Tuesday, July 13, 2010

Late Start but at Least I'm Moving

This morning was ROUGH (you all know what I mean) - somehow I only ended up being 15 minutes late to work - so I consider that a victory.

My "big" boss still does not think it's possible I have CFS or Fibro - because I'm such a hard worker and so motivated. Anyone else laughing out there in blogsphere?

I believe we were all hard working, highly motivated, and probably juggled far too many balls before illness hit. That's why I get so frustrated when someone makes off-handed comments without knowledge. Don't judge me because I'm ill, how about you take some time to do some RESEARCH. Most of us have had to completely change our lives around, some have lost wonderful (high paying) careers, some have lost spouses or significant others, some have even lost all their possessions. We try everything we can to get better: medications, expensive supplements, alternative therapies, what more does the general population expect?

Speaking of research - I have tried to stay out of the whole XMVR virus talk because I truly don't know enough about it to form an opinion. But can someone tell me WHY the results are not being published? How can science move ahead when study results are being kept away? I don't know if it's XMVR or something else, but I believe that every single ounce of research available (since we all know there is so little) should be available. Maybe then, people (like my boss - who is a retired MD by the way) would recognize that this is real - and happens to people "like me" every day.


  1. OK, are you ready for my angry rant about why XMRV results were held back. (I do believe they will actually be published in a few weeks now though)
    There are now 3 known retrovirus, HIV which causes AIDS, HTLV-1 which causes Leukemia and now XMRV which the people who discovered it believe causes CFS. In the 1980’s there were 2 outbreaks of a mystery illness in separate parts of the country (in USA) with in a short space of time. Roughly 400 people became ill with a flu like thing, but they never got better. The CDC were called in to investigate these outbreaks. They couldn’t find an explanation and so said that both instances were cases of hysteria … and in fact these people were mentally ill. This was the beginning of CFS as we know it now.
    Over the following decade thousands of people got ill with this all over the country (and the rest of the world). The CDC would not budge on their original diagnosis and so CFS became known as a psychological disorder despite the fact that there were many medical markers to suggest otherwise.
    In the 1990’s a drug called Ampligen was found to give people about 80% of their functionality back. Independent studies were done which concluded this. The CDC did their own study and disagreed and the drug was not allowed to made available. The CDC had to do this in order to save face. If they agreed with the study then they would have to re-classify hundreds of thousands of people as medically ill (rather than mental). This would also mean that the government would have subsidize this new medication and also make disability pensions available to these sick people. Also private health insurance companies would stand to lose millions of $$$ for the same reason. So, the drug Ampligen was banned.
    Last year the WPI made the link between XMRV and CFS. Two government agencies, the FDA and the NIH did their own studies and were able to verify the results. They found that 95% of people who had an official diagnosis of CFS (there are internationally recognized protocols for CFS diagnosis) had the XMRV virus. They also confirmed that 3-7% of the general public had it in their systems. Before the results could be officially released the CDC came forward saying they had also done there own study. However, their study found 0% in either people with CFS or the general public. How did they get such different results? Firstly they did not use blood sample from people who had an official diagnoses of CFS, instead they used sample from people with psychiatric related fatigue, secondly they did not use the testing protocol that the WPI (the people who discovered XMRV in the first place) set forward to use. The WPI said the blood sample must be cultured so the virus can grow. The CDC did not culture their samples. This information is fact, because the CDC study HAS been officially publish and this information is stated. So, basically there was no way their study would ever find the retrovirus and they made sure of it. The other important thing is that the CDC are responsible for deciding what can and can’t be officially published. The CDC have put a ban on the FDA and NIH’s study results.
    Aside from the fact that there are approx 17 million people with CFS worldwide that this effects the information that 3-7% of the general public are carrying this retrovirus is very scary. The Australian, Canadian, New Zealand and some European Red Cross offices have now banned people with CFS from donation blood. This is a smart move. If the US government do not make this public knowledge then their national blood supply is in further danger of contamination.
    Again the reason the CDC do not want this known is because they would have to admit they lied 20 years ago, and it have huge ramifications in terms of the governments and private insurance companies responsibilities to all these sick people. It would now be an enormous financial burden.

  2. Sorry that was such a long reply but ... that I believe is the story .... if anyone thinks I have the story wrong can you please chime in and correct me? I'd hate to spread misinformation ....

  3. Lee Lee -

    Wow thanks for catching me up to speed and for taking so much time to help me understand better. I have heard bits and pieces of what you stated above but have never had it put all together for me.

    The lightbulb has gone off in my head and I'm not surprised now that all of this is being kept under wraps - I had some suspicion of my own that it was motivated due to disability benefits and medical care.

    So I'm so happy to understand that the CDC would rather all of us continue to suffer than to admit they made a mistake YEARS ago.........

    Typical I'm afraid.