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See our Youtube Channel for the videos here.
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About 60% of all CFS patients also have Fibromyalgia.
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Gulf War illness overlaps CFS symptoms. Current research is being done to see if they are the same.
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Also, the GWI patients in Klimas’ cohort are currently tested for XMRV.
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Multiple Chemical Sensitivity Syndrome is even harder to diagnose.
Klimas’ personal view on psychological issues surrounding CFS:
Already in 1993 the first research that CFS showed to be a physical illness was being published. The reason so much research has focussed on psychological aspects is that CFS is a very interesting disease and up until now we never came up with a very clear understanding of what that primary cause might be. History tells us that there was also a lot of psychological research in the area of HIV and chronic renal failure.
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The XMRV virus would explain why the immune system is broken and so many other infections keep reactivating. XMRV infects and affects NK cell and T cell function, which is the cause of both immune systems to fail.
The XMRV found in Prostate Cancer is a different strain of the virus found in CFS patients.
The XMRV virus isn’t changing as much as for instance the HIV virus after infection. There are more retroviruses found in humans of which some do and some don’t cause illness. XMRV is not HIV. It’s a distant cousin. There are overlaps in the way the virus works, but they do not behave the same way.
And ‘oh by the way, with XMRV we now have a biomarker’.
Possible ani-retroviral treatment strategies would be based on HIV research and include:
- The attachment phase (virus attaches to cells, where entry inhibitors could work)
- co-receptor binding (where fusion inhibitors could work)
- Reverse transcriptase (Reverse transcriptase inhibitors –NRTI > -nNrti are fairly selective to HIV, I don’t know if it would work for another retrovirus)
- Integrase Inhibitors
- Protease inhibitors
There are thousands of compounds developed for HIV, some of which have been approved for HIV, some not. The point of this is that for XMRV we have a very good base to start defining treatments. A full treatment could look something like this:
- Suppress the virus with an anti-retroviral
- Boost the immune system with a vaccine
- Immune modulating drugs (ampligen, immunovir, ex vivo cell therapy, inosine, Th1 Cytokines, Cytokines that enhance cytotoxic T cells)
Testing: There’s about a 2/3 accuracy on the current XMRV test. So there is a chance of 1/3 false negatives. The current tests are going to be improved. The first HIV tests weren’t any good either. Don’t rush to go get tested, because you’re not going to be able act on the results of the tests quite yet. The knowledge of the results isn’t going to get you a prescription of anti retrovirals just now, because we don’t really know which ones to give and if it’s safe. CFS patients are so fragile and many drugs can be too toxic. (HIV drugs have NOT been gentle)
The good news is that the tests are improving rapidly as many researchers contribute to it. We think that it will take about 6 months for general (good) tests to be developed and another 2-3 years before a standard (approved by all agencies involved) treatment protocol can be issued.
It’s been my experience that when people’s immune systems are working better, they also have less CFS symptoms. CFS symptoms can both be triggered and put in remission by major immune events like infections (pneumonia). Clinically I’ve seen NK cell function behave better and there’s less immune activation. (immune activation is what drives the XMRV virus).
What you can do, because you CAN make a difference:
- Volunteer at (national) organizations that help our cause
- Advocate, step up, form collaborations, join the right organizations
- Demand your rights at governments and health institutions
- Make people see they have been wrong and actually should be embarrassed
- Donate to national research programs
- Spread the news
Private funding is one of the most essential elements in this phase. It will take time before official grants will be released (up to 1 year) and most of the research that is being done now, is being privately funded or is tagging along on other major research projects. As little as you may expect of (national) research funds, they are without a doubt making the difference in research right now.
Note: If you feel you really want to get tested and be a part of the research programmes worldwide, please see our Patient Questionnaire section and fill them in. Currently we have 2 Questionnaires up, one for the Whittemore Peterson Institute and one for Nancy Klimas's research. Click HERE for the Questionnaires.
Already in 1993 the first research that CFS showed to be a physical illness was being published. The reason so much research has focussed on psychological aspects is that CFS is a very interesting disease and up until now we never came up with a very clear understanding of what that primary cause might be. History tells us that there was also a lot of psychological research in the area of HIV and chronic renal failure.
Dr. Nanc Klimas MD, Department of Medicine University of Miami Leonard M. Miller School of Medicine
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