August 2010

Discuss this article on the forums

Written by Kelvin Lord

chinups.jpgI absolutely hated gym class in Junior High. I was a skinny kid growing faster than my Mom could sew, and I had no arm muscles whatsoever. So when the dreaded “physical exam” days came around, I usually got physically sick. Trust me, vomiting cereal before you have to do pull-ups does not help your score. But it didn’t matter. Because I could not even do one pull-up, even on a good day, with my belly full of Captain Crunch. When the diameter of your arms is smaller than that of the pull-up bar itself, the bar will win every time.… Read More

Add Your Comment

Written by m0joey

3718-Peterson..jpg(Joey posts a scintillating review of his meeting with Dr. Peterson at a particularly opportune time. He gets in depth with Dr. Peterson on XMRV, ampligen and treatment)

Just to backtrack a bit, I first saw Peterson in September of 2009. It was the same old story: what can I do to get these gutless NK cells back in gear? “Immune modulators, like Ampligen and gamma globulin”. That day, I tested for XMRV, and my positive results took the leading role for the next 11 months of treatment.When I saw Peterson again in October, no mention was made of immune modulators and the discussion instead took on the complexion of AIDS: how is it transmitted, if he were me, he’d plug himself in the first trial of AZT, etc.… Read More

Add Your Comment

Posted by Cort Johnson

Whittemore-Peterson- InstituteAs the Whittemore-Peterson-Institute opens its door on what may be a new era of understanding and treating ME/CFS, it’s good to look at the circumstances that spawned the Institute. It was borne out of hope and possibility, for sure, both of which it has vastly exceeded but it was also borne out of trial.
The new century started off poorly for people with ME/CFS. First the federal CFS research centers closed and then both the NIH and CDC CFS budgets began to crumble. Eventually the CDC’s research program devolved into theories of sexual abuse, allostatic stress and metabolic syndrome while the NIH program, stuck in a little Office with no money and nothing but scores of broken promises, simply stagnated.… Read More
2 comments

Posted by Cort Johnson

(With so much happening and so much at stake, Rivka reminds us that now is the time to act)

Dear Everyone Who Cares About People With ME/CFS,

I just held my one-woman demonstration at the Red Cross national headquarters in Washington DC (Red Cross collects 45% of all blood donations in this country) and at the national headquarters of the U.S. Department of Health and Human Services, and it was a success. (see her video below)
On the first day of our protests, August 13, 2010, our first stop was the Red Cross headquarters. Lots of security showed up within minutes of me being there, but I simply educated them about XMRV.Read More

1 comment

Posted by Cort Johnson

Several weeks prior to publication Dr. Mikovits spilled the beans on the XMRV FDA study stating in an interview with RGJ.Com, what has seemed to be more and more obvious – that the FDA paper in press  is going to confirm the WPI’s findings when it is released. While no one yet had directly said so, the news seemed to be in the air. On the CAA’s Blood Safety webinar, Dr. Alter’s colleague, Dr. Katz said he ‘believed’ the paper would be positive. In an interview in Nevada Newsmaker Annette Whittemore very confidently said that soon several new replication studies will confirm the WPI’s findings; overall the mood seemed very good.… Read More

3 comments

Posted by Cort Johnson

3526-katz..jpgThe XMRV webinar on Blood Safety did not sound particularly enthralling but it turned out to be one of the better XMRV webinars/eminars/talks. Dr. Katz is a good speaker with a nice touch of humor but there was more to it than that. Dr. Katz, it turns out, has been treating CFS patients in his practice for several decades; he knows what CFS is like and he clearly empathizes with the people who have it.

Indeed, ME/CFS been his plight to some extent as well as he noted how frustratingly complicated the disease has been for him as a practitioner.… Read More

Add Your Comment

Posted by Cort Johnson

The Future in ME/CFS ResearchThe New York Times lead article today “Sharing of Data Leads to Progress on Alzheimer’s”. described how a bold new type of research effort paid off big time in Alzheimer’s. All it took to succeed was for researchers to make a commitment to work together, share and collaborate…. nothing much really – just a commitment to engage in a results oriented (rather than a career oriented) process that required they toss aside the rules they usually operate under.

In an effort the New York Times called without ‘precedent’ and Dr. Trojanowski, a Univ. of Penn. Alzheimers researcher called ‘unbelievable’, the NIH, FDA, Pharmaceutical, University and non-profit groups worked together to find a biomarker for Alzheimer’s.… Read More

Add Your Comment

Posted by Cort Johnson

Discuss this article on the forums

3513-iStock_00001145645__.jpgThe New York Times lead article today “Sharing of Data Leads to Progress on Alzheimer’s”. described how a bold new type of research effort paid off big time in Alzheimer’s. All it took to succeed was for researchers to make a commitment to work together, share and collaborate…. nothing much really – just a commitment to engage in a results oriented (rather than a career oriented) process that required they toss aside the rules they usually operate under.

In an effort the New York Times called without ‘precedent’ and Dr.… Read More

Add Your Comment

Posted by Cort Johnson

Discuss this article on the forums

3507-Offerlogo..jpgOFFER, the Patient Support Group started by Dr. Bateman in Salt Lake City, Utah missed giving a conference in 2009 but they’re back for their fifth conference on Sept 11th. They’re giving two conferences this year – a ‘Health Providers Conference’ (that patients are welcome to attend) and a ‘Patient Conference’ (which health providers are welcome to attend). The only one who absolutely must attend both is Dr. Suzanne Vernon – who is giving talks in each.

Health Providers Conference

3508-VernonReno.jpgThe ‘Health Providers’ conference starts off with Suzanne Vernon taking on the elusive but critical search for a biomarker in a talk titled “Science-Based Medicine: Biomarkers for the Objective Diagnosis and Treatment of CFS”.… Read More

Add Your Comment

Posted by Cort Johnson

Discuss this article on the forums

3492-Singh..jpgA Little History – Dr. Singh has quite a history. She’s been at Stanford and Yale and Columbia (where she was Dr. Racaniello’s colleague) and is now a clinical pathologist at the University of Utah. She spends 80% of her time in her research lab searching for pathogens people and also directs an HIV team.

Her interest in XMRV-like viruses began with her work in murine leukemia viruses in Columbia and she’s been a key figure in the search to determine whether XMRV plays a role in prostate cancer. Too busy for something extra?… Read More

Add Your Comment

Posted by Cort Johnson

 A Little History - Dr. Singh has quite a history. She’s been at Stanford and Yale and Columbia (where she was Dr. Racaniello’s colleague) and is now a clinical pathologist at the University of Utah. She spends 80% of her time in her research lab searching for pathogens and also directs an HIV team.

Her interest in XMRV-like viruses began with her work in murine leukemia viruses in Columbia and she’s been a key figure in the search to determine whether XMRV plays a role in prostate cancer. Too busy for something extra? Not at all – she’s now focused heavily on XMRV’s role in chronic fatigue syndrome.… Read More

2 comments

Discuss this article on the forums

3473-pem3__1_..jpg(In part III of Jennie’s series on post-exertional malaise she tackles the always tricky question of cause. Kinesophobia – fear of movement – and deconditioning are present in some CFS patients but neither appear to be the cause. Instead Jenny points to several abnormalities in pain processing, oxygen consumption and the immune and suggests the answer may be a complex one that involves multiple systems. You can find her original article here. Thanks to the CFIDS Association for allowing us to repost this intriguing series)

Post-exertional malaise (PEM) is one symptom of chronic fatigue syndrome (CFS), but is itself more complex than a single symptom.… Read More

Add Your Comment

Posted by Cort Johnson

Discuss this article on the forums

3444-TestingScreen..jpg(In part two of the Post-exertional Malaise (PEM) series Jenny Spotila looks at the scientific evidence regarding PEM, including the startling repeat exercise studies done by the Pacific Fatigue Lab. She also examines the critical question “Is PEM unique to CFS”? Thanks to the CFIDS Association of America for allowing us to reprint Jennies article. The original article appeared here.)

Dr. Anthony Komaroff of Harvard University recently described post-exertional malaise (PEM) as “an illness within an illness.”1 This article, the second in a series, examines objective evidence of PEM and how it differs from fatigue in other illnesses.Read More

Add Your Comment

Posted by Cort Johnson

Discuss this article on the forums

Written by Kelvin Lord

slow+dancing.gifI admit it.
I really blew it, big time.
Two weeks ago, after my last “glowing” report about how good I was feeling at the 6-month mark, I took it too far, and overdid it. I moved from the reality of my health, to a fantasy world of my own making, which convinced me I was almost healed. It was not only stupid, but because I knew I was only half-way through the treatment protocol, it was unrealistic.

I’ve had this problem of moving into unrealistic expectations all my life, even before I got sick.… Read More

Add Your Comment

Posted by Cort Johnson

Discuss this article on the forums

3433-PEMImageIII..jpg(Post-exertional malaise (PEM) is most likely the key symptom in ME/CFS. The realization that PEM (or a marked exacerbation of symptoms after exertion) may be unique to ME/CFS and needs to be closely examined finally hit home after the repeat exercise studies by the Pacific Fatigue Lab at the University of the Pacific (funded by the CAA) showed strange metabolic abnormalities after exercise. Now many research studies push ME/CFS patients into a PEM-like state in order to better understand the processes at play in ME/CFS. This is a topic we vitally need to know more and this should be a very interesting series of articles.

Read More

Add Your Comment

A Choice

August 6, 2010

Discuss this article on the forums

Written by Lisa

3431-question-mark..jpgIn life we have choices. Choosing gives us power. When we are thrust into a situation in which we have very little choice, it can leave one feeling very powerless. Thus has been my situation been for the many years I’ve been homeless in this very tent.

Until now.

For years we have tried to find a way out of our situation and seem to have only dug ourselves in deeper and deeper each time.

We tried to build a house – now we are in debt we can barely cover due to our increasing medical expenses, can not finish building because the majority of the money ran out years ago, and are now left with a half finished structure too toxic for us to live in.… Read More

Add Your Comment

Posted by Cort Johnson

‘Where’s the Beef’ became a key catch phrase of the 1984 Presidential campaign but one wonders if the WPI is asking themselves the same thing today. They produced a major finding that got the feds to throw a substantial amount of money at XMRV none of which, thus far, has made to the WPI. The WPI might have expected to share in the resources being doled out to XMRV but they haven’t. They may very well be asking “Where’s the friggin’ beef?”

There is a view that the WPI is out of the mainstream…and indeed it would be hard for a brand-new Research Institute focused on a controversial disease to fit into the mainstream of the research community.… Read More

Add Your Comment

Posted by Cort Johnson

Check out Dreambirdies striking new video from the Phoenix Rising Forums

Read More

4 comments