Yep. If you are going to be basing your claim on your own personal anecdote, then that data is as subject to scrutiny and criticism as any other form of data.
And your methodology even more so.
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Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.
And your methodology even more so.
MrMagoo
Senior Member (Voting Rights)
And inconsistencies therein.
Peter T
Senior Member (Voting Rights)
Further, he is using his personal story to argue for a specific range of treatment programmes (am I being fair, I suspect I am as though he does not always name programmes himself, he does lend his support to individuals and articles/events that do), none of which he actually undertook.
If he believes that his running and scuba diving in the Bahamas was part of his ‘cure’, he still needs to justify how that can be generalised as evidence for formal GET under an ME/CFS or Long Covid service in the East Midlands say, also if his belief that he could will his own recovery arose from a St Paul on the road to Damascus moment through a phone conversation to a Lightening Process practitioner in Norway, he needs to explain how that can be generalised to believing others should undertake formal CBT or attend an LP course in down town Michigan, none of which he has experienced.
From the start his ‘illness’ was played out in social media, as a grand tragedy where ME/CFS was destroying his life, but as far as we can tell this was a self diagnosis. After having had the initial revelation of the possibility of PEM, he first lauded the online ME/CFS as a super support. Whilst supposedly pacing he was simultaneously ramping up military style training till believed he was better, then turned on that same online community as harmful for blocking his recovery by supposedly believing such individual recovery was impossible. This may tell us more about his own psychological state, his own saviour complex, than anything extant in the real world. He needs to explain how he is different to any of the many quack snake oil salesmen using a personal story to market their treatment programmes. If the evil ME/CFS community is supposedly preventing thousands if not millions from recovering by spreading false information, how is it that he was different to all the others.
For an Professor who is a retired consultant in Public Health he seems to miss the whole point of what constitutes evidence in medicine.
All he can say is that he recovered from some form of Long Covid, using the term in its loosest sense, but given he was self diagnosed and the data he presents is personal anecdote rather than a documented case study, we do not even know with certainty if would have met the formal diagnostic criteria for ME/CFS or ME type Long Covid. He believes his recovery came from a personal realisation that he could recover by force of will, but uses nothing but anecdote to justify this or explain how he is not either one of the many who spontaneously recover from simple post viral fatigue or one of the very few (the 6%?) who epidemiological studies report spontaneously recovering from ME/CFS.
He is an epidemiologist, was a professor in evidence synthesis for two decades, and is currently an emeritus prof in the same position, and has done a lot of work on systematic reviews and with the WHO, etc.
He of all people should know what constitutes robust methodology. He has no excuse whatsoever for his grotesque behaviour.
Perhaps this says a lot about the subject of evidence synthesis - I'm not sure they ever really talk about robust methodology just how to tabulate things in other papers and add up the numbers. They don't even seem to check that the stuff they are adding up has the same intervention and hence can be combined.
That would be my experience of how these things are taught at medical faculties (from someone who has had methodology courses with MD students).
I have thought it would be interesting to take a more formal approach to describing methodology (i.e. a formal specification of the methodology) and then having model checkers running on this to validate certain properties are achieved or identify potential flaws. However, formal specifications are hard so no one would go that route. However, I wonder if an LLM could be used to analyze methodologies and find potential flaws etc - probably need a agentic multi-stage system that would go through a reasoning chain about potential issues etc.
Utsikt
Senior Member (Voting Rights)
What would a «formal specification of methodology» look like?
rvallee
Senior Member (Voting Rights)
This emphasizes how morally and intellectually bankrupt the whole psychobehavioral project is. Ideologues have for decades 'tried' every possible variation and combination of modalities and approaches, treating them as if they all need to be independently checked (and then compared, then all summarized under a single generic label, showing how they know it's all pretend BS).
And yet when it comes down to it, all of them find no problem with just generally recommending any of them, doesn't matter what's in it, even based on a personal anecdote of someone who didn't even use any of those. The way Garner explains it, it's clearly a simple matter of belief. He says that first he believed he would not recover, then he did, and he recovered, even though by his own account he had been very active for months by then.
It's a completely generic approach where the details absolutely don't matter, but every imaginable combination of details has to be checked, ten times at a minimum, then twice more again, as long as it takes. Even though to them it literally doesn't matter, they couldn't care less whether someone faithfully applies the LP, or Gupta, or does mindful yoga, it's all just the generic idea of... some kind of fear avoidance / stress reduction, or whatever.
Every one of those, and they keep creating new ones, all identical to every other one, has to be checked for all possible combinations, individually and in group, in person or through an app, intensive or leisurely, focused on fitness or maybe enjoyment. But everyone involved in this truly doesn't care, worst case they'd advise to try them all, it's not as if it makes any difference. Some years ago Chalder even said that, that she doesn't care what helps someone, they're not just agnostic as to cause, they're completely agnostic as to the process itself, as people who create, sell and promote processes.
All of this is blatant fraud. They are stealing scarce research funding to do something they know is performative BS. They know it makes no difference, they all personally don't even care. But they'll keep going, will keep lying and stealing and harming, until the very last second, when the giant castle of cards they built just collapses from a simple whisper: "we found it, we found the cause, we know what happens".
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Not sure. But in a paper they often describe the process that they go through in running a trial - things like selection, treatment, assessment etc. But in english and in ways that can be ambigious. So I imagine a more formal description codifying this back to a set of privatives and logic statements that can be reasoned over (does a property hold, or how does a property hold, compare to a risk model of known issues etc). To do such a thing would be a research task (its done in other areas). Ideally the description would also allow for the generation and testing of the stats code for processing results. (another issue I think with some trials is the lack of a code testing methodology - I've never seen anyone talking about this).
It may be that the various steps are really independent and there is no need to do complex analysis (for example, does the way subjects are selected have an interaction with treatment choices and hence outcomes).
Looking at thinks like GET trials they all have slightly different versions of GET which makes it really hard to compare. So having a way at least to capture the process they do and critical aspects feels important for any meta analysis.