• 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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  1. Emmanuelle

    Comment by 'Emmanuelle' in 'please tell me i'm really sick...'

    Great posts, everyone! It's late ... I should go to bed. But I really relate to everything said here. When the illness strips away so much from life, what's left, but God ... It really is a gift in that way-- (I wouldn't say that to many people ...) I've always had faith, but I know if I was...
  2. Emmanuelle

    Comment by 'Emmanuelle' in 'a psalm from a friend of mine'

    Beautiful ... (Thanks for sharing! Wish I had a friend like that ... !)
  3. Emmanuelle

    Article: Chronic Fatigue Syndrome: A Novel - Review

    Good review, Cort. I enjoyed the book also. It didn't seem that farfetched, either ... especially after reading "Osler's Web" ... :winking:
  4. Emmanuelle

    Comment by 'Emmanuelle' in 'Unleashing the Freak.'

    ALSO-- the hormones of peri-menopause and menopause can make even a healthy woman crazy ... at least that's one thing abut which we can say "this too shall pass" !
  5. Emmanuelle

    Comment by 'Emmanuelle' in 'Unleashing the Freak.'

    Thank you Spitfire for so beautifully expressing the deep despair that we all feel at times. It takes a lot of courage to speak TRUTH-- and the truth you have spoken is not a "popular" one. I'm so glad that "letting it all out" helped a little. This illness sucks-- no doubt about it. I'm glad...
  6. Emmanuelle

    What's for dinner ...?

    Thanks everyone! Some great ideas.
  7. Emmanuelle

    What's for dinner ...?

    As my energy level dips lower and lower, my family is eating more frozen (organic) pizza, pasta, burgers, (natural) hot dogs ... I'd like to eat "better" and feel "guilty" for not making more veggies and fresh food. But I'm just not up to it. Menu planning ... ? More like "what's in the...
  8. Emmanuelle

    I would love some help for my wife - about to have mercury fillings removed !

    I'm a bit "late" with this, but want to weigh in ... I had several filling removed about 10 years ago. I was told that cilantro oil (from health food store) helps get mercury out of the brain. Also, I didn't feel much better until I took "Chemet"-- I think that's a "brand" name; don't remember...
  9. Emmanuelle

    Comment by 'Emmanuelle' in 'Giving thanks....'

    Thanks, Resting --- always good to be reminded of gratitude ... I'm grateful for your blog :-)
  10. Emmanuelle

    Comment by 'Emmanuelle' in 'me or cfs...what do you say?'

    I love you all ... good posts!
  11. Emmanuelle

    Comment by 'Emmanuelle' in 'back on the forums...'

    Welcome back, Resting-- even though I'm pretty new here myself! I agree about Cort and PR-- I was SO happy to find this site! Hope you feel a bit better each day and glad you have survived a horrific year ... 3cfids@ourhouse: I "second" your dream!!! May it be soon ...
  12. Emmanuelle

    How the hell did i get cfs --me ? ?? ??????????????????????????????????????????????

    :Retro cool:Could be any of those-- nobody knows for sure. Looks like maybe some genetic predisposition gets triggered by some assault on the system: virus, chemicals, vaccine ... There are some good researchers looking for answers. Hopefully they'll find something and then a treatment. It...
  13. Emmanuelle

    Something interesting about this illness

    I had flu last month, in spite of being in a "downhill" cycle. It was awful. But both my kids had it, so maybe that really close exposure increases the chances. Interesting observation, though.
  14. Emmanuelle

    A name change?

    LOL-- I love WTF ... ! We definitely need a new name. And YES-- please, lets leave SYNDROME out or it. It sounds like something vague and imaginary ...
  15. Emmanuelle

    Comment by 'Emmanuelle' in 'Tart Cherries - Super Food?'

    Has anyone here tried this-- tart cherries for muscles?
  16. Emmanuelle

    Not xmrv but herv k?!

    Okay, I'm a little freaked out ... my mother died of ALS. I've never heard of herv k! But I'm going to link to the site you posted and read about this right now. And ARV as well-- glad that there may be some treatment. (And I think my Mom had ME/CFS for years, but nobody knew about it then ...
  17. Emmanuelle

    energy-saving hygiene habits (or lack thereof)

    Great post-- thanks! Really needed it this week-- I've been feeling so "scuzzy" lately. I used to shower and wash my hair EVERY DAY ... I wouldn't leave the house without clean hair. Hah! Now it's every 4-7 days-- only do it when I can't stand it anymore. I have log, fine, oily, blonde hair ...
  18. Emmanuelle

    "Under our skin" movie for ME/CFS?

    ALSO-- M1chelle-- I DO feel invisible-- even though I look tired and all that, people still look at me and say, "You look fine" or they just have that skeptical look... (Especially those of us who have gained weight with ME/CFS-- I KNOW people are just thinking "You'd feel better if you'd just...
  19. Emmanuelle

    "Under our skin" movie for ME/CFS?

    I just remembered, that I woke up this morning with an overwhelming desire to talk to Michael Moore about doing a docu. on ME/CFS ... I think the "conspiracy" angle would appeal to him! But, I can't imagine myself actually contacting him ... Anyone out there feeling bold? He's "controversial"--...
  20. Emmanuelle

    "Under our skin" movie for ME/CFS?

    I agree, it would be great to have a really slick, informative, convincing film about ME/CFS. I bought the Rik Carlson film-- it was very good. (My only hesitancy in showing it to family and friends was a brief bit by Rik where, after talking about how utterly tired he was, etc., he said he got...
  21. Emmanuelle

    Comment by 'Emmanuelle' in 'From My Commonplace Book - 13'

    That is so lovely ... I'm weeping (!) Not sure why ... just beautiful and touching! Thanks. (I may look for that anthology-- are there other good poems in it? Well, of course there are ... I think I've been alone too much today! a bit of loneliness with my solitude, I guess....)
  22. Emmanuelle

    Suzanne Vernon: "Agency heads are scared to death...if XMRV works out"

    CBS-- I really honor you for respecting Dr. Vernon's wish that you not repeat what she said to you (for 6 months!) and I respect the reasons you decided to share the information. She put you, perhaps unknowingly, in a very difficult position. Thanks.
  23. Emmanuelle

    Suzanne Vernon: "Agency heads are scared to death...if XMRV works out"

    The longer a lie has been going on, the more invested the "lie keepers" become in covering up their deception ...
  24. Emmanuelle

    Seeing Dr. Klimas or going to the WPI?

    Maybe your doctor could run the tests that Dr. Klimas usually does-- maybe even consult with her? Also, I'm thinking about posts seen here about "cavitations"-- from pulled teeth and root canals, which some say can cause neurological issues. (I believe it was posted by Ian.)
  25. Emmanuelle

    Got thru to Lance Armstrong.

    Not to mention the common link between ME/CFS and prostate cancer and XMRV. (Do I have that right?) (Or did Armstrong have testicular cancer ...?) Sorry, the memory, you know ...
  26. Emmanuelle

    Start a petition?

    Maybe this organization has already been utilized ... but they seem to be so well- connected that they get hundreds of thousands of signatures very quickly. I can't think of who to petition, though ... Any thoughts??? http://www.change.org/start-a-petition
  27. Emmanuelle

    NYT:" Psychotherapy Eases Chronic Fatigue, Study Finds"

    I'm sharpening my teeth, Silverblade ...
  28. Emmanuelle

    Comment by 'Emmanuelle' in 'What's in Your Vaccine'

    Carrigon-- I'm with you on the vaccine issue. They really scare me. My kids are unvaccinated. I'm going to check out the link you provided. People think I'm crazy ... We're the canaries in the coal mine, all of us...
  29. Emmanuelle

    is sitting on my %%% making cfs worse?

    Thanks for clarifying the issue. I can't exercise, but if I stay in one place for too long (an hour or two) I get stiff and start hurting. Even in places that aren't stressed by what I'm doing. (When sitting, my back and neck will start to hurt, but in bed, I might get pain in my feet or...
  30. Emmanuelle

    A Cure for ME-CFS? Please voice your opinion A weird Statistic in the news

    The New York Times covered this today. They did mention that many of the doctors involved in the study admitted that they have ties ($$$) to the insurance industry... Insurance companies have a vested interest in keeping this illness vague and suspect; no way do they want to have to pay for...