“Will I ever get better?” is the ultimate question that begs for any rays of hope amidst desperation and insurmountable suffering. Complex and disabling chronic illness that has no effective treatment is a force to reckon with: it destroys lives, decimates dreams and demoralizes the most psychologically strong individuals.
“Yes, you will.” I answered cautiously when the patient asked me that question after multiple treatment failures. As physicians, our job is also to keep hope alive when treatments fail—hope that’s rooted in clinical experience and science that promises new treatments with ongoing clinical trials, not false hope or wishful thinking.
How physicians communicate with patients and their families is essential to what the patient absorbs and internalizes about their illness, how they view their future and what they tell themselves about their altered life and hope to get better [
10]. The hope to get better is the key to maintaining mental health and not letting it devolve into an existential crisis.
This completely misunderstands what sick people place our hopes into. False hope has essentially destroyed the person I used to be, it has caused major trust issues with, frankly, literally all of humanity. However long I live I will always have a default position of distrust for anyone holding even the tiniest level of power over me, whether they are experts or not clearly makes no difference, they can fail at it just as hard as anyone else. This includes the total failure to capitalize on Long Covid and the unique opportunity it represented, as well as a personal experience that ultimately ended up being the most cruel thing to have ever happened to me.
What she talks about here 'works' if the patient improves in a relatively short time to the point of near or total recovery, it tops up the will to live until life returns. But when it never returns it only ends up being taunting, a cruel joke that adds insult on injury. It simply accumulates as a toxin that gets more and more poisonous over time.
This is not the way to solve any problem, it's literally just cope. Problems get solved by being faced head on at the scale that they need, which has not happened here, is in fact systematically rejected. This is why most patients are totally hopeless: we can see what they do, it doesn't matter what they say, they're not actually doing what they say because there is a near universal hostility to even think about doing anything to help us.
Ignoring the underlying systemic etiology of neurologic and psychiatric symptoms will not result in meaningful and long-lasting management strategies: it’s one of the major reasons why all forms of psychological, behavior and physical therapy is often ineffective in a majority of patients with post-acute infectious syndromes [
11].
At least most of the rest of the paper is somewhat sensible and does not leave much room for the traditional myths, although still too much to my taste, it remains that 'hope as treatment' has been totally co-opted by the ideologues, and as such they make anything to do with hope toxic poison, they essentially nullify the very concept by using it as a weapon against us.
This means there can be no rational legitimate discussion of hope, because it will always be used against us, they will simply use anything to pursue their ideology and force it on us. I never even want to hear a damn thing about hope in the context of this illness, and not for the rest of my life, however it goes. Just as no matter what happens, I will always completely reject anything that even remotely hints at anything 'biopsychosocial', it's completely toxic junk.
Historically, patients with post-infectious syndromes have been misdiagnosed with somatoform or psychological disorders due to the absence of abnormalities on routine testing. Recent evidence demonstrates physiological mechanisms underlying these conditions, underscoring the need to avoid misattribution and ensure appropriate care.
Also, a mild annoyance as it has several instances in the paper, talking about this in the past is very unhelpful. It's not just still happening, it's still almost universal, and it will not be stopping any time soon. This is simply reality avoidance, and I assume it is framed this way because it sounds more hopeful. If it has to be framed this way to avoid angering other physicians, well, it just shows how totally hopeless the situation is, and that makes framing this the wrong way even worse.
