Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome (ME/CFS) is a disease with patients ranging from mildly-afflicted to very-severely ill.  Many patients will have a relapsing and remitting pattern where they pass through levels of severity.


It makes sense to look at how the most severe differ from the moderately ill, on the cellular and genetic level. That’s the thinking behind the Severe Patient Big Data Study, which has been documenting the health of 20 extremely ill ME/CFS patients.

The early results have been fascinating. When Metabolomic testing is done 1/3 of metabolites are greater than two standard deviations below normal. These patients show significantly more metabolomic abnormalities than the moder

ately ill ME/CFS patients.  But what is also very interesting is that the study results are starting to challenge some key assumptions that many in the patient community hold dear:

  1. Viruses are NOT keeping people sick: The severe patient data shows the opposite: there is no evidence of viral activity in the severely ill. Instead there is less viral activity. Researchers believe patient immune systems may be so activated they repel pathogens.
  2. Toxins and metals aren’t suspect. While metal contamination can produce similar symptoms on the body, there’s no evidence of heavy metal contamination among the severely ill studied.
  3. Patients have normal Mitochondria Levels – mitochondria – the cells that produce energy – their numbers (if not their function) are fine.
  4. Inflammation – chicken or egg? Evidence of inflammation is present but the study suggests inflammation may or may not be having positive effects.

Autism and ME/CFS connection – could it be in the genes?

The genomic studies have identified a gene new to ME/CFS research which has been found in the severely ill patients. Dr. Brian Piening will be looking closely at several suspect genes that are expressed mainly in the brain. In the case of the genetic variant common to all patients inthe ME/CFS severely ill study, one gene has been connected to autism but the specific gene has not be named yet.

The severely ill study may point to new areas of genetics to study, but currently the more dramatic findings relate to cellular metabolism.

Consider donating to the OMF ME/CFS Severely Ill Big Data Study

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