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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. pamb

    Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity

    Hi Peggy Sue, Thanks for sharing this interesting bit of information, that the longer your illness goes, the longer the delay before PEM hits. My husband has been ill for 13 years now and we've seen so many symptom changes over the years I've lost track. But, I had never considered PEM delayed...
  2. pamb

    The Chronic Complex Diseases Study - Vancouver, Canada

    just posted on my FB, as I am in Canada with friends in Vancouver in the right age range.
  3. pamb

    Wireless Devices Cause Symptoms.

    just a small anecdotal report on related topic: We have had cordless phones in the house and my ME hubby would always end up feeling really ill after a longish phone conversation. We always thought it was just the exertion of focusing for so long, but then I replaced the phones with old...
  4. pamb

    Interactions with Medical Professionals

    In the past, not much help at all, except the usual psychiatric ideas. arghhhhhh. Amazingly, time has passed and now, in Edmonton, Canada, my husband has two physicians who actually understand some of what is going on. It is such a relief. One is his pain doc, so it helps that he understands the...
  5. pamb

    Treating Autism Conference, anyone attending? (GcMAF, etc.)

    I'm very curious to learn how this is received by the autism community 'at large' so to speak, as it seems like a very significant breakthrough. But I can't help but wonder how many vested interests will downplay the significance altogether. I guess too many years in the CFS world have made me...
  6. pamb

    Mitochondrial dysfunction - mainstream view in CFS or not?

    This is not much help for a UK person but... my husband was tested by Myhill in 2009 and came up with quite poor mito function, and partial methylation block was just confirmed in testing through Dr. Genuis in Edmonton, Canada. Starting next week we're embarking upon Genuis' environmental...
  7. pamb

    Can't tolerate SSRI's - other suggestions for depression?

    Thanks all, for the conversation. We've had some luck with really dark room for sleeping and used a SAD light in winter, now in summer he sits out in the morning sun for 30 min. or so most days and it really helps. Most interesting update is our year long wait to see Dr. Stephen Genuis finally...
  8. pamb

    Are Metametrix Tests Valid? Are the Treatment Suggestions Useful?

    My husband, under the care of a pretty credible associate professor in the faculty of medicine at UofAlberta, has just had a full range of Metametrix done. Only some are back, but his Doc is already finding interesting things. I did ask if I could take the supplement suggestions at the end of...
  9. pamb

    Benzos

    ps thanks for the reminder about theanine. need to stock up again.
  10. pamb

    Benzos

    Quick comment on the white brain lesions and gluten. Good grief! Hubby had MRI's when this all started in 2003/04, and the docs puzzled over the white brain lesions.. and not knowing anything at all about our world, wrote it off to too many falls from a 45 year competitive cycling career. Hubby...
  11. pamb

    News announces ME is a mental illness: Please ask for retraction

    Thanks for the heads up and excellent model letter. It has been sent - from a disappointed Canadian citizen and resident. I'm afraid I'm with Kati, the Rituximab Tourist, and pretty disgusted with the state of affairs in Canada. sigh
  12. pamb

    Dr. Bradstreet - new post

    Oh, how I hope this all proves true and reproducible.
  13. pamb

    High energy/crash and sleep disturbance on new diet

    Hi, welcome and good luck. I don't know if it still applies, but my husband had the testing done through Dr. Myhill a few years ago, and she made it clear she just did not have time for followup but provided a list of UK practitioners doing the same kind of medicine and we were able to have...
  14. pamb

    Fecal Transplants: Seriously, What Do We Think?

    Thanks! You have me thinking about doing this for John as his gut problems are sure there. Myhill's link is great - naming labs and all. I just don't know where we'd find a donor, as I'm not in great shape in that department. hmmmm. we have a good and healthy friend a couple hundred miles away...
  15. pamb

    Ketotifen for leaky gut

    Hi, first I've heard of it, but will print it off and take to my husband's Doc. Never give up.
  16. pamb

    A modest proposal

    Just replied in the 'you are completely insane' category, but only due to the untrained and unreliable factor trying to use ME/CFS patients to provide support. I very much agree that I am horrified at the thought of they psych's getting a ton of insurance money to do this. I do believe some CBT...
  17. pamb

    Any suggestions for depression? Preferably natural supplements

    Hi, I asked the same question here Dec 25th (looking back I guess it's no surprise I posted the question on Christmas Day!) and received some excellent suggestions from people here. I don't know how to figure out the URL but if you search for a thread, started by pamb with title "Can't...
  18. pamb

    What its like to be a MAN with ME/CFS

    Hi Snowathlete, I gotta agree with you. A man expects to be able to 'do' things and not being able to is a huge adjustment. I see it from the other side, wife of an ME guy, and it breaks my heart. He constantly over-extends, just to keep some balance in our relationship and give back, and I...
  19. pamb

    Comment by 'pamb' in 'A Tale of Two Studies'

    This just makes me sad. My husband, now 75, has had ME for 11 years now and the dementia is moving right along. Of course at his age, one could just say it is senile dementia, so no one will ever really care about the 'why' in his case. Anciendaze: agreed re political ads and American...
  20. pamb

    Comment by 'pamb' in 'An Ode to Pain Virgins...'

    a very powerful poem HHNF. I am so sorry you are in a position to write it.
  21. pamb

    S. Wessely: "PACE trial, which tested interventions with an impeccable safety record"

    Wow, this guy just has no shame or conscience does he? (hmmm, con-science?)
  22. pamb

    Can't tolerate SSRI's - other suggestions for depression?

    Thanks again everyone, for so many interesting suggestions. I'll print this out, research, discuss with John and we'll start experimenting a bit. It is so wonderful to receive so much support when the docs have no clue. Happy New Year et Bonne Annee!
  23. pamb

    Can't tolerate SSRI's - other suggestions for depression?

    Gosh, everyone. Thanks so much for lots of good info. ahhh, the diet. I know it has too much sugar and carb in it and do my best to influence, without a huge amount of success. When we lived in France I worked from home so could cook for him and make sure he got a somewhat better diet with...
  24. pamb

    Factors associated with severe oxidative stress in CFS

    I'm a late arrival to this thread - thanks Marco for pointing it out to me. Interesting stuff. My ME husband sure could fit into those high level cyclists who came down with ME. 'tis all interesting and I look forward to our appt in May with the only ME/CFS specialist in our city of 1 million...
  25. pamb

    Merry Christmas everyone.

    Marry Christmas and very best wishes for 2012. It is sure to at least be an interesting year :balloons:
  26. pamb

    Can't tolerate SSRI's - other suggestions for depression?

    Thanks for the prompt responses Sallysblooms and Ocean. Ocean, Sadly he has tried tricyclics (spelling?) and they just did not do anything one way or another. The docs in France hospitalized him for a week and gave him intravenous amitriptyline, so sure ALL his problems would go away, and same...
  27. pamb

    Can't tolerate SSRI's - other suggestions for depression?

    Hi all, We have a debate raging up here. My ME (CCC & ICC) hubby is clearly depressed, however since ME arrived about 10 yrs ago every time he tries an SSRI, after about three days his head feels like it is truly going to explode. We've recently moved back to Canada from France and his doc's...
  28. pamb

    Burning Muscles and Skin

    Hello dear Carrigon, Sending you huge ((((hugs)))) and gentle, soothing waves of peace over those darn burning feelings. My husband is really struggling with the burning these days and finds lyrica helps or neurontin - although they have downsides too. Mostly I wanted to let you know you are...
  29. pamb

    Comment by 'pamb' in 'Compare & Contrast: Teeth-brushing Edition'

    ahhhh, this sounds familiar. Often it takes until mid-afternoon for my husband to get up the ambition to brush his teeth ... after breakfast. Must be the size of the log and weight of that big bucket that causes the problem. sigh.