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Do genetics really cause ME/CFS?

Updated: Aug 17

Earlier this month, the initial results from the “DecodeME, the ME/CFS study” involving over 15,000 people with ME/CFS were released.


Predictably, the headlines in the newspapers varied enormously. But what does the research really say?


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As with much in health and nutrition research, the devil's is in the detail. Here's my take on the findings.


The initial results from the “DecodeME, the ME/CFS study” identified:


  • Eight genetic signals that are much more common in people with ME/CFS than the general population

  • These signals are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease

  • Interestingly, nothing was found to explain why the condition is more prevalent in females than males - 84% of the samples were female


In my experience of working with clients with ME/CFS over the last 5 years, as well as my own experience of it, the immune and nervous systems play a huge role.


What has NOT been made clear in the information I’ve reviewed so far is:

  • Genetic SNPs (single nucleotide polymorphisms) have been analysed, these are VARIATIONS in genes, not MUTATIONS

  • Genetic mutations result in faulty genes which cause genetic disorders such as Cystic Fibrosis or Sickle Cell Anaemia

  • Genetic SNPs/Variations therefore show a predisposition or risk of ME/CFS, but have to be expressed or “switched on” - this is called Epigenetics


Epigenetics is the study of how our genes are expressed - or turned off and on - by our environment and behaviour, including diet and lifestyles. In other words

“Genetics load the gun, environment pulls the trigger” (source debated)



What's not clear in the coverage of the research?


During my nutritional therapy training, we were taught to read research papers properly and to critique every aspect of them thoroughly including type, size, participants, findings and conflicts of interest to ascertain how viable or strong  the stated findings were.


One concern I have about the study and the coverage of it in the media is the use of the word “cause” and very little mention of “correlation”. 


We were also taught the difference between correlation and causation:

  • Correlation means there is a statistical association between variables - in this case, genetic variations and people with ME/CFS

  • Causation means that a change in one variable causes a change in another variable, in this example, genetics cause ME/CFS


However, The DecodeME preprint also notes:

  • “As these differences are also often found in people without ME/CFS they cannot cleanly separate who is at risk and who is not, and therefore do not provide a definitive test.”


This shows that these genetic variations don’t cause ME/CFS, but are associated with the condition. If they caused ME/CFS, then everyone with the variations would develop the condition which as the study itself points out, is not the case.


What needs to be considered is what switches these genes on - you guessed it, diet, lifestyle, behaviour and environment. These are entirely modifiable, we have the power to change them.


And why does ME/CFS & Long Covid affect women more than men? In my opinion, this is related to our complex hormones and their fluctuations. Thyroid conditions are also more prevalent in women, and a key driver of both conditions is how women biologically handle stress hormones.


I hope you've found this blog informative, any questions or feedback, drop me a line.


NOTE: I’m not a geneticist, but I have undertaken advanced practitioner training in Nutrigenomics with UK-based LifecodeGX. As part of this training I also undertook many tests for myself, and now offer Nutrigenomics testing to clients.


Links to the DecodeME Study resources:


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The content on this webpage is not intended to constitute or be a substitute for professional medical advice, diagnosis, or treatment.









 
 
 

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