Back in October 2023 I wrote a post about the Decode ME Study. It surveyed people with a diagnosis of M.E./CFS and then from there individuals like myself were selected and asked to donate a DNA sample to contribute to the overall study.
The aim was to see if M.E. had any genetic links which, with further studies and research could find more effective ways to understand, diagnose and treat M.E. in a more scientific and medicalised way. Currently M.E. is diagnosed based on the symptoms reported meaning other conditions could be missed or a person may be misdiagnosed. Also because of the distinct lack of funding into research in M.E. (The Decode M.E. Study is the biggest of it’s kind), M.E. is poorly understood in terms of how it affects individuals and why we experience the symptoms that we do. This means there is no clear way on how to treat M.E. and clinicians especially those who don’t specialise in treating M.E. like GP’s have no clear way on how best to care for a patient with M.E. Plus with symptoms currently only being self-reported it’s difficult for GP’s when it comes to issues such as prescribing medications. GP’s are also most likely to be the primary doctor for a person with M.E. as getting into specialist M.E. services can be difficult.
Well, the Decode M.E. results are in and the main findings really surprised me but also gave me hope and also me me feel heard and believed. I wanted to take them running to my GP and other doctors and a say ‘see its real I’m not making it up’ especially to try and stay on some of my medications that help me manage the severity of my symptoms.
The results of Decode M.E.
So firstly which surprised me the most my genes contribute to my chances of developing M.E.! - So like the the infection (we’ll come to that part) - for many people like myself an infection triggered their M.E. - this then turned on that genetic switch inside me and caused me to develop M.E. (That’s how I picture genetic contributions).
Those with a diagnoses of M.E. have significant differences in their DNA compared to the general population.
Eight genetic signals have been identified. As our DNA doesn’t change the onset of a person’s M.E. reflect causes rather than effect of M.E.
The signals discovered are involved in the immune and nervous systems indicating immunological and neurological causes. - For me my M.E.has always presented as neuro-immune with its symptoms like how my immune system falls apart when I’m exhausted along with wide ranging multi systemic symptoms as well.
At least two of the signals found relate to the body’s response to fight off infection. - Like I mentioned above M.E. for many is caused by an infection, often viral. For me it was the flu which lead to a bad chest infection. I also find that I find it harder to recover from illnesses. During the pandemic I was so scared because of this too.
Other signals found point towards the nervous system. One of which researchers previously had found that in people experiencing chronic pain which reinforces neurological contributions to M.E. - For me this validates my pain. When doctors don’t understand why I’m in pain and want to reduce my medication I want to wave this at them and say ‘My M.E. is genetic and it has signals to my nervous system which is why my whole body is in pain and I feel different types of pain. See it’s real it’s not all in my head! Please don’t leave me in pain!’
The signals found align with how people with M.E described their illness.
Source: Action for M.E - For more on the results of Decode ME click here to go to the study’s website.
