SKIN DEEP

What the heck is going on?

I'm speechless.

For me, that's saying quite a bit.

What has happened to courtesy? Common or otherwise?  It's been an amazing couple of days for me and the whipped cream with the cherry on top is the shooting of Congresswoman Giffords in Tuscon, Arizona.

Let me go back a day or so.

I got an email from a friend of mine who is working to help get research on the XMRV retrovirus. He suffers from Chronic Fatigue and Fibromyalgia and has worked very hard to get funding for research. He happened to mention it on a forum and from that moment on his life has been a living hell. I have never read such vile attacks as those I read on a Chronic Fatigue forum by their members. What kind of people are these? As I wrote back to him, rabid attack dogs are kinder than those people. 

There is ABSOLUTELY no room in forums for people like this. Research is limited at best. Funding dollars haven't exactly been thrown at researchers for Chronic Fatigue/ME or Fibromyalgia. After reading what I read I wouldn't want to spend my dollars to help finding a cure for these people. It sounds like they'd still have a problem even if they didn't have this disease. I know I sound very, VERY harsh, but, I hate this kind of garbage. I hate injustice and their vile attacks on someone who is trying to do something good and to pay it forward is unwarranted.

Why can't people just say thank you?

Why can't we just agree to disagree?

Why can't we all just get along?

I sound like Rodney King.

I am on the more conservative side of the fence and I have many friends that tend to be on the more liberal side. Do we agree on every issue? No. Would I ever question their intentions? Absolutely not. 

I was raised to believe that I should treat people with kindness. Not everyone will respond in kind, however, that had no bearing on the way I should act or react, for that matter.  I was raised with class and dignity and will say right here and now that people that use this forum to say vile and hateful things are classless. 

There is a way to disagree with civility.

Things can get heated because issues that are near and dear to our hearts cause us to get quite passionate. That is understandable. To resort to rhetorical or physical violence is hard for me to fathom. What have we done as a society that caused us to bypass discipline when raising our children? What have we done as a society when accountability for our actions accuses us of being intolerant or not "politically correct?"

How do people justify their actions? What warped and twisted rationale is used to say that this is the appropriate way to voice their opinion?

I'm watching CNN and I'm appalled by the shooting of Congresswoman Giffords. Again, I will never understand actions like this. 

It's becoming acceptable to become verbally abusive and to write vile comments when we disagree. 

Physical violence has, sadly, become a part of our everyday lives. 

We only need to turn on the TV and be bombarded.

I pray for a society that doesn't know how to exercise control over our mouths or our actions.

BY GEORGE, I THINK I'VE GOT IT

Yes, I think I've got it.

Unfortunately, I think it's 

the XMRV retrovirus.

One of the best things about blogging is the interesting people that I get to meet. One man, "George" contacted me and every so often we trade information about Chronic Fatigue/ME and Fibromyalgia. He also has both illnesses but leaning more to the Chronic Fatigue side. I have both but lean more toward the Fibromyalgia side. He has been very helpful with his knowledge of medications and is very much into the research end of these illnesses. He has provided me with some wonderful links which I will add at the end of this post.

He asked me to announce some studies with people who have tested positive for the XMRV virus. I'm going to copy his email on to the blog so that I don't miss anything important by trying to summarize.

" In the mean time do you or any of your friends been tested positive for the XMRV retrovirus. The reason I am asking as a very prominent researcher is looking into XMRV and also MLV, MULV as causing Fibromyalgia and CFS as per NIH Alter, discoverer of Hepatitis B & C, and FDA Dr. Lo recent research study. The NIH is researching the cause of these illnesses by putting the world renown  expert, Dr. Ian Lipkin, known for rapidly discovering the agents of emerging infectious diseases in charge of finding out what's going on.

Another prominent researcher is looking for patients who tested positive for XMRV. He works at the world famous Fred Hutchinson Cancer Research Institute and the University of Washington in virology and molecular biology.

So maybe you can the get the word out via your blog to determine if anyone was tested for XMRV as he wants them in his research. I am a fund raiser for Fibromyalgia and CFS and I am also a member of a very large philanthropic foundation. I am trying to contact researchers who are willing to investigate this disease as well as obtaining funding through my foundation."

I'm also going to forward this information to Dominee Bush who has a fantastic newsletter for sufferers of chronic illness. If you haven't signed up for her newsletter, I encourage you to do so. It really is helpful. Funnily enough, I had no idea who she was when I signed up for her newsletter. I happened to stumble upon it and liked it, so I subscribed. Believe it or not, I went to high school with her! Amazing, isn't it? I will also include the link to her newsletter at the bottom of this post.

So if any of you have tested positive for XMRV, please let me know and I'll forward your information on to George. If you would like to use this post or link back to it from your blog, please feel free to do so, in fact, it would be very much appreciated.

I have a post, funnily enough, about my distrust of doctors and looking for people that might actually be interested in looking for a cure or one that wants to treat the whole person. Then, I got the email from George. Things always happen for a reason!!

So here are the links that George has provided and again, if any of you would like to get information from George on this research, please don't hesitate to contact me at roselee3@cox.net. 

CFIDS Association of America

CFS Central

Retroviral Activity in CFIDS

ME Society of America

Fibromyalgia Newsletters

RETROVIRUS - XMRV

The XMRV virus - what is it?

X - Xenotropic

M - Murine leukemia virus

R - Related

V - Virus

What a nice friendly looking retrovirus.............

Chronic Fatigue Syndrome and Fibromyalgia have been largely dismissed by the medical community as either the "yuppie flu" or a mysterious disease based largely on the imagination of neurotic depressed women. This has lead thousands of women on a quest to find a doctor, any doctor, that will listen to them when they say they are sick.

Staggering figures.

A study recently published found the retrovirus in 67% of patients with Chronic Fatigue. Later on the researchers reported 95% of the patients tested positive with antibody testing. Also it was suggested that 10 million Americans may carry this recently discovered retrovirus.

A veritable cornucopia of viruses.

Chronic fatigue and Fibromyalgia have long been associated with all types of viruses including, Epstein-Barr, cytomegalovirus, Coxsackie viruses, echoviruses, enterviruses and parvovirus B19. 

Woof! 

From the very beginning it has been suspected that a retrovirus was involved. As early as 1986 an immunovirologist described retroviral activity in the cells of CFS patients but the actual virus wasn't described. 

It's just a start.

Other viruses could still play a part but this is promising. More research will still need to be done to confirm the part that it plays in this illness and to understand the full effects of this virus in general. The virus leads to immune dysfunction by damaging an antiviral pathway in the body. Considering that Fibromyalgia and Chronic Fatigue have been described as autoimmune diseases it's very possible that the XMRV is responsible. I hope that the funding dollars   will be there so that this valuable research can continue.

Is it contagious? What can help?

XMRV is thought to be transmitted through bodily fluids. That would make it infectious but genes and other predisposing factors appear to play a role in actually getting sick. Low dose naltrexone has been used in treatment with the retrovirus that causes AIDS. There are not a lot of side effects and has been used in the treatment of Chronic fatigue. 

After years of doctors saying that we're crazy maybe there now might just be an answer so Fibromyalgia and Chronic Fatigue will have the validation of the medical community at large.