Inadequate medical training and the lack of a biomarker put pressure on #MECFS patients to describe how they feel (mostly to be disbelieved anyway). I don't recall my mum, for example, having to rack her brains to describe what having cancer was like before receiving chemo.

Ppl have cancer and are not believed bc it's not showing up on labs. It can take yrs. It's happened to 2 friends of mine. They both fought yrs to get the correct dx and treatment.

And it doesn’t help. Clinicians aren’t trained to recognize patient-described symptoms. That’s why we used patient language on the PEM diagram in the Mayo Clinic Proceedings paper.

I think part of the problem is the way the NHS practices medicine - using only standardised guidelines, very little specialised blood and imaging tests, and if anything veers from those guidelines offering no individualised care. Bodies don't fit into boxes and so many seronegative conditions exist.