Like many other patients, I've received some terrible advice over the years.
In hindsight, I can kind of understand why, especially early on -- as I'd have good days and then bad days. Days where I'd appear completely normal, followed by days, even months of severe weakness and pain.
I wasn't quite sure what was happening myself, and because I was still working and needed to appear as professional as possible, I'd often hide that pain and weakness behind a smiley facade. So I guess I can kind of understand how some might think I wasn't really sick.
But others knew better, because eventually I had to tell them why I couldn't do 'this' or 'that'. Even after I ended up in the ER and had been sick for years, my two bosses were particularly clueless and/or mean-spirited. One would actually laugh in my face when I tried to describe how difficult things were becoming.
So what was their brilliant advice? Swimming.
Yup, I just needed to exercise more. After all, it had helped my boss's depression when his antidepressant stopped working. That, and a month-long vacation in Malaysia.
Yet not only do ordinary people believe this, but doctors do as well,
with often tragic consequences. Especially in the UK, where such
ignorance (based on the flawed 'PACE' study) and lack of treatment options under the National Health
Service has actually led to the death of many patients.
But seriously, exercise? Simple, common sense would suggest that if one has trouble walking, or even standing, that the last thing that would help, would be more exercise. And really, if a simple exercise program was the cure, NO ONE WOULD BE SICK.
End of rant.
Fortunately, a whole slew of recent studies has shown actual biological abnormalities in patients with ME/CFS. Here's a concise recap of the studies by Rochelle Josyln.
