September 2010

Posted by Cort Johnson


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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Posted by Cort Johnson

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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Posted by Cort Johnson

    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

Posted by Cort Johnson

“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.… Read More

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3829-FauciFingers..jpgMajor Study – The NIH tagged Anthony Fauci to oversee a major study on XMRV and CFS. The HEAD of the NIAID (National Institute of Allergy and Infectious Diseases), an Institute with a multi-billion dollar budget, and a major figure in immunology with over 800 citations, Fauci is the biggest name yet to be associated with either CFS or XMRV. His appointment indicates the NIH believes XMRV is a hot-button issue they need to get up to speed on. Dr. Mikovits has noted that the NIAID has largely ignored XMRV thus far….they’re clearly not ignoring it any longer.… Read More
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3825-RobertMillerCFSAC__.jpg(Bob Miller is a long time person with severe ME/CFS who has frequently testified at CFSAC Meetings. Congratulations to Bob for engineering such a startling meeting. )

By Rivka Solomon, with help from Robert Miller
Contact: Robert Miller < bobmiller42@msn.com

On September 7, 2010, at 11 a.m., at the NIH campus in Bethesda, MD, a group of 9 CFS patients and their families met with Top level NIH officials. To my knowledge, this is the first meeting of its kind in the 27 years since I was first struck down with this illness in 1983.… Read More

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In celebration of the 1st International XMRV Conference, here is the link to my “Dear Secretary Sebelius, Dear Director Collins” bedroom video. http://www.youtube.com/watch?v=8t1Xqp1LDxM

I hope this starts a video campaign where people with ME/CFS make their own videos from their own beds, post them on youtube and email them to HHS Secretary Sebelius and NIH Director Collins.

With hope for our future,
Rivka (at) ThatTakesOvaries (dot) org… Read More

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Posted by Cort Johnson

Alter XMRV paper on CFSKim McCleary stated that the Alter paper was the most anticipated research paper on ME/CFS ever and she was surely right. Demonstrating a remarkable online viral spread of its own Kim reported over 150 media outlets quickly jumped on the XMRV story. The story sent attendance at the Phoenix Rising Forums zooming, quickly breaking the record for online attendance and then breaking the Forums themselves, knocking them off-air for about 30 minutes.
Positive Reception – Produced by one of the top researchers in the medical field, the paper quickly received strong support for its rigor. Science reported that “Even skeptics are impressed by how much care the authors of the new study took to ensure accuracy”.

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Posted by Cort Johnson

The CFIDS Association started off what’s going to be an exciting week for XMRV with a CFIDLINKs devoted to asking the experts about XMRV. Fittingly enough Dr. Lo and Alter were first. After noting that both groups, the Alter/Lo and WPI/NCI/Cleveland Clinic groups had found a similar ‘strong association’ between murine Leukemia retroviruses (in one case polytropic and the other xenotropic MLV’s) the CAA asked about ‘blinding’ – a question we have not heard before – but the kind of question researchers ask all the time; were the samples ‘blinded’? That is, were they coded and then mixed and run together in the PCR?… Read More

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3767-XMRVprostate-canc__1.gifMLV related viruses – a simpler explanation

I’ve already posted a blog about MLV-related viruses but I thought it might be quite difficult to follow for some people who can’t follow the science easily… So I’ve now written this shortened, simpler, version, which hopefully might be easier to grasp. (feedback welcome.)

  • MLV = Mouse Leukaemia virus
  • MLV’s are mouse retroviruses that cause cancer in certain mice.

Judy Mikovits and Harvey Alter have discovered a variety of MLV-related viruses in ME/CFS patients.

These MLV-related viruses are not MLV’s (mouse viruses) but they are closely related to them.

The only difference between Alter’s viruses and Mikovits’ viruses are that they are related to slightly different types of MLV’s.… Read More

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Posted by Cort Johnson

Written by Bob

3757-XMRVprostate-canc__1.gifMLV related viruses – a simpler explanation

I’ve already posted a blog about MLV-related viruses but I thought it might be quite difficult to follow for some people who can’t follow the science easily… So I’ve now written this shortened, simpler, version, which hopefully might be easier to grasp. (feedback welcome.)

  • MLV = Mouse Leukaemia virus
  • MLV’s are mouse retroviruses that cause cancer in certain mice.

Judy Mikovits and Harvey Alter have discovered a variety of MLV-related viruses in ME/CFS patients.

These MLV-related viruses are not MLV’s (mouse viruses) but they are closely related to them.… Read More

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3769-PEM_4..jpg
(Jennifer Spotila concludes her 4-part series on the hallmark symptom of ME/CFS – Post-exertional malaise. Thanks to Jenny and the CFIDS Association for their permission to post it. You can check out the original article here. )

“It is not necessary to understand [PEM] before we respect it.”1

This four-part series of articles about post-exertional malaise (PEM) in chronic fatigue syndrome (CFS) has reviewed the definition, experiences, measurement, and possible causes of PEM. This final installment of the series examines what patients can do to cope with and avoid this incapacitating symptom.

When It Happens

People with CFS know that once PEM strikes, they are at the mercy of their symptoms.… Read More

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3746-CorrineBeach2.jpg(Last year Corinne provided a five part series of her experience as a first time patient with Dr. Peterson. Now she’s back 8 months later to report on how everything has gone and how her second visit with Dr. Peterson went. Check out her first report here)

As promised, I would like to share with you my first follow-up visit with Dr. P. and all that experience entailed. If you recall, my first visit was in June 2009. He suggested I return in December or January but because I was bedridden (the usual post-holiday collapse), and a forecast of 10 feet of snow predicted for Lake Tahoe, I rescheduled for February.… Read More

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