Thread by @GnomesChainey

I am getting quite fed up with doctors or people in medical professions telling people with #MECFS that it is our responsibility to calmly educate *them* on our illness, rather than get upset when they stigmatise us on public platforms with nonsense about ME being psychosomatic.

The oft repeated line: “You won’t get anywhere by attacking them. Just be reasonable and give them the information they need,” is actually maddening, and not just because it doesn’t actually work that way.

We, with our energy and cognitive impairments, are expected to take the time to politely educate people with *medical degrees* on our conditions after they’ve just publicly added to our collective trauma by maligning us from public platforms.

Not only do they have far more capacity to educate *themselves* purely from a health/stamina perspective, they are literally being *paid* to be knowledgable about human health, usually to the tune of 6 figure salaries, while the majority of *us* can’t even work.

A lot of them - GPs, psychiatrists, occupational therapists, immunologists, neurologists, gastroenterologists - are also the professionals that *we* get sent to. It’s literally *their job* to explain to *us* what the latest research and treatments are.

To add insult to injury, they consistently get the benefit of the doubt. They can publicly malign us, repeatedly, with all the prestige and authority of their professions, even *after* they have been sent links to the science, and people still assume they’re acting in good faith.

They are not chastised for failing to do their jobs well. They are not to blame for speaking publicly on topics they have not actually bothered to research. They are not held to the standard of “do no harm”.

Meanwhile, the people living through the trauma they have caused are held to absurd standards of civility in the face of their actions. If you get angry “you’re just hurting your own community”, “you’re not helping yourselves”, “they might listen if you just explained calmly”.

CW: Abusive content.

This was the corker that happened yesterday in response to someone with #MECFS actually trying to point out the double standard on civility. Apparently the new standard is to work so hard to communicate in *acceptable* ways that you literally die doing it.

Our anger and hurt, if we dare express it, is also used to frame us as abusive when the well-paid, healthy, medical “experts” with massive platforms cry victim. *The people I hurt are being hurt where I can see them!!*

(For the record, literally no one is mad at Gerada for talking about her lived experience of COVID. She went to great length to emphasise, on TV, that exercise is good for people with *all* conditions.

Given her long history with the ME/CFS community, if she did not know full well what she was doing, and the impact it would have, it was not through a lack of direct previous experience or attempts by #PWME to educate.)

This nonsense about ME/CFS being a state of mind, curable with exercise, psychosomatic, a choice ... has resulted in medical neglect, PTSD, removals of children, involuntarily sections in psychiatric wards, denial of disability supports, abject poverty, and yes, death.

At what point exactly are we *allowed* to be publicly angry at the people who perpetuate this?