What is Chronic Fatigue Syndrome?

(AKA Myalgic Encephalomyelitis)

My own understanding of CFS has been developed over a ten year period through my own lived experience, many many hours of research, listening to the accounts of others, and experimentation with remedial practices.

The knowledge I share represents what I sincerely believe has helped me to:

  • understand my own condition

  • better manage my symptoms

  • improve my quality of life

  • And most importantly put me on a path toward full recovery

My sincere hope is that this information will aid my fellow sufferers (and their loved ones) in achieving their own understanding and eventual recovery.

Disclaimer: Please consult a medical professional before undertaking any treatment or applying the guidance published via this or any other website.

What is CFS/ME?

Complicated in name, diagnosis and treatment, Myalgic encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is a long-term condition, primarily identified by extreme tiredness.

It's important to note that the severity and combination of symptoms can vary widely among individuals with CFS and the condition often presents with periods of remission and relapse.

The NHS lays out four main symptoms for ME/CFS:

  1. Fatigue: Feeling extremely tired all the time, making daily life exhausting 

  2. Sleep problems: including insomnia and/or feeling like you haven’t slept enough or at all

  3. Brain fog: difficulties with thinking, concentration and memory

  4. Post-exertional malaise (PEM): symptoms getting worse after physical or mental activity, possibly taking weeks to recover

Other symptoms of CFS include:

  • Muscle and joint pain

  • Headaches

  • Sore throat and swollen lymph nodes

  • Flu-like symptoms

  • Digestive issues

  • Sensitivity to light, noise, or certain odors

  • Anxiety

  • Dizziness

CFS/ME Diagnosis

My own symptoms include many of those listed above, but the collage of symptoms is different for each of us and tends to evolve the longer you have suffered with the condition.

The fluctuations in symptoms, as well as the wide array, make diagnosis difficult and usually a process of elimination. As a consequence, sufferers can be left wandering for years from one potential diagnosis to another, before eventually receiving a diagnosis of CFS/ME. Only then are they able to commence the long and difficult (but possible!) battle toward recovery.

Read more about my journey to CFS/ME diagnosis and recovery in my autobiographical book On a Scale of 1 to 10

What Causes Chronic Fatigue Syndrome?

I’m afraid I will disappoint you here by saying that the exact cause is yet unknown. Like many other conditions, it is likely due to a combination of factors including exposure to infections, immune system changes, energy production, genetics and, of course, stress.

How can I manage my CFS/ME?

Like many others, I suspect, in my desperate search for answers and treatment for this debilitating condition I encountered my share of snake oil salesmen and charlatans who prey on the vulnerable and desperate.

I find this utterly abominable and it infuriates me to think that they make a living from others' pain and suffering.

Therefore, before I begin to describe how I learned to manage my condition and find the path to recovery, let me first apologise because I must be blunt: there is no quick fix!

Due to the lack of a definitive diagnostic test and the complex nature of the illness, managing CFS typically involves a multidisciplinary approach focusing on symptom management, lifestyle adjustments and supportive care.

Recovery is not linear. There will undoubtedly be peaks and troughs as you learn what works for you, your body and your environment.

Having said that, there is a light at the end of the tunnel and with commitment, consistency and rest you can manage symptoms and live fairly harmoniously with the condition.

Read my CFS/ME Management and Recovery post for a detailed 4-step guide to aiding and maintaining recovery.

CFS/ME References & Resources

The below references and resources proved to be really useful for me:

I would also advise you to find a CFS community – local or digital.

Never underestimate the power of speaking to someone who understands what you are talking about and going through, even if they can’t actively help in any tangible way.

One of my aims in speaking about my condition is to create a community of like-minded people who can rely on each other for support and compassion. 

I am offering free support and advice to those suffering from CFS/ME.

Keep an eye on my blog for more information and resources for CFS/ME.