Thread by @FvRhijn

You know, we tried. We tried gentle exercise in bouts of 30 s and resting after. And yet, people keep telling us about how exercise is beneficial. Will you ever just listen to patients? Find a cure for PEM and the secondary deconditioning isn't an issue anymore. 🧵

It's just so super patronizing. I learned to run by increments of 30s. I know how to train and what DOMS feels like. PEM is a totally different story. And once again, for those in the back, the decline in function was sudden and not gradual!

I really thought that there was now a consensus in the field regarding exercise training in PEM, but apparently people keep trying to push their outdated ideas.
And once again: the dsq is NOT a good measure for PEM. Check it for yourself. Does this describe your symptoms?

(the full definition of PEM is: increase in symptoms or new symptoms 12-72 hrs after physical or mental exercise. The dsq doesn't capture the flu like symptoms, or that you can feel totally ok during and right after exercise, but like crap after 12-hrs.)

So of course this muddles the data. There are lots of people who will score 'PEM' on the dsq but don't have the 'increase in symptoms or new symptoms 12-72 hrs after physical or mental exercise.'. and then it might look like exercise is good for PEM. 😭 Garbage in garbage out

WE NEED BETTER QUESTIONNAIRES. why do we keep using flawed instruments? We need to design and develop better ones in close collaboration with patients. (The funcap is a great example of what happens when you really take into account what patients actually experience)

Oh and before I forget, I had pretty mild ME when I started the exercise program outlined in the middle column, but after 5 weeks of that, I was basically housebound.