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the potential of DecodeME #6 …

decodeME are doing a series of information posts in the lead up to the start of the DecodeME study. They are encouraging us to share them as much as we can.

Therefore, I will share them each time they are posted …. exactly as they are originally written by,

DecodeMe …

 fragmented.ME xXx

Blog article to follow is Copyright © DecodeME (2021).
Updated March 2022. From 

Professor Chris Ponting compares his experiences working on the Human Genome Project and DecodeME

We asked our Chief Investigator on the DecodeME study, Chris, to compare his experiences working on both the Human Genome Project and DecodeME:

Two projects, twenty years apart. The first sequenced the human genome; the second explores the DNA of people with ME. Two very different projects, you’d think, in scale, impact and cost. I played a part in both, and I’m struck not by their differences but by how similar they are.

For a start, among us there is an overwhelming feeling of sharing a common goal. Usually, science is rife with petty feuds and entrenched opinion. The Human Genome Project sat outside of the norm because – as all who helped knew then – it was science for the general good, not science for scientists. Like a stick of rock, DecodeME has this ethos written right through.

Secondly, twenty years ago we recognised that we knew next-to-nothing about the human genome. Just as today we know virtually nothing about why some people become ill with ME after viral infection, for example, whilst others recover fully.  We understood then, as we know now, how far we still have to go to transform raw DNA data into effective therapy.

Thirdly, both projects feel like a “no-brainer”. Of course, each had their critics, but for the Human Genome Project at least, naysayers soon saw its value to their own science. We wait to see how the broad value of DecodeME to ME science generally is received, but we anticipate and hope that its value is similarly welcomed.

Lastly, for both projects we had little understanding of how difficult it would be, how many unexpected obstacles would lie in our path, how many heights would need to be scaled. But for the human genome, we got there – not immediately I admit, because it took many more years to define human DNA completely – but we got there, just as we will reach our goals in DecodeME.

The human genome catalysed new science and new ideas. We hope and expect the same will be true for DecodeME.

First, we need to find 20,000 people to take part. If you would like to be one of them, please sign up and you can be first in line when we start recruiting in the autumn.

… Sign Up Here …

 © decodeME

My birth name is Denise, but I’m know as Bella to those who love me. I have a first class honours degree in education & psychology and a strong passion to keep learning and educating others ... I have severe ME/CFS and lots of other chronic illnesses and I started this blog as an expansion to my instagram page, where I advocate for chronic illness. I am married and have two grown up boys, or should I say young men. I have three gorgeous grandchildren, one boy and two girls. And despite being chronically sick and housebound I am mostly happy. 🥰