Right now, along with countless other sick people around the world, I'm angry.
XMRV, for those who don't know, is a retrovirus. There are only two other human retroviruses. The first being HTLV (the Human T-lymphotropic virus which causes T-cell Leukemia and Lymphoma), the second being HIV which was discovered in AIDS patients in the1980's and the third being XMRV which was only recently discovered in 2006. XMRV stands for Xenotropic murine leukemia related virus. It is similar to both HIV & HTLV.
In 2009, researchers at the Whittemore Peterson Institute found a significant link between CFS/ME and the XMRV retrovirus. Now, I'm not saying every person with Fibromyalgia has CFS/ME - but according to my doctor, most (if not all) of us do. Some doctors see all three conditions as the same disease but hey that's a whole other post LOL. In over 95% of ME patients tested for XMRV, the result came up positive. Every single XMRV test they did for Fibro patients came up positive. Other researchers from other institutes have confirmed these findings. The CDC stopped (and still stop) this information from making it into the papers, instead the CDC release their own bogus reports which basically imply that XMRV does not exist.
The CDC deny these results. They used their own testing methods in patients with CFS/ME and 100% of the tests for XMRV came back negative. They've repeated these tests a few times...and they keep coming up negative. Why? Because they're DOING IT WRONG. They haven't tested using the same methods as the WPI and refuse to do so. The CDC are basically denying the link between XMRV and chronic diseases. They're saying the link doesn't exist. Not only did the CDC use blinded testing methods, they used a completely different patient group!! A TEST IS ONLY AS ACCURATE AS THE INTEGRITY OF THE SPECIMEN! To add insult to injury (pardon the pun) - the CDC released this statement not so long ago:
"One thing is certain at this juncture: there are no immune disorders in CFS patients".
The above bullshit statement was released shortly after another press release stated that CFS/ME/FM patients had a significant decline in immune dysfunction. Can anyone smell a fucking cover up here???!! Almost all of us with FM/ME/CFS have either auto-immune or dysfunctioning immune systems. All of our specialists and doctors would disagree with the above statement just as we do. The difference is that to us (the people who suffer), the above statement is just adding to the ignorance among the public! It's just making it harder for us to get the awareness out there because what the CDC are basically saying is what they've always said..."CFS/ME isn't a real illness".
At the same time as the AIDS epidemic hit, CFS/ME hit. Back then everyone was calling it "Yuppie Flu" - just like today, people were getting sick and they just weren't recovering. Obviously it was spreading then as it's spreading NOW. The outbreak of this "flu" started in Nevada. Many, many doctors pleaded with the CDC to investigate why so many people were falling seriously ill...but the CDC did not do anything. They're still not doing anything over 20 years later. They covered it up then just like they're covering it up now. ME stands for Myalgic Encephalomyelitis. In the 80's, the CDC changed the name to Chronic Fatigue Syndrome. A lot of people believe (as I believe) that they changed the name to alter the public's perception of the disease.
Our life expectancies are 20 years shorter than our healthy friends and our healthy family members. Some of us have parents who will outlive us. Some of us won't be around to meet our grandchildren. As most of you know, I've only been sick with this for 4 and a half months...but I know people who've been sick with this for close to 40 years. A good friend of mine has been suffering for close to 20 years. The clock is ticking, luckily for all of us, the ticking is getting louder. SO LOUD that the CDC may just start hearing it. The XMRV virus (and CFS/ME/FM) are not airbourne...you won't catch it from breathing the same air we do. However the XMRV virus can be spread through sexual contact, blood and breastfeeding.
So.....to all of us women with healthy husbands/partners and children, well shit. Thanks for letting us know about those risks, CDC (note the sarcasm). In Australia and Canada, patients with CFS/ME/FM are no longer allowed to donate blood. Why? Because of the XMRV risk of course. See, it's not only the patients taking it seriously, it's the people in charge of our country's fucking blood supply! Are you beginning to see how crooked the CDC are now yet or what?
The similarities between AIDS and CFS/ME/FM are scary. There's no other word for it. From immune dysfunction to similar infections to the cognitive difficulties. The CDC would and do deny this...they continue to either mock or ignore every single piece of research published stating that CFS/ME have any immunological involvement. They've been good at bullshitting since the 80's and they're still doing it now, only now with all the new evidence and louder public outcries, their bullshit is becoming more and more apparent. I'd like to say it's laughable but it's not.
These retroviruses cause cancer, infections, neurological diseases and of course, immune disorders. All three retroviruses are permanent. Just as our diseases are permanent.
The more evidence found about the link between XMRV and our disease, the more it's looking like the cause of the diseases we suffer. That is simply undeniable. The CDC need to wake up and do the right thing here. People are dying every single day, and I'm not just talking about the people who commit suicide because they can't bear their illness anymore. I'm also talking about the people who "suddenly" stop breathing, who "suddenly" suffer a major heart attack, who "suddenly" have a stroke. These deaths ARE due to the person's illness but they are never documented that way which does an indescribable amount of harm and misjustice to the victim's family. It's so fucking wrong on so many levels and this cover up by the CDC is the reason why.
Now...if you're going to call me paranoid, then call almost every CFS/ME/FM patient paranoid. Call our doctor's who can't do a damn thing about this paranoid too. Call the widows and families caring for their sick loved one paranoid too. Actually wait, if you're going to call me paranoid, you must work for the CDC. Centre For Disease Control? - Now that is laughable. The only thing you lying bastards control is covering your own asses.
These diseases can be fatal. These diseases ruin lives, marriages, families. These diseases are so misunderstood, under-reported and ignored by the media that our own families don't even know how seriously ill we are. The general public have no idea...until they get sick. If the XMRV retrovirus is the cause as to why we got sick (which research suggests it is), and if that were to be made known to the world - then we will be able to access better treatment. Better medicines. Better health care. A better outlook - a better understanding of why we're so damn ill. A much better mental state due to all of the above.
So my question to the CDC is this: Who the fuck are you to deny us that?
On that note, I'll leave it.
Em
xoxo
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