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. - ThreadSky

danwyke.bsky.social • 612 days ago

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.

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delightw2023.bsky.social•612 days ago

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.

diamondqc.bsky.social•612 days ago

That's terrible & they deserved better.
The point about ME/CFS is that being gaslit that our symptoms are psychosomatic is ridiculously common, largely due to the absence of any reliable biomarkers, whereas doctors (and society generally) take cancer seriously & most cases are detectable on testing.

delightw2023.bsky.social•612 days ago

I know that's true of ME/CFS but many ppl have a idealized notion of what happens even when you get a cancer dx. Many many illnesses have no biomarkers and ppl go through similar experiences. You don't know other's experiences. Please stop telling ppl how easy they have it.

susankiddie.bsky.social•612 days ago

Cancer survivor who experiences ME/CFS here. The idea that cancer patients don't experience medical gaslighting is hogwash. Ask me how I know.

delightw2023.bsky.social•612 days ago

I have an illness identified in the 1800s that still has no identified biomarkers and now I have myeloma. Let's not make this a competition and just support each other.

exceedhergrasp1.bsky.social•612 days ago

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.

jessikafe.bsky.social•612 days ago

And if you do prepare for weeks, take all your existing energy and the "some" to describe, they do not believe you because you seem coherent.... 🤬🙈😭

mserenity.bsky.social•612 days ago

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.

thisismetweety.bsky.social•612 days ago

I do think that this is (or should be) the next challenge for Evidence Based (Informed) Medicine. A movement that was supposed to guard against quackery has inadvertently marginalised the patient.

mserenity.bsky.social•612 days ago

The NHS isn't just evidence based ... It's evidence + economic value based. So everything has to have been evaluated on a cost/benefit basis at a population level before it will be approved for individuals, except in very rare circumstances. It's awful and means people die when treatments exist.

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