September 2010


Dr. Singh

An Old Murine Leukemia Virus (MLV) Hand

Dr. Singh knows these viruses well and she’s not surprised at the difficulty researchers are having pining them down. She has been studying XMRV for four years and a close relative of it (Moloney Murine Leukemia Virus) for 12 years. ](How lucky we were that a major MLV researcher in the area located just down the street from Dr Bateman). I asked her if she was having more or less trouble with XMRV than she did with the Moloney Virus when she first got started with it and she said it was about the same.… Read More

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Standing is just not a pleasant experience for many people with CFS. The autonomic nervous systems of a chunk of people with ME/CFS dysfunction when they stand up – sending their heart rates soaring, their blood vessels opening instead of closing and , their brains into confusion due to lack of oxygen. But even if they can stand their problems may still not be over because then they have to balance and that can be problematic in ME/CFS as well.

An exploration of the Romberg Test for Balance
- Years ago Dr. Cheney introduced the Romberg Stance test to the ME/CFS patient community stating a positive test result indicated that deep brain dysfunction was common.… Read More

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Written by Jody

4024-TriggeringFactor__11.jpg(written for EmpowHER.com http://www.empowher.com/chronic-fatigue-syndrome/content/chronic-fatigue-syndrome-10-things-people-misunderstand-about-fatig)

I think we can all agree that Chronic Fatigue Syndrome is a stupid name for an incapacitating illness. I think we can also agree that it is exceedingly misleading to the casual observer.

Here are ten things that are often misunderstood about the “fatigue” of Chronic Fatigue Syndrome.

1. This Fatigue is not the same as tired.
I’m not tired. I run out of energy, but it doesn’t make me drowsy. It floods my nervous system with static and it makes me bump into things. It distorts my vision, erases my memory and renders me incapable of speech or understanding, but it doesn’t make me tired.… Read More

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3998-Taichi_Jody..jpg(A recent Fibromyalgia Tai Chi study published in the New England Journal of Medicine found substantial improvements after a 12 week, twice a week trial of Tai Chi. SF 36 scores were moderately increased while Fibromyalgia Impact Test scores (FIQ) dramatically improved indicating increased activity levels. http://www.ncbi.nlm.nih.gov/pubmed/20818876 They still had fibromyalgia but they felt better and did more. Results from the Romberg stance test suggest that many people with ME/CFS have balance problems – something Tai Chi is able to aid in some people.

The the ability of one woman with emphysema to go off oxygen and a man with a broken back to significantly reduce his pain medication speaks to the power of this technique.
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3886-Standing_Out..jpg‘Names’ Step Out - A key, key need for 25 years has been to get distinguished researchers, ‘names’, interested in ME/CFS. We’ve always had good, committed researchers but rarely have we had people who could be counted as ‘opinion-makers’ or leaders.

That is changing – quickly. The WPI’s XMRV finding has uncovered supporters – some of them in high places – whom we did not know we had. We’re seeing a cadre of respected researchers emerge, who’ve believed ME/CFS is a biologically derived disorder for years but have not until now had significant opportunities to act.… Read More

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    Dr. Frank Ruscetti on XMRV and CFSNo ‘Flip’ Yet: The Workshop did not, as we hoped, turn out to be the place where the research world flipped from worrying about how to find the virus to figuring out what it does and how it does it. According to one report Dr. Ruscetti said he, at least, was turning his attention from diagnosis to pathogensis but it was clear that many others were not. The Q&A session revealed a hard-nosed bunch of researchers who want to get matters nailed down before they move on. The NCI chiefs response to Dr. Ruscetti’s question about funding (none planned) indicated that the Institute was waiting for the testing issues to get ironed out before it would as well.

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A Time to Act!

September 13, 2010

“A Time to Every Purpose Under the Heaven”

Fight for XMRV and CFS ResearchEcclesiates says there is a “A time to every purpose under the heaven”. I suggest that our time is now.

ME/CFS has been ignored and kicked to the side of the road for decades. Twenty-five years later – long after it has been shown to afflict at least a million people in the US and inflict billions and billions of economic losses annually in the US – it still receives amongst the lowest amount of funding of any disorder. Chronic illnesses that effect fewer people and cause less damage get hundreds of millions of dollars a year in funding while we get a few million a year…droppings from the NIH’s table.… Read More

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3870-cheney_paul..jpgDr. Cheney gave permission to have his comments on the Workshop posted here. Thanks to Rich for contributing it.

Quote:
“I attended and was a poster presenter at the recently completed XMRV conference at the NIH. It was fascinating and I took perhaps 30 pages of notes. The bio-political undertones were also intense but I have to say that the presentations of XMRV association with CFS (4 presentations) were much stronger than the presentations of negative XMRV associations with CFS (4 presentations). They were stronger specifically because of the multiple methods they employed and not just PCR.

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3841-Ruscetti..jpgNo ‘Flip’ Yet: The Workshop did not, as we hoped, turn out to be the place where the research world flipped from worrying about how to find the virus to figuring out what it does and how it does it. According to one report Dr. Ruscetti said he, at least, was turning his attention from diagnosis to pathogensis but it was clear that many others were not. The Q&A session revealed a hard-nosed bunch of researchers who want to get matters nailed down before they move on. The NCI chiefs response to Dr. Ruscetti’s question about funding (none planned) indicated that the Institute was waiting for the testing issues to get ironed out before it would as well.… Read More

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