DecodeME in the media

Hutan

Moderator
Staff member
This thread is for media and social media items about DecodeME following the release of the results, and for discussion about the media items.

For the analysis of the DecodeME results, there will be a research thread for the paper which we will link here.

(Note - the paper isn't out yet)
 
@Andy im pretty close with several reporters in the U.S. who have covered ME & LC over the years. If these connections can help with any media coverage of this (if results dictate) just let me know and I can reach out to any to gauge interest
Should they want to reach out to the University of Edinburgh then our contact in the UoE PR team is Jess Conway, jess.conway@ed.ac.uk, and she can coordinate such things as interview requests.
 
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.
 
New Scientist:


The Telegraph:

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."

 
“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.
Carson in SMC.

Funny how he highlights depression when there were no hits on genes related to depression!
 
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