Chronic Fatigue Syndrome Advisory Committee (CFSAC)

This is for those interested in CFIDS/ME and XMRV. I decided to post all of the video segments because I had some problems finding them all and it will save people from having to search for them.

Part 1: Dr. Dan Peterson, a man who believed CFS or CFIDS/ME was a real disease many years ago. I have encountered many over the years who believed me even though they did not know what was wrong with me for years. There were some who were abusive, but I had to go to Nome Alaska to really be treated awful. When I got the PTSD the cortisol from the stress caused the XMRV to multiply and I got very ill. I came in confused, with swollen knees, severe pain, and even a facial droop. They were very abusive to me each time. One day I came into the clinic at 2 PM waited all afternoon to be seen. At 5 PM they start the after hours clinic. The first thing they did was tell me I should not have come in to the after hours clinic unless I had an emergency. When I told them I had indeed been there since 2 PM they put me in a room where I sat for 2 hours. I was determined to get help. The mid-level provider then proceeded to come in and out of the room trying to start an argument with me over the period of an hour. It was very odd and she made little sense. She told me to leave. I received no treatment from them and finally just left. Even though they told me to leave they wrote in my chart that I left against medical advice. The truth is I was very ill and was refused medical care for both the PTSD and CFIDS/ME. How awful that such people are in charge of the health care of the native people in that region.

Part 2:

Part 3:

Part 4:You go girl!

Part 5: Dr. John Coffin, HIV expert, discusses XMRV. HIV is also a retrovirus like HIV as most people know.

Part 6: Dr. Coffin argues against contamination from lab mice which is certainly the very first thought I had when I found out XMRV was a murine or mouse virus.

Part 7:

Part 8: Panel discussion.

Part 9: Panel discussion continues, The blood supply issue.
I was a supervisor at a blood bank. The FDA required us to ask if people had CFIDS AKA CFS. If they did they could not dontate, but many people would not have known as their doctors would have not diagnosed it due to rampant denial of the illness. Government agencies blocked research which prevented the discovery of this virus sooner. This allowed it to remain in the blood supply. There needs to be a test developed for the blood banks to use to eliminate donors with the virus.

Part 10: Panel discussion, "we don't want to have another Band Plays On" scenario, like with HIV. It happened with Hepatitis C also.

Part 11: Panel Continues. Dr. Dan Peterson," I think historically there has been no collaboration, particularly with the CDC." Lack of collaboration does not begin to describe what has gone on at the CDC with regards to CFIDS/ME. They actually sabotaged the research and did everything they could to block those who were doing research on the illness. They tried to label it a mental illness which was mostly due to gender discrimination by Dr. William Reeves as most of us are female. He held up research which could have helped discover the SMRV sooner. This attitude at the FDA and NIH caused untold suffering in people who had the illness due to denial of care, denial of disability, and medical abuse by physicians who believed the patients had a mental illness or just tired. The CDC refused to call the disease Myalgic Encephalomyelitis like in the UK opting instead for the idiotic name Chronic Fatigue Syndrome. This name focused on one symptom and left out the immune system dysfunction as well as many other symptoms including the neurological ones.

Thousands were infected needlessly because CFIDS/ME was treated like it was a joke. This private company discovered the cause in a very short period of time. The truth is there are many scientists who were treated horribly in this country for saying this disease was most likely caused by a virus, probably a retrovirus. "Those who attempted to keep patients from getting treatment" are still causing problems. I and many others have been treated horribly on multiple occasions in the past including working side by side with doctors who did not know I had it and made jokes about it, the government agencies whose job is to do the research to find the cause and get patients treatment essentially refused to do so even when directed to by congress. People who have this disease can be just as ill as someone who has multiple sclerosis or aids, yet were denied benefits or the research needed to get some help. Between 1995 and 1998, 57%, or $12.9 million, of the funds allotted to the CDC by congress which were reported to have been spent on CFIDS research were spent on other programs. The CDC ignored congress when they instructed them to step up research into CFIDS/ME. Those who diverted the money for the research should have at least been fired, all they did was rearrange the director's job. What could have been accomplished during that time if they had honestly done their best to find the cause?

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