Tuesday, September 2, 2014

Where Fibromyalgia and Chronic Fatigue Syndrome Part Ways

 
Both Dr. Natelson and the Lights, however, have found differences in ME/CFS + FM vs ME/CFS patients alone, and Natelson argues that they're quite different disorders.

Now a recent study demonstrates an important way that this is so.

Reduced levels of BDNF – described as a nerve repair agent – were recently found in Chronic Fatigue Syndrome and multiple sclerosis. The levels found – less 25% of normal – were stunningly low, and this suggested that neuron functioning was taking a real hit in both these disorders. Given the nerve damage found in MS, that result was expected for MS – but not in ME/CFS.

A recent Fibromyalgia BDNF study seems to portray a very different disorder.
 
... With regards to BDNF, ME/CFS looks more like multiple sclerosis than it does Fibromyalgia.
 
* * *
Some years ago, I realized that if I say I have CFS, people assume I'm just tired, no other symptoms, but if I said Chronic Fatigue and Immune Dysfunction Syndrome, they'd hear the IDS part of it and assume, like AIDS, I was contagious, and stay far, far away so they wouldn't catch it just from talking to me or hugging me. 
 
So I started saying "I have something similar to MS" -- they can get their heads around that and it sounds like something seriously disabling, since most people have at least some concept of what MS is. The perception changed from lazy, or contagious, to "are you going to end up in a wheelchair? will it kill you?"
 
The problem with CFS vs. fibro is that most doctors don't know how to diagnose them properly.  After I'd gotten into a sleeping pill clinical trial, a specialist changed my diagnosis from CFS to fibro.  I asked why, and (like so many others) he admitted that "if the primary symptom is fatigue, it's CFS, but if the primary symptom is pain, it's fibro" -- since the sleeping pill was doing its job, I was no longer completely exhausted from sleeping only 2 hours a night, and therefore, even though I still had fatigue after doing some chores, and certainly could not work an 8 hour day, he felt I was no longer tired enough to have CFS, and therefore had had a miraculous cure and now only had fibro.  In a classic case of the patient knowing more than the doctor, I asked some pointed questions, and he insisted that I no longer had CFS because now I was complaining more of the pain, which meant fibro.
 
He hadn't done any blood tests, brain scans, fMRIs; the change in diagnosis was entirely based on my no longer waking up tired because I was getting 8 hours of sleep instead of 2.
 
Maybe he should have done the tests listed in this article to figure out what I really have. 

Monday, September 1, 2014

Near DC? Want to participate in research?

Georgetown in DC needs civilians with ‪#‎CFS‬ to get in study...they need 72 participants.......Exercise and Brain Scan

The Chronic Complex Diseases Study Purpose: to understand Chronic Fatigue Syndrome (CFS) Who: Adults (over 18 years old) with and without CFS are invited to participate. What: Subjects will have magnetic resonance imaging (MRI) brain scans then bicycle exercise tests. They will stay overnight, then have a 2nd exercise test and MRI the next day. Where: Clinical Research Unit, Georgetown University, Washington D.C. Compensation for time and travel will be paid. Contacts: Telephone 202-687-8231, FAX 202-687-9886 E-mail:cfsresearch@georgetown.edu or baraniuklab@gmail.com