Hey, what's with the use of the word "permanently." Nobody could know if such a condition is permanent or not. Your use of the word here defies logic, science and common sense. I don't see any advantage to patients to describing their condition as permanent, and profound disadvantages to doing so.
As soon as Long Covid became a thing, speculation that Long Covid might be "permanent" became rampant in the media. In retrospect, such baseless speculation was likely integral to a grand strategy to fear-monger the public into getting vaccinated.
Frankly, Hip, I believe use of such a word is irresponsible. Such language can be expected to adversely impact the mental health of patients and reduce motivation to explore treatment options.
If you knew anything about ME/CFS history, and the downright evil politics involved in ME/CFS, arising from corrupt multinational insurance companies who manipulated the narrative behind ME/CFS, you would realise you are on the side of evil here.
In order to avoid paying out disability support to very sick patients with ME/CFS, international disability insurance companies starting promoting the false narrative that ME/CFS was not a real physical disease, but an imaginary "all in the mind" condition that was just down to the poor attitude of patients. The idea was pushed that if ME/CFS patients made up their minds to get better, they would overcome their illness, because it was just a psychological condition, and could be overcome by the right attitude.
They also promoted the poisonoud idea that ME/CFS was not a lifelong chronic illness, but something patients would be expected to recover from in due course. Therefore any patient who remained ill was either faking it, or had poor attitudes towards life.
This narrative was introduced by insurance companies the early 1990s, because in the 1980s there was an inexplicable and incredible 8-fold rise in ME/CFS incidence, and these companies may have gone bankrupt if they had not invented this scam.
These insurance companies paid many psychiatrist to promote this idea that ME/CFS is psychologically caused. Once this incorrect psychological view of ME/CFS became accepted in the medical world, research funding for ME/CFS dried up, so this toxic idea had a very deleterious effect on the whole of ME/CFS science.
You are promoting the same malicious and poisonous narrative, that ME/CFS is something that is not a lifelong disease, but something that people will automatically recover from. If you posted your views on ME/CFS forums, you would be denounced by many ME/CFS patients, who are sick people trivialising their illness, and sick of people saying that ME/CFS is not as serious as other chronic illnesses such as Parkinson's or multiple sclerosis.
Also, science does not support your toxic views: there are studies showing that recovery from ME/CFS is rare. Therefore it is a permanent disease.
But as usual on this forum, you were not aware of the salient facts, this ME/CFS Machiavellian politics history, so you are not aware that you are promoting a toxic idea.
I appreciate that long COVID patients that have the ME/CFS form of LC might not like to hear that their disease is permanent, but we live in an adult world, where you have to face the medical facts.
And by the way way you are also wrong in assuming that knowledge that ME/CFS is permanent will prevent ME/CFS patients from seeking treatments or experimenting with drugs and supplements. I am in several ME/CFS forums where there is constant intense experimentation with treatments. And sometimes patients do find a treatment which does substantially improve their condition.
Indeed, I don't know any group of patients who are so determined to improve their health as ME/CFS patients. I am proud to be part of this ME/CFS community of patients who are so pro-active and enthusiastic regarding experimenting with possible treatments.
Note that the POTS form of LC can more easily be improved or cured: POTS responds well to exercise, and if you do a LOT of exercise regularly for a year, you can overcome and cure POTS. I know people who have done this.
Edited by Hip, 08 February 2024 - 04:55 PM.