BPS attempts at psychologizing Long Covid

Sphyrna said:
As an aside, is there any reason whatsoever to believe that clinical presentation and prevalence of ME differ between cultural and geographical delineations?

Because this reminds me of this report on ME by the German equivalent of the CDC (RKI), stating that prevalence of ME is 11x higher in native Americans. Checking the source got you an odds ratio with a confidence interval that included fucking 56...
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I remember prof. Ola D. Saugstad said in a talk a few years back it could make sense if there were higher prevalence in Nigeria, as there are more infections among the population. He was referring to a paper from Jason et al comparing prevalence in a region in Nigeria with a region in USA (if I remember correct).

Henrik Vogt said in a recent radio interview that ME and Long Covid is more or less the same and has to do with nocebo effect, therefore it's a higher prevalence in countries where it's talked about.

ETA: When I read stories from Long Covid patients it seems most were pretty sure they'd bounce back within two weeks after infection. Patients in the first wave had never even heard about Long Covid so I don't understand how a nocebo effect could have played a role.
 
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Kalliope said:
Henrik Vogt said in a recent radio interview that ME and Long Covid is more or less the same and has to do with nocebo effect, therefore it's a higher prevalence in countries where it's talked about
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How unprofessional and irresponsible to make such a claim without evidence. Not to mention utterly absurd, given how severely impaired long covid patients often are. I doubt there is any reason to believe that nocebo effects can cause long lasting disability. It's just something Vogt and others made up in their minds.
 
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Kalliope said:
Henrik Vogt said in a recent radio interview that ME and Long Covid is more or less the same and has to do with nocebo effect, therefore it's a higher prevalence in countries where it's talked about.
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This is some galaxy brain logic, considering that even in developed countries where ME is more commonly thematized, diagnosis is completely bottlenecked by lack of GP and specialist education. It's hard to diagnose a condition if you do not even have the words to operationalize it. I would like to know if there actually is any well-defined nocebo effect that goes beyond expectancy effects on pain and nausea, parallel to the placebo effect, but that goes beyond the scope of this topic.
But thank you. I'm just going to file this in my BS folder, then.
 
On an afternoon magazine show in the 90s, one BPS proponent, Sittaford I think his name was, was being dreadful to phone in callers. When it was his turn to talk he sad that another guest, an airline pilot, has been chatting to him in the green room and said that in his country, Czechoslovakia, they were too poor to have ME. Oh how him and the presenter chortled about that even after listening to the terrible stories from the phone in people.

On a brighter note, the guest speaker from the ME association Ann, her name is gone but she was very knowledgeable, was talked over by Sittaford and the (male) presenter. As Sittaford pontificated on his experience as a doctor and why he had the eminence to crush patients, she lent across and said "Is your experience not as a doctor working for the insurance industry?" He huffed and puffed, it was a beautiful moment.

Only the names have changed over the years :banghead:
 
Sly Saint said:
michael sharpe on twitter
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Adding a little bit more context :) More details about the criticism of Ludvigsson's research (Ludvigsson is the researcher in the article that Sharpe highlighted).

Critics slam letter in prestigious journal that downplayed COVID-19 risks to Swedish schoolchildren
https://www.sciencemag.org/news/202...ous-journal-downplayed-covid-19-risks-swedish
Sciencemag.org said:
Science has learned that another complaint sent to NEJM makes a more serious allegation: that the authors deliberately left out key data that contradicted their conclusion.

The complaint comes from Bodil Malmberg, a private citizen in Vårgårda, Sweden. She used the country’s open records law to obtain email correspondence between Ludvigsson and Swedish chief epidemiologist Anders Tegnell, the architect of the country’s pandemic policies, that shed light on how the paper came about. Malmberg says she requested the emails because the data in the NEJM paper “did not add up.”
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It's not just cortisol. Adrenaline also becomes dysfunctional. And while it's convenient to blame that on patient's I have often experienced this adrenaline instability in the middle of the night when there is no situational stress present (except the stress of waking suddenly from a pounding heart).

Just a thought.
 
Opionion piece in a Swedish newspaper today :mad: It's a response to this (posted in the long covid thread last week):
mango said:
Opinion piece by three ME doctors/researchers from the Gottfries ME/FM clinic in Sweden (which sadly closed down last year).

Använd ME-forskning för att behandla långtidssjuka i covid
https://www.gp.se/debatt/använd-me-forskning-för-att-behandla-långtidssjuka-i-covid-1.41989524

Google Translate, English
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Rehab efter covid viktigare än verkningslösa läkemedel
https://www.gp.se/debatt/rehab-efter-covid-viktigare-än-verkningslösa-läkemedel-1.42656467

Google Translate, English
Google Translate said:
Rehab after covid more important than ineffective drugs

Debate

We welcome research on the reasons why some people develop long-term symptoms after covid. But rehabilitation is an important factor and to treat with drugs without evidence is to do post-covid patients a disservice, writes among others Katharina Stibrant Sunnerhagen, professor of rehabilitation medicine.

Reply

1/3 Use ME research to treat long-term illness in covid

We believe that discussions about the causes and treatment of diseases should primarily be conducted in academic journals or one of the health care journals. But we still have to respond to some of the statements made in the debate post about people with long-term symptoms after covid. The term long-covid is misleading as it is usually not an ongoing infection, the National Board of Health and Welfare uses the term post-covid for this condition.

Similar conditions

We share Gottfries and co-authors' view that patients with post-covid can present an image that in many parts is similar to that seen in known fatigue conditions after a virus infection. It is important to use knowledge about these when handling post-covid. At the present stage, it is especially important to highlight the knowledge that exists on how to prevent symptoms after infections from becoming long-lasting. For example, the Dallas bedrest study that shows how harmful bed rest is.

The debate article incorrectly claims that there is research that has shown antibodies against one's own body in patients with post-covid. The study that Gottfries refers to is not done in the post-covid, but in the acute phase of covid.

Missing evidence

It is claimed that ME can be assumed to be an autoimmune disease and that it would be shown that post-covid can be an autoimmune disease. Theoretically, both ME/CFS and post-covid can be autoimmune diseases. But despite decades of research, there is no evidence to support the hypothesis that ME/CFS is an autoimmune disease. When you suffer from an illness, you bring with you your history, personality and any other illnesses. In all conditions, the whole affects how one handles one's illness, and covid is affected by the fear that comes from the pandemic.

To treat with drugs without evidence is to do post-covid patients a disservice.

In the debate article, injections of vitamin B12 and low-dose Naltrexone are highlighted as treatments that could benefit post-covid patients. There are no placebo-controlled studies of Naltrexone and the only placebo-controlled study of B12 injections shows that this has no effect on ME/CFS. According to IVO [the Health and Social Care Inspectorate], treatment with B12 injections is “not compatible with good care” in the critical report that the authority submitted in 2015 after its review of healthcare at Gottfries clinic. To treat with drugs without evidence is to do post-covid patients a disservice.

We welcome the Swedish Research Council's investment in research into the causes of some people developing long-term symptoms after covid. The patients who are tormented by post-covid, we hope to get help from a biopsychosocial holistic view. Early rehabilitation is an important factor in preventing long-term illness.

David Gyll, ST-doctor general medicine

Mats Reimer, pediatrician

Katharina Stibrant Sunnerhagen, Professor of Rehabilitation Medicine
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Reimer and Gyll, same old same old. Reimer has been criticising everything about ME in ridiculous opinion pieces since 2009 or maybe earlier than than as well?

I hadn't come across Stibrant Sunnerhagen before. Very long list of publications. She has recently been awarded 2 475 000 SEK (approx 209 800 GBP, 244 100 EUR, 291 000 USD) by the insurance company AFA for a research project:
Google Translate said:
to examine disabilities, medical care treatment and drug consumption in 1,000 people previously cared for in covid-19 hospitals. The study includes describing the consequences and recovery over time for the patients.

The project is expected to provide an idea of the remaining problems and the need for follow-up care and rehabilitation of discharged covid-19 patients. The project is also expected to result in a model for follow-up of patients via 1177 Vårdguiden which can also be used after other types of hospital care.
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The Dallas bedrest study:
The Dallas Bed Rest and Training Study Revisited After 50 Years
A Forty-Year Follow-Up of the Dallas Bed Rest and Training Study
A 30-Year Follow-Up of the Dallas Bed Rest and Training Study

More about B12 and IVO's investigation here.

Sten Helmfrid has confronted Reimer many times over the years, for example here, here, here and here.
 
Looking at the Dallas bed rest study, the volunteers had 3 weeks extreme bed rest with no load bearing at all followed by 8 weeks intensive exercise training so going from one extreme to the other.

Maybe the results would have been better if they reflected real life where there is a very gradual increase in activity from anything which required such extreme rest. Even with bedbound ME patients many still manage to visit the bathroom or use a commode so are still load bearing occasionally.
 
Trial by Error by David Tuller
Biopsychosocial Brigades Seek Traction with Long Covid

Quote:
- The biopsychosocial brigadiers have been losing the argument over ME/CFS, given the questionable body of research they have produced and continue to cite. The NICE draft demonstrated that the tide was shifting in the other direction. With long Covid, they seem to be making much the same arguments over again—and simultaneously trying to un-write the last few years of critical debunking of the PACE approach.
 
Kalliope said:
Trial by Error by David Tuller
Biopsychosocial Brigades Seek Traction with Long Covid

Quote:
- The biopsychosocial brigadiers have been losing the argument over ME/CFS, given the questionable body of research they have produced and continue to cite. The NICE draft demonstrated that the tide was shifting in the other direction. With long Covid, they seem to be making much the same arguments over again—and simultaneously trying to un-write the last few years of critical debunking of the PACE approach.
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A comment by Nigel Speight on David Tuller's Facebook post says:

"They won't disappear. Can't you see they are trying to build whole new research empires which will "prove" that GET cures long Covid. I heard a rumour that Prof Garner has already landed some big grants for such research"
 
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