BPS attempts at psychologizing Long Covid

Thank you @Adam pwme .unbelievable the cognitive dissonance
@PhysiosforME

https://twitter.com/user/status/1396847147287461888

 

Mostly just to keep track, if ever that becomes useful. The same formulaic tripe, copied-and-pasted thousands of times over, with the same intent, the same biases, the same outcomes every time.

https://twitter.com/user/status/1441671416160534530

 

Henrik still going around making stuff up, but interesting that there are a few critical replies, to which he obviously doesn't reply. Of course RecoveryNorge is known for rejecting any "recovery" stories that do not promote their system. No idea what he's doing sending the Bat signal to those accounts, dude looks like a fool.

https://twitter.com/user/status/1442393381053763587

(It doesn't)
https://twitter.com/user/status/1442436104091803650


Gotta love the totally-real-and-not-fake testimony here from an anonymous account, and of course either made-up, recovery or remission stories are common on ME forums and always received positively as long as they don't proselytize, especially about commercial stuff (and many pwME were kicked out LC forums early on, people's actions aren't always reflective of something rational):

(embed doesn't seem to work)

https://twitter.com/user/status/1442389355151208453

 

"Mindbody Medicine" claim to be inspired by Dr John Sarno.

I came across this quack a few years ago. He believed that even back pain was caused by negative emotions.

That a charlatan like Sarno wasn't drummed out of medicine entirely speaks volumes about the profession.

 

But aren't psychological anxieties dead easy to treat, with a near perfect record of being done so successfully?

We do after all have thousands of years of experience with them, and loads and loads of experts at doing so.

Who, obviously, because they have the combined experience of thousands of years, and hundreds of thousands of like minded people, are really, really good, and effective, at treating such problems.

So how come, according to reports and research they write, nearly 100% of people, and animals, and buildings, still have these problems, after all this treatment, and that number seems to be growing year on year, as they decide many more things that people had never realised were deep psychological anxiety/trauma, are now.

So, on a societal level, 'treating' what these people call 'psychological anxieties' is making things worse, every year, worse, and worse, and worse.

There is nothing else for it, these people need to be helped, as their 'reality' is damaging to the rest of us.

 

I'm not sure this is the right thread because this is not necessarily an "attempt" but a patient's story. It first appeared yesterday on a local news site, so I didn't want to share it (and because it is still someone's personal story) but now it has been posted on the website of a university (The University of Texas at San Antonio - the author works there) and to me that makes it a different thing:

The link between chronic fatigue and COVID's long haul

"My story reflects the #millionsmissing from public health conversations who have wisdom that could save lives in today’s pandemic world. For me, healing from CFS/ME has required a mind-body, psycho-spiritual approach to heal underlying emotional trauma and to gain insight into the societal narratives praising overachievement and perfectionism that — like so many — I had embodied. Our bodies speak to us — first in whispers and then, when that doesn’t get our attention, in symptoms.

There is hope for these conditions. We can learn to reprogram our nervous systems and create cultures in which being “busy” isn’t glorified but human “being” is."​

Full article: https://www.utsa.edu/today/2021/10/story/rueda-heidi-covid-long-haul-chronic-fatigue.html

 

It may well be that

cause a form of burnout that gives chronic disease. Burnout from working too hard and training too hard also causes problems which are worthy of research and treatment, but it is not ME any more than it is MS or RA or diabetes.

Though, of course, all these things can make your disease much worse if you already have them. An athlete who has a mild case of ME will quickly become severe if they continue their training schedule.

Basically, if ME is caused by having to rely too much on glycolysis for everyday living, then someone who exceeds their aerobic capacity by striving for perfection, being forced to work when already exhausted or by a gruelling training schedule will share some symptoms with us. The difference is that their healthy aerobic system will speed up their recovery and they will not get the downstream effects of being continually bathed in the toxic by products of anaerobic respiration.

I wish them well, but they have the means to recover to their previous level of health but we do not.

 

Looks like The Telegraph is happily publishing BPS nonsense, been a few lately. It seems to poorly attempt to tie it in with ME and Long Covid but frankly I think it's just an ad for Optimum Clinic and the book this guy is selling.

I haven't bothered reading it, what little I have seen makes it clear this is junk, but I do wonder why a newspaper is publishing this nonsense and why. Has bits about personality types and all the dumbest hits.


How to decode your fatigue – and the 12 steps to fix it
https://www.telegraph.co.uk/health-fitness/body/decode-fatigue-12-steps-fix/


I guess the 30M quoted here is for ME/CFS, otherwise I have no idea where they took that number from:
https://twitter.com/user/status/1445776035715313675


And I guess it was too much to ask for someone to understand that fatigue is a symptom in itself, it does not have sub-symptoms, though it does have common co-morbid ones:
https://twitter.com/user/status/1445776046582730769

 

sounds like alex paid for this as a promotional piece .i learnt as a child that newspapers were not to be trusted . there is always some body promoting their own agendas .

 

It sure reads enough like an ad to ask whether someone paid for it, but we'll never know.

 

Was gonna post that. Sometimes it feels like we've been warning about this for a year and a half and it just fell on deaf ears. It's too unbelievable to accept.

After all, the whole thing about Cassandra's curse is that she wouldn't be believed. Sure enough. We called everything in advance and still most don't seem to accept that we know how this works because we've been at this for years.

 

Moved post
For what it is worth:

Source: San Antonio Express-News
Date: October 4, 2021
Author: Heidi Adams Rueda
URL:
https://www.expressnews.com/opinion/commentary/article/Chronic-fatigue-long-COVID-link-16508625.php

Heidi Adams Rueda is an associate professor in the Department of Social
Work at the University of Texas at San Antonio.

Extract:
My story reflects the #millionsmissing from public health conversations
who have wisdom that could save lives in today's pandemic world. For me,
healing from CFS/ME has required a mind-body, psycho-spiritual approach
to heal underlying emotional trauma and to gain insight into the
societal narratives praising overachievement and perfectionism that -
like so many - I had embodied. Our bodies speak to us - first in
whispers and then, when that doesn't get our attention, in symptoms.

 

Going Around in Circles with Long COVID
Published on 10/19/2021 by Steven Lubet

https://www.socialsciencespace.com/2021/10/going-around-in-circles-with-long-covid/

 

Wyller has received funds to study long term effects after corona infection in adolescents.
The money comes from a foundation called Dam which allows researchers to apply for funding through user/patient organisations. The user organisation for this project is Recovery Norge.

This is the presentation of the project (google translated):

COVID-19 can cause persistent physical ailments long after the acute infection. This can be due to organ damage (eg damage to the lungs), but in most cases it is a matter of chronic symptoms (fatigue, pain, "brain fog", etc.) without finding any clear discrepancies in a regular medical examination.

This condition, which in English is often referred to as "Long COVID", can be disabling. Similar conditions can occur after certain other infections, such as acute Epstein Barr virus infection (‘kissing disease’), and there are also many similarities with chronic fatigue syndrome (CFS / ME).

Long COVID can affect as many as 5-10% of all people with acute COVID-19, and can thus be considered a pandemic in itself. The underlying causes are unclear, but research on related conditions suggests a complex interplay of genetic predisposition, adverse life events, immunological changes, and neuropsychological mechanisms.

This project is a prospective cohort study where the goals are: a) To determine the prevalence (prevalence) of Long COVID in adolescents and young adults (12-25 years) who have not been hospitalized; b) To determine risk factors for the development of Long COVID.

We have already included 410 people with acute COVID-19 and 116 people with symptoms of acute COVID-19, but negative corona test: Both of these groups will be followed up after 6 and 12 months.

At all examination times, we perform analyzes of genetic and immunological markers in blood, neuropsychological tests, as well as heart and lung examinations; in addition, participants answer a comprehensive questionnaire.

The project focuses on a "new" state where the knowledge base is very thin. This applies in particular to non-hospitalized adolescents and young adults: there are very few studies of this population segment, despite the fact that infection rates have been high. T

he project will have a direct impact on the establishment of a health service offer for people with Long COVID in the primary health service, and will also provide key premises for preventive measures, including vaccine strategy: If the prevalence of Long COVID proves to be high, this is a strong argument that adolescents should be vaccinated.

The project results also form a basis for further scientific studies of underlying disease mechanisms and treatment. The first publication from the project can be expected towards the end of 2022.

Source:
https://dam.no/prosjekter/langtidseffekter-etter-koronavirusinfeksjon-hos-ungdom/

 

I haven’t watched
https://twitter.com/user/status/1451575583314415617

 

from video
"
[PHYSIOTHERAPIST] The most important message for people with long COVID is
07:10
is to learn that you can't push you absolutely cannot push and challenge out of this.
07:17
This is a, you have to listen you have to sort of respect and respond to the body and the
07:24
more you push and challenge recovery the more it rebels and the more it pushes you back down."

 

Association of Self-reported COVID-19 Infection and SARS-CoV-2 Serology Test Results With Persistent Physical Symptoms Among French Adults During the COVID-19 Pandemic
https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2785832

Question Are the belief in having had COVID-19 infection and actually having had the infection as verified by SARS-CoV-2 serology testing associated with persistent physical symptoms during the COVID-19 pandemic?

Importance After an infection by SARS-CoV-2, many patients present with persistent physical symptoms that may impair their quality of life. Beliefs regarding the causes of these symptoms may influence their perception and promote maladaptive health behaviors.

Conclusions and Relevance The findings of this cross-sectional analysis of a large, population-based French cohort suggest that persistent physical symptoms after COVID-19 infection may be associated more with the belief in having been infected with SARS-CoV-2 than with having laboratory-confirmed COVID-19 infection. Further research in this area should consider underlying mechanisms that may not be specific to the SARS-CoV-2 virus. A medical evaluation of these patients may be needed to prevent symptoms due to another disease being erroneously attributed to “long COVID.”​

Same old. It's been established for many months that there is no reliable way to verify a current or past infection.

 

On this paper, I am very curious about whether Greenhalgh shared it because she thought it was great. Because this is the exact formula used to dismiss ME the exact same way with the exact same intent and purpose and she thinks it's great and fully agrees with. Not that I expect consistency...

And in addition to unreliable tests, this paper assumes that every single person who reports symptoms and was infected went to get a test and that test is 100% reliable, both obviously false assumptions. What is it with medicine and obviously false assumptions?

https://twitter.com/user/status/1457821069503516674

 

A news site about health has an article about Long Covid rehabilitation at a Norwegian clinic. The approach is based on a 3 day intervention against OCD and anxiety, which the clinic is now using to treat other diagnoses as well, as diabetes, back pain and now Long Covid. The psychiatrist who is interviewed is also one of the leaders of Recovery Norge.

Det er håp for pasienter med "long covid"
google translation There is hope for patients with "long covid"

quotes:
- We see that the participants report a higher level of function one week after they have been with us, and that the level of function continues to increase even after three months, says Frisk, who is a specialist in cardiopulmonary physiotherapy and associate professor at the University College of Western Norway.

She emphasizes that the results are based on preliminary summaries from the questionnaire, but believes the results are positive.

- The participants also report that they have fewer symptoms and less fatigue.

...

Emphasis is often placed on testing one's own limits. During the three days, teaching is combined to understand one's own ailments with physical exercise. Participants are also encouraged to challenge themselves and their own endurance limits.

- It's about changing focus. Trying to control the symptoms can, paradoxically, help to perpetuate them. Then it is better to focus on what you actually have control over and get started training on it in a safe environment with an expert team available, says Jürgensen.

- The most important thing is that there should be individual tailoring. Because there is so much variety, it is important that it is not a "one size fits all".

...

An increased demand is attributed to GPs who see that the treatment has worked for some patients, referring more, and secondly that previous participants recommend the scheme to more, that GPs therefore refer more patients and that previous participants recommend it to others. Now the professionals hope to be able to continue the project.

- The waiting list is growing fast. We would have liked to have offered treatment to more people, and we are ready to scale up if we receive sufficient funding.