• 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.

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Search results

  1. M

    How best to contact #MEACTION

    Their email is info@meaction.net
  2. M

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

    Thanks for the call out. I'll be sure to watch it.
  3. M

    The Mild, Moderate, Severe and Very Severe Levels of ME/CFS

    @Learner1 - I also like your tracking markers. Do you have a tool that you use to track these? Are there any in the list that are especially useful or useful at different stages of severity?
  4. M

    The Mild, Moderate, Severe and Very Severe Levels of ME/CFS

    @Hip - your descriptions of mild, moderate, severe, and very severe are great. A question on the descriptions - are people with severe ME always dependent on a wheelchair for mobility? I could imagine someone who is severe, pretty much homebound and largely laying flat all day - their mobility...
  5. M

    The Mild, Moderate, Severe and Very Severe Levels of ME/CFS

    Very helpful, @Hip Thank you for doing this. The IACFS/ME Primer also has a functional capacity scale https://www.massmecfs.org/images/pdf/pediatric/Functional_Capacity_Scale_and_Activity_Log.pdf
  6. M

    anyone experience Transient Global Amnesia

    I'm no doctor but I can imagine that that a time lag between dose increase and TGA episodes could reflect a delay in development of sensitivity, changes in how you metabolized the drug, etc. I was on one statin for a number of months before I developed a reaction to it (muscle pain) and had to...
  7. M

    anyone experience Transient Global Amnesia

    @TenuousGrip @caledonia and @Judee - Thanks so much for the replies. I'll pass it on.
  8. M

    anyone experience Transient Global Amnesia

    THanks for responding so quickly, @TenuousGrip The onset of all the TGA episodes has always been first thing in the morning. The evening or bedtime meds and supplements: - Crestor - 5 mg - Naltrexone - 6 mg - Valtrex - 1000 mg - B-complex vitamins and vitamin C - Aspirin - 81 mg - CoQ10...
  9. M

    anyone experience Transient Global Amnesia

    I've been asked by a patient to ask this forum whether anyone here has experienced Transient Global Amnesia (TGA) as part of their ME/CFS symptoms. His description is below. I'd really appreciate any comments that you have. I have had ME/CFS for 11 years. For the first 10 years, I did not...
  10. M

    Feel like ME/CFS has made me age faster

    Agree. The selection criteria in this study increased prevalence 10 fold over the CDC's earlier epidemiological studies. The IOM dismissed the criteria because it included an overrepresentation of PTSD and depression. Hard to say how it applies to patients with ME.
  11. M

    Can anyone recommend a disability lawyer? (WA state or else where)

    @ratmon - whoever you go with, make sure they know the tests that are used to demonstrate functional impairment. The Ct lawyer - supposedly an expert in ME/CFS - that ditched my son felt the case had no merit even though my son had a 2 day CPET test that the review judge cited as the reason he...
  12. M

    Can anyone recommend a disability lawyer? (WA state or else where)

    My son was in Connecticut and used Comedford's office after the CT lawyer ditched him at the last minute. But they were close enough to travel to the judge's office for the appeal. I don't know if they cover cases further away
  13. M

    Can anyone recommend a disability lawyer? (WA state or else where)

    @ratmom Steve Krafchick handles Erisa cases for ME and is in Seattle. He is on the IACFSME board and was on CFSAC and knows ME, the 2 day CPET test in disability cases, etc https://www.krafchick.com
  14. M

    What makes CFS different from somatoform disorder

    The article on page 23 of this journal of the New York State Academy of Family Physicians may help http://www.nysafp.org/NYSAFP/media/PDFs/Family%20Doctor/Family-Physician-Winter-2018WEB.pdf This Nature article might also help https://www.nature.com/articles/d41586-017-08965-0
  15. M

    Trial By Error: Letter to British Journal of Sports Medicine from CPET Experts

    David Tuller has published a new blog on Virology Blog that includes a response that Workwell Foundation to an article promoting GET in the British Journal of Sports Medicine. David wrote: The Workweek letter to the BJSM stated:
  16. M

    Is NIH/CDC going to use the right PEM definition for all future research? Action needed?

    @Learner1 - If you could submit your comments, that would be really helpful.
  17. M

    Is NIH/CDC going to use the right PEM definition for all future research? Action needed?

    Hi @Nielk - I am not aware of any other tested questionairres for PEM. If you do know of any, I encourage you to provide that feedback during the public review. I am honestly looking forward to seeing all the feedback that comes in so we can get this right.
  18. M

    Is NIH/CDC going to use the right PEM definition for all future research? Action needed?

    Hi Great to see those here reviewing these CDEs. I was one of the participants of the PEM CDE group and am looking forward to seeing your review. If you don't mind, I'd like to clarify one thing... The PEM recommendations include the definition of PEM but separately we also needed a tool that...
  19. M

    Terrible Wikipedia article on MECFS! (CBT, etc)

    Thanks for tagging me on this, @Mary. Will look at this more closely when I can
  20. M

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    This is similar to what happened to my son. He had Giardia and was given Flagyl - a few weeks later, he woke up with ME symptoms
  21. M

    New AMMES.org website - Erica Verillo

    I don't think this was posted elsewhere but if so, please let me know. The American Society for ME and CFS (AMMES), founded by Erica Verillo, has put up a new website with information about the disease, its diagnosis and treatment. I haven't gone through everything but it looks quite...
  22. M

    CDC ME/CFS page, updated 30th May 2017

    Thanks for posting, @AndyPR.
  23. M

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Hi @Laurajnyc Do you mind my asking where you go in NYC? And thank you for this - great information
  24. M

    Disappointing reply from Mayo, need help with response - Cochrane Review?

    @Mary - Thank you so much for pursuing this. In addition to comments about PACE and the Journal of Health Psychology special issue, you might raise one or more of the following with Mayo if you haven't already. Just ignore if you already have these points 1) Regarding Cochrane - you can point...
  25. M

    The Real Problem With Chronic Fatigue Syndrome (ME/CFS) Funding: blog by Cort Johnson

    This may be true in other countries but in the US, we know quite a bit about the level of NIH underfunding over the years (about $5M average since 1995) and how the current funding compares to other diseases with similar debility...
  26. M

    Doctor near Lebanon New Hampshire

    I live in Connecticut. Have you ever been to a Mass Cfids event? I have a feeling we met at one of those Thanks for the extra info, BTW. Edit - where do you go in MA?
  27. M

    Doctor near Lebanon New Hampshire

    @GG - thanks for the feedback. The recommendation for Durand came from MassCFIDS. I called the number at the site above and the answering service said they still have a Dr. Durand on staff. Will need to follow up Monday. What did you think of him? Also, thanks for the other link. Interesting...
  28. M

    Doctor near Lebanon New Hampshire

    @GG - Have you heard of a Lynn Durand in Concord? He's at the Center for Integrative Medicine http://www.concordhospital.org/doctors/profile/lynn-durand/
  29. M

    Doctor near Lebanon New Hampshire

    Hi I'm trying to find a medical provider for a patient. Does anyone know of a medical provider who is near Lebanon, New Hampshire including maybe eastern Vermont or north-western New Hampshire? Mary