Why CFS is not C *F* S

I've been having a discussion with Jodi Bassett, author of the well-researched "Hummingbird's Guide to CFS", about Fatigue.

As Jodi points out, "fatigue" is not the primary symptom, Exercise Intolerance is.

http://www.ahummingbirdsguide.com/fatiguequotes.htm

http://www.ahummingbirdsguide.com/fatigueschmatigue.htm

Jodi is also working on a compare-and-contrast of CFS and fibromyalgia, which will prove that they are not the same thing.  I've asked her to post it as a comment here when she's done.  Too many objective test results which exist in one are completely absent in the other.

Although  60% of people with CFS are eventually diagnosed with fibromyalgia, I have to concur with Jodi that they're not the same thing.  It's been proven that you can create fibro-like symptoms in healthy volunteers by depriving them of sleep for a week.  Why is it not equally likely that you can create fibro-like symptoms via sleep deprivation in CFS patients who are not getting the deep, healing sleep they need?

Which brings us to another thing that patients understand and many doctors don't seem to: sleeping pills do not produce natural sleep. They simply put you unconscious for 8 hours so that you're not stressing over not sleeping.  The healing effects of deep sleep don't happen.  I've had better recuperation with two non-prescription treatments: 5HTP (tryptophan) and a Sleep Number bed, both of which promote NATURAL sleep.

 

UCD's own Dr. Erich Ryll, who treated the 1975 epidemic at Mercy San Juan Hospital, writes "Cultures were obtained for all known viruses, bacteria, mycoplasma, and rickettsiae, and all were found to be negative. The disease was apparently due to an unknown agent, presumably a virus." In other words, where Price states "all tests were negative", this is precisely what Dr. Ryll would have expected of the tests performed by Price.
It becomes quite obvious why their lawyer had to use an "expert" that no one in the Northern California CFS community has ever heard of. The head of the support group in his area and I both googled him, and both came up empty on what expertise he has in treating CFS.
I feel vindicated that they couldn't find an actual CFS expert to defend their screw-ups.

Ready to Name Names

Since the doctors have refused to negotiate a settlement, I didn't have to sign a confidentiality agreement, which means that I'm free to name names.

I found factual errors on almost every page of my records from University of California, Davis, Medical Center.  As much as their lawyer would like to claim that the things I don't agree with aren't open for dispute because they are the doctor's opinion, most of them are presented as fact.  The "facts" as contained in their medical records were twisted in ways worthy of a top-notch lawyer, leaving the reader with a completely different impression than what I actually said.  For just one example, a doctor claimed that I stopped working in 1988, the year I was diagnosed.  This should be of great interest to all the firms that gave me paychecks until 2000!  Another claimed I was self-diagnosed, which is disproven by records from multiple doctors who wrote down the CFS diagnosis and signed their names to it.  I know I never said what was written down.

So, since I can now name names, if you have CFS, stay far away from UCD, and Doctors Price, Kumar, Drennan, Leek, Manhart, and Taylor.  They may tell you that they want to help you, but they didn't help me, not by improving my health and not with accurate documentation that would help me get disability benefits. 

A letter from Christopher Price says that all tests were normal; what it doesn't say is that the tests that were performed should have been normal for a CFS diagnosis.  The tests that should have been abnormal weren't done.  But the way it's written, the judges have repeatedly reached the obvious conclusion that the tests were normal because I don't have CFS.

Speaking of naming names, Seanette claims that the house was clean when she moved out.  Brian has stated that the house was a bigger mess when she moved out; he had to put things back in the guest room that they had moved out to the living room, and numerous purchases that weren't put away when I asked them to help were piled on the love seat (which had been clear when they moved in).  I was doing some tidying in the dining room this week, and found a note and envelope addressed to her, dated August 2004, half-under a chair cushion.  It's not the first piece of their mail that's been found since they moved out -- the first person who swept under the dining room table found several bills addressed to them.  How can she claim that she did a good job of cleaning the house when I have proof she didn't even put her own garbage in the trash?  That certainly sounds more like what Brian and I say, that she simply added to the existing clutter and although she may have done a few chores in the 2 1/2 months she lived here rent-free, the net result was more mess, not less. 

 

Two New CFS Research Breakthroughs!

Research: Chronic Fatigue Syndrome is a Legitimate Medical Condition

Researchers at Georgetown University Medical Center have found that Chronic Fatigue Syndrome (CFS) may be rooted in distinct neurological
abnormalities that can be medically tested.

http://www.up0.net/ct.html?rtr=on&s=d7m,1h92,6k,dek3,a8gk,7xo1,2hxa

Study of Cerebrospinal Fluid in CFS, Fibromyalgia, and Gulf War Illness Patients

Chronic Fatigue Syndrome (CFS), Persian Gulf War Illness (PGI), and fibromyalgia are overlapping symptom complexes without objective markers or known
pathophysiology. Neurological dysfunction is common. Researchers assessed cerebrospinal fluid to find proteins that were differentially expressed in
this CFS-spectrum of illnesses compared to control subjects.

http://www.up0.net/ct.html?rtr=on&s=d7m,1h92,6k,dupn,k8oy,7xo1,2hxa