Wired Magazine: The Painful Truth About Long Covid by Alan Levinovitz, 2026

[Peter T]

But I also think ME/CFS advocates should acknowledge that there might be a few people who match the BPS view of the condition: Anxiety, avoidance, burnout, depression, hypochondria. I think acknowledging this would be beneficial for ME/CFS advocacy.

This is sounding dangerously like those that argue ME is the real biomedical condition and that those with CFS have a psychological/psychogenic condition. [added- That is those that claim their ME is real but your CFS is not] Obviously there are high levels of misdiagnosis generally in this field, so any research needs to be confident that their ME/CFS cohort genuinely fits their chosen diagnostic criteria; we don’t know the aetiology of the condition we are talking about, though we have extensive evidence suggesting biological differences, however can say even less about those who have been misdiagnosed as having the condition.

Given PACE and other early CFS studies used the Oxford Criteria it is likely they include some with chronic fatigue who don’t actually have ME/CFS as currently understood. However none of these studies demonstrated any long term objective benefit for the psycho behavioural interventions, suggesting they may not work for anyone with chronic fatigue.

The misdiagnosed could include physical conditions such as hypothyroidism or MS, as well as psychiatric conditions such as depression which may or may not have a biological basis, as well as some who can not currently be given an actual diagnosis other than some catch all phrase meaning unexplained, but to also include psychogenic conditions with our present understanding is highly speculative given we don’t even know such exists.

[added - sorry cross posted with @Trish ]

 

[Robert 1973]

Donnino designed his trial with three arms specifically to address the sham brain retraining question.

I’ve just had a quick look at the study design here: https://clinicaltrials.gov/study/NCT06045338?tab=study

There seem to be 3 arms:

1. Mind Body intervention #1

2. Active Comparator: Mind Body Intervention #2

3. No Intervention: Usual Care

But I can’t see any details about intervention #2. There is just a repetition of intervention #1.

And why is it that no one thinks, or wants to think, that they are in the subset that might be amenable to a "ritual" intervention? Is it because they tried it once, or twice, or ten times, and it failed? That, it seems to me, is bad logic.

Er, does the fact that people have paid to try these interventions not suggest that they were willing to believe that they might be in a subset that is amenable to them?

How many times do you suggest that patients should pay to try an intervention that hasn’t worked for them before (and may have made them worse) for which there is no reliable evidence of efficacy?

I’m reminded of the suggestion that the definition of insanity is doing the same thing over and over again and expecting different results.

Paul Garner was already recovering in that window of time when he received the phone call of enlightenment. )

My impression was that he had probably recovered by that time. From memory, he reported that he was walking 10,000 steps a day, feeling well and not experiencing any PEM (which would have meant that he no longer met the dx criteria for ME/CFS). At that point he wasn’t sure whether to continue increasing his activity gradually or just go for it. He chose the latter, and found that he didn’t have ME/CFS, whether or not he had previously met the criteria. But I may be misremembering.

I don't know if we have a thread for the protocol yet, but, if not, we should have a look at it.

We should. From my quick look it doesn’t look promising. I may have overlooked something but it seems to rely on subjective self-reported outcome measures (2 about anxiety) at a max of 13 weeks.

As far as I can see, it doesn’t mention PEM (or anything similar) in the inclusion criteria so it’s not relevant to ME/CFS.

I predict that the authors will declare it to be an effective treatment for LC; we will point out the familiar methodological flaws; and AL will interpret this as confirmation of our monomania.

 

[Peter T]

I understand the argument, but if that's the case why were there no significant between group differences in objective or long term subjective outcomes in PACE, FINE and all the other CBT/GET clinical trials? Many of them had such wide diagnostic criteria, they were sure to pick up people with psychogenic conditions, yet no cured subgroup appeared.

I was a subject late on in the FINE study and they were at this stage struggling to recruit. I was included when they dramatically expanded their geographical catchment area and was still working so would have best been described as mild. Though I am confident I would have met more stringent modern ME/CFS criteria, one does wonder if they did pull in more fringe elements meeting the broader Oxford criteria in their struggle to up numbers.

 

[Sly Saint]

"And we know what happens then: Nobody ever gets better."

unless they change how 'recovery' is measured, as the PACE authors did
Simon Wessely :
"They changed the recovery measure because they realised they had gone too extreme and they would have the problem that nobody would recover."

R

Post in thread 'Simon Wessely Research & Related Quotes'

May 27, 2024

Searching for a quote on the recovery treshold in PACE I only retrieved this similar quote:



1. Anyone happened to save an image of the quote?

2. Does anyone have an idea what other quote I'm looking for and can add it here? If I recall correctly, someone did a transcript of an interview, including noticing that the audience laughed at SW's explanation.

I’m not sure I understand your questions. The images of the quotes are in the tweets, including the references to the audience laughing.

Images of transcripts from Tweets:

• Robert 1973

• 

 

[Lou B Lou]

unless they change how 'recovery' is measured, as the PACE authors did
Simon Wessely :
"They changed the recovery measure because they realised they had gone too extreme and they would have the problem that nobody would recover."

R

Post in thread 'Simon Wessely Research & Related Quotes'

May 27, 2024

Searching for a quote on the recovery treshold in PACE I only retrieved this similar quote:



1. Anyone happened to save an image of the quote?

2. Does anyone have an idea what other quote I'm looking for and can add it here? If I recall correctly, someone did a transcript of an interview, including noticing that the audience laughed at SW's explanation.

I’m not sure I understand your questions. The images of the quotes are in the tweets, including the references to the audience laughing.

Images of transcripts from Tweets:

• Robert 1973

• 

From 'Post in thread 'Simon Wessely Research & Related Quotes' Images of transcripts from tweets'

Image 2

Simon Wessely: -'But what I would point out is that criticism of that particular trial [PACE], which was of Chronic Fatigue Syndrome, arose before the trial even started.

The petition to stop the trial – it began in 2004 or 5 – [began] before it even started. And that is unusual. There were no results at that time. There wasn't even a patient recruited ….. '


And that's true. Patient criticism of/opposition to PACE began before the trial started and before any patients were recruited. But AFTER the first PACE protocol was put online, which was called 'The PACE Trial Identifier'

SW makes the patients sound irrationally and unreasonably 'opposed'. But patients were criticising what was revealed about PACE, recruitment criteria and methodology etc, in the PACE Trial Identifier document. Does anyone still have a copy of it?
.

 

[Robert 1973]

I understand the argument, but if that's the case why were there no significant between group differences in objective or long term subjective outcomes in PACE, FINE and all the other CBT/GET clinical trials?

This question is discussed briefly on the placebo thread: https://s4me.info/threads/placebo-effect-discussion-thread.30370/page-4#post-598708

If there are subgroups of people diagnosed with LC or ME/CFS whose illness is primarily psychogenic, then it is conceivable that CBT and GET may not work because the therapy involves trying to convince them that there is no pathology which prevents recovery. Mind-body interventions like LP which claim to accept that there is something biological wrong but assert that the power of the mind can cure whatever is wrong with the body could theoretically be more effective – just as the placebo effect in pharmaceutical trials appears to be stronger than in CBT/GET trials.

Again I repeat to @Learningandlistening that I used to assume that these subgroups exist. I was surprised when I studied the data from trials of CBT/GET to find that there was no evidence of them helping anyone. There is less data for “mind-body” interventions but again I’ve not seen any which provides evidence of efficacy.

 

[forestglip]

I’ve just had a quick look at the study design here: https://clinicaltrials.gov/study/NCT06045338?tab=study

There seem to be 3 arms:

1. Mind Body intervention #1

2. Active Comparator: Mind Body Intervention #2

3. No Intervention: Usual Care

But I can’t see any details about intervention #2. There is just a repetition of intervention #1.

I've made a thread for that trial registration: Mind Body Intervention for Long COVID-19 [Massachusetts, USA]

 

[Robert 1973]

Let's say Donnino (who I talk about in the piece) runs his trial. It's rigorous, and we see a big effect size.

We can see from the design that it’s not rigorous.

'll answer a couple questions, but clearly I'm becoming the kind of interlocutor I hate to be: angry, rude, and dismissive. I don't think this is a good forum for me, unfortunately. Not because I dislike being aggressively challenged. Because I don't like being an asshole, and I seem incapable of not being one when I spend too much time here. For that, I apologize unreservedly.

The difference is that you get to be an asshole, apologise, and carry on with your life and paid work.

But if somebody somewhere who claims to have my diagnosis acts like an asshole – and people with ME/CFS have far more reason to be angry than you – it is used against the whole community indefinitely in papers, articles and books, and by many who interact with us. And it is the same flawed reasoning at play – using anecdotes to inform beliefs.

Meanwhile, after more than 30 years of severe ME/CFS, my life continues to be a constant struggle, while snake oil salesmen and false prophets continue to profit from my suffering.

 

[Mij]

I don't know if we have a thread for the protocol yet, but, if not, we should have a look at it.

Found one study posted here

 

[rvallee]

no matter what the trial design

Obviously, for the same reasons a drug trial with the same design would be dismissed. There are good reasons why standards in drug trials have tightened up to this level. Open label trials with subjective outcomes run by biased people where the treatment consists of coaching participants are obviously not valid for anything. You can pretend that the trial lead is not biased in favor of a positive outcome but that's just unserious.

This is why when PACE was being set up, there were promises of rigorous objective outcomes. Even though the trial was run by people who were obviously biased in favor of a positive outcome. But then they abandoned that, and even downgraded one of the key assessments to below the entry criteria. And they did have multiple competing arms. It was literally marketed as "the definitive trial", so they had to cheat, and they did. Because they couldn't accept the outcome.

It's so damn weird that someone who claims to be an expert in medical pseudoscience is saying this stuff. You know this meets all the red flags of pseudoscience. The only one it doesn't raise is, oddly, because this stuff is a dominant model in the medical profession, which debunks your claim that the only reason it's not widely used to cure people is because it's suppressed and people can't talk about it. Appeal to authority is pretty much the only real argument here, along with "look at all those anecdotes, how can you not believe them in a wildly fluctuating illness that typically slowly improves on the long term".

You are basically like someone writing a book on ethics arguing against AI, on ethical grounds, entirely generated by an LLM. It's incredible what people can overlook when they've decided that an obvious scam must be real.

 

[rvallee]

So, on the one hand, if you promote a think-better therapy, you have the certainty of harming some of the participants and the ME/CFS population who do not have an illness curable by a think-better therapy - because you are suggesting that remaining ill is a choice or a failure. You have the certainty of lining the pockets of people promoting pseudoscience. You have the certainty of people losing more trust in medical professionals and society sliding towards an acceptance of all manner of pseudosciences, because if anecdotes are enough, anything can work.

Which is not a hypothetical or fringe possibility of harm. The Norwegian government recently argued in court, using the head of medical research as expert witness, affirming exactly that, that people with ME/CFS should have to try every single thing that hasn't been ruled out not to work, which is proving a negative, and therefore impossible. They were arguing in court against someone getting disability for ME/CFS, asserting that there is an unlimited number of rituals that person should try before getting disability support, all of which would take multiple lifetimes.

All this breeds distrust into experts, because if the same experts can deal in medical science in one sentence, and start promoting things that you would normally be handed on a pamphlet on a street corner by someone in a weird costume, it becomes so much easier to dismiss the real expertise. And it is happening, at scale. Medicine is significantly regressing by promoting healing magic from the same authority that makes physicians credible when they are talking about real knowledge built on science.

Somehow no one promoting this healing magic stuff ever seems to think about that. They seem to think it's all benign, using absurd arguments they know to be false, such as saying that if the treatment itself cannot reasonably be harmful, then it has to be good, which would place homeopathic in the safe category. Which is nonsense and absurdly broken.

 

[Utsikt]

Brief reply: Donnino designed his trial with three arms specifically to address the sham brain retraining question. When his results come out, we should discuss. I predict that if they are positive, people will be completely unwilling to accept them, no matter what the trial design or what the data says. If they are not positive, I'll say, "That's good evidence against what I believed."

Just wanted people to know I am following things as best I can, but don't have a ton of time to craft long replies right now. Will try to in a week or so, but can't make any promises.

I have looked at that trial. They might believe that they tried to address the sham question, but they were not successful. All of the outcomes relate to how you think about pain and the effects of pain on your life, and only one of the intervention actively tries to alter that by instructing the participants to act and behave differently.

So the outcomes measure adherence, not necessarily effect.

I don’t have a good fix for this issue. But we can’t pretend the issue isn’t there just because it’s difficult to get around.