sensor the other day, and it's not exactly positive: https://www.adventuresinoss.com/2016/02/20/review-angel-sensor-fitness-tracker/ Apparently the people at OpenHealth just sent out a newsletter where they mention ME: "The more sensors we have, the...
  9. bananabas

    Project proposal for a dedicated ME wearable device

    I recently got in touch with a health-oriented dutch startup. Among other things, they manufacture wearable sensors that can detect motion and (in the next version) also record an electrocardiogram. Something like fitbit, except everything is open source and can be custom engineered for our...
  10. bananabas

    Venlafaxine discontinuation

    Haven't tried that, thanks for the tip though.
  11. bananabas

    Venlafaxine discontinuation

    By the way, the withdrawal symptoms are temporary, right? I mean, even if they can last say, one year or so, there is no permanent damage being done, correct?
  12. bananabas

    Venlafaxine discontinuation

    Indeed, sorry about that :) My (undiagnosed) CFS symptoms is more correct. And yes, I do need one, definately - know where to get it? :D
  13. bananabas

    Venlafaxine discontinuation

    No new symptoms, as far as I can tell.
  14. bananabas

    Venlafaxine discontinuation

    It relieved some of my symptoms, but not so much the fatigue unfortunately. I'm not sure anything can be concluded from that. Anyway they were treating me for depression not CFS.
  15. bananabas

    Venlafaxine discontinuation

    Well, my CFS was never officially diagnosed so this goes to the list of "things they say to explain my CFS symptoms as something else".
  16. bananabas

    Venlafaxine discontinuation

    I have been taking a low dose of venlafaxine for over a year and then stopped it abruptly around 8 months ago. I did feel quite bad for the first week or so but then that went away, leaving me with my usual CFS symptoms. One of the docs I recently saw is now suggesting that these symptoms are...
  17. bananabas

    Can high doses of antioxidants be bad for us?

    I recently came across a news article relating high doses of antioxidants with prostate cancer. They refer to this study. I quote their conclusions It seems a bit far-fetched to imply "high dose antioxidants cause cancer" just based on this study, what do you guys think?
  18. bananabas

    Career Advice for Physicist.

    I am vaguely familiar with Penrose's work on general relativity and Penrose tiling. I also read his book "The Emperor's New Mind" a long time ago. I remember in the book he mentions consciousness from a physical perspective. I recall feeling excited about the whole "physics of consciousness"...
  19. bananabas

    Dr. Umberto Tirelli

    I'm particularly interested in how the Aviano clinic compares to De Meirleir's Himmunitas.
  20. bananabas

    Dr. Umberto Tirelli

    What is the general opinion of the italian doctor Umberto Tirelli? One of my ME/CFS friends from Italy is seing him and mentioned a cost of 350 € per visit. This is his home page and list of important publications. @A.B., if I recall correctly you also see/saw him?
  21. bananabas

    Repeat CPET Literature Request.

    Incidentally, I was not able to find any Wikipedia page for CPET..
  22. bananabas

    Career Advice for Physicist.

    Interesting! I wonder if IKEA has anything similar..
  23. bananabas

    Pre-visit preparation for Dr. KDM.

    Sure, no problem. I don't want to start a flame war or anything, just curious as to how many people double (or triple!) checked.
  24. bananabas

    Pre-visit preparation for Dr. KDM.

    I wonder, how many of you have confirmed these blood test results by re-doing them in the same time period at an independent lab?
  25. bananabas

    Is this a crash?

    I have one of those strap things, from Garmin. But it doesn't show BP though, I'm not sure how a strap could measure that.
  26. bananabas

    Pilates?

    Are there any studies on the effects of pilates on mild ME/CFS? I never tried it, but it looks quite anaerobic and from what I understand it is the aerobic metabolism that malfunctions in PWME.
  27. bananabas

    Running around like a headless chicken.

    Low effective blood volume, leading to otrhostatic intolerance seems to pop up quite often on my threads (see also Is this a crash?). It is possible that this could explain at least part of my symptoms. However all my attempts at getting better hydration usually fail as I excrete all liquids 15...
  28. bananabas

    Is this a crash?

    So isn't there an all-in-one device, that you can wear throughout the day and would monitor both blood pressure as well as heart rate?
  29. bananabas

    Career Advice for Physicist.

    EMF sensitivity is hard to prove scientifically I think. On the spectral problem, there is reasearch showing the blue part of the spectrum influences circadian rhythms. I use redshift.
  30. bananabas

    Persistent dandruff.

    That seems to contain selenium disulfide as the active ingredient, can you confirm?