MEA Website Survey: Physiotherapy and ME | 02 July 2019

If you can take it, massage is excellent for ME. It has kept me mobile (not walking much but just able to move). My body wants to curl into a ball as all my muscles tighten up. It also helps with the pain.

I wonder if we would benefit from passive movements to stop muscles becoming spastic. There are machines that are used for MS. That might help us if they could be hired out for a trial by physios.

In people who are not so badly affected by POTS, like me, I sometimes think that a fully supportive hoist that kept me upright for a few minutes at a time might stop it getting worse. If physios truly understood ME and the physiological consequences in a pragmatic manner maybe they would have some suggestions.

 

This! Any PT needs to take account of the level of severity. And read Rowe's paper that concluded that even passive neuromuscular strain (passive leg raises) can result in PEM

 

Yes, not every person can do every therapy, and it would always have to be modified based on severity and possibly comorbidities.

That being said, deep massage gives me PEM. A very careful massage helps my muscles not to stay cramped. Uncramping them does help for a while.

Also they can do very light range of motion activity, such as spread the balls of the feet that don't get spread when laying down, nor walking slowly.

If they have listened carefully and they ask you to report back on any adverse effects during treatment or that happened afterwards, they can learn what is helpful or not. They can also feel how things are going in your muscles and tendons, if they have enough training. (I will never see someone who doesn't have at least a master degree, after seeing a lot of different people for an injury a long time back.)