December 2010

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Recognisable?


We hope good health, happiness and a bright future is ahead for all of us.
You are not alone, that’s a fact! Let’s move forward in 2011!

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Posted by Cort Johnson

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Written by VillageLife

Giving Hope and Thanks This Christmas.
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Posted by Cort Johnson

Phoenix Rising is an officially designated 501 3C non-profit which means that donations are tax deductable, and, of course, we’d love to take some off your hands :)

Phoenix Rising is currently engaged in several exciting projects; two treatment and physician review projects to help patients better determine which treatments to take and which doctors to see, an large online survey to gather data on the types of CFS and a website overhaul.

We are a small but vital organization that aims to make a difference. Please Donate!

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Posted by Cort Johnson

Dr. Montoya runs the Infectious Disease Clinic at Stanford University. His 50 plus publications have focused on wide range of pathogens including toxoplasma, encephalomyelitis, herpesvirus 6, cytomegalovirus, acanthoamoeba, and many more etc. A preliminary study several years ago suggesting that antiviral therapy returned a large percentage of the recipients to health sent a jolt through the ME/CFS Community. A followup study will soon be released.

He recently sent a letter to his patients and supporters that caught them up to date on his work and his plans for chronic fatigue syndrome and other chronic inflammatory infectious disorders.… Read More

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Posted by Cort Johnson

Dr. Racaniello Retracts Statement About XMRV and CFS – showing an admirable commitment to the pursuit of the truth Dr Racaniello made an abrupt about face regarding his statement that the four papers were ‘probably the beginning of the end of XMRV and CFS’. His new blog “XMRV and CFS- It’s Not the End’ paints a very different picture andemonstrates just how difficult a subject this is. Dr. Racaniello runs a research lab – he is well versed in this field – yet this is what it took for him to alter his opinion:

“I read the papers over again, and began checking XMRV sequences in Genbank.

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Posted by Cort Johnson

The Retrovirology Papers: Day Two – Not surprisingly the media jumped on the titillating but wrong story and stated XMRV was done and that it was not the cause of ME/CFS. XMRV certainly did take a hit, yesterday, but several important names, particularly Dr. Coffin – who was a co-author of two of the papers , and has been doing his own research on how to tell XMRV apart from a contaminant, refused to fold XMRV’s tent stating that the arguments against XMRV were subtle and indirect and that none of them directly indicated the WPI had inadvertently come with a contaminant.… Read More

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What is ME/CFS Video

December 21, 2010

Posted by Cort Johnson

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Written by LaurelB

Hey, all:

I have a new video up on YouTube to help try to raise awareness. Due to my health, it took me over 4 months to complete.

You can find it below:

I have disabled comments for the video because I’m too sick to monitor them on a regular basis. However, you are free to give the video a thumbs up or down as you feel appropriate. :)

Thanks! And thanks to all those who helped me with suggestions and clarifications!… Read More

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ME/CFS Books for the Holidays

December 21, 2010

Posted by Cort Johnson

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All these books are by people with ME/CFS and all have received excellent reviews. This is an opportunity to support people with ME/CFS and get a good read in at the same time. If you know of other books please add them in the comments :)

4634-unbroken.jpgUnbroken by Lauren Hillebrand

Already 180 reviews on Amazon – a solid five-starer…Lauren Hillenbrandt has struck again…..Amazon Best Books of the Month, November 2010: From Laura Hillenbrand, the bestselling author of Seabiscuit, comes Unbroken, the inspiring true story of a man who lived through a series of catastrophes almost too incredible to be believed.… Read More

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Posted by Cort Johnson

The WPI response to the Papers Published in Retrovirology

The Lombardi et al. and Lo et al. studies were done using four different methods of detection. They were not simply PCR experiments, as were the studies by McClure et al. and others who have recently reported their difficulties with contamination. Experienced researchers such as Mikovits, Lombardi, Lo and their collaborators understand the limitations of PCR technology, especially the possibility of sample contamination.

As a result, we and Lo et al. conducted rigorous studies to prevent and rule out any possibility that the results reported were from contamination.

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Posted by Cort Johnson

Retrovirology Journal Publishes Four Studies on XMRV and Contamination Retrovirology today published four studies that focus on the contamination issue with XMRV. None of them are definitive, and none of them demonstrate that contamination resulted in the findings of the original paper, but they do indicate how careful researchers have to be when they explore this particular line of viruses..

Check out overviews of the papers here and a long discussion hereRead More

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A XMAS VIDEO

December 18, 2010

Posted by Cort Johnson

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Written by Lucinda

Happy Christmas :)

xxxxx… Read More

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Posted by Cort Johnson

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4619-Christmas-Presents.jpgShopping! The easy way to support Phoenix Rising as it becomes a non-profit and begins taking on some large projects. Every time you use Phoenix Rising to purchase something on Amazon.com Phoenix Rising will receive a 4 to 8% return on your purchase. All your purchases will take place on a special Phoenix Rising section of the Amazon site using Amazon’s secure technology.

Phoenix Rising has complete one-stop shopping United States, United Kingdom, French and German Amazon.com Stores.

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Written by Otis

4612-Upwards.jpgSupport CFS at the Dept of Health and Human Services – register for the CAA Blood Working Group Seminar

The DHHS is where the money is. Whether you love, like, dislike or cringe at the idea of being associated with the CFIDS Association, I encourage you to register – so that the DHHS gets that we are interested in this vital subject.

From Jennie:

DHHS has expressed interest in the number of people who register for/attend the Association’s webinar on the BWG study as a way of gauging the community’s interest in the study.Read More
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Posted by Cort Johnson

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4613-XMRVWPI.jpg

A Wild Day- the Blood Working Group Reports - All thanks have to go to ValB626 on the MECFS Forums for just pouring out page after page of details from the hours of testimony and discussion on XMRV. Without it we would have had very little.

It was exciting, we learned quite a bit but unfortunately little resolution was in sight and in some ways the two sides seem to have dug in deeper. It seems clear, for instance, that Dr. Stoye has made up his mind.

Dr. Coffin seems to be more concerned about the possibility of contamination than before and probed Alter/Lo quite strongly but is waiting for more evidence before he makes up his mind.Read More

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Posted by Cort Johnson

(This brings my story on the website up to date)

After 25 years plus with ME/CFS I had tried all sorts of treatments. For about the first 10 years nothing worked and then all of a sudden lots of things began to work. Zinc solution, for some reason, all of sudden, bumped up my energy noticeably. A single dose of transfer factor briefly seemed to almost transport me back to my former period of health leaving me with the uncanny sensation that I had temporarily touched a realm of clarity that had been sitting there unaccessed for over a decade.… Read More

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Posted by Cort Johnson

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Register For Blood Working Group CFS Webinar – Support CFS at the Dept of Health and Human Services – register for the CAA Blood Working Group Seminar

The DHHS is where the money is. Whether you love, like, dislike or cringe at the idea of being associated with the CFIDS Association, I encourage you to register – so that the DHHS gets that we are interested in this vital subject.

From Jennie Spotila:

DHHS has expressed interest in the number of people who register for/attend the Association’s webinar on the BWG study as a way of gauging the community’s interest in the study.… Read More

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Posted by Cort Johnson

Could the first drug for ME/CFS be a chemotherapeutic drug? That would sound like a long shot at best but the fact is a two physicians in Norway are having surprising success with a drug originally developed to treat cancer.

Their Story

Dr. Fluge and Dr. Olav Mella of Haukeland University Hospital in Bergen, Norway, began their investigation of Rituximab’s effects on CFS after treating several Hodgkin’s Lymphoma patients who had long standing cases of CFS prior to developing cancer.

To the doctors’ (and the patients!) surprise the three people with ME/CFS reported they began experiencing significant improvement in their ME/CFS symptoms some 6-12 (16) weeks after completing their chemotherapy regimen.… Read More

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Written by ggingues

(I snagged this from the Lifestyle Management section. This is another example of doing little things that to help improve one’s quality of life. Focused resting is a very different and, I find, much more pleasurable and restful way of resting than simply lying there. It’s not sexy and it’s no cure – but it might be able to help

Anytime I think about rest, I picture myself sleeping or just relaxing on my bed with its nice fluffy pillows — but, according to Matthew Edlund, MD, author of the book “The Power of Rest: Why Sleep Alone Is Not Enough, this restricted vision of rest limits the benefits that we get from it.… Read More

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Posted by Cort Johnson

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4611-Tyrosine.jpgThis interesting post came in an email from a parasitology professor who looked at his formerly robust wife sleeping 23 hours a day and, in the face of the considerable confusion, thought of African Sleeping Sickness which depletes the CNS of tyrosine possibly putting the infected person in a state of somnolence. Interestingly, just before she got ill she was given a combination of drugs that knocked down Natural killer cell functioning -perhaps providing the opening for whatever pathogen rushed in.

She got better and then we hear what we hear too often, she came down with another infection, that knocked her out again but she slowly recovered.… Read More

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Posted by Cort Johnson

Phase II of BWG Study is Complete (Really!) - The CFIDS Association today announced that the oh so important (and time consuming) second section of the BWG’s study focusing on sample preparation and sample storage is complete and that the results will be announced at the BWG’s meeting, just 3 days from now (Dec 14th) (gulp). The meeting is open to the public (if you happen to be in Gaithersburg, MD) but is not webcast; just three days later, though, a CFIDS Association webinar (register here) will feature two members of the BWG who will talk about the results and where they go from here.… Read More

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