SYMPTOMS - AND, WHAT’S IN A NAME?

 The full name for ME is Myalgic Encephalomyelitis 

My - Muscle 

Algic - Pain 

Encephalo - Brain 

Myel - Spinal Cord 

Itis - Inflammation 

So the name explains the illness and the symptoms? Yes, but ….

Sometimes it is also known as Chronic Fatigue Syndrome or CFS

And even Post Viral Syndrome, PVS

This can be very confusing for patients and the medical profession.

Because they are ultimately all the same.

People with this illness tend to prefer the term ME, because this describes the areas of the body affected, whereas Chronic Fatigue Syndrome can be misinterpreted.

You may already know that I volunteer as a trustee at the Charity Action for ME. So I have chosen to use their list and description of symptoms of ME. Everywhere you look, the descriptions of symptoms are very similar.

And in the U.K. we have the Nice Guidelines 2021 which provides information for patients and medical professionals.

“Symptoms of ME (Action for ME website 2024)

Range of symptoms | Action for ME

Range of symptoms

Everyone who experiences M.E. has a different pattern of illness, and symptoms and severity can fluctuate and change over time.

M.E. is not "feeling tired."

The 2021 NICE guideline for M.E. for health professionals in England and Wales instead talks about "debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest."

While it’s important to find out more about the range of symptoms experienced by different people with M.E. – it is also important to know that people with M.E. may only experience a few of them and at varying levels of severity. Always get new symptoms checked by your doctor, as they may be unrelated to M.E. Women often find that symptoms worsen at different times in their menstrual cycle.

Post-exertional malaise

Simple physical or mental activities, or combinations of activities, can leave people with M.E. feeling utterly debilitated. They can also experience an increase in other symptoms. The impact of this may be felt straightaway but it can typically take a day or two to kick in, and is not significantly improved by resting. This is a key feature of the way M.E. affects people, and is known as post-exertional malaise (PEM), sometimes called ‘payback’.

The 2021 NICE guideline for M.E. says PEM relates to the "the worsening of symptoms which:

• is often delayed in onset by hours or days
• is disproportionate to the activity
• has a prolonged recovery time that may last hours, days, weeks or longer."

Other symptoms

While it’s important to find out more about the range of symptoms experienced by different people with M.E. – it is also important to know that people with M.E. may only experience a few of them and at varying levels of severity. Always get new symptoms checked by your doctor, as they may be unrelated to M.E. Women often find that symptoms worsen at different times in their menstrual cycle.

Along with debilitating fatigue and post-exertional malaise, people with M.E. may experience the following symptoms.

Feeling generally unwell, such as:

• Having flu-like symptoms (often called “general malaise” by doctors)
• Recurrent sore throat, with or without swollen glands.

Sleep disturbance, including:

• unrefreshing sleep
• sleep reversal,

Pain, such as:

• aching muscles or joints
• nerve pains or pins and needles
• headache or migraine
• twitching muscles or cramps
• abdominal pain (stomach or bowel problems)
• chest pain
• back pain.

If pain, especially muscle pain, is more of a problem than fatigue, fibromyalgia may be an issue.

Cognitive difficulties, sometimes collectively called "brain fog" such as:

• memory problems
• difficulty speaking
• issues with word finding
• difficulty concentrating.

Problems with the nervous system, such as:

• poor temperature control
• dizziness on standing or sitting up
• orthostatic intolerance (symptoms when standing upright which are relieved when reclining)
• hyper-sensitivity to light and sound
• sweating
• loss of balance
• poor circulation.

Digestive problems, such as:

• nausea
• loss of appetite
• indigestion
• excessive wind/bloating
• cramps
• alternating diarrhoea and constipation
• Irritable Bowel Syndrome.

Intolerance and increased sensitivity to:

• bright lights
• noise
• odours
• some foods (for example dairy or wheat)
• some medications
• alcohol.

Frustration, anxiety, low mood and depression are sometimes experienced by people with M.E. as a consequence of having to cope with the impact of the condition and its symptoms. This does not mean that M.E. is a mental health condition, and it should not be treated as such.

Watch films about symptoms on the Dialogues for ME/CFS website, with contributions from people with M.E. and health professionals.”.

The NHS list a very similar list of symptoms, as do many other websites.

With these symptoms they fluctuate from one day to another, one week, even one month to another.

Some people have symptoms that fluctuate within a day.

No 2 people are exactly the same.

Nor does everyone have the same symptoms as another person, and this is partly what makes it so difficult to diagnose and treat.

But also why people are not believed or taken seriously.

 Many symptoms are invisible, unrelated and quite frankly bizarre.

Not being believed or understood is very undermining for the patient.

And because so little is understood about the symptoms and how they affect the person it’s often the medical professionals who are not understanding.

ME is given very little time during the medical school curriculum, also the nursing and midwifery curriculum. Nor in the wider healthcare professional curriculum. 

And those that do know about it often have outdated information.

My own comments at diagnosis are testimony to that. Yuppie Flu, malingering, yeah I get tired after a busy week too. 

And, for a patient who is either trying to get a diagnosis, or is in front of their GP having been newly diagnosed, not being believed is just horrific.

Because if the medical profession doesn’t know about it - how is it possible to get help?

In the 11 years since my own diagnosis, things have moved forward slowly.

Persistent campaigns by patient action groups, charities and knowledgeable healthcare professionals (yes there are some) are bringing ME out of the dark.

But, because of this slow pace of change, things like treatment for symptom control, and medical research are very much behind compared to what other comparable illnesses such as MS or Parkinson’s have been afforded.

But that’s another chapter.