April 2010

Posted by Cort Johnson

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2429-lightning..gifDr. Frivold is the husband of Berit Frivold, who’s recovery from ME/CFS using the Lightning Process, was posted a month or so ago. Dr. Frivold, is naturally very happy that his wife has recovered and, after reading the discussion on Berit’s recovery, sent me these observations.

I recognize this is a difficult topic that can be disturbing. My feeling is that any treatment that helps someone deserves space because it could help others. ME/CFS is a broad and variable condition in which we regularly find people responding differently to drugs, supplements and other treatments .… Read More

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ANGER and Mind Training

April 30, 2010

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Written by Victoria

2430-anger-management__46.jpgWhat are we here for? Perhaps we are simply here for the opportunity to become so happy that we no longer care what we are here for! (wrote my Astrologer today…..).

How many people are genuinely happy? I don’t mean happy because they have material possessions or the perfect wife/husband/partner. I’m talking about inner joy & peace.

Happiness is not a switch that you can turn ON or OFF at will. If it was, the Universe & all who live in it would be eternally happy. We would never use the OFF switch, because, let’s face it, who wants to be UNhappy.… Read More

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Posted by Cort Johnson

Dr. Mikovits has been in touch with patients more than any other researcher by several magnitudes and a couple of days ago I got to chat with her on a variety of topics.

Some questions had been raised about the WPI’s two collaborators in the Science paper, the National Cancer Institute and the Cleveland Clinic. We hadn’t heard a word from any of them since the just after the Science paper came out. Dr. Ruscetti of the National Cancer Institute did show up for the CFSAC meeting in late Oct of last year but they’d been laying low since.… Read More

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The Phoenix Rising Video

April 25, 2010

Posted by Cort Johnson

Teejkay has done an amazing job on this poignant video on ME/CFS done to a striking song on ME called “Everyone Knows About ME” from Cinderkeys

Feel free to put this video on Blogs, FB or wherever you want.

You can access it at:

From TeejKay

Thank you very much to everyone who sent in your wonderful pictures and a big thank you to Cinderkeys for letting us use your awesome song, Everybody Knows About Me.
Thank you Dreambirdie for your tips and support.

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Posted by Cort Johnson

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Written by teejkay

The Phoenix Rising ME/CFS YouTube video is up.

Thank you very much to everyone who sent in your wonderful pictures and a big thank you to Cinderkeys for letting us use your awesome song, Everybody Knows About Me.
Thank you Dreambirdie for your tips and support.

teej… Read More

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Posted by Cort Johnson

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Written by creekfeet

2287-stripey-toe-sock__1.jpgby Creekfeet

If I could tell the world just five facts about Myalgic Encephalomyelitis (ME/cfs) I might choose these. ME/CFS…

• causes more functional impairment than diabetes, heart failure or kidney disease.
• creates a level of disability comparable to MS, chemotherapy or the final stages of AIDS.
• strikes an estimated 17–20 million worldwide, impairing function and shortening lives.
• like AIDS in its early days, receives inadequate funding due to widespread misunderstanding.
• has only recently gained notice in blood banks internationally as an infectious disease concern.Those five points should make everybody sit up and listen.… Read More

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FFC Fundraiser Is Over!

April 23, 2010

Posted by Cort Johnson

The Fundraiser is (very quickly!) over. We raised $2650 in cash donations and $650 in software (to be delivered) in about a day and a half – a remarkable turnout.

A big thank you to everyone who made the fundraiser such a success. We know the financial stresses that come with CFS and we very much appreciate your willingness to open your pocketbooks and give, particularly during these troubling economic times. We received 67 donations ranging from $2 to $650 in value from the US, Canada, the UK, Australia, the Netherlands, France, Belgium and Israel.

We’re confident that the tools you’ve provided the Fatigue Consultation Clinic and Dr.… Read More

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Posted by Cort Johnson

The first ‘Official’ Phoenix Fundraiser will provide essential information infrastructure elements to Dr. Bateman that will assist her in her studies on XMRV with Dr. Light/Singh, on XMRV with Glaxo-Smith Kline, on muscle and other receptors with Dr. Light, on Ampligen with Hemispherx and other studies. etc. – from CBS, Cort

Why Should We Help?

Reason # 1 – Dr. Bateman’s Fatigue Consultation Clinic is Right in the Middle of Some Really Critical Research

A former member of the IACFS/ME Board and CFSAC panel, and a physician, researcher and advocate, she is a vital cog in our search for answers.… Read More

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2167-Steps..gifBy Rosemary Rowlands

Posted with permission from the CFIDS and Fibromyalgia Self-Help Website

I’ve had CFS for more than 20 years. My health declined gradually and was very poor by a few years ago. Since then, however, using pacing ideas from the self-help program and other sources, I’ve made steady progress and my life has improved greatly.

I now go out once or twice a day, rather than once or twice a week. I spend time socializing and doing enjoyable activities instead of using all my energy just taking care of my basic needs. My health is more stable and instead of often feeling helpless and hopeless, I feel much more in control.… Read More

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Taking Back the CFSAC

April 18, 2010

Posted by Cort Johnson

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Written by Cort

2159-AnnWhittemoreCFSA.jpgWe saw the power of the Federal Advisory Committee on CFS (CFSAC) last October when Annette Whittemore, Dr. Peterson, Dr. Coffin and others presented live testimony on video on XMRV. The Committee is one of the only places where federal officials can compelled to give public testimony on the government’s response to CFS. Simply as an information source and a platform for action it’s been invaluable.

It was at the CFSAC in October 2008 that the CFID’s Association of America brought to light the stunning overspending that’s characterized the CDC’s CFS program over the last few years.… Read More

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Written by Lisa

2153-welch_raquel2..jpg (picture supplied by Cort)

Tuesday will be exactly four months since we made the switch to a Paleo lifestyle.

I can still hardly believe how much meat we consume each week because I have never in my life been a huge meat eater. The previous 12.5 years of vegetarianism, over a third of my life and nearly all of my adult years, has been thoroughly tossed out the window in favor of meat, meat, and meat! Combined with this is the greatly increased fat intake which is just as huge of a change from how I ate all those years.… Read More

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Posted by Cort Johnson

The odds have always been against the researchers with the guts or commitment to take ME/CFS on. With it’s unfortunate name, vague definition and complicated, multi-systemic nature it’s gotten little respect and even less funding. Everybody knows the statistics – last in the NIH in funding….$20 billion in economic losses and easily, easily the lowest dollar spent per patient. If any disease needs a ‘leg up’ in the research world this one does.

With so many still major unresolved issues we need to get the best bang for each limited buck that we have. Basically we need to put one input in and get 10 or twenty or fifty in return.… Read More

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Posted by Cort Johnson

Yes, the WPI has been frustrated, and sometimes vocally so, regarding the inability of the three XMRV studies to validate the original Science study results. Yesterday, in a surprise announcement Annette Whittemore threw the gauntlet down, so to speak. For sure she did it politely but her proposal that Dr. McClure, one of the co-authors of the Imperial College study, accept the WPI’s help in learning how to find XMRV was the equivalent of that moon a glove slap across the face. In the course of her letter we suspect that the WPI is frustrated at more than the study results; they feel they’ve been done wrongly, that trust was returned with a cold shoulder, and that breaches of professional etiquette have occurred.… Read More

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Posted by Cort Johnson

Written by Cort

2084-hamilton_burr_du__10.jpgYes, the WPI has been frustrated, and sometimes vocally so, regarding the inability of the three XMRV studies to validate the original Science study results. Yesterday, in a surprise announcement Annette Whittemore threw the gauntlet down, so to speak. For sure she did it politely but her proposal that Dr. McClure, one of the co-authors of the Imperial College study, accept the WPI’s help in learning how to find XMRV was the equivalent of a glove slap across the face. In the course of her letter we suspect that the WPI is frustrated at more than the study results; they feel they’ve been done wrongly, that trust was returned with a cold shoulder, and that breaches of professional etiquette have occurred.… Read More

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Posted by Cort Johnson

The past few months have not been easy for XMRV. The head of the Dutch study flatly stated that he believed the WPI’s samples had been contaminated. Dr. Shepard’s assessment was nothing if not gloomy and Dr. Vernon’s seemed to suggest that if the WPI’s results stood up that they probably applied only for a select few patients.

Meanwhile the work at the WPI appears to be continuing as before. Certainly from the outside we don’t any sense that the discovery is falling apart; Dr. Mikovits is as public as ever and is continuing to talk at conferences and before groups.… Read More

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Posted by Cort Johnson

Courtesy of the Wall Street Journal we finally got a look at what will surely be the most comprehensive XMRV study that we’ll see. It will surely clear up many of the questions surrounding the virus.

It’s a full bore effort; one that probably only the federal government could take on. Six labs will be involved – the Whittemore Peterson Institute, National Cancer Institute, the FDA, the CDC and two others (not mentioned in the article.)

They’ll be doing all the things that haven’t been done thus far; in the first phase they’re sharing samples amongst themselves to determine which tests are the most sensitive and reliable.… Read More

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Written by Kelvin Lord

Kelvin Lords Continuing Experiences with Ampligen (ed)

I admit it. I now have a pot-belly. And it bothered me.
fatman-skinnyimage.gif
After being underweight for the past 2+ years, struggling with a lack of appetite and the associated difficulties in maintaining weight, since being on Ampligen for 2 1/2 months, hunger has returned! But with it came a whole new set of problems for me.

The most obvious one is that my body looks weird to me now. Yes, I still have the skinniest legs in North America, and some years back, thanks to the gluten sensitivity and the “gluteal wasting” aspects of this disease, I lost my butt completely.… Read More

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Posted by Cort Johnson

Courtesy of the Wall Street Journal we finally got a look at what will surely be the most comprehensive XMRV study that we’ll see. It will surely clear up many of the questions surrounding the virus.

It’s a full bore effort; one that probably only the federal government could take on. Six labs will be involved – the Whittemore Peterson Institute, National Cancer Institute, the FDA, the CDC and two others (not mentioned in the article.)

They’ll be doing all the things that haven’t been done thus far; in the first phase they’re sharing samples amongst themselves to determine which tests are the most sensitive and reliable.… Read More

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Posted by Cort Johnson

(The Bringing the Heat Blog was down for about 1 month. Get ready for a slew of blogs to come your way’)

A month ago the head Dutch researcher, Kuppeveld, stated that he considered XMRV story over. After what he described as an intense effort to find the virus failed he was folding up shop on it; there would be no more XMRV studies coming out of his lab.

A New (Expanded) Study - No papers have been published since then but it appears that a decidedly different story is brewing in Utah. We had heard that the three dozen or so people who participated in the Light’s fascinating exercise study were brought back to get tested for XMRV.… Read More

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Posted by Cort Johnson

Dr. Goff, one of the top retrovirologists in the field, taked with Dr. Racaniello about XMRV for almost an hour. This was a rare opportunity to hear how experts in the field assess the XMRV/CFS connection. Here’s my take on what they said from the XMRV Buzz Page

XMRV and the Prostate - One way researchers figure out which types of cells a virus infects and which parts of the body it may damage is to determine which cells have receptors for it. Receptors are like hooks the virus can use to get into the cell and different cells will have different receptors.… Read More

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