Exciting new study results cause a big buzz
There’s a buzz in the world of “Chronic Fatigue Syndrome” — formally known as “ME.” The buzz is about the publication of an important NIH/FDA study that found MLV gag sequences (bits of virus to you and me) in CFS sufferers.
This is mega important because it confirms an earlier study that found the retrovirus XMRV in CFS patients.
XMRV and MLV are related retroviruses that originated in mice and have crossed over to humans.
There are only 3 known human retroviruses — one of the others is HIV that causes AIDS. HIV crossed over to humans from monkeys…
The much underfunded world of Chronic Fatigue Syndrome will now get a huge boost as the potential for a drug intervention becomes a real possibility and different organizations and companies see the potential for a piece of the pie…
What does it all mean?
For the sufferer, this doesn’t affect much in terms of treatment yet BUT this adds even more evidence that yes, CFS is a real physical disease with real physical causes. CFS patients always maintained this, it’s the medics that needed convincing in the past. Just getting rid of stigma will be a huge relief. It’s bad enough to live with an illness that takes away all your energy, puts you in an endless mental fog and feels like you’ve got acid for blood, without people telling you you’re imagining it :-)
Anyway, it might even be possible finally to have a BIOMARKER for CFS… a clear test that indicates CFS or not. This remains to be seen though as it’s likely CFS is caused by a number of interacting factors — viruses being one. We’ll see.
So what does it all mean?… we don’t know yet. At the moment, CFS sufferers can take heart that finally, a big breakthrough and probably lots more funding. More evidence for a real physical illness and a possible biomarker and treatment in the future.
AND if all this pans out… the silly label of Chronic Fatigue Syndrome will finally be dropped in favor of something that reflects the gravity of this life destroying and very serious illness.
Fascinating things about XMRV
I was amazed to find out that XMRV is switched on by hormones. A retrovirus is a string of RNA code which somehow, via mysterious (to me) biological processes, turns into DNA and embeds in human cells. Anyway, the virus DNA is switched on i.e. “does its thing” by hormones, and one of those hormones is CORTISOL, the STRESS hormone.
This makes a whole lot of sense to me. Before CFS, I had a very calm nerve and after — I quickly learned to avoid stress like the plague!
This would also explain why CFS is more prevelant in women because some uniquely or more abundantly feminine hormones also switch on the virus.
It all seems to fit. We shall see. If you’re suffering from this very serious disease, please check out my article on How to overcome CFS/ME.
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Michael Kinnaird is the author of Happy Guide, the result of a 20 year exploration into what works for health and happiness.
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Hi, I suffer of Morg. (Cross-Domain-Bacteria) Borrelia Burgdorferi. Long saga with negative effect from traditionnal medecine. Would it be if some help to get a copy of an analysis by an Ontario Labo. who received one of my specimen and find an affirmative answer describing the bacteria ; The only part not indicated is the name, but the balance is explosive. Faith and hope…N.D. (retreated) Billie
Many other observations and essays done with surprising results. You may publish this or retain it for your information and researches. Feel free.
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For those of us who live with ME/CFS, we know how real this disease is. We know how it has damgaged our lives, our careers, our families, our relationships and every other part of our lives.
I have had severe ME/CFS for 16 years. I sleep from 12 to 18 hours a day and have never felt “awake”, “normal”, or good. I feel like I have a terrible virus and it knocks me out with no body energy or brain energy.
When I had been sick with ME/CFS for 10 years, my husband came down with all the symptoms of ME/CFS. He has been sick for 6 years. While I sleep unrefreshing odd sleep, he lays on the couch wiht no energy. Note we were both hyper driven people who could not sit down and slept less than 6 hours a night so this disease has done 180 degree change on our lives.
There are millions of Americans who have ME/CFS. The real numbers are unknown because the CDC refused to do the real studies to find out exact numbers. They also refused to do what Congress demanded they do and find out how many children/teens/young people had ME/CFS. The CDC did not want the public to find out the true numbers of this epidemic and so kept it covered until the Whittemore-Peterson Institute in Nevada dicovered that there was a link between the newly discovered Retrovirus Family (including XMRV) and ME/CFS.
WPI and their associated lab, VIPDx have done thousands of tests on the sick and found high proportions of people with the retrovirus in their blood.
In a major study done by WPI, NCI and the Cleveland Clinic, 86% of ME/CFS sick had a retrovirus in their blood. Of the normal “healthy” controls used, 7% or 20MILLION people also had this retrovirus in their blood and were considered carriers. And those people, in addition to the ME/CFS sick people had been donating blood to our nation’s blood supply. Right now the major Federal government health organizations are terrified that this retrovirus has been in the nation’s blood supply for more than 30 years and may be involved in not just ME/CFS, but other diseases and cancers. Researchers are believe that Autism and MS may be caused in whole or in part by this Retrovirus family.
Hence, far more money for research is needed to find out what this Retrovirus is capable of doing, what diseases and cancers it may be a cause of (in whole/part), and many other questions. However, the Feds have NOT set aside much funding for the retrovirus and are very slow to deal with the contaminated blood supply.
In Canada and other countries, those with ME/CFS are not allowed to donate blood. This has not yet happened in the US, only weak statements that it may be best that ME/CFS sick don’t donate blood.
What can you do to force the Federal government to fund massive research on this newly discovered Retrovirus?
Hit this site: ME/CFS Worldwide Patient Alliance (MCWPA) To create a patient-driven effective advertisement campaign on ME / CFS, and XMRV, particularly on patient quality of life…
http://www.causes.com/causes/511536?m=f042604e
Join, read, get involved, and donate if possible. We are working to get a 1/2 page AD in the Washington Post informing the public of this Retrovirus, its possible implications as found by researchers, and a request for far more funding for research.
This newly discovered family of retroviruses could well be responsible for many other diseases and cancers. It must be researched and researched NOW. How many people have become terribly sick and/or died because research on sevreal other discovered Retroviruses was killed off by the CDC? How many people have gone through the toruture of cancer treatments and all of that could have been avoided HAD the CDC only continued with Retrovirus reseearch back in the mid 1980’s when one Retrovirus was first discovered but the CDC damaged replication and then NIH killed off further funding.
For far better background on the history of CFS and the Retroviruses that had been found and presented in the mid 1980’s, see Hillary Johnson’s Osler’s Web at http://www.oslersweb.com – This book documents CFS and what the CDC did to damage this disease by demeaning the sick, refusing to do real surveys on the number of sick, damaging research and other destructive things – which begs the question, WHY? Why would the CDC and all other Federal health organizations damaged and kill off any further funding for retrrovirus research when they KNEW about it in the mid 1980’s? That’s another question that must be answered and will be shortly.
ME/CFS Worldwide Patient Alliance (MCWPA) To create a patient-driven effective advertisement campaign on ME / CFS, and XMRV, particularly on patient quality of life.
http://www.causes.com/causes/511536?m=f042604e
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Thanks, Mike, for covering this amazing story! Think things are going to happen real fast now, and I’d like to make a “plug” here, if I may:
http://www.causes.com/causes/511536
is the new ME/CFS Worldwide Patient Alliance (MCWPA), which is going to place Ads in the Washington Post informing the general public of this new Retrovirus in town. It is stunning that it has been found in up to 10% of the healthy controls in nine different studies! It may not be causative, but it certainly looks indicative of a role in CFS/ME. Science will tell.
The Cause above wants to get all the government agencies of the world working together for a change, finding tests, funding clinical studies and training physicians. Another Goal is to get the general public involved in seeking answers for all, as this Retrovirus could pose a very real danger to them and their families.
Again, thank you for highlighting our plight and your support for future research into CFS/ME. It’s really appreciated.
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