Prof. Dr. De Meirleir Finds XMRV In Europe

by Johan on September 3, 2010

Prof. dr. De Meirleir has found XMRV in ME/CFS patients across Europe, thus confirming recent American studies. He also found an immunological signature similar to that of symptomatic HIV in ME/CFS patients. His new findings will be presented at a workshop at the NIH in Washington next week.

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Is The ME/CFS Movement Ready For The Next Phase?

by Johan September 2, 2010

Listening to a recent podcast by The Skeptic Zone on cognitive dissonance and the place of anger in social movements for justice and change I had the impression that they might as well have been talking about the ME/CFS patients movement. What can we learn from the interview with Carol Tavris, a social psychologist?

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What Does The FDA/NIH/Harvard Paper Mean?

by Johan August 24, 2010

Yesterday evening the long awaited and heavily anticipated study by a team the from National Institutes of Health (NIH), the Food and Drug Administration (FDA) and Harvard University “Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors” finally appeared on the website of PNAS – Proceedings [...]

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On XMRV, HGRV, XAND, and HGRAD

by Johan August 20, 2010

Yesterday ProHealth published the news about a possible name change for XMRV, the retrovirus linked to ME/CFS and prostate cancer. The new name would be Human Gamma Retro Virus (HGRV) and the associated illness Human Gamma Retrovirus Associated Disease (HGRAD). I do not rule out this is just a teaser to see how the patients respond before the name change is officially announced. Well, glad to be of service; this is my response.

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A Rose By Any Other Name Would Still Smell As Sweet

by Johan August 8, 2010

Recently the whole name change issue for ME/CFS came up again, which it does periodically. This is my view on the subject, presented as some loosely connected ramblings. I really don’t want to spend time, money or energy on this subject; that is no more than for writing this article.

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Looking For Research On GET And CBT

by Johan July 31, 2010

I need your help finding research on graded exercise therapy (GET) and cognitive behavioral therapy (CBT). A Google search on “GET graded exercise therapy” returns 129,000 results. This should provide me with all the information I need. Right? Actually, this is not the case. There is an astonishing lack of good and detailed information out there.

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Goals For 2010 – Halfway

by Johan July 7, 2010

Halfway through the year it is time for the next update on my goals for 2010. How am I doing? Am I on track or not?
When I made this list with goals for 2010, I assumed my condition would remain stable or improve. After all, I lost my job so now I could focus completely on my health, finding a sustainable pace. Right? I was a man with a plan, but isn’t there a saying “Men plan, God laughs”?

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Prof. Dr. Kenny De Meirleir And Himmunitas

by Johan June 17, 2010

During the past couple of months several people have asked me for the contact details for Prof. Dr. Kenny De Meirleir and his Himmunitas Foundation as they do not have a website yet.

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What Is Wrong With ME/CFS Research?

by Johan June 13, 2010

Why should I care about ME/CFS research? Because I am a ME/CFS patient and that makes me an interested party. The quality of ME/CFS research will not only determine my future health, but also the kind of life I can have. After my relapse in 2008 and struggling without progress for more than a year when none of the techniques, diet and supplements that helped me before worked, I decided to catch-up on ME/CFS research during the Summer of 2009. What I saw didn’t make me happy.

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Shopping Around For Supplements

by Johan May 13, 2010

I am used to order books online for more than a decade now, but it’s only since mid 2009 that I started to order supplements online and for the very same reasons.

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