I am going to have a go at social media. I do not know if it will be successful or if anyone will be interested. I would rather avoid the topic of #MECFS and focus on other interests, but it continues to destroy my life and if I can help raise awareness then perhaps the suffering is not for nothing.

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I know I am preaching to the choir here. I just wanted to express a few thoughts about how the phrase "avoiding PEM as much as possible" can be weaponised against pacing. We saw how APT in the #PACEtrial used an inappropriate 70% rule which Leonard Jason has rightly criticised, PMID: 28805518.

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I was forced to do absolutely nothing because of very severe #MECFS for 9 years, but at least now I can read and write a little. People with ME/CFS have their boundaries tested constantly just trying to live and we naturally do more when we are able to. Activity phobia in ME/CFS is BPS folklore.

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Bluesky is not properly showing me all my replies I posted to @tomkindlon.bsky.social about #Pacing for #MECFS so I am creating a new thread and tagging him here. 🧵👇

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1) This factsheet for medical professionals received a lot of response and discussion. Some people felt it was dismissive of several findings in the ME/CFS field, so I want to give some more background and context.

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