Post-Truth medicine. 300 words. #pwme
Just because some UK Chronic Fatigue Centres may currently use pacing informally it does not follow that they will choose to keep doing so or will be permitted to keep doing so. As things stand, UK pwme remain vulnerable to official NICE guidelines and these are justified by what Virology Blog calls "sham" science.
True pacing is about giving the M.E patient autonomy. GET, GAT, Activity Management, Sleep Hygiene, CBT "Homework": these are all elements of external control. Medicine can't seem to bring itself to trust M.E patients to manage their own condition, and this is a shame, because we're often much better at it.
The true context for "MEGA" is a shocking mess: There is a glaring and unaddressed problem with The PACE Trial, and British medicine is treating CBT as if it were some form of panacea. Instead of working to classify and differentiate, medicine is working to lump conditions together as "Medically Unexplained". Both people with M.E and their physicians are taught to deny symptoms, and public stigma is stoked by wild research claims and bias.
Instead of working to relieve patients of the burden of M.E, British medicine is working to relieve itself of the burden of M.E patients.
This situation is #notnormal. And every time a charity, physician or researcher pretends that things are "okay" and that we can carry on as usual, they slip one notch further into negative credibility. MEGA is rejected because the CMRC isn't trusted. But the issue is far larger: For Pace to continue to exist an unbelievably large number of problems must also exist within British medicine. From ethics committees through to GPs, from research collaborators to tv doctors: Pace isn't the Titanic, Pace is the tip of the iceberg.