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!
