BPS attempts at psychologizing Long Covid

Let me guess, one of the sure signs that you're suffering PTSD and not actual biological illness is that you don't believe what you're suffering is PTSD.

Always never amazing that someone in psychology is so very concerned for people's well-being that they must make psychology the answer. Rescued again from the evil clutches of actual medicine. Oh joy.
 
rvallee said:
Rehabilitation Exercise and psycholoGical support After covid-19 InfectioN (REGAIN)

https://fundingawards.nihr.ac.uk/award/NIHR132046


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rvallee said:
So it seems like donkey medicine, assumptions-based evidence, has been normalized enough to now be a standard, with unblinded trials with no objective outcomes and vague goals.





Evidence-based medicine is a disaster, a gigantic loophole for low-quality science to launder people's personal opinions.
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Wow, the PI seems to really think his trial is "fully blinded". What is his understanding of blinding?

And this is "How will we know if the treatment helps":

"How will we know if the treatment helps?

"We have spoken to people recovering from COVID-19 and their families. They told us that less shortness of breath, tiredness and worry, along with more confidence and better health are important. They also told us that they are worried about how slow their recovery has been and that there has been little support to help them get back to a normal life.

"We will ask people to fill in quality of life questionnaires a over 12 months. This will help us to find out if our supervised, on-line, exercise and support programme does or does not help people recovering from COVID-19 and if it represents good value for the NHS."

https://fundingawards.nihr.ac.uk/award/NIHR132046

I think this is an example par excellence of how the concept of patient involvement in clinical trials and studying outcomes that allegedley matter most to patients can be misused to circumvent any sound trial methodology: No need to include also objective measures as primary endpoints (edit: based on cherry-picking from what patients said.)

How did this get funding?

@Jonathan Edwards @Caroline Struthers @dave30th
@Hilda Bastian @PhysiosforME
 
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Hutan said:
Just wanted to point out that the quality of the acronyms is really slipping. I guess ReapSac didn't have the necessary positivity, but taking the G out of 'psychological' smacks of desperation.
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Yep, they set the bar high with Positive Attitudes Change Everything. Though they did have some trouble getting the actual components to fit: Pacing, graded exercise therapy Activity, and Cognitive behaviour therapy; a randomised trial Evaluation.
 
They told us that less shortness of breath, tiredness and worry, along with more confidence and better health are important. They also told us that they are worried about how slow their recovery has been and that there has been
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That agenda doesn't look too hidden to me.
little support to help them get back to a normal life.
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Which would require a therapy that actually works.
MSEsperanza said:
I think this is an example par excellence of how the concept of patient involvement in clinical trials and studying outcomes that allegedley matter most to patients can be misused to circumvent any sound trial methodology: No need to include also objective measures as primary endpoints.
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It's a business & political model, not a scientific one.
 
This appears to be a self-gaslighting episode by... the director of the Cochrane Sustainable Healthcare group. Incredible. The doublethink and obvious cognitive dissonance at reconciling a delusional worldview with a personal experience that invalidates it is... fascinating. This person hurts themselves in confusion. Doesn't necessarily show from parts I quoted but the author has Long Covid.


Minna Johansson: Caring for patients with long covid—a compassionate tightrope

https://blogs.bmj.com/bmj/2020/10/0...ts-with-long-covid-a-compassionate-tightrope/

After the initial outbreak of covid-19 cases and the surge of deaths in many countries, another painful consequence of this viral infection has become increasingly apparent: persistent illness in people with initially “mild” symptoms. Many have shared frightening testimonies of a variety of persistent symptoms, such as intense brain fog, fatigue, muscle weakness, breathlessness, and difficulties concentrating.

As is often the case with symptoms that lack a clear biomedical explanation, many stories from patients reveal a blatant failure of the healthcare system to respond compassionately to this uncharted experience of suffering. Too many patients feel dismissed, disbelieved, and ignored.
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How would it help me to know that my cerebrospinal fluid is low in some substance, or that an MRI shows structural changes in my brain, if there is no available treatment? Would this mean that my symptoms are less reversible? By what merit would a measured “cause” trump an unmeasured or even an unmeasurable one? And do I need to focus on “the cause” in the first place for me to get better? I worry that a desperate search for the cause could lead me into a downward spiral of medical explorations that require continuous attention to the variations in the expression of my symptoms.
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I have no idea how those thoughts are reconciled. It's widely known that developing treatments is always based on trying to address a step in whatever pathways cause the disease state. Other than out of sheer luck, I don't think it's ever happened for an effective treatment to be developed without targeting the cause. Really bizarre. It is precisely to make treatments available that we do research. It is how it literally always works.
This illness can also be understood as a maladaptive response to a level of psychological stress that exceeded my ability to cope. Like many of my colleagues in clinical practice and research, I have worked too much during an extended period—and was probably close to burnout before becoming acutely ill.

Lastly, my experience can also be understood in existential dimensions: how will my respect and belief in myself be affected by reduced cognitive ability if my sense of value is primarily built on my intellect? Further, there are inevitably social dimensions to this—will, for example, a biomedical diagnosis relieve me of social responsibilities and expectations that I feel unable to live up to?
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This is genuinely the first time I have seen the imaginary thought bubbles invented by BPS charlatans actually be expressed by a patient. Fascinating that those fake dialogues have been so internalized that even though they are utterly fake, this person cannot do anything but think about them, only because it is a popular trope from the physician side of things, not because it is relevant to the patient's needs.
All of these explanations offer plausible contributions to a holistic understanding of the illness. And a reasonable approach may be that each individual could choose to understand their experiences with the explanation that is most helpful to them for finding strategies to cope with their symptoms. Yet although this approach may seem sensible on the surface, it also seems incomplete.
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It is not, in fact, sensible. It is, in fact, actually very silly. We know for a fact that this model is completely unrealistic from an economic perspective. It is massively expensive, on top of not delivering a damn thing. Anything that delivers nothing is always too expensive, but this is massively expensive.
Missing from the public debate and scientific publications on long covid is a historical and cultural perspective. How were symptoms like this understood in ancient times? Is there something in our culture that makes these symptoms appear “unexplained”? What role does our modern reluctance to accept uncertainty play in this epidemic of persistent illness? How does our aspiration to control and optimise our health reduce our ability to find meaning in living with unexplained disability and disease? Perhaps we should spend a little less time focusing on causes and instead reflect more on the questions we are asking about long covid and why.
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These internal dialogues exist only in the mind of psychosomatic ideologues who think about this stuff for a living but lack a personal understanding.

This is frankly sad and actually feels abusive. What an incredible waste this ideology has created.

 
MSEsperanza said:
Wow, the PI seems to really think his trial is "fully blinded". What is his understanding of blinding?
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Well presumably it is that people could not notice the difference between a single session and an eight week course.

It could be tricky I guess, if you had brain fog?

Sometimes I wish I tweeted, but only for very short periods. Otherwise I am very glad I don't.
 
Missing from the public debate and scientific publications on long covid is a historical and cultural perspective. How were symptoms like this understood in ancient times?
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We don't know but I question the assumption being made that ancient societies had a better understanding than we do.

Is there something in our culture that makes these symptoms appear “unexplained”?
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My interpretation is that the author appears to believe that she can explain them. She appears to believe that society prefers to think of psychosomatic symptoms as being unexplained.

What role does our modern reluctance to accept uncertainty play in this epidemic of persistent illness?
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It leads people like the author to grasping for explanations instead of saying I don't know?

How does our aspiration to control and optimise our health reduce our ability to find meaning in living with unexplained disability and disease?
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Who knows. Maybe it's our aspiration to find meaning in everything, even awful illness, that is problematic.

Perhaps we should spend a little less time focusing on causes and instead reflect more on the questions we are asking about long covid and why.
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No thank you, I prefer to see awful diseases prevented and cured.
 
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rvallee said:
This whole anchoring with ICU patients on ventilators is really getting boring. This is very easy to falsify and people just don't bother because they want to believe.


'Brain fog' following COVID-19 recovery may indicate PTSD

https://www.uclahealth.org/brain-fog-following-covid-19-recovery-may-indicate-ptsd



Bodies do not max out at one specific disease. It's possible to have brain fog with PTSD or no PTSD and PTSD with no brain fog. The science on PTSD is not exactly on a high bar.
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Ptsd has undergone a horrible transformation of recent years. It used to be a specific disorder caused by extreme out of the norm life ending events, soldiers at war, men from the piper alpha disaster. Then suddenly I noticed this year that every man and his dog has been given this diagnosis. From an celebrity who had a slightly shitty childhood, to a man who is gay (apparently it causes horrific trauma). This is life, this is not what ptsd used to be. I wonder who's benefiting from the massive widening of the criteria.
 
strategist said:
We don't know but I question the assumption being made that ancient societies had a better understanding than we do.



My interpretation is that the author appears to believe that she can explain them. She appears to believe that society prefers to think of psychosomatic symptoms as being unexplained.



It leads people like the author to grasping for explanations instead of saying I don't know?



Who knows. Maybe it's our aspiration to find meaning in everything, even awful illness, that is problematic.



No thank you, I prefer to see awful diseases prevented and cured.
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Great reply @strategist I was inclined to respond WT-/WTH when I read the material you quoted --- like the comments from some dude on mind altering substances (never got to parties like that myself) --- good for a laugh though!
 
How can a person possibly think that we need to focus less on understanding the causes of long covid? It sounds crazy, but it sort of makes sense if she believes that she already has the answer. Presumably for her, long covid is psychosomatic symptoms that are really caused by stress, which aren't recognized as such.
 
From what I understand, complex ptsd (cptsd) became a diagnosis for some yrs.

It refers to patients that didn't have one big trauma (like being in a warzone) but several "smaller" ones over a long time, e.g. victims of domestic violence.

I don't know how established it is and what the difference between cptsd, depression and anxiety would be.

But if "cptsd" in any way helps people to get their specific trauma reaction addressed, I don't think it's a bad thing to have widened the criteria.

BUT this has nothing to do with LongCovid for me. I dread it's going to be a cheap excuse to not put money into biomedocal research.
 
I can't speak for Ninna Jonansson but I have met this kind of attitude before both from a family member and outside family. Particularly some ME patients I met in the early years and also online.

Without any investigations or desire to investigate any physical or other causes of health problems, some are all too willing to go down this stress or psychological trauma route.

Rather than actually fix the problem some seem to revel in it. As though it confers some kind of status, makes the special in some way. They are more sensitive, have been under more stress than everyone else.

I've seen it used to try to manipulate the people around them.

I find it fascinating that this is exactly the argument that the BPS cabal have used against those of us who insist on searching for an effective treatment or cure - we are accused of wanting the status of being sick, victimhood absolving us of our responsibilities. Yet in my experience it's the fellow patients who cling to the BPS view who have seemed happiest to do just that.

Please note - this comment is not about those suffering mental ill health but a specific group of patients who may very well have a physical or biomedical cause of their poor health but refuse to look for it.
 
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