[jchap.org]

The primary symptoms of Myalgic Encephalomyelitis are Pre- and Post Exertional Malaise: Physical or mental exertion makes people with M.E ill. Unfortunately, lack of physical or mental exertion also make us ill. It's a bind. This is how I escape it.

How I manage my M.E

https://twitter.com/batteredoldbook/status/1089141884830785536

"Doctor do-little and the Pushmi-pullyu"

https://twitter.com/batteredoldbook/status/1089141884830785536

"Respecting high and low limits on exertion"

https://twitter.com/batteredoldbook/status/1089141884830785536

"Daylight"

After 13 years of decline in function, even a tiny upward trend in my health was cause for huge celebration and relief.

https://twitter.com/batteredoldbook/status/1089141884830785536

"Bias"

Bias is a dangerous thing. It blinds us. To be clear, this diagram is not a dig at medicine: Over the course of 30yrs I myself have regularly pretended the limits of my condition did not exist ...and often paid a heavy, long-term price. Crash is a very common experience for people with ME.

https://twitter.com/batteredoldbook/status/1089141884830785536

"Counter-bias"

Likewise, counter-bias is dangerous. It too blinds. Having M.E does not magically remove a patient's physical & mental requirement for activity. While inactivity can reduce symptoms its cost is high: life & function are lost. Rest is strong medicine but it must be used sparingly.

https://twitter.com/batteredoldbook/status/1089141884830785536

"Same management principles over all timescales"

Whether due to internal or external factors, the limits of M.E can vary over years, weeks, and even hours. My response will be the same no matter the timescale. I will try to keep within the safe area and avoid the loss of function that comes from over-exertion and inactivity.

https://twitter.com/batteredoldbook/status/1089141884830785536

"Same management principles over all levels of function"

Likewise, the way I manage my M.E is the same at at any level of ability.

https://twitter.com/batteredoldbook/status/1089141884830785536

"Road closed."

The white channel represents safe passage. A route where you can gain the benefit of exertion and rest w/o risking over-doing either. Sometimes, however, there's no way through. Health & function will be lost. Ok. So be it. We know how to deal with damage. We know how to repair.

https://twitter.com/batteredoldbook/status/1089141884830785536

"Imposition"

The red channel represents a healthy activity/inactivity cycle such as might result from following a work schedule. Unfortunately, this schedule may repeatedly force an M.E patient out of their safe passage. Over time I'd expect a decline in their health & function.

https://twitter.com/batteredoldbook/status/1089141884830785536

"Workaround"

One of the ways I still managed to be productive at a much lower level of health/ability than I currently enjoy was to accept the reality that it was easier for me to work between 10pm and 3am. I have no idea why this was true, but it was.

https://twitter.com/batteredoldbook/status/1089141884830785536

The ideological war within M.E is a waste of time & energy. You wouldn't buy a car without a gas pedal. You wouldn't by a car with the gas pedal fixed to the floor. In the absence of a biomedical magic bullet, modulating activity level seems a sensible way to try to manage M.E.




There is hope. M.E patients often report improvement, sometimes quite considerable improvement. I think their illness may well still exist, but over time they've become better at managing it, responding to it and living with it. I wish all of you the very, very, best of luck.




The Key Point




Hello. I'm not a doctor.

	



"Who to be"

You knew an M.E patient who would not accept personal attacks, nor launch them. You knew an M.E patient who would not accept the invalidation of his suffering due to M.E. You knew an M.E patient who shared what he knew, listened to what others told him and could change his mind.

And you knew an M.E patient who went from limply writhing in pain and crawling on his belly to the bathroom, right to the top of the Brecon Beacons. And onward. Good-bye. :D





https://twitter.com/batteredoldbook/status/1089141884830785536

Oh, and I've been passing on **Rule One** to M.E patients for 381 days, though I suppose counting doesn't really matter any more, for I will do this forever. You must think that's a hell of a long time. Personally, I think that's @ahelluvabird.




A message to people with M.E.

	



"Assistance."

https://twitter.com/batteredoldbook/status/1089141884830785536

"Personal note"

https://twitter.com/batteredoldbook/status/1089141884830785536

Message reads:

"I did this work in the face of a torrent of abuse from M.E patient advocates. I did this work though threatened, excluded and treated like shit.

Whether right or wrong in what I came to believe, I tried my best to help you, and this work therefore represents one small triumph of love over hatred."