Big research news for people living with ME (sometimes known as ME/CFS or Chronic Fatigue Syndrome)

Initial results from the DecodeME study report genetic differences in people with ME/CFS

It’s been quite a dramatic few weeks for people living with ME (also known as ME/CFS, or Chronic Fatigue Syndrome, but I always use the term ME).

Firstly, the saga of the government’s plans for welfare reform and the disproportionate impact these changes to Universal Credit and PIP would have on people with ‘invisible’/misunderstood illnesses. This will continue to rumble on for many more months and leaves many people very uncertain and worried about the future.

Secondly, the government’s long-awaited Final Delivery Plan which was supposed to lay out the foundations for research, diagnosis and treatment as well as awareness-raising to reduce the stigma that people with ME face. With no funding allocated, the Delivery Plan explains that patient ‘care’ will be moved to neighbourhood ‘hubs’ rather than the much-needed consultant-led care, with little/no thought given to how to manage those with severe illness. The training and awareness-raising turns out to be a simple short e-learning course which medical professionals could do if they want to, and there isn’t even a commitment to ensure that services comply with the 2021 ME/CFS NICE Guidelines (which many existing ‘specialist’ services still don’t). The plan really hasn’t lived up to hopes and expectations; I would argue that’s it’s even a step backwards rather than forwards.

But finally we have the initial research results from DecodeME, the massive genetic study. There is further work to do, but their initial results show clear genetic differences between people with ME and matched controls. These genetic differences correlate to the symptoms that people report – pain, cognitive dysfunction, ongoing post-infectious illness. And the results of this research highlight the involvement of the immune system and the nervous system, meaning that ME is about immunology and neurology. There’s also no correlation with the genetics behind depression, which really should put the GET/CBT brigade back in their boxes and clear the field for real science. It’s a big, emotional moment for all people with ME, validating their experience and proving once and for all that ME is a very physical illness and not a psychological one. Now researchers need to take all this forward and find ways to diagnose and treat ME so that people get their lives back. But this will take some time…

Until then, Chinese medicine offers a way to manage symptoms and improve quality of life. I'll write more about that in a separate post.