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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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Nobody's ComingI wonder if Dr Claire Taylor might be able to help. I have not had an appointment with her personally but I know people on this baord have talked... -
Nobody's ComingI"m so sorry that you have to deal with this. And you're doing a great job. I am in the US, but we have some similar version of the same... -
Nobody's ComingIt’s truly atrocious. I’ve written about it much on my blog. I remember in the beginning years, thinking, oh they are going to come running in... -
Not Exactly an Emergency / The Beat Heat ManifestoI would suggest trying one of the over the counter products by Nestlé first. More affordable. The Liquid Hope and the Kate Farms formula cost... -
Not Exactly an Emergency / The Beat Heat ManifestoIs this the product you have been using ? https://www.functionalformularies.com/product/liquid-hope-peptide-high-protein/ I might have to get...
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I think we should be doing more. We should be suspicious of the power of the CDC PR machine.
I think a fund should be started to take out a full page ad in the Washington Post with a letter to t American
Public from ME/CFS patients telling them that their government is supressing information...
I have waited 6 full months to be able to say this, and the day has finally arrived. So here it is: I know without a shadow of a doubt that Ampligen works. As I finish my 24th week of Ampligen, I can say with confidence that this amazing drug has performed "as advertised," and then some.
I...
]Hillary Johnson has just posted a long blog that provides alot of backup information on the controversies over the last couple of weeks. According to one of her resources the directors of the NIAID and the NIH as well as administrators at the CDC, were all involved in the withdrawal of the...
I posted this at a thread but thought i would be good to put in a blog. (I've broke it down to one more stage)
As far as stages go with CFS, my case has certain had various stages. I could break it down to 5 quite distinct stages I went throu
Stage one.. very flu like and on and off...
I am a pretty private person. I didnt use to be, but with CFS, energy conservation comes first. Heck, Im a long time member of Phoenix Rising and I still dont have 100 posts.
Yet I want to do more with my limited energy. Youve probably heard by now that PANDORA has a good shot at winning...
This isnt going to be all that interesting post but i just wanted to keep track of what was going on for me as far as medical stuff goes. I will at some point probably soon do a post on how my CFS/ME started 13 yrs ago and all the over 80 symptoms ive had with this illness.
My CFS is very...
I went to the doctor on Monday. I had the 3rd shot. I found out from my doctor, that I am not supposed to talk about this shot. Not supposed to let anyone know how I am doing or how much it's helping my energy levels or allergies. Not to mention the lack of fibro pain. The fact that I went to a...
I learned a few valuable lessons from the disabled dating site I belong to. And I wanted to post to warn others of what's going on with them.
The disabled dating sites are infested with scammers who prey on the disabled and with woman haters who only want cybersex, often with every...
June 22, 2010- Ortho releases a press release claiming that the FDA and NIH have independently confirmed in a soon to be published paper the WPI findings linking XMRV (a new retrovirus) to ME/CFS. http://www.mmdnewswire.com/xmrv-9040.html
ORTHO contacted Dr. Harvey Alter today for a reaction...
Yeah, you'd think I'd learn by now. But I had a choice of staying in or going out with my friend. And I didn't want to stay in. Which also goes back to how up and down this disease can be.
Wednesday, I was so sick with pain and all the other symptoms, that I was feeling suicidal from it...
Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:place w:st="on"><st1:country-region w:st="on">United...
July 1st is a day of remembrance for me. It was this day six years ago when my mother passed away from complications of the same illnesses I now have Chronic Fatigue Syndrome (CFS) and Multiple Chemical Sensitivities (MCS).
She was only 55.
Ivanna Pausmann led a difficult but very...
With my nose completely shut due to allergies, out of desperation the other day I took an OTC antihistamine. It was Italian day at lunch and I had grown weary of not tasting any of my food, so ignoring the instruction panel I ripped open the package where the headline read "Daytime Safe Formula"...
Nearly another month and still not doing well.
Jeremy is slowly (very slowly) seeing improvements with the twice daily nasal rinsing using oregano oil, salt, baking soda, and water. The glutathione nasal spray is also helping to heal his sinus infection. Its very slow improvement, a little...
Please watch my youtube video.
Yesterday, I was better. I wasn't lightheaded for once and I drove to the store. It was sunny out, too hot, but beautiful. And I actually enjoyed driving. The only thing that was really bugging me was the Lyme arthritis. Other than that, I didn't feel too bad. And I was pretty much okay in...
While skimming last Sundays newspaper my attention was drawn to Parade magazine with an article about cancer survivors. As a disabled patient with CFS, I am forever intrigued by the way people with disabling illness cope.
I do not know how many comparisons can be drawn between CFS and cancer...
Patients leapt for joy at the news suggesting that the WPIs findings have been validated by two major institutions in the US but not everybody was happy that the information had been released in a way it was. The Whittemore Peterson Institute posted a link to Dr. Raccienllos blog but refused to...
Dutch Journalists have been all over the European XMRV Conferences. Now in a startling announcement two Dutch journalists from the Health Professionals Journal Ortho report that they were able to obtain a lecture from NIH official Dr. Harvey Alter at the Blood Transfusion workshop May 26/27th in...
From my blog at: http://dreamsatstake.blogspot.com
ME/CFS has often been referred to as an invisible illness. This is because, for the most part, we don't actually look sick. While the severity of ME/CFS varies from mild to severe, the disability levels of those more seriously afflicted have...