Ian Cleary

ME/CFS Awareness Day

May 11, 2014IanChronic Fatigue Syndrome & ME, In the News & Research, Lightning ProcessComments Off on ME/CFS Awareness Day

This week is ME/CFS Awareness Week and you are likely to see stories reach the press about the condition.  (If there is an International Star Wars Day on May 4th  – “May the 4th be with you” –  then ME/CFS deserves its own week.)

But I have a problem with the campaign. Last year I posted a similar article, ‘It’s Horrible not Hopeless”  so it seems it is my annual rant time.

It IS really important that the world becomes more aware of ME/CFS.  It affects millions of people worldwide who often struggle for years to get a proper diagnosis. The campaign message should be clear and straight forward – ME/CFS is real, it’s terrible and sufferers are not crazy.

However, there is another awareness campaign that is needed that I think has an even more important message. It is an awareness campaign directed at sufferers. There are many people out there, with ME/CFS,  who incorrectly believe there is no cure, and believe that there is nothing they can do about it except manage their symptoms and learn to live with it.

Why would they think that? Because that is what they are told by health professionals, and that is the main message across most support websites and ME/CFS organisations.

These sites clearly state ‘there is no cure for ME/CFS’, and as a bonus you get to read countless real life stories of how just how bad the condition is.

Is there a cure for ME/CFS?

It is true that there is no guaranteed way of beating ME/CFS.  But the phrase ‘there is no cure’ is very dangerous and is at odds with the fact that thousands and thousands of people each year do recover.

There is an apt Chinese proverb –  “Those who say it can’t be done should get out of the way of those doing it”.

The phrase “There is no cure” robs people of hope and is misleading. And for the people who suggest that we shouldn’t get people’s hopes up? I would suggest that they don’t understand the very important role that hope plays in keeping people focused, helping them take action, stay committed and keep searching.

I don’t believe it is fair or appropriate for support organisations to suggest to people that the search for a FULL and PERMANENT RECOVERY is hopeless.  It’s time to ban the phrase – “There is no cure”.

So I am starting a new awareness campaign. I call it –  “ME/CFS – Don’t Lose Hope”

We need more success stories out there in the media to maintain hope. But the irony is that when people go public with having recovered from ME/CFS they are often told they must have been misdiagnosed. Why? Because we all know there is no cure from ME/CFS. Arghh! Time for a change.

“ME/CFS – Don’t Lose Hope”


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