• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  • Smells
    Also, I wouldn’t have the strength these days to try it, but I have heard that clothes and linen washed the old fashioned way … boiled in a copper...
  • Smells
    I’ve always disliked cheap and nasty scented items. My mum never had anything like that in the house. She did wear perfume occasionally, but it...
  • Connecting the dots ... Is ME/CFS a complex fungal intolerance? (part 6)
    Part 7, the final post on this topic is posted...
  • Forgiveness
    It’s healing on so many levels. I’m human. It still affects me. But, just remembering this pathway I choose as I navigate all of these new...
  • Background info
    Hi Judee. Thanks for the feedback. I went 6 months on no meds and it made no difference. Will look at your links. Yes, most people would love to...

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Blogs
411
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3,200
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2,453,413
Comments
15,223
Blazer95
2 min read
Views
349
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4
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2
User Blogs
Hi friends, long time no see! Preparation Appointment at the HELP-apheresis clinic: I must say my first appointment at the clinic where I will get the HELP-apheresis next week was nice. He was incredibly careful not to forget anything to explain about this procedure, explaing possible side...
SpinachHands
2 min read
Views
475
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5
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9
User Blogs
I don't really have anyone I think I can talk to about this in real life, but I can't keep it all inside me either. My partner has ended things, they don't love me anymore, and as soon as they're well enough for someone else to look after them, they want me to leave. I think I want to leave too...
Howard
8 min read
Views
332
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6
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7
User Blogs
Days Past , Days Pass Most of the body of this blog effort happened on Thursday. Today is Saturday. Tomorrow is Sunday. Basically, that's how the days of the week work. In the United States of America, many people don't know this. Unfortunately there's a pronounced element of brainwashed...
sunshine44
2 min read
Views
100
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2
User Blogs
Well…. My body is STRONGLY feeling the pull of this eclipse. No surprise. I first went down around 2017 eclipse and knew the 2024 one would affect me as well. These things are like full moons on steroids for some of us. 🙈😵‍💫 Anywaayysss with the eclipse on my mind and distracting from immense...
sunshine44
1 min read
Views
177
Reaction score
6
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4
User Blogs
“There will be a time, when the dark finds out that it has been serving the light.” ~ Similarion J.R.R. Tolkien Many in the me/cfs community are more tuned in than not I have found. Partially by necessity at times from this wretched illness forcing us into cocoons that break (and...
Artemisia
2 min read
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288
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3
User Blogs
When physical activity was an essential creative outlet, what to do when it's no longer available? I was the slowest on sports teams as a kid (background fatigue issues from early childhood). But I always loved to swim. In my early 20s I got really into yoga, did it everyday for many years...
sunshine44
3 min read
Views
395
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8
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12
User Blogs
Hi everyone, Starting a new blog entry on it because … well I just am. I feel like posting a song. I’ve mostly not been able to listen to music past month. But, a song will do right now. Things have continued to be rocky with me. My family left town for 5? Days and I was on my own. After all...
Blazer95
2 min read
Views
303
Reaction score
3
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4
User Blogs
The title was intended to sound this confusing because it portrays my confusion best. Today on my daily and unreasonably high effort on treating this vietnam war zone of a disease called ME/CFS I stumbled uppon a guy that vlogged about his experiences with INUSpheresis. INUSpheresis is a type...
Blazer95
1 min read
Views
244
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2
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1
User Blogs
Today, I woke Up thinking I slept awesome because my Fitbit told so. Needless to say its always risky to make such a bold Statement when you have unpredictable ME. The watch told me i got 9h of sleep with a solid 2,5h of deep sleep. My HRV was at 45ms wich is very high for me so I thought wow...
Atlas
3 min read
Views
298
Reaction score
6
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4
User Blogs
"There is a river Whose streams make glad The city of God, the holy place God is within her; she will not fall God is her help at the break of day." ... There is a river. ... I found that when I'm able to let the "need for control" substitute god die in me, that's when I'm no longer in a...
godlovesatrier
2 min read
Views
440
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2
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8
User Blogs
Well since my last few updates I started to suffer from exhaustion and extreme tiredness by about Thursday into Friday. I had to take Fridays off work temporarily. I've probably done that for six weeks to help myself out. I think that running out of max dose lactoferrin, not having taken any...
sunshine44
1 min read
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1K
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11
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70
User Blogs
If you pray, will you pray for me please? I have covid pneumonia and was just sent home by ambulance by an overworked worn out ER. If you know how severe my situation already was, you know I could use all the prayers. 🙏💗
Tom Kindlon
6 min read
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1K
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(This relates to matters in the Republic of Ireland so may have minimal interest for people in other countries) I thought I would make a quick post to share some extracts from, and comments on, “The Green Paper on Disability Reform: a flawed effort to reform payments for people with...
godlovesatrier
3 min read
Views
288
Reaction score
4
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1
User Blogs
After herxing a lot yesterday taking 250mcg of kpv for a bad head cold I woke up today feeling pretty good, not 100% but still better than the previous day. Brainfog and worsened dizziness are very common with kpv but always abate the following day and almost always 90% of the time are followed...
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