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I’m still a far cry from my former self, but everyone around me has seen the positive difference that unfucking (at least part of) my hormones has made. But hey, maybe that’s all psychosomatic, including the swollen lymph nodes that for a year were visibly protruding out.
People like accusing others of faking their symptoms because it allows the accuser to avoid moral injury from doing nothing to help or even just the discomfort of witnessing the suffering of others with empathy.
In future decades we will hopefully be more mature around these subjects.
e: To be clear, the comment about AIDS was about the era of patient advocacy that it engendered.
You don't die from EDS, unless it's the vascular type, and even then it's not the EDS but the catastrophic rupture of an artery (abdomen or aortic which has weak collagen due to EDS) that causes the death.
With a prevalence of 1 in 50,000-200,000 you can't fault the doctors for not seeing it or just branding it as very unlikely, of course the accusation of faking an illness should not be tolerated.
Some physical ailments have psychological and emotional side effects. Depression may be rooted in physical ailments negatively impacting mood and brain function.
Are people just this bought into mind-body dualism like two centuries later?
Except for phantom pain, I think it's generally best to assume pain has a physical cause and pain negatively impacts mood, not the other way around.
And I've had phantom pain. I think even there, it's likely a physical cause, but mirror therapy is still known to help for some cases.
I have a genetic disorder that was diagnosed late in life but I knew well before I had a proper diagnosis that I had frail health. I'm cautious and worry about things that others don't worry about because history proves it's a real problem for me, more than average.
The prevailing hypothesis is a cross reactive species of auto antibodies to the Angiotensin II Type 1 receptor. I unfortunately have not been able to receive a test for this antibody; however, I did test positive for Alpha and Beta adrenergic autoantibodies along with Muscarinic M2 and M4 autoantibodies targeting the hippocampus of my brain. I managed a borderline positive titer for anti TSHDS antibodies, which are correlated with small fiber neuropathy.
Normally, I do not comment, and I specifically made an account to type this message while holding a laptop over my head, a difficult task as you can imagine. The medical community is moving too slow in response to post Covid syndromes. I and all the other people affected with neurologic complications would be most appreciative if you all helped review literature on the immune system. It is an awful lot like debugging code! Right now, I read a section about Janus Kinase and TNF alpha. I believe a medication like baracitinib would do a wonderful job mediating mthe inflammatory response. ICU covid patients typically died from TNF alpha, Interleukin 6, and Cysteinyl Leukotriene 1 mediated by 5 lipoxygenase synthesis from arachidonic acid. All of these biomarkers are elevated in long covid patients. Lastly, covid can actually cause a reactivation of Epstein-Barr and HSV1. Telemisartan is an Angiotensin receptor blocker that can downregulate ACE2 levels in the body and demonstrates a prophylactic effect against covid.
If you read this far, I am deeply appreciative. More so than monetary donations, I would be grateful if could spread the message about this disorder.
I cannot say the ratio, but I am sure I have seen with my own eyes how it drains parents and siblings.
It was more what looks to me like psychopathic tendencies:
Eventually she was caught in all kinds of lies, because she lied so much about so many other things as well that once her sisters started talking with each others they realized it quickly.
As far as I understand she had been telling different stories to each of them and to her parents.
The alternative to this is burying your head in the sand and saying we should take everyone at their word. This would result in a WORSE outcome for people that actually have the issues you're so worried about because the data would be skewed.
Maybe you ought to do the thinking, instead of emotionally reacting?
You're making an objectively FALSE statement. There is ZERO possibility that there's no person in the world faking CFS.
Thanks for the laugh. It's hilarious that you tried to accuse me of an emotional argument.
You can drop the strawman bullshit as well. I never gave a number on how many people are faking it or just being hypochondriacs.
This is what I said:
> collectively, we don't know enough about CFS or the human brain to make definitive statements like 'a large number are faking it.'
This is what it means:
We don't know enough to quantify the ratio of fakers.
'A large number are faking it' is a type of quantification: a ratio. In this case, a descriptive ratio that uses the words "large number" instead of literal numbers.
You do realize there's an actual mental disorder where people fake being sick right?
The only person confused here seems to be you.