After almost 10 years of mystery illnesses, regular doctor appointments and negative tests, I was diagnosed with myalgic encephalomyelitis.
Previously known as Chronic Fatigue Syndrome, myalgic encephalomyelitis (ME) is often met with disbelief due to its mysterious nature and history of being labelled as a psychiatric disorder. Although not rare, this illness is currently one of the most misunderstood, underfunded and under-researched conditions to date.
As an ME sufferer myself, I can remember my symptoms beginning shortly after a severe illness, suspected to be glandular fever, when I was about 10. Ever since then, I never fully recovered and experience flu-like symptoms, brain fog, migraines, swollen lymph nodes, stomach issues, chronic pain and fatigue daily.
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I just couldn’t continue life not understanding why I was so exhausted all the time and having all of these weird symptoms. Following numerous dismissive appointments, one GP finally took me seriously and began investigating what was going on.
After receiving one negative test after another it started to feel like I’d hit a wall and would never get answers until I came across myalgic encephalomyelitis while googling my symptoms. I brought this up with my GP and, reluctantly, they decided to entertain the idea it could be that.
In spite of being consistently disbelieved by doctors and my symptoms blamed on exam stress and puberty, I eventually got the diagnosis of ME at the age of 18.
According to the NHS website, myalgic encephalomyelitis is a long-term condition with a wide range of symptoms including extreme tiredness. Another hallmark symptom of ME is post-exertional malaise (PEM), where a patient will experience a flare-up, usually resulting in a ‘crash’ for what could be days, weeks or even months.
I’ve often experienced PEM after exerting myself by walking/standing for long periods of time, doing too many activities and when I’ve been stressed. Essentially, the more you do the worse you get.
A few years ago I had to give up wedding photography because of repeated PEM. I noticed each flare-up was taking longer and longer to recover from.
Since constantly pushing through these symptoms, my condition worsened and it now only takes a walk longer than 15 minutes, doing too much or increased stress to potentially cause PEM.
I have such little energy during PEM that I’m unable to perform daily activities like getting dressed, preparing food or work. Whenever I have PEM I rely heavily on my mum, who I live with, to help look after me.
The only thing my body has the capacity to do in this state is sleep and rest. Ask anyone with ME what they do in their spare time and I can guarantee their answers will be the same: Sleep, rest and watch TV. We know all the best TV series to binge!
Another way I like to describe ME is as a faulty phone battery. We’ve all had a phone that won’t charge properly and in the morning is only at 5%.
People with ME are like the faulty phone battery, we just don’t charge properly leaving us with a very limited energy supply to get us through the day.
As ME is a hidden illness I’ve run into the classic ‘but you don’t look sick’ comment on many occasions, making it even harder to be believed.
It is not known what causes ME exactly, though a few theories suggest it may be triggered by an infection such as glandular fever, genetics or stress. Action for M.E, a charity dedicated to the condition, defines it as a "fluctuating, neurological disease that causes symptoms affecting many body systems, more commonly the nervous and immune systems".
Diagnosis:
If, like me, it turns out you have multiple chronic illnesses this will drastically slow down the process. Getting a diagnosis of ME can be difficult, usually requiring years of persistence due to the lack of medical knowledge surrounding the condition.
Unfortunately, many doctors and medical professionals may not take ME seriously, branding it as a mental health issue with the lack of evidence and research.
If you are lucky enough to find a GP who accepts ME as a physical condition, even then it can take a while to make a diagnosis due to there currently being no test to confirm it. Instead, the GP will go through the process of elimination to rule out other possible conditions.
If the GP is unsure about the diagnosis they may refer the patient to a specialist or a local ME/CFS service such as the Broadgreen ME/CFS service.
Management:
At the moment, there is no treatment for ME only symptom management. It’s important to note that it is possible to recover from ME, although the majority of sufferers either remain the same or worsen.
Management includes pacing, pain medication, energy management, cognitive behavioural therapy and antidepressants to help with the mental health side of the condition. There is little evidence that supplements such as magnesium or B12 help but speaking from my own experience I have felt a small improvement in fatigue since introducing both supplements.
Living with ME:
I won’t lie, it can be challenging. ME has a spectrum of severity ranging from mild, moderate, severe and very severe. I’m lucky enough to have a mild-moderate form of the condition which allows me to still work with a few reasonable adjustments in place.
Getting the hang of proper symptom management takes time and practice. Personally, I’ve found wearing a watch with a heart rate monitor helps me keep track of my energy limits visually.
Since implementing this in my life, I’ve noticed the higher my heart rate the more energy my body is using. Each patient's experience will differ and many with severe or very severe forms of the illness may remain house or bed-bound.
Successful management of symptoms can mean patients, with mind-moderate ME, are often able to live a relatively normal lifestyle with a few adjustments. This may include avoiding big energy activities like walking/standing for long periods of time, pain medication & monitoring their daily activities to track energy levels.
There are a few local groups run by people with ME that meet both in person & virtually offering support including ‘Friends with ME – North West’.
Notably, a few historic figures are thought to have had ME such as the Lady of the Lamp herself, Florence Nightingale, as well as Charles Darwin, Stevie Nicks and Cher.
The website MEpedia states that while treating patients in the Crimean War, Nightingale contracted ‘Crimean fever’ and never recovered. Medical historians believe she developed ME after this infection.
Despite the condition rendering her mostly bed-bound, Nightingale was able to accomplish much within the medical community right from the comfort of her bed.
What to do if you think you have ME?
If you think you may have ME, take a look at a few resources such as the NHS website, the ME Association & Action for ME and if you meet the symptoms contact your GP to investigate it. My advice is to always advocate for yourself and fight for the diagnosis.
Even though there isn’t much in terms of treatment, just getting the answer and knowing what was going on in my body was a big help in itself.