• 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. BlueCoffeeMug

    Article Scientific Findings Distinguish Between Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

    Thank you very much for the great interview, @Bronc. :thumbsup:
  2. BlueCoffeeMug

    Healthcare Journal dedicates an entire issue to Severe ME

    I do not want to sound dismissive of mental illnesses, but those who choose to end life because that is the only solution to be free from physical and daily living sufferings should be "volunteer dying" instead of "suicide". Some can access assistance to have a good death. Others have to go...
  3. BlueCoffeeMug

    Post-Concussion Syndrome may come with PEM

    With my very limited layperson observation, people with neurological conditions show similar symptoms of PENE with exertions. They also show sensory stimuli and information overload. Because PENE is for ME-ICC that is identified as neurological disease, I personally believe people with brain...
  4. BlueCoffeeMug

    Article Very Severe ME: Are Intimate Relationships Possible?

    (((hugs)))
  5. BlueCoffeeMug

    Pupil Hippus Anyone? (Pupils constricting/dilating)

    NCNED is currently conducting eye measurements study because the eye is particularly rich in TRPM3 receptors which they know are affected in ME/CFS It involves: 1. Observations of the retina at the back of your eye using OCT (Optical Coherence Tomography) 2. Observation of pupil response to a 1...
  6. BlueCoffeeMug

    Poll: Have you ever experienced complete paralysis of a part of your body?

    I feel my paralysis is due to disruption in neurotransmitter or nerve conduction. I have a history of Hypocalcemia, but not Hypokalemia. But my blood hadn't been tested during my paralysis, so I cannot say for sure.
  7. BlueCoffeeMug

    Temporary paralysis I need your Insights

    Could you explain what is complete paralysis for a layperson? How is it different from partial or temporary paralysis? Thank you. :)
  8. BlueCoffeeMug

    Article Very Severe ME: Are Intimate Relationships Possible?

    Hi lenora Thank you for taking the time and energy to share your honest story. :) It's always nice to hear about a caring relationship. Sending virtual hugs and smiles for 54 years of love and hard work. :thumbsup::hug::)
  9. BlueCoffeeMug

    Article Very Severe ME: Are Intimate Relationships Possible?

    (((hugs)))
  10. BlueCoffeeMug

    Article Very Severe ME: Are Intimate Relationships Possible?

    xo
  11. BlueCoffeeMug

    Article Very Severe ME: Are Intimate Relationships Possible?

    xo
  12. BlueCoffeeMug

    Article Very Severe ME: Are Intimate Relationships Possible?

    xo
  13. BlueCoffeeMug

    Article Very Severe ME: Are Intimate Relationships Possible?

    xo
  14. BlueCoffeeMug

    Article Very Severe ME: Are Intimate Relationships Possible?

    My friend requested to post her comment anonymously. I'm grateful for her time, energy, efforts and spirit to share her thoughts and experience for the Severe ME Understanding and Remembrance Day. === From a Severe ME sufferer. Here below is my contribution to the raising of awareness of...
  15. BlueCoffeeMug

    Is POTS a central nervous system disorder? (Blitshteyn, 2021)

    "Abnormal repolarisation, possible coronary ischemia." These readings were taken when OI symptoms present while I collapsed in doctor's waiting room. But following investigations with Echocardiogram while I'm lying down (no symptom) didn't show anything.
  16. BlueCoffeeMug

    Is POTS a central nervous system disorder? (Blitshteyn, 2021)

    I don't know which comes first... I had abnormal ECG results while in orthostatic distress. However, the following Echocardiogram tests (another day) while in supine position didn't show significant abnormality. I think standing ECG (heart) and EEG (brain) are the possible OI diagnostic tool for...
  17. BlueCoffeeMug

    Is POTS a central nervous system disorder? (Blitshteyn, 2021)

    I'm thinking adding EEG to NASA's lean test. I'll wait and see if NCNED finds something with standing EEG, first.
  18. BlueCoffeeMug

    Is POTS a central nervous system disorder? (Blitshteyn, 2021)

    Has someone used standing EEG to diagnose OI? I requested NCNED to add standing EEG for their next brain MRI research. I'm curious to see the result.
  19. BlueCoffeeMug

    Off label use of Abilify shows promise as a treatment for ME/CFS (Journal of Translational Medicine)

    :lol: Thank you.
  20. BlueCoffeeMug

    Off label use of Abilify shows promise as a treatment for ME/CFS (Journal of Translational Medicine)

    I'm following. It would be nice if they used ME (ICC) and monitor the result by different severity level because many severe ME patient cannot tolerate antipsychotic medicine even it's low dose. I get confused with different type of antidepressants. This one seem to be targeting dopamine...
  21. BlueCoffeeMug

    Science: Great research summaries available from ME associations!

    May I add this one? https://naac-mecfs.org/naac-monthly-international-research-update/
  22. BlueCoffeeMug

    Treatment for shortness of breath (air hunger)?

    Hello. Just in case you misunderstood from my post... What I meant blood oxygen level was Arterial Blood Gas analysis. They draw blood from artery and analysis oxygen and carbon dioxide immediately after. They found normal oxygen level, but borderline low carbon dioxide level. I check oxygen...
  23. BlueCoffeeMug

    Treatment for shortness of breath (air hunger)?

    Interesting discussion. I'm following. While I was in acute stage of severe ME, I had constant air hunger while in bed. This was about 15 to 18 years ago and is getting much less now. Since then, I was diagnosed with Asthma, which I'm still not sure this is the correct diagnosis. I take...
  24. BlueCoffeeMug

    aussie cfs stusdy bond uni results

    Just a quick response... I believe the paper below is the intermittent report for the Bond Uni ME/CFS Research. The study is still ongoing and the participants are scheduled to give the last blood in Nov and Dec. So, the final paper should be published sometime next year...