Ryan Baldwin back home

I cannot express in words how much of a living hell that last eight months of my life have been. I can't stress how pointless, unnecessary, and painful this whole thing is and has been.

—Ryan Baldwin

Ryan Baldwin is finally back with his parents. He had been removed from their custody after authorities accused his mother of factitious disorder by proxy. They didn't believe he actually had ME/CFS.

Full story at Mountain Xpress.

Despite diagnoses of ME/CFS from Johns Hopkins and the Mayo Clinic, it took the authorities eight months to decide that perhaps he really is sick. Barring another motion, the case will officially be closed in four months, when he turns 18.

Welcome home, Ryan. Here's hoping they let you stay there.

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.