Requests for information/papers/sources/documentation

rvallee

rvallee

Senior Member (Voting Rights)
I've been seeing many lately and thought a thread could be useful. Either coming from Long Covid advocates or professionals interested in learning about ME, people sometimes send out open requests for information, papers or studies on a specific topic that may span many subjects.

Usually those requests are from outside the forum, most often on Twitter, so the replies should be mostly directed at the original request or in replies to the comment where the request was posted.

Forum guests unsure where to make such a request can also use this thread, but only for links, not discussion.
 
The writer who penned yesterday' BMJ piece lauding the ME-BPS model seems not have done much of an effort researching it but may be open to taking facts into account so let's see, seems surprised that it also affects kids ("with fatigue", ugh, whatever). I saw several in passing and that LongCovidKids account will probably have most of them but if anyone kept bookmarks handy it could be useful.

Judging by her responses she is not at all aware of the controversy and merely summarized the package she was handed out so she may be open to reason.



 
I don't think there's such a thing yet, what exists is far too narrow to serve as a core outcome. But this explicitly asks about existing tools.

 
Question about the PACE trial:

It's quoted in Bruce Levin's youtube video (timestamped: ) and in David Tuller's blog that (https://www.virology.ws/2020/01/13/...ce-reanalysis-and-the-smcs-expert-appraisals/) that "13% of participants were already “within normal range” or “recovered” on the key variable of self-reported physical function when they entered the trial."

I can't find a solid source for this figure - I can't find in the Wilshire et al 2018 PACE reanalysis paper for instance (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863477/).

This is such a dramatic and ridiculous figure that it would be nice to have a good source, can anyone help here?
 
chillier said:
Question about the PACE trial:

It's quoted in Bruce Levin's youtube video (timestamped: ) and in David Tuller's blog that (https://www.virology.ws/2020/01/13/...ce-reanalysis-and-the-smcs-expert-appraisals/) that "13% of participants were already “within normal range” or “recovered” on the key variable of self-reported physical function when they entered the trial."

I can't find a solid source for this figure - I can't find in the Wilshire et al 2018 PACE reanalysis paper for instance (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863477/).

This is such a dramatic and ridiculous figure that it would be nice to have a good source, can anyone help here?
Click to expand...

From https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724?journalCode=rftg20

"The revised recovery threshold score is so low that it is close to the mean score of patients with osteoarthritis of the hip, rheumatoid arthritis, and Class II congestive heart failure [19,20], as shown in Figure 1. This is a serious concern. But perhaps even more worrying, the new, lowered threshold of 60 meant that a patient could qualify as ‘recovered’ on this criterion with a lower score than was required to enter the trial (the trial entry threshold was 65, a level described by the study authors as representing ‘abnormal levels of physical function’ [3, p. 2229]). An analysis of the publicly available PACE trial data reveals that 13% of participants qualified as recovered on this revised criterion before the trial even began, and for three of these cases, physical function scores were actually lower at the end of the trial than they were at its commencement."
 
The issue of people stopping using health services because they feel failed, negatively judged or gaslighted is an important one. I suspect it is still early to have much data in relation to Long Covid, but do we have any attempts at collating the evidence relating to this in ME?

Though currently they are being largely dealt with as separate conditions by health services, evidence in relation to ME will provide enough basis to cast doubt on any claims that stopping using health care indicates recovery for people with Long Covid. Though the BPS cabal see it as self-evident that medical attention is inherently rewarding for patients regardless of any outcome, I suspect most people are more likely to not want to see a doctor or other medical staff if they recognise it is a waste of time and energy, especially when their energy to act is a limited resource.
 
It would be a good topic for a study, to refute the idea that people with ME/CFS are high users of medical services (after the initial effort to get a diagnosis).

There was a discussion of the topic in this paper (mentioned as sub theme 3)
Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in Australian primary care patients: only part of the story?, 2022, Orji et
To illustrate subtheme 3 one focus group participant said that after being diagnosed there was “no point” due to the lack of understanding of the condition in the primary healthcare sector and that she was too tired to explain her condition to yet another doctor:

Initially I was seeing a succession of GP’s to find a diagnosis and possible treatment. I no longer see a GP for CFS because there appears to be nothing that can be done (Female with ME/CFS, FG1)

Lastly, I am too tired anymore to bother trying to explain my condition to a new Doctor, for the umpteenth time (Female with ME/CFS, FG1)
Click to expand...
 
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