Lmst

A disordered activity curve / energy budget is all it takes to create a day filled with cliff edges to fall off of.

I think this is what Post Exertional Malaise, PEM, actually is.

Fix the curve, fix the PEM.

#ReMakeME #MEcfs #LongCovid #timeshifting

A graph of available energy units "spoons" per half hour throughout a 24 hour period.

Disordered and broken, you can see where the energy crashes are.

☂️ Post Exertional Malaise (PEM) isn't just about illness following mental or physical exertion...

Episodes of PEM increase the chances you will experience PEM in the future.

This is called fatigability and it's why pacing (avoiding PEM) halts illness progression in #mecfs.

#ReMakeME

Hmmm. How to get down without bothering the air ambulance...? #ReMakeME

Standing gingerly on triangulation point up Glamorgan Ridgeway.

it's the end of the world as we know it but i feel fine

#MEcfs #MyalgicEncephalomyelitis
#pwme
#MEcfsRecovery
#ReMakeME

Text reads:

Do you see why I ended our conversation and blocked you Simon? @WesselyS
.

We know M.E patients can't report threats to @davidtuller1
and @profvrr.

We know #mecfs activism is violent & immoderate & anti-scientific.

But that's irrelevant compared to an abuse problem in medicine.

Quoted email text reads:

"PS...

I cannot report threats to the M.E Association

Of course, you wouldn't necessarily know anything at all about this Simon. I wanted to report the threats I had received and the (historical) suicidal ideation they engendered to the MEA. Specifically; I wanted to express how deeply distressing and counterfactual I had found Charles' newspaper dismissal of the abuse problem in M.E during this period. Neil would not ask me about the threats via email. I tried to make a simple formal complaint. I gave up after 17 weeks of waiting for the charity to process it

No M.E patient should be so treated by a charity. I believe the M.E Association should close.

James/."

Text reads:

"A #MyalgicEncephalomyelitis patient can come to you and try to say that exercise or exercise treatment harms them.

But the question is undecided. It is debatable. No Dr can prescribe chronic bed rest. It'd be gross misconduct.

But.

When a patient reports threats..."

#Birdsite text to Simon Wessely reads:

"There's no debate. No room to maneuver. No "whoops I didn't get the email".

Simon. Is it possible for #MEcfs patients to report threats and charity misconduct to British medicine?

Or have #pwme been right all along in assuming British medicine isn't playing with a straight bat?"

New rule:

When I am kind I want people to say thank you. When I am clever I want people to stand around being impressed!

Likewise when I am stupid I want people to go "D'uh!". When I'm cruel I want people to kick my ass.

That's normal. That's how things should be.

For too long I've allowed people into my life who hurt me when I'm helping & who help me when I'm doing the wrong thing.

That's toxicity in a nutshell, simple inverted responses.

And I no longer want them in my life.

#ReMakeME

Today:

Hospital. My Sarcoidosis is now **undetectable**! Yay!

Costa. Sandwich and apple tart. Yay!

Walk: Melincourt falls. Yay!

Yep. A good day!

#Photography #waterfall #ReMakeME

The author looks up to the top of the waterfall, huge rocks have fallen obliterating any plunge pool.

Me being particularly stupid.
#ReMakeME

Standing on a triangulation point high up on the Glamorgan Ridgeway. It was windy.

"I will protect my happiness"

That's an interesting one to throw up isn't it?

As part of my recovery and to #ReMakeME after illness I'm composing a list of promises to myself.

"I will protect my happiness" just flowed out of my fingers.

It's a funny one. I know I am naturally happy and bright and friendly and positive, but in recent years I see bitterness, depression and despair have taken a hold of me.

This text suggests I think that external influences are stealing my sunshine. 🌞

Huh.

Rebuilding myself after three and a half decades of M.E.

The devastation is remarkable. The pushback is intense. But the rewards are amazing.

Onward.
#ReMakeME

The author pauses in warm evening sunshine perched on a rocky outcrop up a welsh mountain.

Even climbing the seating up here is hard work.

#ReMakeME

52 things to say about M.E.

An M.E recovery movie. ☂️
#ReMakeME #MEcfs

An empty picture frame on the back of a white door. The frame is long and narrow and contains 52 apetures, each representing one section of the movie storyboard.
In front of the frame is a short sword.

The #MEcfs community opposed my recovery, but it failed to stop me:

I won my health and my life back. 😊

#MyalgicEncephalomyelitis #MEcfs #pwme #LongCovid #ReMakeME

#ReMakeME

Client Info