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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. 3CFIDS@ourhouse

    This Sunday, Nov 18: Memorial Teleconference for Rich Van Konynenburg

    When I tried to put in the access code, I was given an error message. Very disappointed to be unable to join in on the memorial service.
  2. 3CFIDS@ourhouse

    Dr. Terry Wahls - MS recovery plan

    Maybe someone has already mentioned this, but aren't avocados one of the histamine-containing foods? I love them, could eat them daily, but they are a problem for me, along with other histamine containing foods.
  3. 3CFIDS@ourhouse

    Jamie's blog of March 2, 2012 - Gc-Maf

    Does Dr. Bradstreet take only autistic patients? His blog looks otherwise but that was my understanding.
  4. 3CFIDS@ourhouse

    Chronic Lymphocytopenia

    I've wondered about the low white count I've had for 12 years and if others with ME/CFS have it, too. How low is your typical white count? I've been sent to a hematologist/oncologist several times, but since I don't fit into their diagnostic boxes they just scratch their heads after running...
  5. 3CFIDS@ourhouse

    M.E. patient's family & friend letter

    I like the idea of a personal letter like this, and in the past have considered writing something similar, with my own specifics. I think a few people I know would read it and appreciate understanding more clearly. However, my experience in giving any details about symptoms is not usually met...
  6. 3CFIDS@ourhouse

    Bedsores

    Unfortunately, most egg-crate pads are made out of urethane foam which is super toxic for those of us with MCS. Any MCS sufferers with alternative ideas?
  7. 3CFIDS@ourhouse

    lithium experiences

    I tried my first dose of lithium orotate last night before going to bed, hoping it would help with sleep. Instead, I was half-awake all night long. :Retro frown:I wonder if the pesticide absorbed in the brain and nerves causes so much oxidative stress that I don't react normally to antioxidants...
  8. 3CFIDS@ourhouse

    lithium experiences

    I just ordered some lithium orotate and wondered how those of you taking it are doing now? Are you finding night-time dosing to help with sleep? Day-time to help with overstimulation? Any tips? Thank you!
  9. 3CFIDS@ourhouse

    Interesting article on Alzheimer's/possible infectious cause

    Alzheimers disease transmission may be similar to infectious prion diseases www.uthouston.edu/media/story.htm?id=3541058 HOUSTON (Oct. 4, 2011) The brain damage that characterizes Alzheimers disease may originate in a form similar to that of infectious prion diseases such as bovine...
  10. 3CFIDS@ourhouse

    Comment by '3CFIDS@ourhouse' in 'What Color is Fatigued?'

    Yes, grey, but how about a pale yellowish-grey? That is the color my husband tells me I look on bad days- or as he says, it's not a color a person should be :winking:.
  11. 3CFIDS@ourhouse

    Something that REALLY bothered me at the IACFS conference

    I'm not Dreambirdie, but I can attest to the same kind of reaction you had, Boule de feu. I'm so sorry this happened to you. When we have to live in our safer bubbles, after a while, we forget how dangerous it is "out there"! In our family, although we've told people we can't tolerate...
  12. 3CFIDS@ourhouse

    Comment by '3CFIDS@ourhouse' in 'Pregnancy Week 24 - Lifting of the brain fog'

    Allyann, we're so happy for you! It sounds like things are going very well and what a thrill it must be to feel this little one moving around! Enjoy every minute of your pregnancy- what a special joy.
  13. 3CFIDS@ourhouse

    Phoenix Rising's First (Official) Forum Manager

    Thank you, Dainty! :smiley-hug: Dainty, thank you! In taking care of us, please make sure you take care of yourself, too!
  14. 3CFIDS@ourhouse

    How to "sound proof" bedroom windows ??

    Thank you so much for taking the time and energy to share with us your hard work in finding a solution! I'm going to have my husband, who has been researching this issue for years, take a look at what you've done. My CFS/ME brain doesn't absorb details very well; he has a CFS/ME brain too but...
  15. 3CFIDS@ourhouse

    How to "sound proof" bedroom windows ??

    Pat, if you get this figured out, there is a market here! We have struggled for years to find some way to soundproof our windows. We have neighbors with roosters, neighbors who mow outside our windows just when we are napping in the afternoon, and neighbors who had a pack of little yippy dogs...
  16. 3CFIDS@ourhouse

    Nagalase levels

    Nagalase levels seem to fluctuate quite a bit. My first level was 3.0 just a few months ago, then recent testing showed a level of 1.9, with no realchange in my treatment to account for that. I think this testing is so new it may take some time to figure out what's what.
  17. 3CFIDS@ourhouse

    Sinus headache treatment

    Nielk, I know you've gotten lots of good advice here, but I'll just add what works for me. I absolutely cannot take antihistamines because they cause my sinuses to be even more congested and have even led to infections. Using a neti pot with saline and a drop of grapefruit seed extract (natural...
  18. 3CFIDS@ourhouse

    How Low Does Your Blood Pressure Go?

    I think most of us do and it seems that low blood volume and low anti-diuretic hormone are part of the problem. When I feel the worst, my bp is the lowest. Sometimes it's been as low as 79/46.
  19. 3CFIDS@ourhouse

    Castor Oil Packs - How to Video (8 Min.)

    I just found out that store receipts often have high levels of phthalates. Have you noticed the different feel to receipts now? Although many of us don't get out a lot, just handling these receipts and bills that have come in contact with the receipts adds to our already toxic overload...
  20. 3CFIDS@ourhouse

    Comment by '3CFIDS@ourhouse' in 'Good moments'

    Oh, Dainty, thank you for sharing the beauty of your day! Pain and disabling limitations make the small joys so exquisite! I know you will savor and live on the memory of the loveliness of this day- it is just a shadow of things to come!
  21. 3CFIDS@ourhouse

    Nagalase levels

    The three of us all have elevated nagalase, all around the 3.0 range.
  22. 3CFIDS@ourhouse

    Ear plugs and eye masks

    I couldn't use the eye masks that the drugstore carries- too rustly and stiff. I got an inexpensive one that works great by Earth Therapeutics. It's made from silk and cotton and is very comfortable. It has a velcro on elastic back and is adjustable. The earplugs are a problem- I've tried every...
  23. 3CFIDS@ourhouse

    Thyroid medication made me worse

    A doctor once explained it to me this way. Because of the damage to our mitochondria, our bodies have to "decide" how best to use limited resources. She said downregulating the thyroid and dropping body temperature are part of the compensations made. For many of us, even though our TSH may be...
  24. 3CFIDS@ourhouse

    Can methylation deficit effect on myelin tie together ME/CFS, autism,FM, MS, and EMH?

    As one whose brain function is deteriorating steadily, this discussion is way beyond my comprehension. But...having CFS/ME, multiple chemical sensitivity, and electro-magnetic sensitivity, I am fascinated by the bits and pieces I can comprehend and am so very grateful to those of you who are...
  25. 3CFIDS@ourhouse

    Comment by '3CFIDS@ourhouse' in 'From My Commonplace Book - 26'

    I enjoyed this, Merry, thank you! It reminds me a little bit of the Cohen refrain, "There is a crack in everything; that's how the light gets in."
  26. 3CFIDS@ourhouse

    Round 2 - Please Vote again For WPI. Time is short. Do it now!

    Kate, I wondered too about parents of children with autism- I thought they were a pretty active and connected group. Do we know if anyone has gotten them mobilized?
  27. 3CFIDS@ourhouse

    Have you voted in Round 2 of Chase Community Giving? (voting is anonymous)

    Frustrated here. I was not on Facebook and did not want to be, but I wanted to vote for the WPI and have been asking everyone I know to vote. So tonight I went through what is for me a laborious process to sign up and set the privacy and security settings. Then I went to vote and up comes a...
  28. 3CFIDS@ourhouse

    Comment by '3CFIDS@ourhouse' in 'Rain'

    Ah, Dainty, we are sisters! One of my favorite memories is walking with my dad in the rain and watching the holes in the sidewalk fill up with water. We've had a long dry spell-- everything parched and brown, the ground crying out for refreshment. Then, as I went to bed the other night, the rain...
  29. 3CFIDS@ourhouse

    Dating/relationship advice?

    Hi, HTree, I won't jump in here with advice, as I was married many years before my husband and I got CFS after exposure to a now-banned pesticide. Our daughter is now 20, has had CFS for 8 years and is too disabled to date, but I am aware of a group started by a PR member for young adults. I...
  30. 3CFIDS@ourhouse

    Comment by '3CFIDS@ourhouse' in 'Gratitude'

    This is so true! Thank you for putting these thoughts into words- it is an encouragement to me.