As an M.E patients of 35yrs and well-known patient advocate I worked for years and years supporting and representing #pwme and looking for better treatment.

But just for me; I wanted to know where all the time was going. It seemed to take *forever* for anything to change.

As a patient, and so coming directly from that bias, I was most frustrated with medicine. "How could doctors have left me to suffer ?"
But you know: medicine didn't hold me up. In fact they helped, to the point of a meeting with the president of a Royal College within mere weeks.

Do you have any idea how long this (now ex-) M.E patient and advocate had to wait for responses to simple questions from Invest in M.E, Action for M.E, M.E Action, Hope for M.E, Tymes Trust, and the M.E Association?

The answer is a shocker:

It's years.

Same goes with M.E activists: years and years of time wasted waiting for leading M.E community figures to either answer simple questions or to bring their public and private views into line.

Often what they tell you, #pwme, isn't what they told me. And that wastes time.

Tbc; You don't have to take my word for it. You, #pwme, can go ask the MEA, ME Action, Invest, Action for M.E or your favourite activists whether I sent them a question and how many years it took to be answered, if at all.
I wonder if you'll have to wait for your answer too! ;)

If your life with M.E is anything like mine, it is marked out by huge swathes of lost time.

Absolutely lost.

M.E eats life like a black hole.

#MEAwarenessHour

Now. This is the point where this thread gets a bit selfish. I have decided to reject all responsibility for the time the M.E community is wasting.

I have asked in public how I can safely share my work on recovery from M.E.

No-one can tell me!!

#MEAwarenessHour #MEcfs #pwme