10/08/2025
‘Understanding how energy works or doesn’t work in the Neuroverse’
When I was 14 I got glandular fever also known, Mono, Epstein-Bar virus or the kissing disease (age appropriate I know 😂). However, instead of a few weeks of bed rest, this turned into a mammoth battle to try and regain my energy! EB is a major precursor to getting ME or Chronic Fatigue Syndrome (CFS). I literally couldn’t get out of bed for 6 months. In desperation my mom took me to a friend who headed up paediatrics at the Red Cross hospital. But at this stage, early 1980s, ME was on the rise, especially amongst young girls, but no one understood it. In my research I have come to understand that it is a typical comorbid condition in neurodiverse children, who often struggle daily with energy management. Anything from the franetic ADHD all the way to the debilitating ME or CFS. What I also learnt is that if you can somehow get it under control within 6 months you are likely to overcome it, however if not, you will live with this disease for the rest of your life! My Mom was an avid reader of the Classifieds in the newspaper. One day she read about some concoction that was full of vitamins, minerals, protein and ginseng (some strange Chinese herb that helps to restore energy 🤔). I was force fed this concoction daily and sent to bed. After the initial time in bed, I slowly tried to go back to school and play squash, but then the ME would hit, and this is the strange part, I’d feel great, full of energy and ready to take on the world, and then suddenly the energy would just disappear and I would crash! The one time my mom had to carry me off the squash court as I collapsed and couldn’t get up! She once again put me in bed and told me to STAY! She would bring me two videos everyday to watch, mostly National Geographic and I would watch one in the morning and then sleep, one in the afternoon and then sleep, I’d eat dinner with my family, watch some TV and then drag myself to bed (sometimes I could even manage this). I later watched an incredible movie called ‘Unrest’ created by Harvard Ph.D. student Jennifer Brea about her experience of ME (find it on Netflix). She notes in the movie how your body is unable to store energy, so once your kinetic energy is gone, you are done, as you have no ability to store potential energy in your body. I relapsed with CFS episodes till I was 20, usually between 2 and 4 weeks of bed rest at a time. This research is so important as Long Covid appears to be having the same impact as Epstein-Bar. As for me, well thank heavens for my warrior Mom who fought for my energy as much as she did for my intelligence, love you Mom 💜
Dr Dee
🩷❤️🧡💛💚🩵💙💜
Chronic fatigue syndrome also known as myalgic encephalomyelitis (ME/CFS) is not “just in your head.” A landmark genetic study has uncovered compelling biological evidence that the illness has deep roots in our DNA. Researchers identified eight regions of the human genome that differ significantly between people with and without ME/CFS, with many of these areas tied to immune system function and nervous system signaling.
The DecodeME project, led by the University of Edinburgh alongside patient groups and charities, analyzed genetic data from more than 15,000 ME/CFS patients and over 250,000 healthy controls. The findings suggest certain genetic variants may increase susceptibility by weakening infection-fighting abilities or altering chronic pain pathways. For millions of people living with debilitating fatigue, brain fog, and post-exertional malaise, these results offer long-awaited validation and a new direction for scientific research.
While there’s still no cure or definitive diagnostic test, this is a turning point in how ME/CFS is understood and treated. The results could lay the groundwork for genetic screening, targeted therapies, and deeper studies into why the condition disproportionately affects women and how it differs from illnesses like long Covid. Above all, it’s a powerful step toward ending the stigma and ensuring ME/CFS is recognized as a serious, biologically driven disease. Source: DecodeME Consortium (2025). Genetic associations with myalgic encephalomyelitis/chronic fatigue syndrome.
