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

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    International experts speak out against the IOM contract to determine clinical diagnostic criteria

    wow, great start to my day seeing this letter from all of our wonderful researchers and doctors. I can't wait to see what happens next. Sign me up with any follow through letters we may need to sign and send. Lets put money into research.
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    ME CFS conference in New York 20th November 2013 relating to treatment .

    This sounds great. I am going to be in NY too late, so sad I will miss it. Perhaps I should instead try to see Dr Enlander. Anyone know how expensive, I am Canadian so will have no medical coverage.
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    To Give Or Not To Give...and How Much?

    Thanks Mark, I will try and see if that works for me. I guess I would need two of those Amazon links, one for Canada Amazon and one for US Amazon. Thanks for the help.
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    To Give Or Not To Give...and How Much?

    Is there a way to have an Amazon icon that is linked to Phoenix Rising site that you can just click from your own page. It would be much easier then having to go to this site first and then find the link. Hopeful... I also would like us somehow to get to a stage where we are as big as Breast...
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    Vote from Any Country for ME/FM Charity to Win $20,000!

    Hi everyone, I have been sending out links via Facebook, one thing to make things easier I have also linked Phoenix Rising but the link comes up with this http://phoenixrising.me/archives/15930 Is there anyway to change the links name so it reflects what we are doing and usually a...
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    Vote from Any Country for ME/FM Charity to Win $20,000!

    Alright I have voted, an early morning for me (from Canada) 8:42 a.m. Thank-you for making it so easy. Now to get busy sharing the link. Thanks for everyones support around the world! Great big gentle hugs, Lynn
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    Aviva Hots Up! Hours left to Vote, $100k up for grabs

    Thanks so much Cort for sending out this letter. I believe research from each country needs our support and you never know when we may find treatment or a cure. So everyone please vote. We need your help. Gentle hugs, but fierce determination to help us make it through.
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    The "Obama Promise" Fulfilled: Obama Requests NIH Elevate Priority of Chronic Fatigue Syndrome

    Thanks I sent a thank-you and put in a paragraph of my own words. I am from Canada and I feel it is just as important for us Canadians to thank him as we are one global community. What ever helps one will help all of us. Thanks for starting this, and thanks to the Millers too.
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    Dr. Byron Hyde Skype consult?

    I don't know if it would be worthwhile. A year ago I asked about being a patient and the cost. I received a letter or email stating that they are more into testing and researching. The cost was expensive and you still need your own doctor. I declined or I should say declined putting myself on...
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    Endometriosis, do you have it?

    I have severe endo, stage 4. I had it since I was 14. Pregnancy did not give me any remission at all. Eventually I had a hysterectomy, that did not fix the situation, the endo continued, and I got the bonus of severe adhesions. The only benefit is no longer having a period. I too have high...
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    Article: Transcription of Judy Mikovits Prohealth Lecture: Parts VI and VII: Q & A

    Very exciting to see all this information and how it is moving forward. It seems so long since they found XMRV and I am anxious to get feeling better before I am too old to enjoy good health. Thanks so much for the transcription.
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    Article: Breaking Out!

    Thanks for a very inspiring and emotional journey. I hope one day soon we may all have access to Ampligen or something that will make us better too. Just to see one person getting well inspires me. Thanks.
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    Article: A Time To Act!

    Does this cause have a charitable donation number. I only ask because this may bring in donors who are more willing to give if they knew there was a tax benefit. You may then snag a larger donor partner.
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    Eradicating HMRV (or whatever they name it next)

    follicular dendritic cells http://www.kaisernetwork.org/daily_r...fm?DR_ID=52182 various types of stem cells (progenitor and hemopoetic) http://www.the-scientist.com/blog/display/57203/ astrocytes (glial cells in the brain) http://pag.aids2010.org/Abstracts.aspx?AID=6543 macrophages...and...
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    Article: An Altered Reality for ME/CFS: Dr. Mikovits Breaks the News on the Alter Pap

    Heck I just decided to send the article and see what he says. Well I sent it to his wife, hoping she will pass it on. If I hear anything I will let you know.
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    Article: An Altered Reality for ME/CFS: Dr. Mikovits Breaks the News on the Alter Pap

    Tracking Medical Research for Gulf War Veterans August 17, 2010 posted by Denise Nichols Leave a Comment Hot News Is Expected for Chronic Fatigue Sufferers XMRV Findings More Expected This is exciting news in the civilian world for Chronic Fatigue Sufferers that may very well lead to...
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    Article: An Altered Reality for ME/CFS: Dr. Mikovits Breaks the News on the Alter Pap

    Daffodil: I don't know if that is true that they are not looking for more viruses. While watching Mrs Whitmore on the piece by her and her daughter today she spoke about a way the blood services may test things so that all diseases would be excluded. So it must be a very interesting test they...
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    Article: An Altered Reality for ME/CFS: Dr. Mikovits Breaks the News on the Alter Pap

    Thanks Cort, you are right, I began the day in such a hopeful way with all this information, it is going to get better. It will get better. I just got so depressed trying to do a little cleaning as the house is so dirty and just felt too sick to try, that I got down and I think that is where the...
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    Article: An Altered Reality for ME/CFS: Dr. Mikovits Breaks the News on the Alter Pap

    Daffodil: I am so sorry you are still sick even on the HIV meds. There are I am sure a lot of variables with XMRV and how all of this will pan out. Perhaps you are not on the right types of medicine for the disease, only time will tell. Perhaps you just need time for your body to get used to...
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    Article: An Altered Reality for ME/CFS: Dr. Mikovits Breaks the News on the Alter Pap

    I too wonder what drugs they are using. I am so excited and feel a glass of champagne is in order, but then again you wonder if the rug will be pulled out once again. Of course my other fear is what happens when they finally get a test for us to take and I am the one found not to have it and...
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    Comment by 'cruzgirl' in '1991 lab test at Cheney Clinic. Opposing replies from Dr. Cheney and Dr. Lapp'

    Amazing how I keep finding info about polio vaccine and CFIDS. My Mother had polio and has post polio, has there ever been a study to see how many of us are children of polio parents? Curious. Hope you get your answers.
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    link between crohn's and a virus and gene mutation. Will CFIDS have the same result?

    I believe this is just the start of it. We will find many diseases have these implications. I participated in a study on auto immune diseases and how they run in families, perhaps there will be a link with that as well. All I know is that we don't know a lot about medicine yet. For...
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    link between crohn's and a virus and gene mutation. Will CFIDS have the same result?

    Just noticed this as well, interesting read but similar to the others. http://www.the-scientist.com/blog/display/57509/
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    link between crohn's and a virus and gene mutation. Will CFIDS have the same result?

    This article is interesting because it established a link between crohn's and a virus and gene mutation. Perhaps what we will see is that many diseases will have this same issue. Virus plus gene mutation equals .... http://www.bionews.org.uk/page_65452.asp also you can find another...
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    SIGN PETITION! XMRV: Allow Science To Progress

    http://www.gopetition.co.uk/petitions/justice-for-cfs-me-sufferers/sign.html another place to petition, available for Canadians and worldwide I believe. I copied a portion of the study from this forum about the suppresion of the studies and hoped that it would help. Good luck. Lynn
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    possible letter to the Australian Health Minister

    Alex, I am very interested in what you are doing. I think it is great. Yes some of the replies make sence but in the end it is your letter. I would love to see your end letter and I will forward it on to the Canadian ministers as well. The more governments knowing about this can only help us in...
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    FDA/NIH XMRV paper ON HOLD

    Is there a petition that those from around the world can sign? I just went to the petion site and only those from the US can sign.
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    FDA/NIH XMRV paper ON HOLD

    I just asked a friend of mine who is a big proponent of breast feeding, she organizes clubs about this (Laleche) goes to world-wide conferences etc. I asked her what she new about XMRV and how it affected breast milk. I explained this would concern ME/CFIDS Moms. I had the fastest response back...
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    Comment by 'cruzgirl' in 'Illness & Invisibility'

    Tremendously enjoyed the insights, well written, thank-you.
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    Comment by 'cruzgirl' in 'CFS Similarities'

    I just wanted to say that my Dad was sick for a couple of years. Each year when I went home I booked an appointment with his doctor to see if I could get her to diagnose him because I thought he had cancer. He was very fatigued and had numerous other symptoms. She told me each time he looked too...