Wired Magazine: The Painful Truth About Long Covid
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MrMagoo
Senior Member (Voting Rights)
Weight is still associated with character though.
“all were proposed as more important factors, largely because they made it impossible for weight to be associated with character” source?
I don’t know why I’m bothering. You keep pivoting to a different scenario rather than arguing your actual argument. Either the argument has its own merits or it doesn’t.
Scientifically, it doesn’t.
People don’t agree with you, that’s a you problem not a them problem. Also they didn’t like your article and found it offensive.
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ScoutB
Senior Member (Voting Rights)
Sure, all of them, depending on how you define things.
The thing is, many of us have experienced large ups and downs in our illness, even periods of remission. Recovery rates are also often reported to be higher for those who have been sick for 2-3 years or less. Some people seem to recover, others don't. It's possible this is down to subtypes, or fluctuations in some internal or external variable that we haven't recognized.
Many of the theories discussed on this forum involve immune regulation or neurology, systems complicated enough to explain a disease that is self-limiting in some cases, and stuck 'on' in others.
We've got a bunch of people here who have not recovered, have been sick for decades, lost almost huge parts of their lives to it, and there's been hardly any money spent to figure out why. And the bulk of the research that has been done, has gone into trying to answer that question: "can they exercise or think their way out of it?"
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Maybe if The Lancet and people like Adam Gaffney were willing to be honest about the PACE trial and acknowledge what is self-evident--that a trial in which participants can be "recovered" on key variables at baseline because the investigators dramatically weakened their outcome thresholds after collecting their data is a piece of garbage--we'd be in a much different place. That's where much of the blame should go!!! Same goes for Nerli et al, and so on. I think you had an obligation to exercise some independent judgement on those rather just saying Tuller says it's research misconduct and Ebell disagrees--without providing any indication of what the concerns raised are.
As I've said, you're a smart guy!!!! You know very well you can't claim clinical significance when your results don't meet the MCID you designated and when you base the claim solely on the changes within the intervention group rather than the differences between groups--the metric of interest in a clinical trials. I'm surprised and disappointed that you don't think you can adjudicate those issues when the methodological violations are so self-evident and egregious. You certainly CAN adjudicate that rather than just leaning into "it's a debate." You just don't want to. But I know you're smarter than that.
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Concentric_Spiral
Established Member (Voting Rights)
Hence the accusations of bad faith.
The two medicos referenced in the article treat the following conditions on their website with brain training instead of pharmacological or non pharmacological evidence based treatment. If you advertised that in my part of the world you would be struck off the medical register. 
MrMagoo
Senior Member (Voting Rights)
Thirded
One of the total of 13 (not unevidenced 'thousands' that sounds word-for-word familiar to me and I remember being a never-evidenced part of the spiel of If I remember correctly Garner/Symington) testimonials, mostly covering not ME/CFS, was Plantar Fasciitis - which intrigues me how brain retraining alone claims it tackles...
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Hoopoe
Senior Member (Voting Rights)
@Learningandlistening in the article there is a misconception about placebo effects. Contrary to popular belief, there is little evidence that placebos can induce powerful healing effects.
The idea of the placebo induced healing effect is an interpretation based on the observation that the patients in the placebo arm of a clinical trial report improvement in symptoms. The problem with this interpretation is that there are many alternative reasons why patients can report improvement despite not having received an effective medication. Some reasons are regression to the mean, social desirability influencing how patients respond, biased reporting by patients driven by a desire to be healthy, and the Hawthorne effect. The improvement seen in the placebo group is the combined effect of all these nonspecific factors. One does not need to introduce the concept of a mind-body healing effect to explain what may happening, and any actual healing effect, if it exists at all, may be negligible.
Is the placebo powerless? Update of a systematic review with 52 new randomized trials comparing placebo with no treatment
This topic is crucial for understanding criticism of mind-body interventions. If one views placebo effects as powerful and curative, then criticising studies like the PACE trial for lack of blinding may seem excessively harsh and the modest effects reported by these studies may be interpreted as indicating the treatment is useful. If we instead believe that one must control for nonspecific effects, then these studies will appear to be of poor quality and not credible.
Many studies from the fields of psychology, psychiatry, alternative medicine and mind-body interventions do not adequately control for nonspecific effects and the authors are happy to make claims about a treatment being effective when they may be simply reporting noise.
We observed that the authors of the PACE trial and other similar studies were unable to adequately respond to criticism of their failure to control for nonspecific effects. We also observed a trend of the studies moving away from more objective outcomes, where nonspecific effects are less of an issue, because these tended to yield no results.
There seems to be an entire field of research that is unable to admit that it is employing misleading methods. They present themselves as experts on mysterious mind-body effects and allegedly psychosomatic illnesses when they're just documenting ordinary things, like illnesses tending to get better over time and sick patients feeling more optimistic when they can receive some treatment.
The idea of the placebo induced healing effect is an interpretation based on the observation that the patients in the placebo arm of a clinical trial report improvement in symptoms. The problem with this interpretation is that there are many alternative reasons why patients can report improvement despite not having received an effective medication. Some reasons are regression to the mean, social desirability influencing how patients respond, biased reporting by patients driven by a desire to be healthy, and the Hawthorne effect. The improvement seen in the placebo group is the combined effect of all these nonspecific factors. One does not need to introduce the concept of a mind-body healing effect to explain what may happening, and any actual healing effect, if it exists at all, may be negligible.
Is the placebo powerless? Update of a systematic review with 52 new randomized trials comparing placebo with no treatment
This topic is crucial for understanding criticism of mind-body interventions. If one views placebo effects as powerful and curative, then criticising studies like the PACE trial for lack of blinding may seem excessively harsh and the modest effects reported by these studies may be interpreted as indicating the treatment is useful. If we instead believe that one must control for nonspecific effects, then these studies will appear to be of poor quality and not credible.
Many studies from the fields of psychology, psychiatry, alternative medicine and mind-body interventions do not adequately control for nonspecific effects and the authors are happy to make claims about a treatment being effective when they may be simply reporting noise.
We observed that the authors of the PACE trial and other similar studies were unable to adequately respond to criticism of their failure to control for nonspecific effects. We also observed a trend of the studies moving away from more objective outcomes, where nonspecific effects are less of an issue, because these tended to yield no results.
There seems to be an entire field of research that is unable to admit that it is employing misleading methods. They present themselves as experts on mysterious mind-body effects and allegedly psychosomatic illnesses when they're just documenting ordinary things, like illnesses tending to get better over time and sick patients feeling more optimistic when they can receive some treatment.
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JellyBabyKid
Senior Member (Voting Rights)
Additionally, these studies and clinic interventions lack long term follow up, so there is no understanding that any short term recovery hasn't been sustained
For example;
"Fewer than one in four NHS Trusts/ICBs are able to track their ME/CFS patients and two thirds of NHS Trusts and ICBs hold no information whatsoever on their ME/CFS patients."
Edit to add: the UK clinics are based on rehab models and already use a lot of mind-body interventions as they teach mindfulness and stress reduction and pacing as part of their management strategies.
It is hard to demonstrate in the studies that exist or six weeks clinic attendance that this specific intervention caused the improvement and not any one of a bunch of potentially uncontrolled for confounding factors, it's not so much saying nobody ever gets better, but being able to actually identify and replicate the cause of the recovery or improvement.
The NICE guidelines literature review says that so far this has not happened, as the research just isn't good enough. And after 3 decades, I feel it has had a fair shot to prove it and other, biomedical interventions need rigourous testing.
That's not to say that mind body interventions can't still be in available for those who find it supportive, but that the evidence so far doesn't demonstrate that this is an approach that is curative for everybody, long-term, but it might helpful for a small subset or as a supportive option.
Further edit to add: without long term follow up there is also no awareness that some people get worse over time, or following the intervention and/ or any initial or short term improvement.
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Jonathan Edwards
Senior Member (Voting Rights)
All of that paragraph is to my mind quite insightful until you get to the 'respond well to BPS interventions'. We have no evidence whatever of any 'responses', merely people happening to get better around the time they engage in a treatment. We have no evidence of any greater rate of improvement than expected from an irrelevant intervention or time. This is clinical science 101, as others have said.
The remarkable thing about the PACE trial, if anything is how dismal CBT and GET seemed to be as placebos. Drugs that we now know don't work showed far better results in open studies. That is quite strong evidence supporting the general patient view that thes BPS interventions on average actually make people worse.
Moreover, in the analogy with gluten sensitivity I would guess that of those with Long Covid, the vast majority - 80-90% have the equivalent of non-coeliac gluten sensitivity (assuming that is a real thing, which I wouldn't judge). Maybe 10% will end up with ME/CFS and maybe 5% have 'other reasons' for thinking they have Long Covid, which may lift at any time.
What we know from studying the BPS literature and behaviour over the last decade is that they are quite preposterously incompetent at science. So to take them seriously at all we need some reliable data. There aren't any.
Jonathan Edwards
Senior Member (Voting Rights)
What evidence do we have for 'exposure therapy' being of value in any context like Long Covid? You forget that all the studies on such therapies are garbage. The BPS people have never learnt to do trials properly - search through the forum and you will see everything taken apart in detail. I was gobsmacked when I first realised how bad science was in this field. Even now I occasionally get taken aback as to how incompetent they are.
And also you now switch to 'brain retraining', which is not BPS. It is a different group of charlatans who claim they have methods based on new neuroscience. There is no neuroscience that supports any brain retraining methods in current practice.
On the forum we have recently been focusing much more on brains and brain cells. You could argue that it makes a lot of sense to try to 'retrain' these cells to go back to signalling normally. But nobody has any idea how to do that. The chances that you can do it through psychotherapy are close to zero. Right from the start, I, and others, noted that if cognitive impariment in ME/CFS indicated a neuropsychiatric element it would be a psychotic element, not a neurosis. Psychosis does not respond to psychotherapy, for obvious reasons. It involves thought disturbance outside the bounds of the normal range of beliefs.
I am afraid that you are engaging in a field dominated by charlatans, where any real understanding depends on picking your way through a mass of non-sequitur arguments and focusing on reliable evidence. I can understand why you raise the point you do. It makes some intuitive sense but needs to be separated from all the baggage of 'psychological medicine'. The problem is that you end up at risk of being a typical humanities voyeur - "how interesting these poor miserable people are" - while upsetting those very people with clumsy tactless remarks based on hearsay and appeal to the authority of local professionals who don't really understand the problem either.
When my wife suffered from a serious mental disorder I came to realise that 'neuropsychiatric' has nothing to do with 'psychological'. A neuropsychiatric problem is a disorder of thinking due to a brain problem. A psychological problem is a problem described by the theories of psychologists, which by and large are crap, as many of them freely admit now (read Brain Hughes). The application of psychological theory to ME/CFS has shown just how bad they are.
JellyBabyKid
Senior Member (Voting Rights)
Exposure therapy suggests a phobia that needs deconditioning?
The analogy in physiologically exercise intolerant conditions would be like trying to habituate a diabetic and increasing their tolerance to sugar by gradually increasing their intake.
I have given up trying to make valid criticisms, since the author seems to have come here to explain his thinking, not to learn. He even told us at the start that he would not be engaging with criticisms of the substance of his article, if I recall correctly. I am addressing him in the third person here, as he has expressed his intention not to interact further with me.
I have a set of questions about sources of evidence which he will probably choose not to answer. That is his prerogative.
My questions:
What made you decide to focus a large part of the article and of your time interviewing people on a few individuals who claim to have been cured of Long Covid by Brain Training? How did you recruit them? Did you make an effort to find and interview people who found brain training led to worsening, or who thought they had recovered, only to relapse? What did you do to verify the thousands of online stories of recovery you claim to have seen. Can you provide evidence of them and the veracity of their stories including long term followup? Did you attempt any actual research such as following a cohort brain training recruits before, during and after with follow up of at least 2 years? Or did you simply seek anecdotes from a few to make your article more emotive.
Edit to add: in case any of the people who recovered who are quoted in the article are concerned by critiques here, I want to assure them that I am not criticising or disbelieving them. I am glad for them that they have recovered and hope they don't relapse. I am agnostic about the treatment and whether it could directly cause recovery. I await some well run clinical trials with objective and long term recovery outcome measures and a control group with an equally enticing and engaging control intervention to create equivalent expectation in patients and therapists.
I have a set of questions about sources of evidence which he will probably choose not to answer. That is his prerogative.
My questions:
What made you decide to focus a large part of the article and of your time interviewing people on a few individuals who claim to have been cured of Long Covid by Brain Training? How did you recruit them? Did you make an effort to find and interview people who found brain training led to worsening, or who thought they had recovered, only to relapse? What did you do to verify the thousands of online stories of recovery you claim to have seen. Can you provide evidence of them and the veracity of their stories including long term followup? Did you attempt any actual research such as following a cohort brain training recruits before, during and after with follow up of at least 2 years? Or did you simply seek anecdotes from a few to make your article more emotive.
Edit to add: in case any of the people who recovered who are quoted in the article are concerned by critiques here, I want to assure them that I am not criticising or disbelieving them. I am glad for them that they have recovered and hope they don't relapse. I am agnostic about the treatment and whether it could directly cause recovery. I await some well run clinical trials with objective and long term recovery outcome measures and a control group with an equally enticing and engaging control intervention to create equivalent expectation in patients and therapists.
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I would add the question of why there is no mention of Professor Crawley's pediatric Lightning Process trial, published in Archives of Disease in Childhood, a Lancet journal almost a decade ago. It was flagrant research misconduct--and now carries a 3,000-word correction and a 1,000-word editor's note that tries to explain with tortured reasoning why it wasn't retracted. More to the point, where is the section on the Finnish Gupta study, which has reported null preliminary results? It seems odd to call for research into this area and then not mention these high-profile of just what is being called for. Huge omission.
JellyBabyKid
Senior Member (Voting Rights)
Slightly off topic, but it would be an interesting project, to collate as many ME and LC recovery and non recovery stories as possible and do a detailed interview on what actions both took/take to manage their health and that triggered their improvement or worsening and follow up for a couple of years to track the course of their health.
Just me?
Jonathan Edwards
Senior Member (Voting Rights)
Yes, I cannot work out why anyone should think this was worth investigating, since it has already been tried for a decade, with no evidence of any benefit. The NICE committee professionals claimed they had been doing a more gentle increase in activity for years already because they knew the PACE protocol was not suitable. (But of course there were no trials for this new method.)
It is a bit like homeopathy. Hahnemann noted that Jenner had resurrected the middle eastern practice of variolation (with a twist) and shown that one disease could be treated by 'like with like. So he applied it to everything. Exposure therapy seems much the same historic quackery.
I remember that I should not have been so surprised about how bad the evidence base for psychological medicine was. As a student I was asked to volunteer to treat a patient either with hypnosis or exposure therapy. I chose hypnosis.. I had no training in either, or any protocol to follow. It was just assumed that as a bright student I would probably find a way to con the patient into thinking that I knew what I was doing, like my seniors had. I decided to grow vegetables that month. The contrast with clinical pharmacology could not have been starker.
As I’ve said: You actually have to look at the data and the evidence. These are not case-control studies, these are case studies, 2 completely different things. Full recoveries are regularly reported in case studies, which as discussed is to be expected as any statistican will easily explain and as mentioned nobody reasonable pays attention to meaningless storytelling.
In placebo-controlled studies in ME/CFS we actually have data that full recoveries tend to not be reported in the rates you seem to insinuate. Most studies report improvement, which can be due to a number of factors (regression to the mean, Hawthorn effect, "placebo" etc), but full recovery often tends to not even be examined and almost never objectively (step count, return to work etc). We don’t have much data suggesting that this rate is somehow magically higher in clinical trials, if we did it would give us some serious food for thought. If you look at the NIH intramural study you will see that the natural full recovery rate there (23%), which is all completely outside of any intervention trial, is higher than within the PACE trial (with more reliable estimates placing it under 10% and roughly the same as White's fantasy rates). Certain factors ought to play a role, such as duration of illness, number of medical examinations (to rule out other conditions) and possibly even gender or severity of illness and other factors currently unknown to us, but there is no data suggesting that running trials on people with ME/CFS yields magical recovery rates. After all people have been running hundreds of studies and millions of people have undergone interventions such as CBT and GET over numerous decades. Things are slightly different now with changes to NICE, especially in the US where private physicans play a greater role, but pretty much everyone in Europe used to have to undergo GET and/or CBT. The long term outcome measures like return to work all look horrific. Please present evidence of your suggestions.
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