Discussion in 'General ME/CFS news' started by Sly Saint, Jul 2, 2021.
This was very well written. And a good place to have it published!
Great article. My only gripe is this obviously false statement:
Although that's easy to miss for any one person, thousands of people did anticipate it, including some scientists, even left a record of it. This must be recognized, the pretense that this caught everyone by surprise needs to end, it's blatantly false. It caught most in the medical profession by surprise, to the point where far more patients with zero medical training anticipated it than the tiny number of physicians who did. That's something that needs to be addressed in its own right, is a scandal in its own right, and something that needs academic and ethical scrutiny, given the stakes and consequences of that failure.
"Experts shocked when some people who have caught a virus go on to develop post-viral illness".
I bet they get a real surprise when the sun rises every morning too.
As the writer here says many witn ME know more about their illness than physicians do. I understand that can be the case in many other circumstances. Patients become experts in their own area of interest.
Several years into having ME, to be told by a physican my disease means my energy is at 50% of normal was unnecessary, and rather insulting, as I had experienced this for many years prior to my consult. It is so disappointing this repeatedly happens in doctor - patient interactions.
The author also notes the proselytizing done by some in the mental health field to convince those in medicine, and others that ME is psychological condition. Thereby, unfortunately tainting the reputation of pwME.
It should be said that it is very incorrect to view those with psychological conditions as suspicious characters. However, many in society still have this view. Thus, the negative PR spread about pwME has a global affect on our lives.
Growing up lot of us may have heard from our parents and others in authority that it doesn't matter what others think of you. Sadly, yes it does. For example, when a pwME reveals they have this illness, or when one's primary health care provider includes this in a referral letter, the interaction, assistance, etc., may be less than hoped for.
And, how disheartening, and maddening for the writer of this article to be told after 42 years of illness that GET will improve their health.
Absolutely agree. For many, the phenomenon of LH COVID was not a surprise attack. The myth that everyone recovers from these diseases is very harmful.
It is interesting how willfully sightful our society can be about the dangers of some viruses, and recognize the potential for lasting effects. But be wilfully blind in other cases.
Excellent piece. And on Twitter, somebody just had to get his little dig in:
I wonder if MS has blocked the AMA Journal of Ethics? Or Dorothy Wall (someone I've never heard of)?
He literally re-tweeted a (n alleged, dunno if genuine) Feynman quote a few days ago that said something like the difference with scientists is that they accept when they're wrong. There are rocks out there with more self-awareness. Or maybe he is here and is simply completely shameless and immoral. Who knows? Makes no difference anyway, same outcome.
Sharpe is so entertainingly devoid of self-awareness. And his putting himself on a par with Feynman is downright silly.
It's even a regular thing for him. He re-tweets quotes that literally apply to him being in the wrong, sometimes almost excessively so, in that they represent things he does all the time, that define his whole career. Still unsure whether he's Magoo level of clueless or if it's self-promotion, the way Wessely managed to have a reputation as a scientist despite being mediocre at it. Relentless self-promotion is basically their whole con.
I guess the editors of this journal felt they had to do a "both sides", because they just repackaged Sharpe's bunk about functional somatic this whatever nonsense, basically arguing the exact opposite of what this sensible article says. Can't be respectful to patients without adding disrespect for "balance". Weak.
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