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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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  1. kendonoghue

    IIME 14th International ME Conference, May 31, 2019 London

    They've got their hastag: https://twitter.com/Invest_in_ME OMF is there: https://twitter.com/OpenMedF Its mostly just pictures of people eating lunch or standing at a lectern without any info yet.
  2. kendonoghue

    IIME 14th International ME Conference, May 31, 2019 London

    Not to mention the emotional toll of having a son with such an acute state of MECFS.
  3. kendonoghue

    IIME 14th International ME Conference, May 31, 2019 London

    This is like the CFS SuperBowl! I've got my Ron Davis Jersey on, just waiting to find a livestream.
  4. kendonoghue

    Light sensitivity - anything which helps???

    I use this on my computer to "soften" the light. Helps me be able to use the computer monitor longer than when its on full blast. https://justgetflux.com/
  5. kendonoghue

    Emerge Australia ME/CFS International Research Symposium March 12-15, 2019

    I was using that same site; this past weekend, and kept getting the conflicting hours. Daylight savings time kicked in between Sat and Sun; as if I needed another wrench to screw up trying to watch a CFS symposium on the other side of the planet while having CFS.
  6. kendonoghue

    Agenda/Speakers: CDC Stakeholder Conference Call March 11, 2019

    Currently, the only insurance Dr. Natelson's office accepts is Medicare. Payment is required in full at time of visit. Documentation for reimbursement from insurance companies will be provided to patients. The cost of the initial patient 90 minute consultation is $1230, follow-up consultations...
  7. kendonoghue

    CDC ME/CFS Stakeholder Conference Call March 11, 2019

    https://drive.google.com/file/d/1iKODk5IM1ZscClfeX2FF4ohtFobYbxS3/view?usp=sharing
  8. kendonoghue

    Agenda/Speakers: CDC Stakeholder Conference Call March 11, 2019

    Still unpacking; but the guy's definitely passionate about the cause. https://drive.google.com/file/d/1iKODk5IM1ZscClfeX2FF4ohtFobYbxS3/view?usp=sharing
  9. kendonoghue

    Does anyone else have an extremely exaggerated startle response? Need help with this.

    My new Autoimmune Internist Doctor just did them: GAD65 Ab Assay, S 0.01 nmol/L <= 0.02 The whole autoimmune dysautonomia test from Mayo was negative; however, I just started my first IVIG, and am cautiously optimistic.
  10. kendonoghue

    Does anyone else have an extremely exaggerated startle response? Need help with this.

    Just wanted to add, seeing this thread pop up again; that I too, get a cartoonishly over-exaggerated startle response. I have been diagnosed with hyper-adrenergic POTS, at U Toledo syncope and autonomic disorders center. I don't think I've seen this as a symptom throughout the CFS/ME...
  11. kendonoghue

    ME symptomatic crash after Sauna

    Early on I did Hot Yoga. and got his by a ton of bricks. Turns out I have hyper adrenergic POTS, so the heat really blows up my system.
  12. kendonoghue

    How to help when overstimulation gets really bad

    Clonidine, and guanfacine have really helped my hyperadrenergic POTS/CFS. I'll sometimes use pregabalin or acamprosate to further try and diminish the overstimulation via the GABA pathways. Hang in there.
  13. kendonoghue

    The biopolitics of CFS/ME (Karfakis)

    Can we all appreciate the Orwellian irony that a paper: Biopolitics of "any disease", is paywalled. I'm familiar with sci-hub, but still made me cts(chuckle to self).
  14. kendonoghue

    Antibodies Against GPCR (

    DOI for full text. 10.2741/4698 But Murph provided the relevant info.
  15. kendonoghue

    Small lifestyle changes that have helped me :)

    Getting a shower chair. Stool for the bathroom. Angled computer stand and wireless trackball. All have helped me conserve energy.
  16. kendonoghue

    Clonidine

    I was diagnosed with Hyper-adrenergic POTS by UToledo doing a NE blood level at resting and after walking around awhile. Clonidine has been the best medication for me, I've been taking it for the past year now. It's not totally cured me, but keeps me closer to 24 hour schedule and gives me...
  17. kendonoghue

    Noradrenergic and Stress-Related Etiologies of CFS (Nashville, Tennessee, USA)

    Curious as to why Colorblindness is an exclusion. Am personally colorblind.
  18. kendonoghue

    What's your opinion of Dr Myhill?

    While none of her treatments worked. Her description of CFS; was my first epiphany that I had CFS and not depression(after failing with depression treatments for a year).
  19. kendonoghue

    Anyone seen Dr Conley in Michigan?

    I saw Dr. Conley a few years back. He was off insurance and a natural-path. He didn't really look for a cause; and just went along with a bunch of supplements. It was a waste of time. I'm currently seeing Dr. Karabin and Grubb at UToledo and love them.