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ME – an underdiagnosed and often misunderstood chronic disease

 

Sally callow and Foggy
Sally callow 

 

IMAGINE having an invisible debilitating illness, having no idea what caused it and no prognosis. Welcome to the world of Myalgic Encephalomyelitis (ME).

My name is Sally Callow and I am both an ME sufferer and advocate. I have had ME for 7 years; luckily I am a mild sufferer and I am still able to work full time.

I have created Foggy’s World Tour; a social media campaign to help raise funds and awareness for the ME Association in the UK.

Foggy has been very well received, and using a soft toy to raise awareness has helped to keep the campaign positive; it would be so easy to sink into the depths of negativity when highlighting the plight of severe sufferers, many of whom are bed or house bound; I felt I had to keep it light and fluffy to maximise engagement.

Slowly but surely, I am educating non-sufferers about the true nature of this dreadful illness.

My diagnosis was an unpleasant three year period of an extraordinary amount of doctor’s appointments and constantly being told there was nothing wrong with me, because nothing showed up in any of the tests. My diagnosis went like this (paraphrasing obviously): “Miss Callow I think you have ME but don’t worry about it”. My diagnosis was made by a locum I had only ever met once, and the lack of awareness and empathy was astounding!

That’s the problem with ME, there is no specific test. Unfortunately, everything else has to be ruled out before a definitive diagnosis can be made. This is why it is common for sufferers to say they had to wait 3-4 years to get a diagnosis.

Myalgic Encephalomyelitis is not an easy condition to pronounce, it took me 3 years to work out how to say it properly; purely because doctors and sufferers all abbreviate it to ME. When it is broken down into different segments it partly explains what it actually is.

Essentially it is inflammation of the brain and spinal cord combined with muscle pain. However, the name doesn’t really explain the true nature of the condition. There are such a myriad of symptoms that all come under the umbrella of ME. They include:

  • Post exertion malaise
  • Extreme tiredness
  • Pain
  • Light/noise sensitivity
  • Brain fog
  • Short term memory loss
  • Cognitive impairment
  • Intolerances (Food, chemicals etc)
  • Swollen glands
  • Fainting
  • Dizziness
  • Inability to control temperature
  • Migraines
  • IBS

No two sufferers have the same exact symptoms with the same degree of severity. This is perhaps why doctors find it so difficult to understand and diagnose. ME is so much more than ‘just tiredness’ and yet sufferers are constantly told that ME is simply chronic fatigue. ME is also known as Chronic Fatigue Syndrome, I personally don’t use this term, as I feel it belittles the full range of symptoms that I experience on a daily basis.

May 12 is International ME Awareness Day and to mark the event, last year I gave a talk. In the audience was a mixture of sufferers, carers and people who wanted to learn about the condition. My talk was very well received, please watch for yourself (apologies for the sporadic sound issues):

Future plans for the Foggy ‘brand’ include children’s books with all profits going to the ME Association for research funding. If you would like to know more about the campaign please check out the website.

The thing that drives me on with my advocacy is that one day, I want someone in a laboratory to be able to tell me why I have this dreadful illness. Every pound raised gets us one step closer.

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