Sadly progress with NICE remains on paper for many .
Change has yet to happen - prevailing opinions are still an issue.
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Opinion 'Long covid' and how medical information is causing illness: A philosophical issue affecting public health, 2023, Garner, Vogt
- Thread starter Kalliope
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- paul garner vogt
Change has yet to happen - prevailing opinions are still an issue.
Andy
Retired committee member
I disagree, compare the 2007 NICE guideline to the 2020 version - change and progress quite clearly happened there.
For sure there is progress. But it is slow.
The BACME survey shows that - many of the clinics have just changed a bit of their terminology to be 'NICE Guideline Compliant' and carried on with business as usual. And that's the services that replied to the survey. That survey shows that the risk that people who meet ME/CFS criteria are diagnosed with other things and given whatever treatment takes a clinic's fancy is a reality. It's possible that we have a whack-a-mole situation - we improve the care of people with ME/CFS, but then there's hardly anyone being diagnosed with ME/CFS anymore. The poor care just moves to Long Covid.
In NZ, the guy in charge of providing training of GPs actively promotes the Lightning Process as a cure of ME/CFS and it's really hard to get decision makers concerned about that.
The BACME survey shows that - many of the clinics have just changed a bit of their terminology to be 'NICE Guideline Compliant' and carried on with business as usual. And that's the services that replied to the survey. That survey shows that the risk that people who meet ME/CFS criteria are diagnosed with other things and given whatever treatment takes a clinic's fancy is a reality. It's possible that we have a whack-a-mole situation - we improve the care of people with ME/CFS, but then there's hardly anyone being diagnosed with ME/CFS anymore. The poor care just moves to Long Covid.
In NZ, the guy in charge of providing training of GPs actively promotes the Lightning Process as a cure of ME/CFS and it's really hard to get decision makers concerned about that.
Yes undoubtedly the guideline has changed , and that is long overdue and hopeful.
But on the ground , where it's medical staff delivering service , change is noticeable by its absence .
This may simply reflect the mammoth task of turning a ship around , however, that's where this type of rhetoric simply reinforces inherent bias.
We have no clinics here, and every medical interaction is a nuanced education process. At most , a medical position has already been taken , if not before the appointment, then within the first 5 mins once the first couple of lines on case file have been read.
Misinformation entrenches this.
Arvo
Senior Member (Voting Rights)
That reminds me of the Oslo group thing https://www.s4me.info/threads/chron...23-the-oslo-chronic-fatigue-consortium.35388/ (which also included Vogt and Garner) where they say
It reminds me of some groups with strong views who cry freedom when they really want to be allowed to promote anti-science and discriminatory views that are not generally accepted.
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I wonder what they felt when a doctor in Sweden who wanted to treat long covid using a raw food diet got fired.
The point as I see it is that the problem is pervasive and systemic. Further efforts to improve the situation likely will not be realized without underscoring that point. We 're still deep in the hole here. Yelling for basic attention and help as medicine strolls by seems quite reasonable.
Andy
Retired committee member
Sure, but using overblown statements will just make us look like undeserving conspiracy theorists and reduce the chances of success.
If 95 out of 100 people turn their backs on me, and I ask "Why is everyone turning their back on me?", that strikes you as a conspiracy theorist? As undeserving? As overblown or over the top because I, in effect, rounded up a little? And I mean, just a little.
I think context matters here. That and the point. Not everything need be literal all the time.
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rvallee
Senior Member (Voting Rights)
Let's not be unnecessarily dense. This is not an academic paper and nothing's actually changed for patients, whether us or long haulers.
rvallee
Senior Member (Voting Rights)
Yeah, by free speech, they always mean "our speech".
Kalliope
Senior Member (Voting Rights)
Former BMJ editor Richard Smith is praising the article on this blog:
Title: Is it the underlying philosophy of medicine that is responsible for a tide of "sickened"? Are the words of medicine worsening public health?
Quotes:
Medicine with its classification of diseases, diagnostic methods, and wide array of treatments will provide not only practical help—perhaps a drug or an operation—but also meaning. I have this pain in my head because of an infection, a hormonal imbalance, or a faulty gene. I need medicine not only to take away my pain but also to provide meaning to my pain.
May this line of thinking explain why the number of people with long-terms sickness in Britain has increased from 1.8 million in 1993 to 2.8 million now, 1.9 million people have long Covid, 2.6 million have attention deficit hyperactivity disorder, and 172 000 adults and children are on a waiting list for an autism assessment, a 400% increase since 2019? May it explain why antidepressant prescriptions in England have increased from 47.3 million in 2011 to 85.6 million in 2022-23? Almost 9 million adults in England are now prescribed them annually (around a fifth of adults).
Henrik Vogt and Paul Garner have written an important paper in which they argue that medicine is not only providing a meaning to people’s pain but also making it worse.
...
I can’t conclude much with confidence from all this, but I think that I can conclude that responding to the increasing numbers of people with long-term sickness, long Covid, attention deficit and hyperactivity disorder, and other conditions with more diagnostic labels, tests, and treatments is unlikely to be the best response.
https://richardswsmith.wordpress.co...he-words-of-medicine-worsening-public-health/
Title: Is it the underlying philosophy of medicine that is responsible for a tide of "sickened"? Are the words of medicine worsening public health?
Quotes:
Medicine with its classification of diseases, diagnostic methods, and wide array of treatments will provide not only practical help—perhaps a drug or an operation—but also meaning. I have this pain in my head because of an infection, a hormonal imbalance, or a faulty gene. I need medicine not only to take away my pain but also to provide meaning to my pain.
May this line of thinking explain why the number of people with long-terms sickness in Britain has increased from 1.8 million in 1993 to 2.8 million now, 1.9 million people have long Covid, 2.6 million have attention deficit hyperactivity disorder, and 172 000 adults and children are on a waiting list for an autism assessment, a 400% increase since 2019? May it explain why antidepressant prescriptions in England have increased from 47.3 million in 2011 to 85.6 million in 2022-23? Almost 9 million adults in England are now prescribed them annually (around a fifth of adults).
Henrik Vogt and Paul Garner have written an important paper in which they argue that medicine is not only providing a meaning to people’s pain but also making it worse.
...
I can’t conclude much with confidence from all this, but I think that I can conclude that responding to the increasing numbers of people with long-term sickness, long Covid, attention deficit and hyperactivity disorder, and other conditions with more diagnostic labels, tests, and treatments is unlikely to be the best response.
https://richardswsmith.wordpress.co...he-words-of-medicine-worsening-public-health/
A rare counter-example to Betteridge's Law. The answer to both those questions is "yes", though not for the reasons the author thinks.
RaviHVJ
Senior Member (Voting Rights)
"Garner, a friend of mine" - says it all.
It's also rather funny that they identify the two key drivers of Long Covid as a) "the biomedical community" and b) the mass media. The vast majority of relatively debilitating Long Covid emerged in the earlier waves and before the vaccines. If you speak to almost any first wave longhauler about their experience, they'll speak of the profound disorientation of developing an illness they hadn't been warned about; of going to doctors who insisted that there were no long-term sequelae of covid beyond respiratory issues post-hospitalisation; of reading nothing in the media about the condition, and there certainly being no public health messaging about Long Covid.
Even following the rollout of the vaccines, there was far too little media coverage of Long Covid and still no public health messaging. And as we all know, biomedical research into the condition has been vastly underfunded.
Their ideas fall apart so remarkably easily. Utterly embarrassing that a former BMJ editor would endorse this, but I guess doing a favour for a "friend of mine" is more important than critically evaluating a shoddy paper.
It's also rather funny that they identify the two key drivers of Long Covid as a) "the biomedical community" and b) the mass media. The vast majority of relatively debilitating Long Covid emerged in the earlier waves and before the vaccines. If you speak to almost any first wave longhauler about their experience, they'll speak of the profound disorientation of developing an illness they hadn't been warned about; of going to doctors who insisted that there were no long-term sequelae of covid beyond respiratory issues post-hospitalisation; of reading nothing in the media about the condition, and there certainly being no public health messaging about Long Covid.
Even following the rollout of the vaccines, there was far too little media coverage of Long Covid and still no public health messaging. And as we all know, biomedical research into the condition has been vastly underfunded.
Their ideas fall apart so remarkably easily. Utterly embarrassing that a former BMJ editor would endorse this, but I guess doing a favour for a "friend of mine" is more important than critically evaluating a shoddy paper.
It's so detached from reality. Oh no, a 400% increase in the waiting list for autism assessment since 2019, what could be causing it?! Well, talk to anyone who knows the state of day-to-day operations in underfunded and understaffed public services, and it's very clear why waiting lists have increased, why the need for assessments is rising while the capacity to fulfil them is falling. But if you're too high up the ivory tower to be able to see such mundane things, then it must be the people on the sharp end of the problem who are wrong...
RaviHVJ
Senior Member (Voting Rights)
It's very paternalistic - he talks about people with Long Covid and autism/ADHD in the manner of a 19th century anthropologist talking about a "native" society. There is no attempt at dialogue, and of course, as you say, if you asked an autistic person about waiting times, or a Long Covid patient about whether the media is driving their illness, you'd very quickly happen upon a much more complicated and interesting picture. But instead, we are these objects to be studied from a distance. We're not to be trusted to explain our reasoning - rather, the academic must unravel our motivations for us. We're also ascribed an extraordinary simplicity. We hate Paul Garner simply because he recovered. We just need to be told that our symptoms are real.
rvallee
Senior Member (Voting Rights)
I really used to think that this kind of nonsense had been left behind centuries ago in scientific professions. This is just wild hubristic nonsense and it doesn't bother building up a coherent point at all. It's seriously wild to raise the issue of SSRI overprescription as if the people are responsible for it, when it's the product of the damn biopsychosocial ideology that the author obviously sees as the solution to itself.
I really don't know where these people get those bizarre ideas about medicine providing people with meaning. It's such a bizarre bunch of nonsense that flies in the face of literally all human behavior about illness and the place of medicine in society or its history. What we are seeing out of medicine is a sort of turning back against science and the creation of an old-but-novel divine being in the form of the good doctor. It makes them both all-powerful, capable of creating illness in millions by the mere power of the possibility of their words being heard, but also completely inept in how to solve it, leaving a problem created by dysfunctional systems to be impossibly solved by the masses.
Because you observe how thoroughly medicine has rejected and covered up Long Covid, tried everything to stifle any mention of it, and then you see this attempt, which began within weeks from the likes of Vogt, at pretending that it's medicine that created Long Covid, or whatever is even the point here, and this is straight up howling at the Moon madness. It doesn't pretend to respect the fact of what happened, it's just holistic disconnection with reality, again pretty much the only holistic thing about this rotten ideology.
And the usual response is really to go against everything known to work in science: record everything, accurately. You keep seeing this idea that if you don't pay attention to it, if you never record it or acknowledge it, it will go away on its own. This has been the approach with us for decades, and decade after decade you see people surprising that "it basically went away (i.e. I didn't notice it continuing) and now it's back?!!"
At least all of this is putting a finishing blow to the idea of technocracy. Imagine these people in charge! Without any accountability! The damage they would wreak is hard to accept even as a thought experiment. Even a fully random democratic process would work better.