Sunday, May 31, 2009

ME/CFS and the perils of ignorance, part II: When the authorities get involved

People with ME/CFS, fibromyalgia, chronic lyme, MCS, and other invisible illnesses tend to accumulate bad experiences with the medical establishment. Some doctors will tell them there's nothing wrong -- the symptoms are all in their head. Less forthright doctors will give them a placebo and send them on their way.

That sick people have to endure this kind of casual dismissal is bad enough. But the consequences of medical prejudice can be much, much scarier.

Here are a couple of recent examples.

Brian Nicholson

Brian Nicholson, who lives in the UK, has ME/CFS and postural orthostatic tachycardia syndrome (POTS). He has been involuntarily committed to a mental hospital for "abnormal illness beliefs in relation to ME."

According to Simon Overton, who maintains a Facebook page about this, Nicholson was drinking a lot of water in an attempt to treat his POTS. Though he was monitoring his fluid intake/output and his sodium levels, those who committed him claim his water intake was excessive, and that he is a danger to himself.

Overton says he had been doing well back when he was on IV saline -- and not drinking too much water when he was on it.

You can read more about Nicholson here.

Ryan Baldwin

16-year-old Ryan Baldwin has ME/CFS, in addition to severe autonomic dysfunction, a progressive heart conduction system block (LBBB) with right axis deviation, and mitochondrial disease. The Department of Social Services in North Carolina removed him from his home, accusing his parents of "fictitious disorder by proxy."

Apparently the diagnoses Ryan received from Johns Hopkins, the Mayo Clinic, and other institutions didn't impress them much.

Ryan has been in foster care for four months. He isn't allowed to use his power wheelchair.

You can read more about Ryan Baldwin here and here and here.


Andrea Martell said...

may I have permission to repost article at

Will link back to your blog.

cinderkeys said...

Yes, please do repost.