[cjbgkagh]

I think people are dismissive due to the expectation that if it really was that bad they would be hearing much more about it. The idea that something so bad affecting so many people could be largely ignored is incomprehensible to many people. It also didn’t help that ME/CFS was falsely maligned for many decades by horrible scientists in the US and UK.

[lamontcg]

> I think people are dismissive due to the expectation that if it really was that bad they would be hearing much more about it.

Most people are also still likely to not talk about it and hide it from everyone else.

Makes me worried about when we're going to see a strong 'backlash' against long COVID where people start getting very publicly getting busted for faking it.

If 90% of people hide the condition and try to tough it out and don't talk about it then it increases the public rate of fakers by 10x.

[cjbgkagh]

It does appear to be a 'get out of anything' trump card and the fact that it chronic and can wax and wane does mean people can repeatedly reuse the same excuse - I can see why it would be attractive to fakers.

I have lifelong ME/CFS as a comorbidity to my genetic condition hEDS, it got worse in my 20s and then significantly worse post covid vax. I'm a shut-in so it appears that I have thus far avoided catching covid the virus. The pericarditis from the vax was bad enough there were a few times I thought it was going to kill me. There is very little benefit from telling people about it, you almost entirely only get gaslit from doctors and everyone else.

I'm a key man risk on some major projects and if people at work knew I have ME/CFS I would lose my livelihood. I'm not even sure if I could get government disability. When I see homeless people I think; there but for the grace of god go I. I know people in the hEDS community who have been encouraged to do voluntary euthanasia in Canada so that seems to be the new solution to this inconvenient problem. Just recently the first voluntary suicide in South Australia was a young lady with EDS. I manage with the help of a lot of black market / gray market non FDA approved medication and for some possibly related reason I'm freakishly good at programming so a few good days can make up for a lot of bad days.

The combination of people hiding the condition and fakers promoting it means I completely understand why many people think it's fake. It's the doctors that I'm most disappointed in.