A MOMENT OF REFLECTION
:Retro mad:Last weekend's thread about the delayed press release from the CDC concerning xmrv and CFS, demonstrated the angst among many of the forum members regarding xmrv and CFS. The discussion worried me as well as, I am deeply concern that if xmrv doesn't pan out as expected, this will cause a devastating impact on the emotional well being of many members on this forum.
I sincerely believe that we all need to pause, step back, take a deep cleansing breath and put things in relative perspective. There seems to be an underlying premise on this forum that xmrv is the caused of CFS. Without further validation, I believe this does a disservice to the entire CFS community to make inferences that haven't been proven through clinical research and which may lead to false expectations and disappointments later on. It may or may not be, but until further research validates this claim, we need to be mindful of the fact that there has been no other replication study to date except for the many negative flawed studies from abroad and until such studies and further research is disclosed on causality of xmrv and ME/CFS we have to approach this issue with an open mind. Just recently, Dr. Huber of Tufts University conducted a study on 238 ME/CFS patients for xmrv and she came up negative, nada and was extremely criticized by the CFS community.
"It's premature to conclude that XMRV causes CFS," Columbia University virologist Vincent Racaniello wrote in an e-mail. "It is still very much up in the air." But according to Racaniello and Columbia University retrovirus specialist Stephen Goff, almost nothing is known about how the virus is transmitted, how many people may be infected, how the virus affects people, where it came from or the usefulness of the test.
Is it the puppet or puppet master? Does it show up in all people with suppress immune systems? Cort has placed a straw poll on this forum and so far that there is a slight majority of those who have CFS but are xmrv negative. I myself proved xmrv negative even though I had been diagnosed under the Fuduka and CCC criteria and I am on level 2 according to Dr. Lerners criteria. So where does that leave all of us CFS patients who are xmrv negative? What do ME/CFS patients now tell their doctors after spending so much time and energy convincing them they had a retrovirus? Talk about embarrassing Maybe xmrv is only in a certain subset of ME/CFS patients? So until further research is completed and a valid replication study completed, we must have an open mind.
What I am concern about is that with all this "HYPE", patients are taking unnecessary risks by taking highly toxic HIV medications with severe side effects even though their tests prove negative for retrovirus etiology. You may build up a resistance to other retroviruses later on. We all know from following the treatments of others on here that various treatments seem to affect only a certain subset of ME/CFS patients. Ampligen works only on a certain subset of ME/CFS patients. Anti viral medications only work on a certain subset of ME/CFS patients. LDN only work on a certain subset of ME/CFS patients. We don't know why that is. That is why we need the research to confirm some facts and disprove other facts and that will take time.
What ever happened to the research back in 2000 when Dr Charles Engel, who was with the US National Institutes of Health, Bethesda, Maryland, stated the following at an NIH meeting on February 7, 2000: "I am now of the view that the probable cause of chronic fatigue syndrome and fibromyalgia is the mycoplasma fermentans" and a report from The New England Journal of Medicine reveals that one of the first outbreaks of chronic fatigue syndrome was in Punta Gordo, Florida, back in 1957. It was a strange coincidence that a week before these people came down with chronic fatigue syndrome; there was a huge influx of mosquitoes??? They also reported that it caused AIDS, cancer, chronic fatigue syndrome, Crohn's colitis, Type I diabetes, multiple sclerosis, Parkinson's disease, Wegener's disease and collagen-vascular diseases such as rheumatoid arthritis and Alzheimer's. Kind of rings a bell with xmrv, doesn't it?
Dr. OS states on CFS "Because people with these conditions spend more energy on producing energy, so they have no extra energy for life. This lack of energy to do anything but process energy especially plays out in the hypothalamus gland in your brain - which balances the energy budget in your body. That little neurological doo-dad that links your nervous system with your hormonal system uses more energy than any other place in your body. So when the systems that produce energy falter, you can feel exhausted, yet suffer from insomnia."
Further researching the CDC site and other Govt. sites indicates catastrophic exhaustion associated among patients who suffer from neurological diseases such as MS, Parkinson, Alzheimer, CFS, Fibromyalgia and ME. It seems that the immune system becomes overwhelmed in fighting these illnesses and has no ability to generate energy for the rest of the body.
In 2008 Dr. Heuber in her research identified a retrovirus HERV-K18 in our DNA that could be activated by EBV, HHV-6 or mono in CFS patients. CDC is now recruiting for CFS patients for treatment on Ampligen. So there is a lot of research going on and it is to early to get hyped up on only one aspect of the research and ignore the other research studies being conducted.
The bottom line is that we must be cognizant of the fact that we are in the early stages of xmrv research and the entire ramification from future research results is still out there. It is an exciting time for sure, but still we must approach xmrv with the mindset that it might not be the silver bullet for our cure! :worried: The researchers and the labs and the government agencies all have their agendas and the fight continues and we must wait until the fallout stops. In the mean time we must remain neutral, relax, observe but do not get caught up into the hype. We may get burned again!
I believe everyone should read the article written by Dr. Suzann Vernon of CFIDS: WE ARE NOT ALONE http://www.cfids.org/cfidslink/2010/060202.asp She hits the nail on the head and it should be our approach and mindset within these forums whenever we discuss xmrv.
FINALLY: I am appalled as I know all of you are at the researchers, the research labs, govt. agencies and other organizations who continue to fight among themselves acting like a bunch of school kids over the investigation of ME/CFS. It is appalling and it is despicable conduct on the part of scientists who claim to be professionals and who engage in such vitriolic attacks against one another concerning their research at the expense of patients suffering from such devastating and debilitating diseases. It is unconscionable! On the other hand, there are professional research scientists who are mindful of their patients and they set their egos aside and work to provide an atmosphere of cooperation and coordination among their colleagues within their research community to solve the issues effecting their patients.