Friday, December 25, 2009

CFS is *still* being disparaged even with XMRV proof

Dr. Bell wrote:
I am  amazed how mainstream medicine is so fixed in their biases against
ME/CFS that  the concept of XMRV actually causing the illness almost doesn't
enter their  consciousness. Dr. Reeves, head of the CDC project on CFS has
made only one  comment to my knowledge, that he "doubted" this would turn out.
What a  comment. Why not "Interesting." or "we will see."

Hillary Johnson made some interesting observations. First,  "Why  wasn't
everyone demanding dozens of replicative tests on the prostate cancer 
findings?" Yet when CFS is implicated we will need twenty studies which  replicate
the first. And if some poor studies do not find XMRV, they will be  given
preferential weight to studies that actually find  it.
Clearly the solution to this is for our existing CFS experts to decree that huge numbers of CFS patients have been "misdiagnosed" all these years, and what we really had was XAND ... except that because there was no test for XMRV until now, we got mislabelled.
Decades ago, I got the CFS diagnosis and scorn, while another young lady in our church got an MS diagnosis and more help than she really needed.  It was not the one who quit her job immediately who was called "lazy" -- it was the one who was struggling to continue working against the odds.  She was not called "faker" as I was, even when she quickly amended her divorce paperwork to request full lifetime alimony for her purely self-reported symptoms, while I continued to work and support myself (not only then but up until now).  I was diagnosed first, but as soon as she got her diagnosis, I was the one called "copy cat", for symptoms that I'd had for over a year before she suddenly claimed to have any symptoms.
I asked my doctor why she got one diagnosis and I got a different one, with almost identical symptoms.  She had double vision, which is seen in MS but not in CFS, and I had something that's seen in CFS but not in MS.  That was the extent of the difference between respect and insults: double vision.  Her best friend was a nurse, and I am certain that she discussed it with the nurse before going to a doctor; her friend may have even told her to mention double vision to make sure she didn't get the diagnosis that would be disparaged.  How do you disprove that the patient has double vision?  (Well, except maybe by following the patient to the parking lot and noting that she drove herself there.)
When I realized that "CFS" means nothing to most people, but "Chronic Fatigue Syndrome" produces "I have that, too", I changed my explanation of what I have to "something very similar to MS" -- people can get their heads around that -- and slowly work my way around to the CFS/Chronic Fatigue Syndrome terminology if they appear interested in how I'm affected.  That seemed to work better than spelling out CFIDS/Chronic Fatigue and Immune Dysfunction Syndrome ... as soon as I got to the IDS part, people ran away, thinking I had something like AIDS, was contagious, and they'd get it from touching me.  (It may have been a better name, but I didn't want to live in isolation, so I went back to the lesser of two evils.)
Now, last laugh, I *do* have "something like AIDS", a retrovirus.  If we drop the "formerly known as CFS" part entirely, maybe we'll finally get some respect for the yeoman's duty we've all done, the courage we've shown over the years in battling our illness *and* public perception, far in excess of what we've always gotten when we said "CFS" and people heard "tired all the time".  In 23 years with this disease, only one person has ever said "courageously battling" about me, a term that's always applied to cancer patients, and she's the one with a sister who died of CFS complications, so she knows the truth about the disease, that it's not just a case of the sleepies. 


Andrea Martell said...

So you're positive for XMRV?

CFS Facts said...

I haven't been tested yet. However, I do know that all my problems started with a severe virus, 105 fever for several days, so I have always been quite clear that whatever is wrong with me is post-viral and not psychiatric, no matter what the doctors have tried to brainwash me with over the years.

C-Reactive Protein, which shows infection/inflammation without needing to know *which* virus to test for, has always been abnormal.

Until I scrape up the $600 to get tested, I'm just guessing that it's XMRV, but since I was diagnosed with CFS by a CFS expert, I'd say that's a pretty sure guess.