Patient perspectives of recovery from [ME/CFS]: An interpretive description study, 2023, Hasan, Busse et al

What this study seems to show is that wishful thinking and defects in critical thinking are widespread among ME/CFS patients, and that some healthcare professionals are happy to join in.

Participants in our study who tried interventions that conflicted with community knowledge about ME/CFS were often reluctant to share their recovery narratives in online communities for fear of being ostracised or dismissed; oftentimes, these conflicts arose around mind-body approaches, which some ME/CFS patients reject because it does not fit their logic model of illness.
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I don't think a person can be cured by deciding to be cured. It's just not how reality works. We do have to set some standards of what we're willing to believe and these mind-body cures don't meet them. The problem isn't our unwillingness to believe, it's that these out of this world claims are NEVER backed up by reliable evidence, despite these ideas having been around for centuries in some form. There is nothing wrong with applying some critical thinking and discarding ideas that don't have merit. If this stuff really worked so well, why can't its proponents for once demonstrate this clearly.
 
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I don’t think it’s a failure of logic on the part of patients. It might be a failure of diagnosis on part of clinicians it might be time or lucky coincidence that leads to recovery. Or social pressures that lead to perceived recovery or performance of recovery.
Since it is said that these patients were reluctant to inflict their programs on the wider community, good luck to them.
 
So they got RecoveryNorway, whose shtick is the LP where people proclaim they have recovered using woo, for a study that concludes that people who recover did so using woo. People who recovered, but somehow it's a huge strain on them to simply talk about it. Right.

Good grief. What the hell is happening with medicine? Don't they see how absurd this all is? They simply don't seem to care to validate what they do, are content to just pretend.

I occasionally see long haulers who report that they improved because of stuff like that or from getting more active. Which is consistent with the wild fluctuations and normal recovery patterns, correlation not being causation and all. But at most it's in the 5-10% range, and that's significantly lower than the recovery rates. Depending on when they are assessed, of course.

I also see lots and lots of relapses and hard crashes. Sometimes from people who joyfully declared themselves recovered. Or mostly recovered, as is usually the case. This is exactly like how mistakes in news media happen: the retraction/correction to the front page shocker is on page A29 in a small corner.

But the idea of taking some woo-woo where the whole thing is to declare themselves recovered and take it as fact is completely beneath what actual professionals do, these quacks are beclowning their entire profession.
 
This looks like a rather poorly designed student project. There is no data given about which treatments patients attributed their recovery or improvement to, no questionnaire or other data on how sick they were and how they are now, no info on how long this claimed recovery or improvement has lasted.

Despite recruitment by social media and word of mouth including Recovery Norway, they only managed to find 7 participants who said they had fully recovered.

Among fully recovered participants, all but one attributed their success to a combination of mind-body techniques and graduated activity (e.g., guided coaching, the Lightning Process, neurocognitive training); one participant achieved full recovery through benediction by a religious figure.
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That suggests very few, probably 1 to 3 recovered following LP, despite Recovery Norway's involvement. Hardly a ringing endorsement.
 
The paper states: "This study was funded through an anonymous donor via the McMaster University Trust."

I wonder if this donation was solely intended for this study or line of research. If so, it is a bit curious that this donor donated to McMaster University to perform an ME/CFS study, given that there hasn't been a group there that has focused on ME/CFS.
 
ME/CFS Skeptic said:
The paper states: "This study was funded through an anonymous donor via the McMaster University Trust."

I wonder if this donation was solely intended for this study or line of research. If so, it is a bit curious that this donor donated to McMaster University to perform an ME/CFS study, given that there hasn't been a group there that has focused on ME/CFS.
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We have several threads on papers by Jason Busse who is on the author list and presumably the professor supervising this research.
 
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Ash said:
I don’t think it’s a failure of logic on the part of patients. It might be a failure of diagnosis on part of clinicians it might be time or lucky coincidence that leads to recovery. Or social pressures that lead to perceived recovery or performance of recovery.
Since it is said that these patients were reluctant to inflict their programs on the wider community, good luck to them.
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Paul Garner states himself ‘I was almost meeting the criteria for ME/CFS’ and THEN he recovered.

except the criteria relate to ongoing for a specified length of time.

you can’t ‘recover’from something you ‘almost’ had and go around telling all these mostly women all vulnerable and chronically ill that they just need your attitude - not without someone analysing your personality and thinking pattern issues behind that

the authors basing a study for all who have ME/CFS which will include those meeting the criteria properly and most of whom will have more severity than any in this study who might meet these criteria and certainly had it for longer is like recruiting a load of people who had a less bad car crash injuries to teach those who had appalling ones how to change their attitude

it’s gross and not just stupid but unforgivable deliberate stupidity.
 
I participated in this study for what it's worth (it wasn't about permanent improvement, but any sort of improvement). I described my improvement during the initial relapse remitting part of my illness. I don't think anything I said was actually quoted in the final manuscript.
 
Why does Jason Busso continue to refer and encourage people w/LC and ME to his paper when they are telling him that they have become worse with these so called treatments?

"I encourage you to engage with people that have recovered from post-infectious syndromes. They are worth listening to for their insights" They recovered naturally just like PG did.
 
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Mij said:
Why does Jason Busso continue to refer and encourage people w/LC and ME to his paper when they are telling him that they have become worse with these so called treatments?

"I encourage you to engage with people that have recovered from post-infectious syndromes. They are worth listening to for their insights" They recovered naturally just like PG did.
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I'm not convinced he didn't just slap his name on the paper after reading the manuscript and suggesting a few minor edits. He obviously has not looked at the collected data.
 
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