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Things I would tell my 12 year old self about M.E.

I became ill with M.E after EBV and a series of upper respiratory tract infections between the ages of 11 and 12.  I am now 47.  I was ill with M.E for ~35 years but am better now.

If I had a time machine, or even a pocket-worm-hole these are some things that I would make absolutely certain to tell my 12 year old self.

  • The symptoms of M.E are reversible.
  • You get better.
  • There are no medical breakthroughs during your illness. 
  • You have to deal with M.E mostly on your own.
  • Do not waste energy teaching physicians how to treat M.E.
  • Stay near people who love you, keep away from those who wish you ill.
  • Both exercise and rest are necessary for human health and for your recovery from M.E.
  • Do not trust or waste your time with the major British M.E charities.
  • Recovery from M.E isn't an all or nothing affair, the gains and regains add up.
  • Recovery from M.E is slow at first but becomes faster and faster.
  • Appropriate treatment for M.E may vary over the course of recovery.
  • Avoid doctors who attack your character without reason or evidence.
  • Avoid patients who attack your character without reason or evidence.
  • Doctors report abuse from M.E patients.  They are not lying.  Check they're ok.
  • For you, fatigue and pain may be considered to be part of the same spectrum. 
  • Nurture, protect and grow your recovery.  It is a precious thing.
  • Don't put any energy whatsoever into M.E patient activism.
  • Do not interact with M.E patient activists.
  • Challenge the abuse of all researchers, doctors, journalists, and patients.
  • M.E is associated with extreme disturbance to both activity levels and sleep. 
  • Fix your routine before you try to re-energise the whole system.
  • At all times avoid over-exertion and under-exertion.
  • Listen to your body. It will ask for rest, of course, but it will also ask for exercise. Listen.
  • M.E is a very serious illness indeed.
  • Walk away from *anyone*, friend, family or physician who denies your illness.
  • Help patients while they are isolated and mistreated, leave them when they abuse others.
  • Avoid long and short term stress.
  • Don't ever stop trying to get well.

I expect I'll add to this list as time goes on.  That way it'll be ready for when I've finished building the time machine.

And, come to think of it, maybe I should wait until I've finished this blog, then I can just tell him how to get better.  Yeah, that'd save a helluva lot of time!