The announcement that 95% people with Chronic Fatigue Immune Dysfunction Syndrome AKA Myalgic Encephalomyelitis had the retrovirus Xenotropic murine leukemia virus-related virus surprised the hell out of me after all the years of research on CFIDS/ME being blocked by some agencies like the CDC in this country. They do not have direct proof it is the cause of CFIDS. Anyone who knows anything about retroviruses and CFIDS is probably 99% sure the cause has been found. Having a retrovirus messing around with cells in an immune system would not be without noticeable neurodegenerative disease, it is most likely not just a rider.
The Whittemore Peterson Institute has this statement on their website:
The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response, which result in chronic immune activation and immune deficiency.
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. (See XMRV paper in Science.) http://wpinstitute.org/news/news_current.html
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.HIV is a retrovirus and there is some hope the medications for HIV will work for CFIDS/ME, but they aren’t even in the same categories. HIV is very complex and XMRV is simple. HIV meds can also be very toxic.
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.
As National Academy of Sciences member and expert retrovirologist, John Coffin wrote in the commentary accompanying our landmark publication in Science "One New Virus-How many Old Diseases". We look forward to translating this discovery into treatment options! http://www.wpinstitute.org/xmrv/index.htmlIt is possible it is the cause of many diseases because the manifestation of the infection could be different depending on genetics. There was also a study of some autistic children which showed that 40% of them had the virus. Autism is believed to have many causes. It was long theorized that CFIDS/ME was caused by a virus and a retrovirus was the most likely cause. All the while the CDC diverted the money congress allotted for CFIDS/ME research because they did not think it was a real disease. How much sooner would this discovery have been made if they had taken it seriously? How much less suffering would there have been? How many medications would have been developed by now? People die of this disease, get cancer, and commit suicide at a high rate.
Since it was not taken seriously and treated as a mental illness by the government and many health care providers even with overwhelming scientific evidence to the contrary and is an infectious disease, how many cases could have been prevented? Retroviruses are not generally very easy to get as most people know due to being familiar with HIV. The only route by which it is definitely contagious is blood to blood, but it seems likely it will be similar to other retrovirus routes of transmission. If one does not know they have one they may donate blood, have unprotected sex, addicts may have shared needles, mothers may have breastfed babies, etc. I noticed MSM is not discussing that factor. I also think it is interesting this is a mouse virus because as everyone knows mice are used for a lot of lab experiments. Those viruses implant themselves into the genome of the host and could easily be transferred unnoticed.
I am torn between being thrilled it was finally discovered and being livid at the malfeasance and ignorant abuse that happened to people who have CFIDS/ME. I am very intrigued that XMRV was found in both CFIDS/ME and autism. Why, because I have both. I was diagnosed with what was called Chronic Fatigue Syndrome sometime around 1990, but had been ill long before that.
I was ill a lot as a child. I caught every virus that came around and got bacterial infections easily. I would have periods of time when I got better, but stress would trigger something and I would get really sick. My mother took me from doctor to doctor and did not ever get a good explanation. As an adult I had less flare ups. I worked full time when I went to college and in the 1980s I got what I thought was a really bad case of the flu. One of my hobbies was body building and power lifting. Swimming and weight lifting are common autistic sports. I was just getting ready for competition. I am naturally very strong, never took steroids and weighed about 125#. I was extremely healthy. After a month of recovery from what I thought was simply the flu I went to the gym, did a very light workout and ended up in bed for a week. My trainer told me to wait another month before working out. I went back and after one day, bam, back in bed for several days. I went to a doctor who told me there was a nasty virus going around and sometimes it just took a long time to get over a virus. I was very ill, very fatigued, I hurt all over, and my thinking was foggy.
This went on for several months. The doctor I had at the time let me know he thought I was having psychiatric problems because I was coming to see him so often. I told him I had a murmur and it was probably my mitral valve. He listened to my heart and told me I did not have a murmur and he was sending me for an echocardiogram just to prove it to me. I hear things others can't hear due to my neuro-sensory autism issues so I told him so. He rolled his eyes. The test showed I had a prolapsed mitral valve. Which is not a part of the other problems, it is just an illustration of the way some doctors treat women like their complaints are psychiatric and we are not taken seriously. Next I told him I thought I had some autoimmune disease due to my joint and other problems. He told me I did not have arthritis and he would send me to a rheumatologist just to prove it to me. I told him I already had an appointment. The rheumatologist sent him one of those thank you for sending me this patient as she has some kind of autoimmune disease which is causing her arthritis letters. I stopped going to see that guy who was one of the better doctors in the area. He just thought automatically everything I said was wrong, even though I was always right. It was because of my femaleness.
I then went through lots of doctors as I got more ill as time went on. I had horrible headaches and was given a medication called Stadol which the drug companies told the doctors was not addicting and it is actually very addicting. So, that is how I became addicted to narcotics. I did occasionally have a prescription for Tylenol #3, until I developed a severe allergy to it. I was dizzy and nauseous, had a low grade fever, had weird tingling in my hands and feet, was exhausted, and hurt so much I could hardly function at all. On top of all that I either slept for twelve hours and was still exhausted or could not sleep at all. I was trying to work, but always in trouble for calling in sick. Nurses get exposed to every disease in the world, but get in trouble for calling in when they get sick. I use to ask my supervisors why they were not concerned about the ICU patients catching viruses from us.
After a time I was given antidepressants, but the normal doses made me even more dizzy and increased the nausea. I would throw up for hours and have diarrhea at the same time. I would end up lying on the bathroom floor unable to get up with a torn esophagus throwing up blood and passing pink mucus out the other end. I resisted going to the ER as no one could tell me what was wrong or do anything for me. I was continuing to often be treated like I was having a psychiatric problem even though I was running a fever and having severe health problems. Rarely I was admitted to the hospital with my coworkers taking care of me. The IV nausea medication would not make me stop retching, so they gave me Demerol to just knock me out afraid I would rip my esophagus. The new nausea medication at the time was Phenergan and the nurses did not know they needed to dilute it and destroyed several of my arm veins with it. When the doctors told me I had just caught some kind of gastrointestinal virus the nurses would all say that was crazy. Three months later they would still be telling me I looked horrible. The doctors would just tell me they couldn't find anything. There was a brave doctor in Tacoma WA named Ed Prizanski who started treating CFS even though all the other doctors were making fun of it. I was not sure it was real and never considered I had it. I was sure I had an autoimmune disease, except for the neurological symptoms.
I tried to stay away from the doctors as they did not take me seriously, except the rheumatologist who told me he knew something would be found eventually, but it was a mystery to him then. He treated me for Lyme Disease and some other problems, just in case. I kept getting worse and finally I would be so dizzy at work I would not know how I could stay upright for the whole twelve hour shift. I was in severe pain all the time and so damn exhausted. It even hurt to breathe. I felt horrible and was sometimes very hot all of the sudden. In desperation my rheumatologist put me on prednisone for a while in case it was an autoimmune disease. I got better for a short time, but had the usual side effects it causes. I was having one sinus infection after another and on antibiotics all the time. The joke was I was sicker than the patients I took care of in the ICU. We made several jokes about parameters for calling doctors, one was we only called the doctor if the patients fever was as high as mine. When I would show up at work with a burrito from Taco Bell my coworkers said they knew that meant I felt really bad and my gut was bothering me. Finally I went to four hour days and could barely handle that. I found if I put a packet of salt in a glass of water and drank it the dizziness got a little better. The nurse manager was a typical one from that era, nasty, and she had no sympathy for a sick nurse. I suspected I had contracted a horrible virus from a patient at this point in time. I am not so sure of it now. I may well have had it as a child. The real problem was I was being exposed to lots of infectious diseases and I had a defective immune system.
I had to stop working for about five months. I had no diagnosis to even apply for social security with. I did not even want to apply. I did not want to be sick. I wanted to work and was sure if I just rested a while I could. I went through years of being ill and struggling to work. Finally enough information was published about CFIDS/ME for me to realize it might be what I had and I went to Dr. Prizanski. Not much was known about treating it, but he did the best for me he could. It was nice just to be believed but, the name of the disease, Chronic Fatigue Syndrome was a joke. There have been several attempts to change it and people in government agencies would not allow it. Why? Is there some reason they wanted it to not be taken seriously? There were a lot of nutritional supplements that helped. One of the most important things I learned was not to increase my activity level very much because it makes the disease worse. Activity must be increased by small increments. I was in significant pain for many years. My story is not unusual. Many people have died from the disease. One of the worst problems with it is Lymphoma. There have been many suicides which are usually related to pain or financial devastation.
I worked as an agency nurse a lot which allowed me to pick and choose the days when I felt better to work. It also decreased my stress because I was totally removed from social politics. I got better and decided to take travel nursing assignments. Part of my reason was I would be somewhere for thirteen weeks and rest for a month before the next assignment. It worked pretty well, except I am autistic and did not like changing where I lived all the time. I got very healthy to the point I forgot I had CFIDS/ME then I moved to Alaska and everyone knows what happened. Stress causes the disease to get worse. I was worked up for MS a few months ago because I got that bad.
…I became convinced that the genetic predisposition found in autism must be the same or similar to that in a major subset of CFS…http://findarticles.com/p/articles/mi_m0ISW/is_279/ai_n16865315/
My research tells me a lot of people have been thinking CFIDS/ME and autism are related, on the same spectrum, or actually the same disease. Some are saying CFIDS is the adult version of autism, interesting. As everyone knows AIDS drugs took forever to develop and lots of people died and suffered. The government drug their feet with AIDS and now they have done the same with this new immune deficiency syndrome aka CFIDS.
http://www.prohealth.com/library/showarticle.cfm?id=6978&t=CFIDS_FM
http://www.ageofautism.com/2009/10/david-kirby-on-huffpo-is-autism-associated-with-a-viral-infection.html?cid=6a00d8357f3f2969e20120a63645d8970c
http://www.neuroimmunedr.com/present3/index.htm
http://www.sciencemag.org/cgi/content/abstract/1179052
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