I think that most ME/CFS patients have heard the announcement from the Whittemore Peterson Institute about the discovery of a retrovirus implicated in ME/CFS and written up in a major scientific journal. I have posted links at the bottom of this post for those that want to read about it. There are also articles in the New York Times, Wallstreet Journal, NPR, and every major newspaper in the country. Yesterday when this was finally announced I found myself in tears as I scrolled through all the news agencies covering this story. It's big news for those of us that suffer from this disease. The mistreatment we have suffered at the hands of disbelieving doctor's, friends, and family members is about to end. Within the next year there it is likely that there will be a diagnostic test for XMRV.
Indeed the Whittemore Peterson Institute (WPI) is so confident in their discovery that they have renamed chronic fatigue syndrome. They are calling what we have XAND for X Associated Neuro-Immune Disease.
From the WPI Website:
We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.
This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.
Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others.
This news has implications not only for XAND patients but for the general population as well. Almost 4% of the general poplulation tested positive for this retrovirus as well. These findings concerned the National Cancer Institute enough to call a closed door meeting held in July to discuss the public health implications of an XMRV infection.
“NCI [National Cancer Institue]is responding like it did in the early days of HIV,” says Stuart Le Grice, head of the Center of Excellence in HIV/AIDS and cancer virology at NCI and one of the organizers of the July workshop.
The WPI believes that XMRV is transmitted through bodily fluids similarly to how the HIV virus is trasmitted.
Having a retrovirus is not exactly good news. It finds its way into the DNA making it a lifelong companion. But we patients knew that already. It can also cause cancer, leukemias and, in some cases according to WPI, shorten one's life span.
There are now 4 known retroviruses: HIV, HTLV1 which leads to two types of leukemia (rare types), HTLV2-no known pathology, and now XMRV which is linked to XAND, prostate cancer, leukemia, and possibly other types of cancers.
It is bittersweet news for us indeed. On the one hand it is a world changing discovery for those of us that are infected. It means recognition that we suffer from a devastating and debilitating disease rather than a psychological problem or depression as some people would have us believe. It means a diagnostic test, funding for more research, easier to get disability benefits, and possibly treatment. On the other hand it is a bit frightening that we are dealing with a retrovirus.
I have written about this over and over but I have found it mind boggling and more than a little unreal that I have been this ill for the past 3 years and have doctor's tell me they think it is depression or trying to find a doctor willing to treat you is like finding the proverbial needle in the haystack.
We have been the modern day lepers. We have been shunned, ignored, mistreated, not believed, not heard, and pushed to the margins of our society left to struggle alone with a disease that renders at least 25% of us unable to perform the activities of daily living. And we've had to manage by ourselves. I can't begin to describe what it has been like. It's one thing to be diagnosed with a devastating illness and the consequences that entails but then to live with the stigma attached. And trying to make people understand has been exhausting, frustrating, and sobering.
This discovery means that at the very least, we won't have to deal with the added burden of living with an illness that has such stigma attached to it.
Judy Mikovits of the Whittemore Peterson Institute in Nevada and colleagues at the National Cancer Institute and the Cleveland Clinic emphasized that the finding only shows a link between the virus and chronic fatigue syndrome, or CFS, and does not prove that the pathogen causes the disorder.
Much more study would be necessary to show a direct link, but Mikovits said the study offers hope that CFS sufferers might gain relief from a cocktail of drugs designed to fight AIDS, cancer and inflammation.
"You can imagine a number of combination therapies that could be quite effective and could at least be used in clinical trials right away," Mikovits said in a telephone interview.
She said AIDS drugs such as reverse transcriptase inhibitors and integrase inhibitors as well as nonsteroidal anti-inflammatory drugs and cancer-fighting proteasome inhibitors could be tested as potential treatments for CFS.
Takeda Pharmaceutical Co Ltd (4502.T) makes a cancer drug called Velcade that is a proteasome inhibitor, although there are no reports that it has been tested against XMRV.
Biochemist Stuart Le Grice of the National Cancer Institute, who also worked on the study, said some AIDS drugs may be ineffective against XMRV because many are tailor-made for HIV.
"But we've learned a lot from HIV, and if XMRV does become a serious issue, we can bring that to bear pretty quickly La Grice said.
this is incredible. It all makes sense now. I'm so tired of people not understanding my tiredness, weakness.My doctor never heard of this so Im not sure where to go now but Im sure gonna try somewhere. THANK YOU