M.E. Awareness Week, Part II: What’s in a Name?

Image by ME Foggy Dog' www.mefoggydog.org

Star and Crescent are proud to be working with Portsmouth fundraising campaign M.E. Foggy Dog and its founder Sally Callow on a week of articles devoted to raising awareness of Myalgic Encephalomyelitis (M.E.). In part II of this week’s 6-part series, Sally explores the many names of this still misunderstood illness.

‘M.E? That’s JUST tiredness, right?’ It’s amazing how often I’ve heard this said, so it seemed fitting that my second article of this M.E Awareness Week special feature on S&C should challenge this common misconception.

The reality is that not only is Myalgic Encephalomyelitis (M.E) a complex neurological condition but it is also surrounded by political problems that make the recognition of this severely debilitating illness – by medical practitioners, as well as the general public – one of the M.E community’s biggest struggles.

People living with M.E experience a wide range of symptoms but tiredness is the one symptom that the general public know about. This is partly because M.E is also known as Chronic Fatigue Syndrome (CFS), a name that has caused many problems in the fight to get M.E better understood by the public.

CFS was the name coined by the Center for Disease Control (CDC) in response to a “chronic flu-like illness” outbreak around Lake Tahoe in the US in 1985. Since then, many use the term ME/CFS to describe the condition. But there are many other names. Here is a list of some of the other names M.E by which ME has been or is known around the globe:

  • Myalgic Encephalomyelitis
  • Systemic Exertion Intolerance Disease
  • Benign Myalgic Encephalomyelitis
  • Epidemic Neuromyasthenia
  • Chronic Epstein-Barr Virus Syndrome
  • Chronic Mononucleosis Syndrome
  • Raphe Nucleus Encephalopathy
  • Low Natural Killer Cell Disease
  • Atypical Poliomyelitis
  • Epidemic Vasculitis,
  • Chronic Fatigue Syndrome
  • Post-Viral Fatigue Syndrome
  • Chronic Fatigue Immune Dysfunction Syndrome
  • Myalgic Encephalopathy
  • Chronic Neuroendocrineimmune Dysfunction Syndrome
  • Neuroendocrineimmune Dysfunction Syndrome

A few of names refer to the location of specific outbreaks:

  • Iceland Disease
  • Akureyri’s Disease
  • Royal Free Disease
  • Tapanui Flu

As an M.E sufferer myself, I refuse to use the term Chronic Fatigue Syndrome. The exhaustion I feel every day cannot simply be described as chronic fatigue. It is all-consuming, affecting both my body and mind. It sometimes feels like a form of paralysis, where I can’t quite feel my arms and legs. I can’t function. In combination with the – more than 20 – other symptoms I experience alongside this, and it can only be described as a life-altering illness.

The often ridiculous fight to get a universally accepted name for our illness makes M.E unique. Our condition is so complex it is hard to clearly define it with one name.

So, what does the most common name, Myalgic Encephalomyelitis, actually mean?

In a nutshell, it means brain and spinal cord inflammation. This inflammation is what makes M.E a neurological condition; it affects every system in the body. There are over 30 recognised symptoms, each M.E sufferer will experience their own unique range of these symptoms to varying degrees of severity. Symptoms include: Extreme fatigue, pain, cognitive issues such as memory loss: concentration issues: and word finding abilities. IBS, sensitivities to light, sound, and smell, issues with temperature control, skin rashes, slurred speech, intolerances, migraines, and headaches.

There are more. So much more than just tiredness.

The ME Association state on their website:

‘The core symptom of ME/CFS is profound and disabling fatigue, which almost always affects both physical and mental functioning. The fatigue and other symptoms are not caused by ongoing excessive exertion and are not relieved by rest.’

M.E is a fluctuating illness, our symptoms change throughout the day, often by the hour, no matter what activities we have undertaken. What we can do at 9am may be impossible to do by 1pm. We could spend all day in bed resting and our health will still fluctuate.

This can be hard for the general public to understand because it does not mirror most people’s experience.

Another defining characteristic of M.E is Post-Exertion Malaise (PEM), or what many M.E sufferers call ‘Payback’: what our body makes us ‘ pay back’ for undertaking activity or exertion. Payback usually hits 24-72 hours after we have exerted ourselves. Our symptoms double, and we are forced to rest until it passes. PEM has also recently been described as Exertion Intolerance by David Tuller, an M.E lobbyist and journalist, during an Emerge Australia (M.E charity) conference.

There is a spectrum of symptoms ME sufferers experienced, from mild to severe. I am a mild sufferer. I can’t work full time but am able to work a reduced number of hours per week. My social life is virtually non-existent because of my illness, and my life is restricted in a lot of ways due to my lack of energy.

A moderate sufferer tends to be unable to work, and while not quite housebound, may only be able to leave the house a couple of days per week, making it difficult to participate in social activities.

Severe sufferers are bed- or housebound, are unable to work, and unable to actively participate in the world around them. Many are restricted to living within four walls for years, even decades. Severe M.E affects 25% of all M.E sufferers. In the UK, that equates to around 62,000 people.  A recent, award-winning documentary called Unrest was directed by severe M.E sufferer Jen Brea and is an incredible insight into severe M.E. You can watch it on Netflix and in many other places online, including Amazon and GooglePlay. Severe sufferers are invisible to most of the general public, and I work hard with my advocacy to bring their struggles into the open.

What causes M.E? My own M.E experience was triggered by Labyrinthitis. Yep, a bog-standard ear infection. There are a few known triggers, including viral infections like glandular fever; bacterial infections like pneumonia; and emotional trauma. M.E does seem to run in some families but the reason for this is unknown.

While we know some of the triggers, the cause is still evading us. Why does one person have Labyrinthitis for 6 weeks and then get back to their normal life, someone like me has Labyrinthitis for 6 weeks, is well for 2 weeks and then M.E hits. Until we identify the reason behind the differences in recovery, we won’t know the cause.

So far, research has found anomalies in gut bacteria linked to ME, and scientists are working hard to find the root cause of the illness, but it is a work in progress. This is why M.E research funding is desperately needed. We can’t work towards effective treatment or a cure until we find the root cause.

You can get involved in this week’s awareness raising by coming along or helping to spread the word about two exciting events:

Friday 11th May 2018, 12.30 – 2pm, M.E Awareness Week – Go Blue!

Join Sally at the Frank Sorrell Centre for a coffee and a chat, and find out more about ME Foggy Dog and M.E/CFS. This is a family friendly event with activities for the whole family to take part in. ALL WELCOME!

Find out more here.

Saturday 12th May 2018, 12.30 – 2pm, International M.E Awareness Day – Go Blue!

Join Sally for a coffee morning in the Lily & Lime cafe in Central Library. Wear blue to help spread the message!

This is a family friendly event with activities for the whole family. Take part in our M.E quiz to be in with a chance of winning a pack of Quirk, a family fun card game and 2x best seller in the UK, it is nominated for 4 awards in gaming this year and is showcasing at the UK Games Expo in Birmingham and International Spieltage in Essen, Germany 2018. The prize is one of the first 1000 to be printed.

Find out more here.

And of course, read the rest of  Sally’s articles from this week here on S&C.

Head over to the ME Foggy Dog website to follow Foggy’s travels on his blog, donate and shop to raise money for the ME Association, and of course, follow ME Foggy Dog on social media: on Twitter, Facebook, YouTube and Instagram.

Main image courtesy of ME Foggy Dog.