Monday, 12 May 2014

May 12th- International ME/CFS Awareness Day: Why does awareness matter?

It's International ME/CFS Awareness Day- May 12th; the day when everyone affected tries to get the word out about this illness, but why does awareness matter?

• Awareness matters because when I say I have CFS, more often than not, people don't know what it is or what it stands for.
• Awareness matters because, when I say I have Chronic Fatigue Syndrome, some people think I just get tired- there's so much more to it than that.
• Awareness matters because I have been asked several times whether CFS makes me fall asleep spontaneously- no, that's narcolepsy, CFS causes sleep disturbances, but normally in the form of insomnia.
• Awareness matters because some doctors end up asking me about my condition, and I end up educating them, instead of the other way round.
• Awareness matters because the world seems oblivious to the extent and severity of suffering caused by this illness.
• Awareness matters because those suffering most are unable to speak up themselves.
• Awareness matters because I want to say 'I have CFS' and get the same level of understanding that someone would get if they said 'I have MS'- the two conditions are very similar in a lot of ways, yet MS, and most other conditions, appear to be far better understood by the general public.
• Awareness matters because some sufferers are still receiving the wrong advice from doctors, which leads to worsening of their condition.
• Awareness matters because some patients are still going years without a diagnosis.
• Awareness matters because more research needs to be funded into the condition.
• Awareness matters because there is no real treatment, and certainly no cure.
• Awareness matters because so many thousands of people are living very limited lives as a result of this illness, and we deserve more.
• Awareness matters because there are people lying bed-ridden, scared, paralysed and tube-fed, and there's nothing doctors can do to make them better.
• Awareness matters, because there continue to be child protection cases brought against innocent parents withdrawing their children from harmful exercise programmes.
• Awareness matters because some sufferers continue to take their own lives because they cannot tolerate the suffering any longer.
• Awareness matters because this illness is destroying so many lives- so many hopes and dreams- and we want people to understand and help us to fight for a brighter future.

Imagine a world where everyone has heard of CFS. Imagine everyone knowing about and understanding all the biological abnormalities that have been found. Imagine important people taking interest in this well-known illness, and funding more research. Imagine this research finding an effective treatment, or even a cure. Imagine all those currently unable to walk or study or work being able to do these things again as a result. Imagine us all getting our lives back.

Awareness is the first step towards this dream coming true. Please, raise ME/CFS awareness in whatever way you can today!


  1. Hello!
    I'm a fellow 12th May Blog Bomber slowly and gently working through the other entries vi the master list at

    It is good to see so many (with such restricted resources) stepping up.

    On awareness, can I add a little contribution?
    If useful, please freely copy and employ this image of a visual aid I made some time ago.

    Regards, Chris.

  2. All relevant points. I saw a tweet on twitter earlier this week that said something like 'CFS is one of the only illnesses where sufferers have to campaign and fund raise for themselves' and it is so true. Most other serious illness sufferers would not be allowed by their family/friends or even docs to do so much. It is so moving to see so many of us doing so much for awareness, even though we are not very well and will suffer afterwards, but it's worth it if it could help us and future sufferers right?
    Sending lots of hugs like always xxx

    x Hayley-Eszti |

  3. Well said!

    Thank you so much for helping raise awareness by participating in the #May12BlogBomb.
    Over 100 posts resulted, and links to the others can be found here:

    Perhaps we’ll try this all again next year!