Decoding ME

Making the invisible visible

Photo by Haydon on Unsplash

This morning I read the news that a new study has discovered that your genes contribute to your chances of developing ME/CFS - this is HUGE news for the community, it means that rather than blame themselves, feel like a fraud or continually be disbelieved by the medical profession, there is real evidence out there from testing the DNA in thousands of people with the condition that it is linked to genetic patterns.

I am not an expert, and brain fog means I cannot fully explain this information in my own words, therefore I have summarised the research findings using information from the DecodeME website, but I would urge you to have a proper look yourself for a clearer understanding.

DecodeME undertook this study, led by Prof Chris Ponting of the Medical Research Council Human Genetics Unit of Edinburgh University. You can read the full pre print of the findings here. DecodeME looked at the DNA of 15,579 people with an ME/CFS diagnosis who met the study’s tight research criteria and compared it with the DNA of nearly 260,000 controls without ME/CFS. All had European ancestry, which makes the results more robust. A later analysis will look at people of all ancestries.

The key findings can be summarised like this:

Your genes contribute to your chances of developing ME/CFS.

• People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population. These lie in many places across the genome, and do not impact just one gene.

• Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS.

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

• At least two of the signals relate to the body’s response to infection. Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS. These signals align with how people with ME/CFS describe their illness.

So, huge news and very validating for all of us with the condition and potentially life changing as a search for a cure continues. We no longer have to live with the fear of medical gaslighting, telling us it is all in our head (it isn’t!), or saying we are just depressed (they found no link with depression), and it also validates the chronic pain we experience on a daily basis. We have evidence that it is genetics, it is neurological and immunological and there is nothing we could have done differently to prevent ourselves from becoming ill. HUGE!!

There is a lot more research needed of course, this paper is yet to be peer reviewed, but it is a gateway to more research and it brings ME out into the open so that more people can begin to understand and talk about how this condition impacts the lives of those who are suffering with it.

I wrote this poem the other day, and it seems pertinent now, perhaps this news will help us become more visible to the medical community, to be understood by our friends and family, and no longer feel the shame of an illness that buries us in fatigue and keeps us hidden from the world…

Invisibles

I am not alone
There are millions of people 
Just like me
I see some of them
Square-boxed friends I've never met
All of us incapacitated 
By the same monster
Each of us in a different 
Post exertional state
As my eyes close
Another one regains the ability to run
While another collapses on the bed
We are the same
Yet different 
Each of us desperate 
To be seen
We are the invisible ones
The "you look well" ones
While dying inside
Making the effort ones
Pushing too hard ones
Crying as we once again 
Succumb to the pain
And the exhaustion 
Washes us away
Down the drain
Burying us with chronic fatigue
Invisibles 
I see them 
I am them
I am not alone

Please read the study results, it really is fascinating research!!

Until next time

Lisa x

(p.s - Don’t forget that I am running my first Poetry and Tea online poetry event on 23rd September for pwME and chronic illness, see below for details)