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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. L

    Pacific Fatigue Lab disability testing

    Ann, here is an article that explains how Staci Stevens uses the heart monitor and perceived exertion rate to help distant patients find their anerobic threshold. You will need to read down some into the article to get to the info. http://www.cfids.org/cfidslink/2010/100604.asp
  2. L

    Cognitive Symptoms Are Scary

    I, too, have had that experience - but only a couple of times and in the first stage of the illness. I've also had the experience of not recognizing someone I knew perfectly well. Regrettably, I've also had a friend who has told me on several occasions that she feels the same things I do...
  3. L

    Bad reaction to flu shot

    I was referring to your post where you said: I remember the year I refused to have one. My GP wrote down in his notes (and this was sent to my insurance company, later): "My patient refuses to have her flu shots even though we advised her to have them." I clicked "reply" right under that...
  4. L

    Bad reaction to flu shot

    I was referring to your post where you said: I remember the year I refused to have one. My GP wrote down in his notes (and this was sent to my insurance company, later): "My patient refuses to have her flu shots even though we advised her to have them." I clicked "reply" right under that...
  5. L

    Bad reaction to flu shot

    Boule de feu, you know, there comes a time when you just need to tell your doctor: I had one already at the pharmacy.
  6. L

    anyone's core temperature drop with exertion?

    Mya, you said, "I was in the hospital a few months ago because of severe pain due to something unrelated to cfs and they took my temperature several times. It dropped from 98.7 down to 96.4. The doctors couldn't figure out what was going on. I wonder if it has to do with a cfs reaction to stress...
  7. L

    Our difficulties with current flu vaccine and dysautonomia

    For what it's worth, I had a bad reaction to this year's flu vaccine. Lips and tongue swelling and asthma and wheezing. Puzzles me as I have never had an adverse reaction to the flu vaccine - either before or after the onset of FM and ME/CFS symptoms. Anyone know if there were new or...
  8. L

    Pacific Fatigue Lab disability testing

    Response to Anncavan: I e-mailed Staci Stevens and rec'd word from her yesterday that because of lack of time and staffing, she is unable to do telephone consultations at the present time. In the future, as staffing permits, she hopes to resume the service. Sorry, if I got hopes up on...
  9. L

    Pacific Fatigue Lab disability testing

    I worked with Staci a few more sessions to get some appropriate exercises. The hand exercises were particularly helpful, as they enabled me to get some flexibility to do some art again.
  10. L

    anyone's core temperature drop with exertion?

    I've not taken my temp while exercising, but I have taken it after over-doing and there is a definite drop. I use my temp to gage if I need more rest. If it's low, I rest until my temp approaches normal. My understanding also is that lowered temperature when, or after, exercising is normal for...
  11. L

    Pacific Fatigue Lab disability testing

    Interesting to hear of your experience, Helen. I worked with Staci via telephone to discover my aerobic threshold and to get some exercise instruction. (Workwell Foundation. You can find it on Google.) The way that she estimated the aerobic threshold long distance was for me to wear a...
  12. L

    Post Exertional Malaise and Diagnosis

    I'm sure this has been talked about somewhere, but I don't have the strength to find it. Can a person have post exertional malaise and *not* have ME/CFS? My doc said FM and ME/CFS were essentially the same thing. I also recall Dr. David Bell saying something similar. I feel like I'm in...
  13. L

    Senate Bill endangering our right to supplements

    It Would Really Be Helpful for Everyone to Write Their Senators & Reps! This is disappointing, Frickly. I just contacted Kay B. H. also. Looks like she's getting in line behind her party. Sunday, I like your approach. Some of my friends suggest if you are writing a Republican to stress...
  14. L

    Senate Bill endangering our right to supplements

    Not sure if this has been posted or not, but we who are too sensitive for pharmaceuticals and need to rely on supplements need to contact our senators and representative and oppose S. 3002, the Dietary Supplement Safety Act. Here is a website with details. My fingers don't have the strength...
  15. L

    XMRV Positive? What are your symptoms/medical history?

    Eyes too weak to comb through all 18 pages, so don't know if cause of onset has been mentioned. (Made it through seven, though!) I would be interested in knowing what triggered people's onset, for example, viral illness, bacterial illness, anaphylaxis, surgery, immunizations, emotional...
  16. L

    Cause of Death among Patients with Chronic Fatigue Syndrome

    Kathi, no. You cannot die early. There must be a way. The money has to be found and Dr. Cheney must/can help you. Your soul is too beautiful. (I know you from other groups, also.) I send my energy, my prayers, my hope. Do not give up! You contribute loveliness every day of your life...
  17. L

    A trip to Florida! CFS Clinic (Dr. Klimas)

    Pardon my ignorance, but if you have the RNAse L, necrosis, chlamydia, etc., tests, how do these help you? Are they for diagnostic purposes or treatment?
  18. L

    (OT?) "Psychiatry during the Nazi era: ethical lessons for the modern professional"

    Current practices regarding ME in the UK, and the use of psychiatry in the Nazi era, remind me of the punitive psychiatry in the Gulag Archipelago. If memory serves me correctly, it was the intellectuals who were branded mentally ill in that scenario. Governments calling somebody crazy to...
  19. L

    Do you look markedly younger than your age?

    When I first got this I looked markedly younger, but in the last three years I have gone down hill and look much older. (I've had the illness four years.) I am one of the few who lost weight rather than gained. This didn't help.
  20. L

    Christianity & CFS

    Thanks to you too, Robin. We could not have a safe place in this forum for sharing information and ideas without you guys.
  21. L

    Christianity & CFS

    Martlet, I think you did an excellent job and used great restraint and patience. Thank you.
  22. L

    XMRV stigma starting already

    Lucie's in protective mode Thank you for your response oerganix. I understand where the term "Reeves Disease" came from and that it is a term of derision. I was responding to Kati's post. Quote from her post: Honestly, I am still in the clan that would rather have XAND than Reeves's disease...
  23. L

    XMRV stigma starting already

    Beautiful post, oerganix. T'is more than merely interesting that the spiritual traditions have harmonics with each other on suffering and giving succor to the suffering. I think it's a sign... :-) Now, may I share my thoughts on "Reeves' Disease?" It's too bad that name is catching on with...
  24. L

    Buddhism & CFS

    Koan, we weren't all there for those moments. Some of us lower-functioning ones can only read and digest a bit at a time, coming back as we can for a bit more. But do what you need to do. Lucie
  25. L

    Buddhism & CFS

    Thanks I love the idea of the Monday Metta virtual meditation group on the stillpoint site. Lucie
  26. L

    Buddhism & CFS

    Yes, Koan. Unfortunately I cannot read and keep up every day even in a CFS world. That's why I loved the beginning of this thread. It helped me deal with that fact. Could you private message me if you know a forum, Yahoo group, etc. that is a peaceful non-provocative place to learn and...
  27. L

    Buddhism & CFS

    I'm missing the posts on Buddhism in this thread. Where did they go? Blown to the winds like a Tibetan mandala? Lucie
  28. L

    Buddhism & CFS

    Thanks, Teejkay, for the suggestions on Thich Nhat Hahn books. I read some in his work many years ago. I can't read much now, but for the purpose of learning more about Buddhism, this has been a good thing. I found my old copy of Huston Smith's _Religions of Man_ and began reading on the...
  29. L

    Buddhism & CFS

    This thread on Buddhism and CFS is wonderful. I'm not thinking well, but a few responses and questions come to mind. One: My linear Western mind wonders if there is a specific starting place. Yes, the meditation, and your descriptions, are quite good. And some of you mentioned teachers. But...
  30. L

    Weird symptoms by Sandy Johnson

    A little glockenspiel music, anyone? I, myself, am astounded at how strange some of my symptoms are. When I scratch the left side of my neck, it makes a glockenspiel sound in my left ear, as if I'm playing an instrument - one sound for each stroke. This is usually at night. Three nights...