Hello there. I'm afraid we have a bit of a problem. The world is not quite the same as it was even yesterday. If I carry on at my current rate I will be too late to help M.E patients avoid what's coming.
Despite activism's best efforts the ideas of CBT(Challenge to illness belief), GET and the necessity of exercise are all still available to M.E patients. Their use is very well described within the "PACE Trial" notes.
Likewise, their opposites, the patient responses of Rest, Pacing and Acceptance(Challenge to illness disbelief) are still relatively well-known and can be found via M.E charities.
These ladders can be lashed together by any M.E patient who wants to escape their prison.
However. There remains a missing rung:
This is the key point in the climb. This is point where the rules change. This is where the emphasis on rest changes to an emphasis on exercise. This is point where CBT(Challenge to illness belief)/GET becomes the road ahead.
Look at the diagram I put together in case Long Covid had anything to do with M.E:
Dealing with M.E is very difficult. It is a hard, disrespected, life and society has a tendency to write-off M.E patients as simply a load of people lying in bed, wasting away. But what if they're not? What if, instead of doing nothing, they are unconsciously and blindly correcting a genuine problem? :)
To correct a shattered activity/sleep cycle you would need to be able do what you wanted, when you wanted. You would need to isolate yourself from the wider world and its rigid imposition of wakefulness, work and bed times. You would need a mental model of your energy budget or "spoons". You'd need to be able to pace yourself and you would also need the ability to exert and to quickly rest whenever necessary. These are all things that M.E patients try to gain for themselves.
Finally, if you wanted to get better, you'd need very good judgement. You'd need to be the sort of person who just knows how to look after a human body. Bad judgement will only shatter the activity/sleep cycle further as indeed will dogma and refusal to change your mind about exercise.
Think of this way: I was a patient advocate known around the world. I already knew the patient view of M.E like the back of my hand. What I needed was to pretend in mind to be a doctor and see the issue from their point of view.
And I guess I needed a jolt. I needed to see all those M.E patient activists deliberately target and deliberately hurt M.E patients and then, I needed to see them, with full knowledge, cover it up.
As the M.E charity founder told me about working with those who bully M.E patients:
"It's just business, James. Business".
It all took me too long and now, even if I were to double my output it would not be quick enough to help. Change takes time. It took me too long.
I am so sorry. You do not have 7 years. They hate ill people. Of course they do.
Get well soon.
Love,
James/.
