Why this matters now
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is often misunderstood. Many people think it’s “just being tired” or that it’s psychological. But a major genetic study released in August 2025 has confirmed what patients have said for decades: this is a real, biological illness.
If you’ve been living with exhaustion that doesn’t go away, “brain fog”, strange autonomic symptom flare-ups after small activities, or other unexplained health changes this information could help you, and the people around you, understand what’s going on.
What the DecodeME study found
The DecodeME project looked at the DNA of more than 15,000 people with ME/CFS and compared it to over 259,000 people without the condition.
They discovered eight genetic “signals” that seem to make someone more likely to develop ME/CFS. Most of these are linked to the immune system and nervous system the very areas patients have long said feel “out of balance”.
Importantly, these genetic patterns had nothing to do with depression or anxiety, helping to end the stigma that ME/CFS is “all in the mind”.
The human side of the science
For many people, these findings bring relief. It’s not just about numbers on a research paper, it’s about finally having proof that your symptoms have a biological cause. For years, patients have faced disbelief from employers, friends, and even medical professionals. Now, science is showing that ME/CFS is not a weakness or a lack of willpower it’s a complex medical condition with measurable differences in the body. This shift in understanding can make conversations with healthcare providers, family, and workplaces much easier.
What ME/CFS can look like
ME/CFS can develop after many different triggers, often after an infection.
Common symptoms include:
- Post-exertional malaise (PEM), the key symptom. This is when symptoms get much worse after even small amounts of physical, mental, or emotional activity.
- Overwhelming fatigue that rest doesn’t fix.
- Brain fog, trouble concentrating, thinking clearly, or finding words.
- Aches, pains, and flu-like feelings.
- Sleep problems, unrefreshing sleep, or waking often.
- Sometimes dizziness, palpitations, or feeling faint when standing up.
What this means for people with symptoms
- You are not imagining it, science is now catching up to patient experiences.
- There is no genetic test yet, but the findings confirm this is a physical condition.
- Knowing about PEM can help you and your GP make sense of your symptoms.
If this sounds familiar, it’s worth making a simple note of your symptom patterns especially what happens after activity and discussing it with your doctor.
What it means for healthcare
These findings give healthcare providers more reason to recognise ME/CFS as a genuine biological condition. While there is still no cure, understanding the immune and nervous system links could lead to better treatments in the future.
For now, most care focuses on:
- Avoiding symptom “crashes” by pacing activity.
- Treating related problems like poor sleep, pain, dizziness, or gut issues.
- Supporting daily life through adjustments at work, school, or home.
A note on Long Covid
Some people with Long Covid develop symptoms that look very similar to ME/CFS, especially PEM. The DecodeME study didn’t directly study Long Covid, but its approach shows how genetic research could help uncover whether the two conditions share the same roots.
Living with ME/CFS – what helps many people
- Pacing – balancing activity and rest so you don’t trigger PEM.
- Listening to your body – stopping before symptoms flare, even if you feel okay in the moment.
- Making space for recovery – scheduling quiet time after anything demanding.
- Asking for adjustments – such as flexible hours, remote working, or reduced workloads.
These changes aren’t always easy, but they can reduce the severity and frequency of symptom flare-ups.
In summary
- ME/CFS is now backed by strong genetic evidence.
- The key symptom PEM is important to recognise early.
- The illness affects the body’s immune and nervous systems, not just “energy levels”.
- While research continues, pacing and symptom-led support can make a difference.
- If you recognise these symptoms in yourself or someone you care about, it’s worth talking to a GP and sharing the new research.
Disclaimer:
This article is for information and awareness purposes only. It is not medical advice and should not replace guidance from a qualified healthcare professional. If you have symptoms or concerns about your health, please consult a GP or relevant medical specialist.
Long Covid Journey 