ME/CFS research

Myalgic Encephalomyelitis

Explain what I know and what I have seen. Not one ME/CFS sufferer I have met was a lazy person before they began suffering. They are all type A, very busy people who overworked themselves.

Harvard X showed there are multiple kinds of mitochondria, so it’s possible that some of them stopped working properly.

Graded exercise made my sister worse. She only knew how to push herself hard. She wasn’t someone who knew how to give up. She was treated as a psychiatric patient, not as a physical illness. Her financial support was removed.

Is ME a Real Disease?

Related content

• Mitochondrial Ageing

References

• ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) Thorough video . The channel is by an ME sufferer and has many related videos
• What happens when you have a disease doctors can’t diagnose | Jennifer Brea
• The 5 Main Causes of Chronic Fatigue Syndrome (CFS/MECFS) Very good analysis for a doctor
• Scientists Find Links to Chronic Fatigue Syndrome in Genes and in the Gut Microbiome
• Broken Battery
  • Former Team GB Rower Oona Cousins Responds to the COVID Inquiry on Sky News GB rower gets long Covid which sounds like me. It’s PEM post-exertional malaise, and another high achiever is getting it. Symptoms clearly explain sound, just like mitochondria breaking down system-wide. It could be due to infection, particularly while vulnerable from overtraining. 
• Westminster Hall Debate on Support for People with ME/CFS – November 2025
  • ME/CFS petition in the government. Does it cover damage to mitochondria?350,000 people have me type symptoms. 
  • I am hearing the same story time and again. Post-exertion malaise points to metabolic issues, likely mitochondrial. All sufferers sound like hard workers, likely workaholics. The NHS has the same approach across the board. 
  •  4m with long covid that seems to have similar symptoms. 
• My sister developed ME/CFS and before that was diagnosed with nervous exhaustion in Austria during an interrailing trip. She had spent the last 3 years working tirelessly on her degree to earn a first-class honours degree. It is just as likely that, due to this extreme effort, the mitochondria supplying her nerves with energy were tired and overworked. They may have got infected or just damaged and never recovered. This would cause the symptoms she had and the disease
• Your Brain Is Creating Your Symptoms, and It Can Stop | Dr Howard Schubiner, MD A fascinating talk exploring another side to understanding how CFS and similar conditions may develop. It raises many questions in my head
  • Listening to this reminds me of our lack of understanding of neurological conditions. e.g. how nerves work under pressure
  • My sister and mother both had nervous breakdowns yet I have not seen an explanation of what happens physiologically when nerves tire and break down under pressure.
  • I wonder what tools doctors can use to determine if someone’s nerves are tired or functioning incorrectly
• Stop Exercising Like This If You Have Chronic Fatigue Syndrome: another CFS teacher emphasising healing and being gentle. I’m finding new resources for cfs that focus on gentle healing. I want to talk about how to prevent CFS in the first place and highlight that these teachers all confirm that CFS affects high-performing people. They make their problem worse by pushing too hard. They burn out, and CFS is part of that.
• Why Smart, Driven People Can’t Recover From Long Covid | Shaan Kassam Excellent interview from two former sufferers with Shaan explaining his approach to healing that is, he says, working incredibly well for those who try it. The idea is not just to recover and heal but to move on and learn to live the life that you want to live
• The Tinnitus Recovery Conversation No One Is Having | Dr. Marcia Dewey An exploration of tinnitus and how it may be a symptom of CFS. My initial thought is that this can reflect the nervous systems role of filtering out nervous signals to the brain. A tired nervous system would not be able to do this properly and tinnitus would be a result
  • The doctor presenting this view had backpain herself and noticed that link between oversensitivity to sounds and back pain. Though I notice that she thinks this is a new insight. She is unaware of the research on perception and from other specialties such as physiotherapy where with the right teacher you learn that the mind, body and emotions are connected. Therefore there are common well understood patterns that occur to produce these symptom and injuries
  • I was introduced to back pain in this holistic way which helped me understand how a lack of structural problems could still produce pain and how to adapt your habits to fix the underlying causes.
• Your Brain Can Keep You Sick: How to Break Free | Dr. Howard Schubiner, MD
  • This is a great talk and part of the recent research on pain, perception and how we see the world. When I listen to this, I feel I could explain it through a reference to movement. My sprained ankle experience being one, and many sporting experiences when we can see someone is injured but they don’t feel pain, and also when we see people experiencing pain, but there is nothing we can see wrong. We see this all the time. We are now learning why. Learning about perception during my teens helped me understand this early on, and over the years I have learnt more pieces to this puzzle so I can explain it in a different way to this doctor. His main points are correct, but it still paints a human and their biology as weak. This is a lack of understanding. Fundamentally, the nerves are always communicating with each other, so there is a strong neural middle network that prevents the brain from hearing the broader pain signals. When the brain is tired or focusing on pain, then these signals get through.
  • This reliably explains why I feel pain around my body when I am exhausted. When I learnt that pain like this meant I was exhausted and listened to that signal, I then stopped the pain by focusing on recovery through relaxing, sleep and restoring. Healing