Wired Magazine: The Painful Truth About Long Covid

[JellyBabyKid]

what neuroscience backs up this explanation?

This one is usually the one quoted;

Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain: A Randomized Clinical Trial

Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain: A Randomized Clinical Trial - PubMed

ClinicalTrials.gov Identifier: NCT03294148.

pubmed.ncbi.nlm.nih.gov

Edit to add: there is a thread on it on S4ME
Further edit to add: this thread: https://s4me.info/threads/effect-of...ack-pain-an-rct-2021-asher-gordon-et-al.22612

 

[Nightsong]

Humans, in general, are great at describing how they feel, but they're terrible at reliably assigning causation. I see no more reason to give any more credence on that to a believer in Sarno's drivel than to an advocate of homeopathy, crystals, faith healing, reiki, or ceremonies involving tree frogs. Levinovitz could find adherents of all of those, and write similarly about them, but I suspect the average WIRED reader would not take him quite as seriously if he did.

Levinovitz's experts are quite correct: many of the "biomedical" claims that have historically been made about LC & ME/CFS do not stand up to serious scrutiny, as we have discussed at length on S4ME over the years. As anyone with any relevant background can attest - until recent times and with a few particular exceptions - it has been all too often the province of third-raters and marginal academics with niche ideas. What he fails to acknowledge is that the problems associated with psychobehaviouralism are just as severe, if not more so, and unlike the problems with biomedical research they are pervasive and field-wide.

Psychosomatics does not attract serious scientific minds; indeed, it seems to disproportionately attract those who enjoy piling calumnies on patients, speculating adversely about their personalities, attempting to associate them en bloc with criminality, and framing even the most tame of entirely legitimate critiques as abusive. Their actions account in no small part for why patients are so frequently mistreated by the medical profession.

I have little time for the argument that people somehow cannot talk about these modalities. There is oodles of material out there promoting them: advertisements, Facebook groups, sympathetic published articles, monetised YouTube channels & so forth. And, for that matter, lengthy articles in WIRED claiming that they can't talk about them.

So-called "mind-body" interventions are very close indeed to what the NHS's psychobehavioural clinics have done for decades on end, with no results to speak of save for accumulating aggrieved patients. What the psychobehaviouralists object to is that they are no longer able to dominate the debate as they once did; the Internet has democratised it.

As someone who has spent their days & nights for many years in severe pain (not a feature of my life before GET, incidentally); as someone who has lost any serious opportunity to contribute to scientific knowledge or even to society; as someone (to crib a line from the Rubaiyyat) whose leaves of life are falling one by one, I can muster very little sympathy for this indulgence of pseudoscience.

 

[JellyBabyKid]

There are multiple issues with this article, but for me the most egregious, and that frustrates me the most (barring the painting all patients as crazed activists part) is that it isn't a discussion about the efficacy of the methods for some people; it is complaining about being silenced, and making themselves the victim.

If they said this approach can be helpful as part of the picture, then it becomes a discussion about the grey area in the middle between biological and mind body and supportive approaches to manage better, but this is not that and it never is.

It's always framed as "we have this fantastic news to share, but we aren't allowed to talk about it" while telling this same story again and again in endless podcasts, books, articles like this, apps, programmes - I was invited to self refer to the the live well, feel better course by the Long Covid clinic and session one is mind-body.

It's not this secret cure that's being gate kept by crazy activists who don't what you to know, it's the literal mainstream response, but they don't talk about that, they want to talk about being silenced, with zero irony, and even less room for the critical debate they claim is being denied.

 

[skronen]

This may seem like an obvious point but if the brain training stuff really worked, why would only some patients respond to it? Wouldn't we expect many or most or all of them to? Why is some an acceptable standard of efficacy here and nowhere else?

 

[JellyBabyKid]

why would only some patients respond to it?

Because they did it "properly"/ believed hard enough, it seems.

But yes. Being less facetious, exactly. Surely that is the interesting question ...??

 

[rvallee]

Has anyone actually documented a death threat, or serious threat of harm, from any verifiable ME/CFS or LC patient at any time? After all this time, if such threats were so pervasive, should there not be one documented conviction, court case or police report? It all seems to be in the territory of whispers and rumours (no doubt goosed along by SW & friends) but with no verifiable evidence of any kind.

One ironic thing about this is that people get angry comments for any reason, including when they are right. Experts get them for saying things that are true. Video game motion actors get them simply for not looking the way some people want them to look.

But here the real threats come from the ideology itself, and they are real, substantial threats of grievous harm. The angry comments are actually justified. Some stranger coming to our home and burning it down should lead to spitting angry reactions, but it's all too easy for them to dismiss all of it, legitimate and nonsensical, as the same thing. This is why we are lumped with Bigfoot conspiracy fantasy communities. Or whatever.

I would bet that compared to most issues, even trivial issues, it's on the extreme low end here, and this is actually extremely ruinous for millions, unlike the color palette of the latest Pokemon collector cards. Even if true, this is just common, and no way is it worse than even angry sports fans aggrieved at some athlete fumbling a goal because they bet money on it.

It's just a weapon used against us. There is no good answer to this, because it's been decided that we are wrong and bad people, so if we protest we are wrong, if we agree and comply, which most do, we are still wrong, and if we don't participate we are just as wrong. It's just an easy weapon that people in a position of dominance can use as they please, and they sure are abusing the hell out of it here. Because it works. Because this is mostly politics and ideology, vibes overrule reality.

No one likes victims. It disgusts most people, because they don't want to be victims. So popular opinion usually errs on the side of crushing them. There's just nothing we can do about this.

 

[rvallee]

Valerie Eliot Smith saw a video in 2011 that had been sent to Wessely, and she said it could easily be interpreted as a death threat. I believe her on that one. Now, that doesn't mean the whole thing wasn't exaggerated and hyped etc etc. But I count that as at least one actual "death threat." I also wouldn't be surprised if there were others. But that's the only one I know that's been confirmed.

There are literally millions of people involved. Statistically speaking, this is actually on the extreme low end. Humans are freaking weird. And of course it's exaggerated, an alleged cup-throwing, for being evicted, was turned into a "OMG we need police presence everywhere" that turned out to have itself been exaggerated.

It's actually pathetic that they resort to this. It's even more pathetic that it works, but humans gonna human.

 

[rvallee]

But what neuroscience backs up this explanation?

"The Neuroscience", they just explained it already. Oh "The Neuroscience" isn't a good enough explanation for you? Well aren't you picky.

"The Neuroscience" plays the exact same role in this ideology as the popular trend from a few decades ago pinning everything, especially consciousness, on Quantum this or that. Zero difference, and actual textbook (as in it's literally IN actual textbooks) pseudoscientific gobbledygook.

 

[rvallee]

I totally agree. Does anyone here disagree? I doubt it. But the question that arose here was not about that--since we all agree on that--but on whether there have, in fact, been any such threats or whether it's completely bogus and made up.

Actually the dispute is over the fact that they don't matter. In part because they are common. Also because they could be fabricated, and it turns out that such claims mostly come from people who have knowingly lied, a lot, and have a habit of making people angry on purpose. Mostly because they are just angry comments. The comment Grin is showing out as a death threat is rather mild by most standards, but especially has nothing to do with us at all. We don't have to respond to vague accusations we have nothing to do with, not when there are literally millions of us and it's not only a struggle to show those "threats", but several times they have been exposed as either fabricated entirely, or taken wildly out of context and exaggerated.

 

[MrMagoo]

Welcome to the club.
Yes, Long Covid research is mostly trash.
However, does that justify leaning into the Brain Retraining trash that’s even more abysmal, by headlining your story with this?!


I find it very annoying that they are going for such an in-your-face headline to then end on this note.

As if the goal was to spark outrage to then being able to point to the outrage.

I wonder if he’s ever taken the time to digest how profoundly flawed every single study on brain retraining is?

EDIT:

Professor Ebell is mentioned here, hyping the paper Efficacy of cognitive behavioral therapy targeting severe fatigue following COVID-19: results of a randomized controlled trial 2023, Kuut, Knoop et al. as one of the best papers in 2024.
That sounds like a perfectly impartial, excuse me: agnostic, expert to me.

Post in thread 'Efficacy of cognitive behavioral therapy targeting severe fatigue following COVID-19: results of a randomized controlled trial 2023, Kuut, Knoop et al'

Jul 31, 2025

Listed as one of the top 20 research articles for 2024 in American Family Physician

Am Fam Physician: Top 20 Research Studies of 2024 for Primary Care Physicians

ROLAND GRAD, MD, MSc, is an associate professor in the Department of Family Medicine at McGill University, Montreal, Canada.

MARK H. EBELL MD, MS, is a professor in the Department of Family Medicine at Michigan State University, East Lansing.

• SNT Gatchaman

• 

I am, perhaps unreasonably, instantly distrusting of the opinions of retired professors of epidemiology.

 

[rvallee]

I'm sure doctors of all varieties are targets of all sorts of nastiness and criminal actions at times. Yet I have never seen a media article about for example, cancer sufferers, highlighting threats made to cancer doctors as a key or relevant part of the story of cancer treatment.

A good example of this is physicians who have been caught diluting chemo drugs, rendering them ineffective. I have seen stories of this, them getting caught and charged with fraud. It's quite similar to what the proponents of this ideology do to us, but on a much smaller scale. I have never seen in those articles any mention of angry comments or actual threats they might have received. Which I'm sure they have, but would be considered justified to some degree, the difference being that cancer is taken seriously while millions of our lives are treated as a joke. So it's not mentioned in those cases. With us it's always exaggerated. Because it's a strategy to beat us down.

 

[MrMagoo]

Why are they so scared of a group of people who are majority housebound?

 

[rvallee]

Levinovitz's experts are quite correct: many of the "biomedical" claims that have historically been made about LC & ME/CFS do not stand up to serious scrutiny, as we have discussed at length on S4ME over the years.

That's literally always true, though. A mystery is mysterious until it's solved. Then it becomes simple, self-evident. Something high school students can study for 10 minutes and try to remember long enough for a test. This is what science actually looks like: a bunch of dead-ends right up to the moment someone finds the right path.

I was watching a video the other day about a problem in the steel industry with methane bubbles. Steel acts like a sponge with methane, traps it in tiny bubbles between the nuggets of hardened steel that form its structure. Over time those tiny pockets diffuse into the same spaces, creating bubbles that eventually become serious enough to crack the whole structure. Which, in some cases, can lead to big explosions.

And no one knew a damn thing about any of this until they managed to work out that they have to look for them and understand how the whole thing works. How steel, hard steel, is a freaking sponge for tiny pockets of gas. This completely mysterious thing then became a solvable challenge. This is how all science works.

Alzheimer's research is riddled with those, and yet it hasn't stopped the whole effort to work it out. All of this is just a lazy excuse by people who only want this problem to be solved the way they prefer it to be solved. Even though NOTHING works like this. To solve a problem it first has to be figured out, and there is no amount of marketing around "The Neuroscience" that can make up for the fact that it's just made-up nonsense, and that the real scientific research on this disease will look like nothing but dead-ends until the way out is found.

 

[dave30th]

Actually the dispute is over the fact that they don't matter.

That's a separate dispute for discussion. The iniital question was whether any of these threats had been verified. The answer was, yes, Valerie had verified that the video could legally be viewed as a death threat. The question of whether it matters is a separate one that came up later in the discussion. I really disagree with the dismissal of the Grin comment as mild, and it appeared on my blog. And that was not the only vile comment from that person. I'm not sure how telling someone you'll beat their face to a pulp could be considered mild. If it scared me, I don't consider it mild.

Again, the question of whether it has anything to do with patients overall is a separate issue from whether there have actually been threats.

 

[Concentric_Spiral]

Actually the dispute is over the fact that they don't matter. In part because they are common. Also because they could be fabricated, and it turns out that such claims mostly come from people who have knowingly lied, a lot, and have a habit of making people angry on purpose. Mostly because they are just angry comments. The comment Grin is showing out as a death threat is rather mild by most standards, but especially has nothing to do with us at all. We don't have to respond to vague accusations we have nothing to do with, not when there are literally millions of us and it's not only a struggle to show those "threats", but several times they have been exposed as either fabricated entirely, or taken wildly out of context and exaggerated.

If there was ever an international tribunal to adjudicate blame in the research and 'treatment' of ME/CFS, I would nominate you as an advocate for pwME in a heartbeat.

 

[MrMagoo]

That's a separate dispute for discussion. The iniital question was whether any of these threats had been verified. The answer was, yes, Valerie had verified that the video could legally be viewed as a death threat. The question of whether it matters is a separate one that came up later in the discussion. I really disagree with the dismissal of the Grin comment as mild, and it appeared on my blog. And that was not the only vile comment from that person. I'm not sure how telling someone you'll beat their face to a pulp could be considered mild. If it scared me, I don't consider it mild.

Again, the question of whether it has anything to do with patients overall is a separate issue from whether there have actually been threats.

I believe under the recent clarification in the UK as to what the police would investigate or consider investigating and what they wouldn’t, the comment on your blog wouldn’t be considered as a serious threat, so I think in UK terms it could be “mild” although that doesn’t mean it isn’t horrible, vile, upsetting, wrong etc.

 

[Trish]

Again, the question of whether it has anything to do with patients overall is a separate issue from whether there have actually been threats.

But the question of whether there have been threats shouldn't be of any interest to discussion of treatment of ME/CFS. They are nothing to do with us. Of course I believe Valerie Eliot Smith saw a real video of a real threat, but that shouldn't be put on the ME/CFS community to respond to in any way. It is not our business.

 

[MrMagoo]

But the question of whether there have been threats shouldn't be of any interest to discussion of treatment of ME/CFS. They are nothing to do with us. Of course I believe Valerie Eliot Smith saw a real video of a real threat, but that shouldn't be put on the ME/CFS community to respond to in any way. It is not our business.

But they keep bringing it up

 

[dave30th]

I think in UK terms it could be “mild” although that doesn’t mean it isn’t horrible, vile, upsetting, wrong etc.

I don't know what the UK law is or what recent changes there've been. In the US, if I received messages saying someone wants to beat my face in to an unrecognizable pulp, I would report it immediately to my bosses and the police, in case.

 

[dave30th]

Professor Ebell is mentioned here, hyping the paper Efficacy of cognitive behavioral therapy targeting severe fatigue following COVID-19: results of a randomized controlled trial 2023, Kuut, Knoop et al. as one of the best papers in 2024.

Interesting find, thanks! That adds some perspective, since that study failed to mention the null results for actigraphy and then the authors claimed that physical movement has nothing to do with fatigue. What is the study linked to in the passage in which I'm quoted? I can't get to it from the archived version of the piece.