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Musings on Retrovirus XMRV and Chronic Fatigue Syndrome

By Jody Smith HERWriter
 
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The recent discovery of retrovirus XMRV raises more questions than answers for me. Not surprising, this is very new research. Speculation and theories explode as people wonder how, or if, this will impact their lives.

First theory. XMRV causes Chronic Fatigue Syndrome. A good anti-viral is all that's needed and we'll all be cured. We all like that one.

Another theory. XMRV does NOT cause Chronic Fatigue Syndrome. CFS has an as yet undetermined cause which hogties the immune system, allowing XMRV to flourish.

A similar raising and dashing of hopes occurred when we thought for one shining moment that the Epstein-Barre virus (EBV) was the culprit. Lots of people who don't have CFS carry EBV but they're not sick. Nor does getting EBV under control eliminate CFS. Maybe whatever causes CFS also leaves people vulnerable to proliferation of EBV. And now, of XMRV.

Here's a related theory. XMRV is not the cause of CFS, but it alters our DNA and triggers other viruses. This could explain the wide range of CFS symptoms.

Worrisome thought. If XMRV is the cause of CFS ... what if they can't cure it? Are we doomed to carrying a life-long virus that stirs the pot every once in awhile, causing life-stopping relapses? Must we learn to live with the ominous knowledge that we carry within us a ticking time bomb?

Let's speculate in another direction. The first response for many of us was elation. Then trepidation, as we realized this may be great for people who test positive for XMRV. But what if I don't test positive? While those with XMRV get treatment, will I be once again discarded to the medical / scientific Ignore list? Where the reaction of much of the medical community is a shrug, a scratch of the head, and a barely concealed yawn?

Will I now be twice rejected? First for having Chronic Fatigue Syndrome, and now second for having the "wrong" one?

Just a few of the thoughts that have caused many a CFS relapse and crash last week. Other stalwarts with CFS wrote letters, made appointments, posted online comments and wrote articles.

Add a Comment11 Comments

EmpowHER Guest
Anonymous

In reality the scientist that found it made an assumption that a retro-virus was the primary cause and then found the exact one she postulated would be apparent. Science doesnt work that way - it seems pretty unlikely in my opinion.
It doesnt explain the apparent orthostatic intolerance and neurological problems that are apparent in CFS - other than suggesting they are immune mediated which has never been even close to proven.
The answers in life ARE complex - if they werent we'd know what causes essential hypertension - which we dont and trust me that one has been OVER studied.
The connection between CFS is not UNDENIABLE until more than one study demonstrates the connection. So from one study you cant make any generalisations. There are studies about CFS that show all sorts of often quite laughable contentions.
You are excepting the XMRV connection primarily BECAUSE it fits your preconceived view of what will be the cause of CFS not because of the science behind it which is questionable thus far.
The study and much of the work of the institute involved is based on assumption rather than science - they didnt just go in and start studying CFS - they went in with a preconceived view that a retro virus caused CFS, then surprise surprise they found the first retrovirus they looked for in nearly all patients - too good to be true for mine.
Dont get me wrong - I want the answers as much as any one else, but false hope has happened too many times already in CFS patients. Ill believe it when its replicated. Until then your clinging to straws.

November 24, 2009 - 2:33am
EmpowHER Guest
Anonymous

My concern is that this is too good to be true and in many ways based on assumptions rather than science. As an example the institute makes a number of statements about CFS that are equivocal- that it is connected to lymphoma, that nitric oxide is elevated in CFS and even that it is primarily a immuno- rather than neurological illness.
My theory is that retroviruses like XMRV may cause abherant hypermethylation- this could account for its connection to prostate cancer through aberant hypermethylation of tumour supression gene promoters and of CFS through hypermethylation of the NET gene promoter- increased NE and disregulating blood flow,

November 10, 2009 - 4:15am
EmpowHER Guest
Anonymous

i am a few months away from traveling to Dignitas after 17 years of this CFS hell. i feel as if someone is squeezing my brain 24/7. I am bedbound and in constant agony. Everyone assumes this XMRV is great news, that I will change my plans. It isn't great news to me. FIrst, people told me I had a psychological disorder. Now I have something similar to AIDS, which will not have drugs to treat it for several years. I cannot last another day let alone another year. I am without a life, without a future, and without peace of mind. I just hope that those who swept this under the rug for decades will one day pay.

November 6, 2009 - 2:50am
EmpowHER Guest
Anonymous

How interesting that you mentioned relapse following the NYTimes/Whittemore Peterson Lab announcement. After a long period of mostly good health, I relapsed after following the news for a few days. How thrilling to learn that XMRV causes lymphoma in addition to all the other problems we experience with CFS. Frankly, I hope I don't have it. XMRV sounds frightening. Hilliary Johnson's op-ed piece in the Times refers to "horrrendous neurological" problems in animals that carry that retrovirus. sigh -- from a 16 year sufferer who used to climb mountains and practice law.

October 23, 2009 - 4:36pm
EmpowHER Guest
Anonymous

I'm going on 25 years with this miserable disease. I'm barely able to fake my way through it at work most days and lately it's getting worse.

2 years into it I sat in my car with a hose on the seat next to me writing my suicide note. The hose was meant for the exhaust pipe. Ahhh... the ultimate cure. When I started writing my goodbye to my kids (then 3 and 5) I lost my courage; I didn't want them to grow up without a father. In retrospect though, they did grow up without a father and the father they knew was rarely able to interact with them and often a grumpy old bear because he was so exhausted from forcing himself to go to work every day.

Eventually my wife's inability to accept or try to understand my illness is probably what led to my divorce. No worries on that front though - I'm better off without her. I have a wonderful and understanding girlfriend and my daughter has come to accept me so it's not all bad, but I don't have a future yet. I want a future. I need a future!!! Dammit I've gone through half my life the miserable shell of a person and I need something to look forward to. Anything!

If anyone from the CDC that was involved with trivializing this horrible disease with its ridicule-invoking name reads this, I hope that you come down with "chronic silly little clowns rip your skin off with red hot pliers syndrome" and may you rot in hell after you die a thousand deaths!

October 22, 2009 - 12:45pm
EmpowHER Guest
Anonymous

"carrying a life-long virus that stirs the pot every once in awhile, causing life-stopping relapses"

Yep, that sounds about right. I've been living with that exact description for almost 20 years. Sorry to break the news. This appears to be life-long.

October 21, 2009 - 7:06pm
EmpowHER Guest
Anonymous

XMRV is thought to be transmittable. If a person has XMRV with a diagnosis of ME/CFS then it may turn out that they will receive a more appropriate diagnosis of XAND (X Associated Neuro-immune Disease.) So XMRV and CFS are not mutually exclusive. In fact the study showed that XMRV antibodies were found in 95% of samples.
If a simple explanation is found for CFS then the same can be said for MS and other neuro immune diseases, cancer etc. Medicine, disease and the research required is complex, not simple at all. Read the WPI study and see for yourself.

October 20, 2009 - 8:09pm
EmpowHER Guest
Anonymous (reply to Anonymous)

The answer will NOT be simple; however, the correlation that has been established between XMRV and CF is undeniable. If you review the HHS video again which summarizes some of the most important information not yet published, but uncovered, it is clear that XMRV has to play a significant role in CF. That role could be additive to other viruses, or the other viruses could enable XMRV to take hold in a particular way. There are lots of possibilities scientists probably have not even considered yet. After 40 years with this disease, I have witnessed it all. XMRV fits my own predictions of what would be found. Put that together with the testimony above and the connection cannot be denied unless the devil himself is leading us all astray.

November 23, 2009 - 6:54pm
EmpowHER Guest
Anonymous

Lots of unnecessary musings when nothing has been established about XMRV. Complicated theories are rarely true in real life. When it's all done, there will be a simple explanation for CFS. Meanwhile, consider this: there is no evidence that CFS is contagious while XMRV is believed to be.

October 20, 2009 - 12:44pm
Jody Smith HERWriter

It was a nice change for a moment, from that invisibility thing we all live with, wasn't it?

October 20, 2009 - 11:22am
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