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Myalgic Encephalomyelitis vs CFS

Dr. Hyde stated that he did not think ME and CFS were the same thing and the names should not be used interchangeably. He noted that he did not agree with the effort in the U.S. to combine them.

He also made a distinction between the gradual onset of ME and the sudden onset of ME. Dr. Hyde felt that patients with a gradual onset were easier to treat, as there usually was an identifiable cause and treatment.

In contrast, those with a sudden onset were much more complicated and showed the encephalopathy in the brain. He concentrated his talk on sudden onset of ME.

Dr. Hyde’s definition of ME

Take the term apart and it means: My: muscle; Encephalo: brain; Myel: spinal cord; itis: inflammation. ME is a measurable, diffuse, patchy, chronic patho-physiological brain injury. He defined ME as:

  • A previously well individual who has developed a new incapacitating, chronic cognitive, intellectual and physical illness.
  • Characterized by rapid onset and persevering cognitive and physical exhaustion following normal physical, intellectual, sensory, or emotional exposure or stressors.
  • Patients are frequently women, healthcare workers, teachers and students.

He stated that classical ME cannot be seen on an X-ray, but can be caught on a SPECT scan. Dr. Hyde explained that when sent for the scan, the patient should be exhausted and at their worst so the test will see the brain at its worst.

In contrast, the MRI is an anatomical map of the body while the SPECT scan is functional (meaning how the brain is actually working). This diffuse injury destabilizes the central nervous system control of many body functions.

There were slides presented from Dr. Hyde’s medical text book, authored in 1992, The Clinical and Scientific Basis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. The scans done by Xenon SPECT (the Xenon machine is no longer made) of a 37-year old female ME patient showed abnormal resting SPECT; post-exercise SPECT that still shows abnormal findings; and a 24-hour post-exercise SPECT also showing abnormality even though the patient had not exercised since the initial time. So the brain continued to show a break-down of functioning.

These findings were demonstrated by Drs. Jay Goldstein and Ismael Mena at UCLA in 1989. Dr. Hyde found it unbelievable that even today the SPECT test is not widely used.

Dr. Hyde made clear that the SPECT scan showed exactly what an acute onset of ME in the brain looks like if caused by encephalomyopathy. What was so interesting was how he explained how most patients would perceive the situation―they may think they just have a headache with no idea they have an encephalopathy. Only a SPECT scan or spinal tap would show it at the time of onset.

A slide of a 10-year old child’s ME brain showed marked (50%) decreased blood perfusion in the right frontal and right posterior parietal and occipital lobe. (Slide courtesy of Drs. Michael Goldberg & Ismael Mena of California.)

Dr. Hyde presented another slide — this time of a basal ganglia in the brain. A second slide, taken two years later, showed the left side of the basal ganglia just starting to return.

After following patients for decades, Dr. Hyde noticed a correlation between male patients that had ME for almost 25 years and the increase of Parkinson’s disease. Although he does not know what the connection is yet, he thinks there has to be a relationship between ME and Parkinson’s disease.