Medical Matters > DecodeME results – Quick answers to four common questions

ME Essential Winter 2025

Question

a) Have the researchers found a specific gene for ME?

b) Do the genetic markers that have been found cause ME?

c) Are people with ME born with these genetic markers?

d) Do these results mean that we can now find a drug treatment for the underlying disease process in ME/CFS – instead of just managing symptoms?

Answer

a) No! ME/CFS is a complex condition. So the Decode research team did not expect to find that just one gene is responsible. As with many other conditions with a genetic component, ME/CFS is influenced by small differences in several genes rather than in one gene only. In DecodeME, the researchers looked at over 8 million points across the whole human genome and found 8 regions where people with ME/ CFS are more likely to have certain genetic differences. The accurate identification of these regions also provides important clues about the biological processes that may be involved in causing ME/CFS.

b) No! The genetic differences that have been identified don’t directly cause ME/CFS on their own. However, these genetic differences do increase the likelihood of someone developing ME/CFS in the way that certain genes are linked to conditions such as diabetes or Parkinson’s. They are an important piece of the puzzle, but not the whole picture. So having one or more of these genetic differences does not by itself determine whether someone will get ME/CFS. There are several other contributing causes of ME/CFS, infections in particular. However, these findings provide researchers with clear pointers towards more specific biological pathways involved in the development of the condition.

c) Yes! Your genetic code is something that you were born with, and it stays the same throughout the course of your lives. So the genetic differences that have been found were present from birth in those who have them. This doesn’t mean that someone with these differences is predestined to develop ME/CFS. However, this is a factor in deciding whether or not the condition is developed during their lifetime

d) The main purpose of the DecodeME research was to gain a better understanding of the biological roots of ME/CFS and how genetics could contribute to developing the condition. By identifying genes linked to the immune system and the nervous system, the study opens the door for scientists to explore what’s going wrong in ME/ CFS at a molecular level. This deeper understanding could, in time, lead to drug treatments that target the root causes of the illness. These genetic findings don’t however currently point to any specific drugs that are likely to be effective.

See Also: Research: DecodeME

MEDICAL DISCLAIMER

We recommend that the medical information is discussed with your doctor. It is not intended to be a substitute for personalised medical advice or treatment. You should consult your doctor whenever a new symptom arises, or an existing symptom worsens. It is important to obtain medical advice that considers other causes and possible treatments. Do not assume that new or worsened symptoms are solely because of ME/CFS or Long Covid.

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