My Post for #MEAwarenessWeek 2019

This week (6th – 12th May) is ME Awareness Week – and #MillionsMissing – raising awareness about ME (also sometimes called ME/CFS).

ME Awareness Day is on 12th May – Florence Nightingale’s Birthday, as it’s thought she had ME.

I care about this because I’ve got ME. I’ve had ME since I was 11. I’ll be 40 later this month… I am one of the ‘Millions Missing’ around the world with ME.

But What is ME?

“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed.”

Centers for Disease Control (CDC) website information (2018).

Symptoms vary from person to person but often include:

  • Physical and mental exhaustion (fatigue), which feels very different to ordinary tiredness;
  • Post-exertional malaise (PEM): this means that any physical or mental activity can bring on an increase in symptoms, but not straight away;
  • Intense muscle or join pain;
  • Inability to speak or concentrate (often called ‘brainfog’);
  • Extreme flu-like symptoms;
  • Sleep disturbance;
  • Dizziness and/or nausea;
  • Hyper-sensitivity to light and sound.

The condition also ranges dramatically in severity. I’m at the ‘moderate’ end of things but even that means that I’m basically house bound.

But I’ve got friends with severe ME, who are completely bed bound (as I was for a few years at the beginning of my illness), have great difficulty speaking and pretty much any sensory stimulation is agony to them. There’s a good (and detailed!) overview of ME over on the ME Association’s website.

You might also like to watch this great TED Talk by Jen Brea called “What happens when you have a disease doctors can’t diagnose”.

Jen has also made an amazing documentary about life with ME called UNREST (and a couple of my friends are also in it!) It’s on Netflix or you can pay to watch it on YouTube and Google Play.

Why does ME need ‘Awareness’?

ME is a ‘hidden’ illness, with very little media coverage or awareness (unlike its close namesake MS – although they are not connected conditions). ME sufferers are frankly normally too tired to fight for attention.

It’s thought that over 1 million Americans; 250,000 Brits and 100,000 Canadians and Australians have ME. In total it’s thought that around 17 million people have it globally (but it could be many more than that).

Another tragedy of ME is that although ME has been defined as a neurological condition by the World Health Organization, many (including much of the medical establishment) still think it’s ‘all in the mind’ and often patients are still treated as having a physiological/psychiatric condition rather than an actual ‘physical’ illness.

This has caused HUGE damage to both individual sufferers (as psychiatric treatments only cause harm and not good) and to all sufferers as it’s stopped research into the real cause of the illness and possible treatments.

In the UK, the PACE Trial has proved this dramatically. There’s even been a debate in the UK parliament about it, where Carol Monaghan, MP called it “one of greatest medical scandals of 21st century”.

ME is thought to be twice as common as MS, but MS receives 20x the funding than ME does! (There’s more info and stats on this ME Action Fact Sheet – PDF)

What can you do?

If you’d like to know more about ME Awareness, you can you check out the posts on organisations like The ME Association and ME Action.

If you’re on social media, you can follow #hashtags like #MEAwareness, #MEAwarenessDay, #MillionsMissing, #MillionsMissing2019, #MEAction, #ME, #MECFS, #pwME (people/person with ME), #GoBlueForME and #CanYouSeeMENow where you can see stories of people with ME and find out more. You might see photos of shoes, showing the missing lives of people with ME. Here are my shoes from last year…

For some fun you can check out ME Foggy Dog, a stuff toy dog who travels around the world raising awareness for ME. (You can also get some great Foggy merch – 50% of Foggy’s merch profit goes to ME research.)

If you’re a professional in business, healthcare or education, you might like to get some online ME training from Stripy Lightbulb CIC.

But most of all be understanding! Most people with ME are happy to answer (sensible) questions about the condition – as I will in the comments!

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