DecodeME in the media

Kickstarting the field that should have been studied
Been held back due to bias
Strongly female
Research should be done as fast as possible
Such a common disease, hugely stigmatised, hugely misunderstood
Important thing is not opinion it’s evidence
Thee is evidence
There is a genetic contribution as to why people get this

That’s my live transcription (not a skill I possess)
 
Just posted on the DecodeME blog: "Initial DecodeME DNA Results"

Copying the first section, more at the link:


Main findings from our analysis

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.
 
One of them, called RABGAP1L, produces a protein that helps fight off some viruses and bacteria – and DecodeME’s analysis showed that having ME/CFS is associated with having less of this protective protein.

Another gene on the plot, SUDS3,produces a protein that dampens down the inflammatory response of the brain’s main immune cells, called microglia. So people with ME/CFS could have a weaker microglial inflammatory response in the brain.

A third example from the plot is a gene called CA10, which has been strongly linked with chronic pain – a major feature of ME/CFS.
Click to expand...
From the link @Fainbrog shared.
 
Fainbrog said:
www.decodeme.org.uk

X marks the spot where ME/CFS biology can be discovered - DecodeME

06 August 2025 Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world’s biggest ME/CFS study – and its results are striking. 18,000 people with ME/CFS gave their DNA, enabling DecodeME to reveal eightgenetic signals for the illness. These signals indicate...
www.decodeme.org.uk www.decodeme.org.uk
Click to expand...
DecodeME also looked at genetic signals associated with depression and anxiety that were near the genetic signals found for ME/CFS, and found that neither involved the same causal variants as ME/CFS.

So, DecodeME showed that immunological and neurological processes are likely to play a part in ME/CFS. They also found a link to chronic pain, but not to anxiety or depression.
Click to expand...
 
Nightsong said:
New Scientist:

www.newscientist.com

Key genetic differences found in people with chronic fatigue syndrome

People with chronic fatigue syndrome, also known as myalgic encephalomyelitis, appear to have eight genetic signals that differ from those without the condition
www.newscientist.com www.newscientist.com

The Telegraph:

www.telegraph.co.uk

ME is a real illness, genetic study shows

Breakthrough provides ‘credibility and validity’ for sufferers of the disease known as chronic fatigue syndrome
www.telegraph.co.uk www.telegraph.co.uk
Click to expand...
Middle of the telegraph article suggests CBT…. I swear it’s never ending…
 
The UK MEA says on its Facebook page:

Decode ME: X marks the spot where ME/CFS biology can be discovered

Dr Charles Shepherd, Honorary Medical Adviser says:

"This is a very important day for people with ME/CFS.

These results, from the largest ever research study to look at the genetics of ME/CFS, are a significant breakthrough/development in our understanding as to why some people are more likely to develop ME/CFS after a viral infection.

They also provide some important clues about what causes ME/CFS, that it is not linked to anxiety or depression, and that drugs which affect the nervous and immune systems may be useful forms of treatment for the underlying disease process - rather than just treating symptoms."

www.decodeme.org.uk

X marks the spot where ME/CFS biology can be discovered - DecodeME

06 August 2025 Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world’s biggest ME/CFS study – and its results are striking. 18,000 people with ME/CFS gave their DNA, enabling DecodeME to reveal eightgenetic signals for the illness. These signals indicate...
www.decodeme.org.uk www.decodeme.org.uk
Click to expand...
 
“More importantly however no-one really knows what is wrong with the patients. Diagnosis was done by questionnaire and this has a significant error rate. The National Institute of Health in the US has suggested diagnostic error rates of around one third. Whilst much is made of patients having post exertional malaise it should be remembered that this does not have a definition, and it is found across multiple disorders not just ME. Finally, there were significant co-morbidities within the sample with disorders known to have a genetic contribution like depression, chronic pain and irritable bowel syndrome.
Click to expand...
Carson in SMC.

Funny how he highlights depression when there were no hits on genes related to depression!
 
The Independent:
www.independent.co.uk

The key genetic difference ME sufferers have from others – and what it means

Scientists said the findings offer the first robust evidence that genes contribute to a person’s chance of developing the disease
www.independent.co.uk www.independent.co.uk

The Times:
www.thetimes.com

Breakthrough genetic study offers treatment hope for ME patients

Experts say ‘groundbreaking’ findings will be transformative as well as helping to end myth that the condition is ‘all in the mind’
www.thetimes.com www.thetimes.com

(Alt links for the Times piece: Archive.ph, PrintFriendly)
 
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