BPS attempts at psychologizing Long Covid



7. This is not good science and will contribute to psychologizing the symptoms. Bad practice, because closely related chronic illnesses like #ME #Fibromyalgia and #QVS have a similar history of psychologizing, causing real help to stay away(bad translation of my/Solstice's part)

8. Another symptom long-covid patients struggle with is "brain fog". These are concentration problems, problems finding words, forgetfulness and sometimes confusion. Besides that patients suffer from over-stimulation, which can cause light and sound to hurt.

9. In the questionnaire under the heading "Anxiety and depression" it also says: "I can enjoy a good book, or something like a good radio- or television show". When a patient says he doesn't enjoy these he scores even higher on anxiety/depression.

10. Results of this questionnaire are therefore not reliable. I fear that patients are being framed as people with an anxiety disorder, depression or burn-out. Suitable help and research into biomedical causes and treatments will then not be given/taken.

11. You think I might be exaggerating, but unfortunately I experienced something like this before at the revalidation center I frequented. I scored very high on anxiety and depression, whilst I didn't feel anxious or depressed at all.

12. It turned out that symptoms like tension, neck-pain, insomnia, headache and problems concentrating where filed under anxiety and depression. As a result I got guided throughout the process by a psychosomatic physiotherapist and focus was constantly on the mental aspect.
 
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13. Something that is also lacking from the questionnaire of the RIVM is the ability to add symptoms yourself. I'm missing a whole lot of those. How can you get a clear picture of long-covid if the list of symptoms is pre-determined.

14. Don't get me wrong.... Anxiety and depression should be taken just as seriously. And there will be long-covid patients that unfortunately suffer from these, but to determine that a much more specific questionnaire is needed.

15. Many thousands of long-covid patients are already sick for 1,5 years. In many cases homebound. These are often previously fit people out of the working populace, whose whole live is on pause. We deserve better and more help. @RIVM this has to be better.

16.


17.


18. By the way there aren't nearly as much questions about physical symptoms. The questions under the heading "Anxiety and depression" are much more elaborate. Where they don't make any distinction between mental symptoms caused by being sick a long time and symptoms that appeared right after the initial infection.
 
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I've adjusted the posts above and translated the tweets as best I could. I think they paint a very similar picture as to what happened to M.E.-patients in the past. RIVM is the national institute for public health and environment in the Netherlands. They are the ones that throughout the pandemic have been advising our government how to proceed and collected data about infections, death toll etc.. I don't know how much influence they'll have on actual treatments and research though, maybe someone else from the Netherlands has more insight into that.
 
It would seem the people at RVIM doing this need some close oversight. This is a garbage in garbage out study of questionnaire's meant to give the researchers what they want. How comforting for them when the results come in. High Five's all around. They got what they came for.

And wasted a whole lot of money and sick people's time. And we are all no more scientifically informed than we were before the study.
 
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Kinda hard to classify this one, although it mostly plays into the same tropes, but The Sunday Times published an advertisement for a private spa program for Long Covid rehabilitation, disguised as an article. There is a recent trend in journalism doing that, but it usually explains that it's basically a paid-for article. This one reads exactly like an advertising "satisfied customer", but has no indication of it.

All for the low low price of £3,549 per person. Which, let's be honest here, is actually cheaper than a full-course of "high intensity" CBT, or a GET-type rehab program, with the exact same outcome of having zero positive impact whatsoever. What a bargain! If I know how things usually go with claims that are too good to be true is that you invest in full and never look back. At least that's the BPS way.


How a spa visit eased one man’s long Covid symptoms
https://www.thetimes.co.uk/article/how-a-spa-visit-eased-one-mans-long-covid-symptoms-3vwx2qjlb
 
What do we know about long Covid?

Above link is to an article dated 18th August 2021 from the British Heart Foundation.

An excerpt, describing GET as pacing...

Dr Claire Steves, Senior Clinical Lecturer at King’s College, said that while exercise is helpful for some people with long Covid, and research would look into this further, carefully pacing exercise [for example, starting slowly and gradually, and only increasing if that does not prove to be too much] was important to avoid the "boom and bust" that some people experience. She said: "Many people with long Covid report that there is this sort of boom and bust – do too much and you will be out of action for several days. If we take a paced approach, we can try and avoid that. We are trialling some online tools and resources to help people pace and individualise what they do so it meets that individual need."
Click to expand...
 
Arnie Pye said:
pacing.
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clearly APT

eta: has anyone asked why they are now promoting APT when they insist that their research showed that GET produced better improvement rates.?

"
The aim of pacing is to avoid symptom exacerbations whilst achieving as
much as possible with limited energy.
In particular, to establish sustainable activity levels that avoid the “bust and
boom” pattern so often seen when people with CFS/ME attempt too high a
level of functioning."
https://www.qmul.ac.uk/wolfson/media/wolfson/current-projects/2.apt-participant-manual.pdf
 
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Sly Saint said:
clearly APT

eta: has anyone asked why they are now promoting APT when they insist that their research showed that GET produced better improvement rates.?

"
The aim of pacing is to avoid symptom exacerbations whilst achieving as
much as possible with limited energy.
In particular, to establish sustainable activity levels that avoid the “bust and
boom” pattern so often seen when people with CFS/ME attempt too high a
level of functioning."
https://www.qmul.ac.uk/wolfson/media/wolfson/current-projects/2.apt-participant-manual.pdf
Click to expand...
Literally just a matter of time until someone starts arguing that PACE proved pacing (APT) is useful. Because when you go full dystopian, nothing is too absurd.
 
Attitudes to long Covid are straight out of the ME playbook – history must not be allowed to repeat itself

With @Brian Hughes ' insight.
Medical science has an opportunity here to reject the psychologisation of illnesses it doesn’t understand

[...]
But Dr Fearnley’s experience is also not unique to long Covid patients. “There’s a long history in medicine of dismissing hard-to-diagnose and hard-to-treat patients as having psychological or behavioural problems,” Brian Hughes, Professor of Psychology at the National University of Ireland, Galway, told me. “This is especially common where illnesses are difficult to assess using a simple biological test, such as a blood test.”
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https://inews.co.uk/opinion/long-covid-attitudes-me-playbook-history-repeat-itself-1187999
 
A paywalled article about Long Covid in children yesterday in one of Norway's tabloid newspapers, VG.

It tells the story of a 15 year old girl who has postviral fatigue after Covid-19 and is now doing quite poorly. She is no longer able to go to school.

Several doctors and researchers have been interviewed, including one from the BPS milieu.
(hastily translated):

Paediatrician, Bård Fossli Jensen, has seen it again and again:
Children and adolescents, often strong willed and hard working, becoming bed bound after an infection.
The blood tests are fine. There is nothing to see on X-rays of the brain, the lungs or the heart.
But still the children are so ill that they're not able to get through everyday life without help.

- These stories are completely tragic. But it's important to understand that we've seen such symptoms again and again. It's nothing new or mysterious about Covid-19, says Fossli Jensen, who speaks about this in a general sense.

Why some don't recover after an infection, is complex, but necessary for parents to understand, the doctor believes:

- The brain and the body are the most complex in the whole universe, so no-one knows exactly how this works together. Me neither. But we know there is a type of stress-response that is activated in those who have long term illness.

Fossli Jensen explains:
- Imagine that you, as many others, are stressing a bit more than you really should in your everyday life.
You don't actually need to feel stressed, but there might be some things that are bothering you, and when you ought to rest, you pull your straps up instead.
Then you get an infection in the body.

It could be Covid-19, or mononucleosis, that knocks you out. Maybe you get fever or a sore throat, and you stay put in bed.

Then, when the virus leaves the body, the fever stops. But you're still not feeling well. It could for instance be fatigue that's still lingering.

- We who work with unexplained medical symptoms, as Long Covid pr definition is, know the reason for why you're not feeling better: It's because the body is trying to protect you against returning to the stressful situation you were in before the infection.

(...)

It's a completely normal defence mechanism, explains Fossli Jensen.

It's just as natural as pulling your hand away from a hot stove. No matter how strong willed you are.

- Covid-19 can trigger that you are feeling fatigue, but Corona is not the cause for not recovering afterwards.

- So in theory if I had had a completely stress free life before Corona, you say I wouldn't develop Long Covid?

- Yes, in principle yes. It has to be that this comes on top of everything. The final drop.

He quickly continues:
- And then people are asking me: So you mean the symptoms are all in the head?

Fossli Jensen answers his own question.
- No! To separate mind and body is an old and meaningless way to think in medicine. The symptoms are completely, completely real.
 
Kalliope said:
- So in theory if I had had a completely stress free life before Corona, you say I wouldn't develop Long Covid?

- Yes, in principle yes. It has to be that this comes on top of everything. The final drop.
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Plenty of people live highly stressful lives and don't develop LongCovid (example certain prime ministers and presidents). Plenty of people live low stress lives and still develop LongCovid or other post-viral conditions. Men like this Fossli Jensen simply don't care about epidemiological evidence when it conflicts with their preconceived ideas.
 
Snow Leopard said:
Plenty of people live highly stressful lives and don't develop LongCovid (example certain prime ministers and presidents). Plenty of people live low stress lives and still develop LongCovid or other post-viral conditions. Men like this Fossli Jensen simply don't care about epidemiological evidence when it conflicts with their preconceived ideas.
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Well, according to Fossli Jensen people don't even have to feel stressed for his hypothesis to be accurate. .
 
Kalliope said:
- The brain and the body are the most complex in the whole universe, so no-one knows exactly how this works together. Me neither. But we know there is a type of stress-response that is activated in those who have long term illness.

Fossli Jensen explains:
- Imagine that you, as many others, are stressing a bit more than you really should in your everyday life.
You don't actually need to feel stressed, but there might be some things that are bothering you, and when you ought to rest, you pull your straps up instead.
Then you get an infection in the body.

It could be Covid-19, or mononucleosis, that knocks you out. Maybe you get fever or a sore throat, and you stay put in bed.

Then, when the virus leaves the body, the fever stops. But you're still not feeling well. It could for instance be fatigue that's still lingering.

- We who work with unexplained medical symptoms, as Long Covid pr definition is, know the reason for why you're not feeling better: It's because the body is trying to protect you against returning to the stressful situation you were in before the infection.
Click to expand...
I like how he talks about how the brain and body are the most complex in the whole universe, and then somehow manages to turn that into justifying how he knows exactly what's going on.
 
I dont like this much. There is a lot of unsubstantiated theory flying around about stress and ME onset even in ME circles.

MEActions MEPedia quotes several psychological studies which purport to show stress as a predisposing factor for ME. Three key studies 5,6,7, (1997-2003) are based on unreliable methods like subjective self reporting and interview methods which are open to coaching and bias.

Honestly I take a dim view of MEAction including them on their web page and dimmer still is my view of their suggestion ...

Emotional or psychological stress, particularly when chronic, is considered a potential trigger for ME/CFS.
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https://me-pedia.org/wiki/Stress

By who? I think this is less than clear BPS thinking too close to home.

There are questions about the impact of stress which need answers but they must be investigated empirically, using measurable molecular indices. This handwavey nonsense does more harm than good.

Personally I doubt its that simple. I dont think stress causes ME because if it did then reducing stress would produce cures and it doesnt. A lot of the trap ideas look like attempts to explain that but I think the premise is false in the first place. I agree stress exacerbates ME, without a doubt and minimising stress is important for pacing, but that doesnt appear to cure the condition which in my own experience persists even when rested and stress free. That is the problem, otherwise a couple of weeks by the beach and we would all be right as rain.
 
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