and you can continue just insulting people all you want but you’ll be getting no more replies from me.
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ehhh apologies that was definitely insulting but it wasn’t my intent. Trying to pin people down into yes/no answers on complicated scientific topics is particularly annoying to me.
Don’t really know why I am bothering with this, but as someone previously in a relationship with a woman with ME/CFS, it’s hard for me to let this stuff slide…
The problem is that ME/CFS advocates know from long and bitter experience that “hay guise have you considered psychological explanations” is the mask-on version of this:
It’s sort of like “surely everyone should be on board with stopping voter fraud”. You have to know the history and context to understand why there is opposition to what sounds like a reasonable suggestion.
CBT is also a major treatment for assisting people suffering from terminal diseases. I presume you don’t think this implies that terminal diseases are not “purely medical”. It’s used for ME/CFS for the same reason, i.e. assisting people to cope with a debilitating condition. Meta-analyses have shown that:
A 2010 meta-analysis of trials that objectively measured physical activity before and after CBT showed that although CBT effectively reduced patients’ fatigue questionnaire scores, activity levels were not improved by CBT and changes in physical activity were not related to changes in fatigue questionnaire scores. They conclude that the effect of CBT on fatigue questionnaire scores is not mediated by a change in physical activity. According to the authors of a 2014 systematic review, the lack of changes to objectively measured physical activity contradict the cognitive behavioural model of CFS and suggest that patients still avoided postexertional symptom exacerbations and adapted to the illness rather than recovered from it.
The UK’s NICE national care guidelines for ME/CFS say this:
The committee wanted to highlight that cognitive behavioural therapy (CBT) has sometimes
been assumed to be a cure for ME/CFS. However, it should only be offered to support people
who live with ME/CFS to manage their symptoms, improve their functioning and reduce the
distress associated with having a chronic illness.
The reason advocates are so skeptical that the condition has a psychological explanation is that people have been arguing this for decades with nothing to show for it. For example, if there is anxiety or depression underlying the condition, some people ought to be helped by SSRIs or benzos. If it’s delusional, maybe antipsychotics should help. In general if it is psychological, people should spontaneously recover more often than they do. The lack of assistance given by psychiatric or psychological therapies is more glaring in my opinion than the lack of pharmaceutical therapies, since there are plenty of degenerative conditions (MS, motor neurone disease) for which there is not much in the way of treatment available despite the underlying causes of the condition being much better understood.
ME/CFS, being a syndrome, is probably a collection of conditions of disparate etiologies with similar pathological results. Physiological correlates are not hard to find, but they tend not to apply uniformly over the whole ME/CFS patient population. I’m hopeful the existence of long COVID will lead to better understanding of post-viral syndromes in general.
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From what I read, long covid seems to manifest itself in people that had harsh covid experiences.
I had covid twice, and both times covid symptoms lasted 24 hours and 6 hours respectively. First time unvaccinated back in feb 2021, and 2nd time last week with double jab end of 2021.
Zero long covid and feel as healthy as ever.
A friend of mine unvaccinated was intubated and got out mid January. He still feels about 30% right now and most likely will have long covid for a while.
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See that’s a big part of the problem in this discussion. It is expected that people with ICU level of illness will have long term effects. That is normal, even though it sucks. The long covid discussion is separate, in which people with minor symptoms (and in many studies never had a positive test) develop debilitating symptoms later on.
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Yeah when I say “long COVID” I always mean a post-viral syndrome, but unfortunately people seem to use it to also mean things like post intensive care syndrome or permanent organ damage. Those things are obviously related to the severity of your case. Whether post-viral syndromes correlate well to case severity is more of a question mark.
What is the correct answer if some (or even most) have zero value but others have non-zero value?
True. I assume most of the “long covid” symptoms my friend is going through is due to the fact that he was a living vegetable lying in 1 spot for 30 days and pumped up on a cocktail of drugs to keep him knocked out.
That would be a No then - it wasn’t a trick question.
So if I asked you “Do humans have blue eyes?”, that’s a “No” from you?
You may not have meant it as a trick question, but I do think it is a bit open to interpretation.
What I’m saying is that “maybe ME/CFS has a psychological explanation” is not a serious suggestion that it really fits into the same category as major depressive disorder or schizophrenia. If it were, there would be attempts to use psychiatric or psychological means to treat it other than the weaksauce of CBT. It’s debilitating enough in some cases that I’m sure people would line up for electroshock therapy if anyone actually thought it would help. There is simply even less evidence for a psychiatric etiology than for any specific physiological etiology.
How “maybe there’s a psychological explanation” actually functions in real life is as a convenient means to get rid of patients who are difficult and frustrating to treat. To go back to the voter fraud analogy, voter fraud would be a huge problem if it actually existed in America, but it doesn’t. The actual problem that exists is suppression of votes among certain demographics in the name of “combatting voter fraud”. If it were actually the case that psychological treatments weren’t being considered or tried for ME/CFS, that would be a huge problem, but they have been considered and tried, extensively, and they don’t work. The actual problem that exists is doctors using “hey who knows, maybe this is all psychological” as a means to wash their hands of difficult cases.
Yeah I don’t think there’s any kind of conspiracy like this, but more basic research is required, and I think ME/CFS is under-studied in part because of doctors thinking that it isn’t a real thing.
Edit, just to substantiate that last:
David Strain, who is playing a leading role in the BMA’s COVID response, and who is researching long COVID as part of his job as a senior clinical lecturer at the University of Exeter Medical School, has witnessed this at first hand.
‘Prior to COVID, I was already working on chronic fatigue syndrome, and pre-COVID it was very, very difficult to get anyone to take an interest in either research, or data evaluation or to do studies into chronic fatigue syndrome, in the UK at least. I put grant applications in to do work into the underlying causes of CFS, pre-COVID, and they were commonly side-lined as low priority; now exactly the same grant applications are being funded.
I don’t think it’s a stretch to suggest that doctors thinking that the condition is not real or the constant suggestion and re-suggestion that it is psychogenic are contributing factors to this lack of interest in funding research that he describes.
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More unexpected was what the researchers found when they looked at the factors that predicted how many people got infected. Some of the obvious candidates — population density, G.D.P. per capita, and exposure to past coronaviruses — failed to predict much in the way of outcomes. But both trust in government and trust in fellow citizens proved potent.
This yields the paper’s most striking finding: Moving every country up to the 75th percentile in trust in government — that’s where Denmark sits — would have prevented 13 percent of global infections. Moving every country to the 75th percentile of trust in their fellow citizens — roughly South Korea’s level — would have prevented 40 percent of global infections.
The researchers later noted that tucked inside the report was a finding about the United States that would prove more predictive of our response: “It had the lowest possible score on public confidence in the government.”
Staying in dunk mode 24-7 has consequences.
errrr saying CBT is weaksauce in the context of MDD is simply not true.
Amitryptiline is fairly commonly used for symptom management in ME/CFS, for pain relief and/or assistance with sleep.
It’s funny that you are like “you know, some activists think there’s a conspiracy against them from the medical establishment, crazy” but when faced with the question “why are there no RCTs for TCAs” your answer is “probably an all-powerful cabal of ME/CFS warriors are terrorizing the medical establishment”, which is a pretty topsy-turvy view of how the power dynamics operate here. The reason there are no RCTs of TCAs is this:
The function of “hey what about CBT, have you tried that?” is to consign patients to the too-hard basket, that’s all.
That’s not true. CBT is used both as a primary and secondary treatment for lots of disorders. It absolutely doesn’t dismiss you to the too hard basket. It’s basically standard of care.
No offense, but maybe start a new thread?
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I’m finally back home. I’ll go back and excise all this if I have time from work today. Start a new thread if you don’t mind.
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BA-2 not gaining any traction in Connecticut.
https://twitter.com/nathangrubaugh/status/1490674004860227585?s=21
Similar observations for SGTF data in Washington.
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Numbers are already declining in the Czech Republic.
I mean they’re still high in general but they’re on their way down. That was a very quick peak.
My school which was hit super-hard with covid in January is barely turning up anything now. Went from receiving multiple emails a day from multiple teachers about new positive cases to getting one or two per day total.
That said, i still think they’re moving a bit quick with dismantling restrictions.
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An example of “long covid” that does concern me
https://twitter.com/EricTopol/status/1490703191712825345
Note that this actually makes sense unlike a lot of long covid “work”. There’s a clear gradation from people ‘non-hospitalized’ to ‘hospitalized’ to ‘ICU’. There’s actually measured outcomes.