Ian Cleary

ME/CFS Awareness Day – May 12

ME/CFS International Awareness Day  – May 12

Psst. Pass it on. Tell the world. But please be aware of this ……

it’s horrible but not hopeless!

It is vitally important that people understand that conditions like CFS, ME, MCS or Fibromyalgia are horrible, real and debilitating physical conditions & that sufferers are not putting it on, being a hypochondriac, faking it or just crazy. They can’t just ‘get on with it’.

While I totally support public awareness to get across these ideas, the awareness campaigns often stray into what I see as ‘spin’. In the desire to be heard, the message is often not fully accurate. While it gets people’s attention it also doesn’t provide the full picture of (and for) the people who experience these conditions.

We can tell it like it is without the spin and still get attention. These are the two most common myths I hear that deserve closer inspection.

Myth 1: There is no cure

This flies in the face of all the people who have recovered. I am not going in to bat for any one approach here. People recover using a wide range of approaches. However if it is true that there ‘is no cure’ then no one could have recovered. And that simply is not the case.

Statistics vary on prognosis but the Australian ME/CFS Association states:

“The recovery rate for children is often better than for adults. People diagnosed with ME/CFS can generally expect to be unwell for some years.”

But prior to this statement they point out there is “no known cure”.  

It is true that there is no accepted cure for these conditions or universally successfully approach. But that is miles away from ‘there is no cure’.  Suggesting there is no cure often leads people to believe that it is hopeless and there is nothing you can do – neither is true.

MYTH 2: Having ME/CFS is like the final 2 weeks of an AIDS sufferer’s life.

There is no need to point out the glaring difference between ME/CFS and AIDS. No AIDS website is going to say “The recovery rate for children is often better than for adults. People diagnosed with AIDS can generally expect to be unwell for some years.”

Severe cases of ME/CFS are bad of course. I have worked with the bed bound, bodies racked with pain, unable to stand, or open their eyes without pain, sensitive to sound, chemicals, foods. Decades of suffering. (I have also seen them get better.)

But if you use the worse cases as your examples you can argue bee stings are like fatal lion attacks and peanuts are like cyanide.

Why does all this matter?

Because as a sufferer, if you believe there is no cure you are less likely to look for answers. The one thing that people who get well have in common is that they refused to believe it was hopeless. They kept looking until they found their answer.

Also if you get a diagnosis and believe it is anything like AIDS then that’s pretty hopeless. Hopelessness plays an insidious role on our biochemistry.

If you believe that ME/CFS is linked to a dysfunctional stress response (which is how we approach it) then these myths are more than just harmless spin. Even if you don’t believe stress is a factor, these two myths help no-one.

It’s horrible not hopeless.

Please do pass this on.


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