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

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User Blogs

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margib
2 min read
Views
801
Comments
2
User Blogs
Sometimes I think I'm okay, I'm going to make it, this isn't so bad, & sometimes I think, I'm only trying not to die every day, & this might be the best it will ever be. It is hard to be the one on the list that no one knows what to do with, even the professionals & the experts. This is one of...
Victoria
5 min read
Views
783
Comments
4
User Blogs
(An extract from my diary early August 2009, with a few words of explanation tacked on) Pain & Suffering. In the early hours of last Wednesday morning (5th August), I awoke bathed in perspiration and drenched in the most unbelievable pain imaginable. This was it, I thought. This was the...
Victoria
7 min read
Views
1K
Comments
5
User Blogs
Not only are the 38 Bach Flower Remedies free from side effects & inexpensive, they are simply administered, even to those most debilitated (and unable to take harsh drugs & other invasive treatments). Everyone of us is a healer, because every one of us at heart has a love for something, for...
Victoria
3 min read
Views
447
User Blogs
What is the Paleo Diet ? The paleo diet is simply the hunter-gatherer diet of the Paleolithic era (ie before the Neolithic age when man became agriculturalists). Our Paleolithic ancestors were lean, fit and free from heart disease and the other ailments that plague Western countries. They...
Michelle
5 min read
Views
1K
Comments
7
User Blogs
A year ago I tried examining the question of why ME/CFS patients have been so unable to advocate for themselves effectively, particularly in the arena of fundraising. Except I did not find my thoughts particularly enlightening, even as I have continued to feel there are good reasons to explain...
margib
2 min read
Views
488
Comments
1
User Blogs
Why I like birth? Everything to do with birth? Because it feels like a do-over. Every birth I've been to has been special, each one different, & I've felt lucky & honored to be there. Like witnessing a re-do of my own life. At a birth, right before the baby is born, time stands still, & you...
Cort
5 min read
Views
498
Comments
1
User Blogs
THE CDC/CFSAC BLOGS #1 Dr. Ken Friedberg, board member of the IACFS/ME, just reported the first documented case of a person coming down with chronic fatigue syndrome (ME/CFS) as a result of getting the swine flu virus. This is what he said: A Hard Hit Group Swine flu is often innocuous...
Michelle
9 min read
Views
707
Comments
2
User Blogs
I woke up Tuesday with a sticky despondency I have not felt in a very long time. It was early -- that is, in Michelle-world, 1 pm -- as I had an appointment with my primary care provider to discuss the lower right abdominal pain I've been having for five years. Except I knew there was little...
margib
1 min read
Views
539
Comments
1
User Blogs
My level of functioning today. More importantly, your age. 2: The number of times in an hour you ask me to play. 2: The number of times I say no. 2: The number of words in the phrase, I'm sorry. I'm trying, but I'm so weak. I am used to being weak sometimes. But you are not used...
Michelle
1 min read
Views
956
Comments
5
User Blogs
The word fuck never crossed my lips until I got sick. Until I got vertigo, to be exact. I had just started my first grown-up (i.e. non academic) job (Public Relations) in June 2000. I even had my own cubicle and business cards. Then I woke up the day after Independence Day with everything...
margib
2 min read
Views
1K
Comments
7
User Blogs
My food sensitivities are finally catching up to me. A few weeks ago, I felt my throat close up after eating pumpkin seeds. I know that food category can be a little weird for people, so I didn't think much of it, until last night, when my throat started to close after eating a spirulina bar...
margib
2 min read
Views
500
Comments
1
User Blogs
I'm trying to catch any anatomy of the Year of the Tiger. I want 2010 to be here, to wipe this year off the map. Eeny meeny miney mo is also how, you may have observed, dear readers, I seem to choose my supplements. Today I did one dose of Asian goo. I finally realized where I recognized the...
margib
1 min read
Views
398
User Blogs
I was at a 3 when I got up today, sooo exhausted, & took the Fluconazole, realized I still had an empty stomach so gave the lactoferrin a whirl (it does have , after all), then felt brave enough to try the Asian goo, which was my one hit of sugar for the day. I also felt much better after skin...
margib
1 min read
Views
416
User Blogs
...that B-12 is too much to take b/c of the mercury/metals, that I should be taking MSM to clear it...what next? I'm so confused! I think I was again sidelined by an encounter with some delicious rice/corn chips; if I don't get a hold of DN soon, I will totally lose my mojo to become a...
margib
2 min read
Views
581
Comments
1
User Blogs
Also, Dude, Chronic Fatigue is not the preferred nomenclature. Myalgic Encephalomyelitis, please. I have drawn a line in the sand when it comes to coffee & milk in the mornings. For this, I may not budge on. It is my Shomer Shabbos. Besides, both goat & rice milk taste pukey & hemp milk...
Cort
7 min read
Views
597
Comments
2
User Blogs
John Herds recent post on the past and future of ME/CFS advocacy provided a welcome change in tone from many of the strident posts weve seen lately and provided much room for thought. An important part of the post, however, was more of the same; while the posts tone was mild the post itself too...
margib
2 min read
Views
592
Comments
1
User Blogs
I really want to go to Ohio. I know I'm not even on the long list, but I need help. I know I listed my functioning as a 6, but it doesn't reflect that I'm functional about 1/3 of the day about 1/3 of the week. Yesterday, I was a 5; not too tired, but brain-fogged. Then I ate a delicious...
margib
1 min read
Views
400
User Blogs
...right out of my body. Stop stirring around my brain & reabsorbing & poisoning me. I cannot get you out! Yesterday, I will call a 6, though toward the end of the day, immense brain fog & some serious fatigue kicked in. Compared to how scary last weekend was & how dark my mood has been...
Jody
1 min read
Views
412
User Blogs
There is an alchemy that comes about in relationship to others that cannot come into existence in isolation. Can you picture a hammock tied to only one tree?
My favorite place to be is in my pool...which is where I feel the best! It's the best place to visit with a friend or read a book. There I exercise by swimming and stretching without stress on my body. It cools down my furnace body. And best of all, it provides alone time for thinking and...
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