The problem with the spec scan results is there may be other conditions with the same profile.I'm only guessing here but the general impression I get is that the spec scan may show
I would want to know that I have low bloodflow to the brain independent of any possible cause.
Statistically, if 90% of CFS patients have this attribute, and only 5% of the non CFS population has the same low bloodflow that is still very suggestive.
I'm quite okay with accumulating evidence that is probabilistic, and which supports a diagnosis instead of proving it.
99.9% of all doctors are useless, and the medical system is hopelessly broken. Doctors wouldn't do anything to help a patient even if they could prove the disease existed.
As one example of this, if you develop tinnitus there are very good studies now that show it is associated with cortical volume loss (death of neurons ,.and the brain shrinks in the cortex). Now how do doctors use that valuable information? Audiologists refuse to look at your MRI at all because it is a radiologists job. Neurologists view tinnitus as too narrow and specialized and ignore it entirely. So no one looks at your MRI through the right lens at all.
I think someone with that condition should have a medical professional looking for cortical volume loss and informing the patient if they find it, and educating the patient about the probable (*not* causative!) relationship. Yet no one in the medical system does this, because no one in the medical system feels responsible to the entire patient and his overall condition. The system is lost to specialists making narrow diagnoses and pharmaceutical companies selling drugs. It is disgusting
Ninety percent seems high when you consider the heterogeneity of the me/cfs population. Do you have any citations?
Right, that is what makes it so exciting.
From this article:
http://www.cfstreatmentguide.com/blog/the-elephant-in-the-room-brain-studies-politics-and-mecfs
"Studies in the 1990s by Mena, Goldstein, Richardson, and Costa showed brainstem hypoperfusion (low blood flow) in a high percentage of CFS/ME patients."
"In 1998 the late John Richardson conducted SPECT scans on some of his patients suffering from ME. The scans showed hypoperfusion in 90% of the patients in several areas. These included the brainstem (62%), the caudate nuclei in the basal ganglia (51%), temporal lobes (62%), parietal lobes (31%), and frontal lobes (23%).
I wonder if they are used in conjunction with other symptoms for diagnostic purposes?
Interesting.
One doctor in 100 even tries to diagnose CFS, and those who do are using much much more shallow criteria than a SPECT scan.
My current best theory about CFS and its causes is that it is about failure of the aerobic energy system. There are multiple possible causes for that, but regardless of how it happens once it does you get an extended period of hypoxia. This challenges the brain - which is an extremely energy intensive organ - and you get death of neurons from the extended period of hypoxia. The cortical volume losses in turn result in all kinds of collateral damage which affects the ability of the brain to work normally.
In my own case, I proved the failure of aerobic metabolism by taking an exercise physiology test named VO2Max with CO2 testing, and I was able to chart my result against a population study of 200 people and I was the single worst result in the 200 person population. The failure to produce energy aerobically explains completely:
* the post exercise malaise, since this puts additional energy requirements on the body which is unable to satisfy these needs aerobically and therefore goes into glycolysis
* the brain fog, since the brain is unable to function in a hypoxic environment.
* the longer term damage to the brain and symptoms like tinnitus, from the brain damage induced by extended periods of hypoxia
What makes this disease insidious is that even if you can fix the aerobic metabolism problem, you then have to contend with the brain damage, and regenerating neurons is problematic and - at best - a multi-year undertaking.
