Mar 3, 2011

The Party Trick


With my first post I really want to identify something positive about ME/CFS.  I'll be doing this periodically on this blog  and first up I've chosen: Hyperflexibility.

Hyperflexibility isn't officially listed in the symptoms of ME/CFS anywhere that I'm aware of, but in 2002 Dr. Peter Rowe, a professor of pediatrics at Johns Hopkins, accidently discovered his CFS patients comparing all the cool things they could do with their freak joints.

Consequent testing has shown that 75% of kids and teens with CFS have multiple hyperflexible joints compared with 20% of the general population who only have one.

Dr. Chris O'Callahan at the Alfred Hospital has unofficially been studying this phenomenon in adults with  CFS/POTS for a number of years.  I went to see him on a recommendation from a friend and found that he was building up a pretty funny looking evidence base of photographs, some of which had to be twisted around a few times before you could work out which ways the joints were facing.

I think I was the first patient to contribute a video to the collection.  I discovered my own hyperflexibility in 1996 - 9 years before my CFS symptoms developed - when I first succeeded in holding my hands behind my back and pulling them over my head.  When I showed this trick to Dr. O'Callahan, he got very excited about taping it for a conference he was soon to be attending.

O'Callahan has linked the hyperflexibility to abnormally high heart rates upon standing (Postural Orthostatic Tachycardia Syndrome or POTS) in CFS patients.

I can't express how validated I felt when I first saw the line graph representing my heart rate results and the comparison to a normal control.  My heart has been all over the shop for years, and I've brought it up with pretty much every doctor I've seen since 2005, but the tachycardia (fast heart beat) isn't predictable and doesn't come up in the standard tests GPs do when they check your blood pressure.

As far as I know, Dr. O'Callahan is the only doctor to test for tachycardia in CFS patients with a 24 hour heart monitor and I think the findings are very exciting.

It all strongly supports the 'ME/CFS has a genetic component' theory.

Medical findings aside though, when it comes down to it, hyperflexibility is a really cool party trick.

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