In September 2024 I was diagnosed with M.E. / Chronic Fatigue Syndrome (CFS). Since then, it’s been a journey of research, and just generally learning how to cope with the condition. I am now on a mission to share awareness of this condition to support others in their journey.
Whether you have been recently diagnosed with M.E. / Chronic Fatigue Syndrome or Long Covid, you have a family member or friend experiencing symptoms, or are just interested to learn more, this M.E. / Chronic Fatigue Awareness Day I am sharing 8 things you should know about M.E. / Chronic Fatigue Syndrome.
1. There are different levels of severity.
Some may be able to work part time or manage light activities, whilst others are housebound or bedbound. The severity can vary from person to person, which makes it difficult to fully understand if you have not seen or experienced it yourself. In my personal experience, I had an occupational health assessment, which suggested I should work from home mid-long term and I adjusted my hours, so whilst I still work full time I have Wednesday afternoons off, which is often when my fatigue can peak.
2. Fatigue doesn’t mean we’ll necessarily sleep all day.
Actually, sometimes sleep can elude us completely. I’ve been quite fortunate with my journey in that I tend to fall asleep instantly – but I won’t nap in the daytime. Since falling ill in January last year, I don’t remember my dreams and my sleep is deep, as though I’m completely exhausted. In the mornings you can wake up unrefreshed, as though you haven’t slept at all. Others, may spend additional hours sleeping or napping, more than their usual – or have vivid dreams as light sleepers. Again, this really varies from person to person.
3. Post-Exertional Malaise is a key symptom.
This basically means that after even small amounts of physical or mental effort—things that might seem easy or routine to someone else—the body can crash. It’s not just feeling a bit tired; it can feel like being hit by a wall of exhaustion, pain, brain fog or flu-like symptoms. The crash often doesn’t happen right away. It might hit hours or even a day or two later, and the recovery can take days, weeks, or longer. It’s one of the things that really sets M.E. apart from other fatigue-related illnesses. I experience rolling PEM which can cause issues daily, and I often find I struggle with symptoms of brain fog and fatigue between 2pm to 6pm. Similar to how you might feel with your mid-afternoon slump, imagine a slightly longer version! I have experienced a few crashes which both made me feel very poorly. With my most recent crash I was unable to move my arms and legs, and had flu-like symptoms. This lasted a few days, but again I need to be super careful to avoid these in case it turns into months.
4. It’s not all in your head – It’s a Mental and Physical disability.
One of the biggest misconceptions about M.E. / CFS is that it’s “just in your head.” But the truth is, it’s a real, physical illness that can be seriously disabling—both mentally and physically. Brain fog, memory issues and trouble concentrating are all part of it, but they’re not imagined symptoms—they’re neurological. The physical side is just as real: muscle weakness, pain, dizziness and that crushing fatigue that doesn’t go away with rest. Sometimes I notice that I have “robot legs” as though my brain isn’t keeping up with the movement of my legs, which can result in trouble walking. On occasions when I am close to crashing I experience intense nerve pain in my legs. I now use a walking stick permanently if I leave the house, something which I was previously only using for longer trips due to my chronic foot pain.
5. There is no one quick fix.
There is currently no medication you can take to cure M.E. / CFS. What helps one person might make another worse and finding ways to manage symptoms often takes time, patience and trial and error. Pacing, rest and listening to your body become key tools—but even those aren’t cures. It’s a condition that requires ongoing care, not a one-size-fits-all solution. I am currently under treatment with my local Chronic Fatigue Service, who provide support through various methods including Occupational Therapy, Physiotherapy and Psychotherapy. These routes are designed to provide support with how to live with this debilitating condition including the importance of pacing and rest.
6. Learning to rest and pace are a priority.
Something I have realised since being diagnosed is the importance of rest and pacing. This is actually exceptionally difficult to do! Those with chronic fatigue have often been busy, high-achieving individuals before getting ill. Support groups I’m on are full of former academics, C-suite individuals, medical professionals, athletes, teachers etc. the list goes on. Many have had to give up on their professions to deal with their condition. One of the most important things someone with M.E. / CFS can learn is how to rest properly and pace themselves. It might sound simple, but it’s actually a skill—and a crucial one. Because pushing too hard, even on a “good” day, can lead to a serious crash. Pacing means learning to balance activity with rest, staying within your body’s energy limits, and avoiding that post-exertional crash whenever possible. It often involves doing less than you think you can handle, planning recovery time, and tuning into your symptoms. Rest isn’t laziness—it’s survival.
7. The M.E Association provide a lot of FREE resources.
One of the first things I did after my diagnosis with M.E. / CFS is join the M.E Association. This is a not-for-profit member organisation that provides a wealth of resources for all, whether you are recently diagnosed or supporting someone with the condition. The website and associated resources including leaflets and magazine include everything from guides on symptoms and management, to practical advice on benefits, pacing, and navigating the healthcare system. The magazine has been so beneficial for me, as it is full of real life stories – really showing the spectrum of severity that M.E / CFS can bring.
8. Anyone can get M.E / Chronic Fatigue Syndrome and it can happen overnight – It is also closely linked with Long Covid.
M.E / Chronic Fatigue Syndrome doesn’t discriminate—anyone can get it, regardless of age, background or lifestyle. Some people develop it gradually, while for others, it can come on suddenly, almost overnight, like it did with me, often after a viral infection, surgery, or a period of extreme stress. One day they’re active and functioning, the next they’re struggling to get out of bed. It’s also closely linked with Long Covid—in fact, many people with Long Covid are now experiencing symptoms almost identical to M.E., like post-exertional malaise, unrefreshing sleep, and cognitive dysfunction. These connections are finally drawing more attention to a condition that has been under-recognised for far too long.
Interested in learning more about the tools that you can get to help you on your journey with M.E / Chronic Fatigue Syndrome? Make sure to follow my blog and on social media (Instagram and TikTok) where I will be sharing my top tips to support with fatigue and the associated symptoms.
Rebecca Thi 