Covid-19 - Psychological research and treatment

I think she needs to go back to being JE's trainee.

From her presentation -

I know i shouldnt less this ignorance upset me but the cold cruelty of it cuts deep.

All that i have lost, the horror and pain of being ill & disabled, the daily griefs of being excluded and unable to live as the person i truly am, and the ongoing frustration of being forced to have others do the things for me that i want to do, having to wait for someone to 'take' me out as if i were a 5 yr old.

These modifications to my home which make it look awful & cost me a fortune, this having to try to live on 1/4 of what i was earning 20yrs ago.... oh yes, they are such 'gains'! She thinks having to have a carer is nice does she? Having to be helped out of the bath, naked & vulnerable, by a complete stranger... she thinks she'd enjoy that does she? I'd like her to try it.
And "the benefit of 'social mystique'" & ''attention from friends", which in reality is actually more the bereavement of being dumped & rejected by several people I loved, because of stigma and misunderstanding caused by people like the author.... and the ongoing & continuous distain & derision everywhere you go - being yelled abuse at in the street ....
oh yes i just love the 'attention', it's so nice! one wouldnt want to "surrender" that, would one?!

And I'm not even completely bedbound, tube fed......
Witney Defoe needs an 'honourable excuse to surrender the trappings of disability' does he?!!! And if he doesn't take it then that must mean he doesn't 'want out'.

Representing all that we have to endure as 'the trappings of disability', as if they were these lovely things, like the 'trappings of wealth', is disgusting. The contempt & cruelty of it is breath taking.

Edited - to remove something possibly identifying

 

@JemPD.

I think this goes beyond cruelty caused by ignorance.

This is taunting and mocking the disabled. It is considerably worse than the type of bullying behaviour that we specifically teach kids not to do, at least they don't know better until they're taught.

This is a person who is not only educated but, working with @Jonathan Edwards, has presumably spent time with patients who suffer from painful & debilitating conditions and completely failed to grasp any understanding of how that suffering actually impedes both the quality & function of they're daily lives.

I doubt this person is stupid, therefore I can only conclude this is wilful, active cruelty.

Given the additional harm caused by such wilful disinformation in my opinion it is tantamount to hate speech. If you spoke of any race or religion in this way there would be outrage.

 

Ugh.

https://twitter.com/user/status/1312449490549239809

 

The guru label is a good warning sign.

 

Do you think he knows that? I begin to think he may be mischievous. Perhaps it is wishful thinking.

 

I don't know. People inside of medicine can have a different perspective to many of us here.

 

There was also an interesting question mark once. If I am wrong he really should do more literary analysis. I doubt that he needs to.

 

My impression is that Garner has no idea that to call someone a guru in this context is to display naivety. Lynne Turner-Stokes isn't really a guru sort. She is very matter of fact and went into rehab because she was unimpressed by the gurus in immunology (she told me that at a job interview). She may well have become a guru in the eyes of people who think you should have gurus in medicine but it all seems a bit sad.

After all, as pointed out by others. There is no actual evidence re Long Covid yet, not even a suggestion that anyone has any reason to suggest any 'rehab' at all.

As someone in medicine I think I have a pretty similar perspective to people here! But maybe I don't count.

 

I agree that this is prejudice against people with invisible chronic illness disguised as "wanting to help". No you don't really want to help, you're frustrated and letting it out on vulnerable patients who cannot fight back. The real difficulty is admitting that you don't know and don't have answers to everything. And "don't know" actually means don't know, not knowing by exclusion it must be psychosomatic as medics are erroneously taught.

It's difficult to imagine that anyone holding such views can actually help the people this is meant for.

 

The problem is that such cases may exist. The possibility cannot be discounted. But one cannot avoid the problem by saying that because there maybe some false cases there are no genuine cases. The analogy is that there may be some counterfeit coins in circulation, but there must, at least at some time, have been "genuine" ones. It is the job of the supposed expert to discriminate between the groups.

Those who are not up to the task, and who see no way of ever being up to the task, should get out of the business.

 

Serious chronic illness is a massive loss, it brings deprivation and takes away what makes life worth living. It's a lot of emotional labour to get over this. And here we have complete idiots fantasizing about how patients are engaging in some elaborate (self) deception to exploit others, or whatever other weird ideas these people come up with.

 

I'm still so confused by this. It's assumed as fact, almost to the point where considering not doing so is unimaginable. From the very second it's as if a giant bat-signal saying "REHABILITATION" was shone in the sky, brighter than the noon Sun. It's a visceral sensation that this is what needs to be done.

Yet no one has actually presented any evidence that this is needed, the assumption seems as axiomatic as the need to breathe. In cases of pneumonia where breathing rehabilitation seems targeted and effective, sure. Same for anyone who receive ICU care and actually deconditioned in a way that is consistent with the linear passage of time. But that would suggest that most people haven't unanchored from the original trifecta of old man with breathing difficulties and fever developing pneumonia, that it applies to everyone.

Seems like people are just reacting, but not really assessing whether the initial reaction made sense. Quite a contrast with acute care, which has made enormous progress in lowering mortality.

 

It's the part that says patients aren't looking for a cure that gets me. It literally 100% is the only thing 100% of us care about. The best case scenario is that and nothing else, a quick in-and-out. We can settle for less until then, but this is as straight up as someone who walks to a restaurant, cash in hand, orders food and gets told that, no, it's not really food they're here for, must be something else. Then the empty stomach just starts growling in response, along with a simple statement of "nope, just hungry, here's cash". And still, nope, glazy eyes. No food for you, it's not what you actually want. At least in this scenario you can just walk next door where people aren't bizarrely refusing the very straight-up transaction of money-for-food.

This idea is old, I've read texts dating all the way back a full century saying the same. It was 100% wrong then, it still is 100% wrong. It's extremely not normal for professionals to be 100% wrong about the most basic functions of their work. That is the difference with experts. They will not always be 100% right but they will never be 100% wrong. And yet here we are. Stuck in this nightmare with people who have no idea what they're doing, why they're doing it, and cannot deliver anything relevant to their obligations because of it.

 

Saying the things she does should result in losing her job. It's no different than walking down the burn victim ward and talking about how these patients are doing it for secondary gain or because they enjoy attention.

 

Why the heck is Paul Garner promoting that on twitter? Isn't he the doctor who has long covid and has realised how dreadfully ME patients are treated?

 

he keeps popping up on countdown before i knew how he treats kids with m e i used to find him amusing i now press mute every time he speaks .

 

Never forget the main BPS skills are persuasion and manipulation. They are genuinely good at this. And nothing else, but still, relentless self-promoters selling easy solutions to complex problems that they simply reframe as easy alternative problems.

It's always vague generalities spun with positivity. Too vague to be disputable, or quantifiable. What harm can possibly come from that? That comes after and never gets recorded. A perfect record. It's easy to be perfect when you write the exam, grade the exam, then rate the quality of the grading of the exam. All without oversight or accountability.