I understand why someone might feel out of their mind with rage at Zachary Grin. I mean, he harasses me!!! But the issue here is, Is that a death threat? Seems to me like it obviously is--or at least, it wouldn't be unreasonable for Grin to view it that way, as he did.
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Wired Magazine: The Painful Truth About Long Covid
- Thread starter leokitten
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And if they cannot (and they rarely are, if ever) then they should stop making them, and completely withdraw and apologise for any accusations they have already made, and refrain from making any more.
Such accusations are highly defamatory and prejudicial, and can do real damage independent of their validity, even if later withdrawn, as the accusers know all too well.
They must be substantiated to a robust degree in the first instance, including the accused being allowed to fully interrogate the claim, or the accusers should shut the fuck up.
Yes, I agree. And in the case of Grin, the accusation of receiving a scary threat via a comment on Virology Blog was obviously documented.
Lou B Lou
Senior Member (Voting Rights)
It's not just that "people have been treated horribly" David
It's that pwME have been socially and medically abused to death. Those who survived are still disbelieved, left horrifically traumatised.
It seem that you really don't get the actual horror inflicted on pwME.
Jeez. I've been death threated on Twitter. So bloody what?
NHS psychiatrists are threatened every day in the NHS by sick and disturbed patients.
Those psychiatrists do not demand world wide publicity for themselves, they do not endlessly act the victim and denigrate and blame the patients in the world wide press for years on end.
.
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If I remember correctly, I was the ONLY PERSON besides the principles who was at the Maeve Boothby O'Neill inquest every day for two weeks, and wrote quite a lot about her case. And posted obits for Beth Mazur, and Celine Corsius, and so on. So I think your charge is a bit unfair. I'm not a patient, nor a carer or a family member of a patient, so in that sense of course I can't experience the full horror of what patients and families do. But I do my best to understand.
But the discussion was not about whether patients have been horribly abused--of course they have, as I've been writing for ten years!!!--but whether there have been death threats. And you suggested there was no credibility to any such claim. i just posted a death threat, or something akin to that, that was posted on my blog as a comment. I found it very scary!!! If that had been directed at me, or I'd gotten more like that, I might have alerted the police, in case.
As I have just pointed out in my previous post, using any incident to do what they've done and defame all patients is despicable and unjustifiable. As you have noted--others who get threats don't do that. But that doesn't mean Zachary Grin did not receive a death threat, or something close to it. He did--on my blog. And that is the sole point I was making.
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MrMagoo
Senior Member (Voting Rights)
Apples and pears is stairs. Apples and oranges is for comparisons. I think the traditional phrase in England is”like chalk and cheese”
<backs out slowly>
I have never disputed this. And I have said repeatedly that no one should use any incident to defame everybody. That's despicable. I agree!! You know how many times I've written about the SMC orchestrating their campaign?
I think the problem with the threats situation is not whether they happened or not. If someone receives a death threat they can report it to the police. It should not be my concern or responsibility.
The problem is the use of having received threats from a few individuals as a a reason to accuse a whole sick population of being violent extremists and as grounds to dismiss critiques of their BPS and brain training treatments.
I object strongly to Wessely and his cult who have harmed us for 35 years accusing me and other sick people of being violent extremists. I have never threatened or harmed any of them. They have harmed me.
The problem is the use of having received threats from a few individuals as a a reason to accuse a whole sick population of being violent extremists and as grounds to dismiss critiques of their BPS and brain training treatments.
I object strongly to Wessely and his cult who have harmed us for 35 years accusing me and other sick people of being violent extremists. I have never threatened or harmed any of them. They have harmed me.
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.
And I totally agree with this.
My point is really that I have no idea whether threats have occurred and if so whether they came from pwME, or twitter bots or whatever. And that it is not my business to know or to do anything about it. We should not have to respond to or have anything to do with criminal actions of persons unknown. They should not be told as a relevant part of the story of ME/CFS. Because when they are, it is always in the context of blaming us for crimes that are nothing to do with us. And for deflecting justified criticism of our treatment.
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.
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.
MrMagoo
Senior Member (Voting Rights)
Was the Cambridge Life Sciences stuff going on when the BPS lot started claiming they were threatened? It feels kind of…old fashioned.
Anyway threats happen, but I didn’t send them.
Indeed, the only threat we need to address it the threat to our survival as a patient group.
Anyway threats happen, but I didn’t send them.
Indeed, the only threat we need to address it the threat to our survival as a patient group.
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“Long Covid folks: FAIR (media outlet) commissioned me to write about this piece and the legacy of media psychologizing our disease (eg New Republic). I need to dig all up the stories since 2020 like this. Search engines aren’t great lately so your memory/help is appreciated”
“I cannot tell you how many times I would take a long Covid study cited as incredible evidence of something (a genetic study, say, or an antibody study), bring it to a pre-eminent expert in the field who wasn't deeply embedded in the LC world, ask what they thought of the study, and have them say, "ummmm, this is at best a hypothesis generation, and at worst just garbage science"
Chandelier
Senior Member (Voting Rights)
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.
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Hoopoe
Senior Member (Voting Rights)
The psychologization has more to do with how nonpatients feel about the illness than anything else.
They express and project their negative feelings, fears, suspicions. For example the fear and suspicion that patients might be living in a mental prison from which they could escape any time if only they believed. The fear and suspicion that patients are faking it, maybe without even being aware. The suspicion that patients have invented an alternative diagnoses to avoid facing the mental illness which they hide under the alternative diagnosis. The suspicion that patients are simply lazy and unwilling to contribute their part to society.
Doctors and social security also don't know how to handle the illness and psychologization is the convenient escape route.
They express and project their negative feelings, fears, suspicions. For example the fear and suspicion that patients might be living in a mental prison from which they could escape any time if only they believed. The fear and suspicion that patients are faking it, maybe without even being aware. The suspicion that patients have invented an alternative diagnoses to avoid facing the mental illness which they hide under the alternative diagnosis. The suspicion that patients are simply lazy and unwilling to contribute their part to society.
Doctors and social security also don't know how to handle the illness and psychologization is the convenient escape route.
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Peter T
Senior Member (Voting Rights)
To indulge in pure psychobabble, I wonder if this ‘magical thinking’, this idea that the mind is somehow supreme, that if we can just get what we think right we can change physical the world, is an artefact of how our brain works, of how a concept of self develops. At one end of the spectrum is the belief that we could manifest personal wealth through affirmations or repetition of a mantra to at the other that such as meditation could cure cancer or brain retraining cure ME/CFS.
Then when espousing this magical thinking also lines up with an individual’s self interest, we have a real battle on our hands to get people to focus instead on the actual science.
Then when espousing this magical thinking also lines up with an individual’s self interest, we have a real battle on our hands to get people to focus instead on the actual science.
Chandelier
Senior Member (Voting Rights)
Very strong reply by Long Covid Advocacy on BlueSky:
Long Covid Advocacy
June 2 2026
OF KEY CONCERNS
We've now read Alan Levinovitz's WIRED piece on Long Covid.
Our concern isn't that it discusses psychological theories.
Our concern is that it repeatedly conflates criticism of evidence with creating a "climate of fear".Those are not the same thing. /1
Six years since the height of the pandemic, the scientific community remains baffled by long Covid.
But there might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.
The Painful Truth About Long Covid
CONFUSING VALIDATION WITH EVIDENCE
The article repeatedly blurs two separate claims:
Patients are genuinely ill and deserve to be believed
A specific treatment is effective.
These are different questions requiring different standards of evidence. /2
Believing patients is not the same thing as endorsing treatment claims.
And demanding evidence for treatment claims is not the same thing as denying illness. Conflating stigma helps no one in the community. /3
ANECDOTES ARE NOT EFFICACY DATA Recovery stories matter.
They generate hypotheses.
But anecdotes are not proof that an intervention works.
That's why medicine uses controls, comparison groups, replication and rigorous trials. /4
The question isn't whether people improved.
The question is whether a specific intervention caused the improvement.
Those are not the same thing.
Science exists precisely to remove the bias of anecdotes.
It isn't based on opinion for GOOD REASON! /5
REWRITING THE HISTORY OF PATIENT SCEPTICISM
AL suggests that resistance to psychogenic or mind-body explanations is driven by fear, stigma, or ideology
But many patients became sceptical because of decades of disputed research, dismissal, psychologisation and poor outcomes /6
Criticism of PACE was not primarily: "We refuse to consider psychology.
"It was:"We dispute the methodology, outcome measures and conclusions.
"That is an evidence debate not an anecdote or fear debate.
Portraying 'both sides" does not justify the stance taken by AL. /7
FRAMING PATIENT ADVOCACY AS A CLIMATE OF FEAR
The article repeatedly suggests that advocates and patient communities have created a climate in which psychological explanations cannot be discussed.
This framing ignores a basic reality. /8
Behavioural and psychosocial models dominated ME research, policy and clinical guidance for decades
Patients were not resisting a marginalised idea
They were challenging an influential one!
Long Covid research has also been dominated by cheap, lifestyle, behavioural methods /9A
major feature in WIRED is not evidence that discussion is impossible.
It is evidence that discussion is happening.
There is no shortage of articles, platforms & opinion about brain training.
The question is whether the arguments withstand scrutiny. /10
There is a certain irony in framing the discussion like the right-wing does for cancel culture on a platform of millions.
This isn't the tofu-eating wokerati this is people desperately ill, who have been harmed and are looking for effective treatment for many. /11
TURNING CRITICISM INTO PROOF
We are seeing a troubling pattern: Criticism of claims about brain retraining is reframed as evidence that people are afraid to discuss brain retraining. /12
But disagreement is not suppression!
Scientific debate requires criticism.
If criticism itself becomes proof of the thesis, the thesis becomes impossible to challenge. Handy! /13
GASLIGHTING IS NOT THE SAME AS SCIENTIFIC DISAGREEMENT
Patients have spent years describing experiences of dismissal, psychologisation, disbelief and institutional harm.
That history should not be repackaged as a fear of discussing psychology. /14
Raising concerns about evidence is not gaslighting.
We are deeply concerned at AL claiming patients are gaslighting other patients if they disagree.
Questioning efficacy claims is not abuse.
Requiring rigorous evidence is not censorship. /15
A FALSE CHOICE
The article creates a false choice: Accept brain retraining as a plausible path forward, or be portrayed as ideological, fearful, or anti-science.
The point is that we need research to determine an effective treatment. /16
If we look at ME there were 100's of behavioural studies for DECADES.
Most of the research was behavioural!
None of it worked.
We saw this in the NICE evidence review.
ALL the evidence was low/very low in quality.
The point is this mistake should not be repeated for Long Covid /17
THE FALSE DUALISM
A major problem in the article is the framing of a false binary: “biological absolutism” versus “psychological explanations.
”This is not the real divide.
Medicine does not operate on a choice between mind and body narratives.
It operates on EVIDENCE ffs. /18
The article finishes using a social services case to support a much broader claim about “climate of fear” shaping science and forcing biological framing.
That’s a major inferential leap & a betrayal of the trauma families have experienced. /19
They shouldn't be used to justify the article's thesis of fear & that advocates are "forced to insist on exclusively biological origin" & that no one will get better if this happens.
It's a low blow.
What we need is funding for effective research for treatments that work /20
There's more but we also note that claims about exercise and CBT are presented with relatively little engagement with the methodological critiques of that evidence base, particularly in relation to outcome measures and post-exertional malaise. 
/21
Non paywalled article is here. /22
smry.ai
Article from wired.com
In light of this article that is creating more trauma for the community we recommend cultural feminist historian & ally Dr Elinor Cleghorn's words:
Full video: longcovidadvoc.com
Long Covid Advocacy
June 2 2026
OF KEY CONCERNS
We've now read Alan Levinovitz's WIRED piece on Long Covid.
Our concern isn't that it discusses psychological theories.
Our concern is that it repeatedly conflates criticism of evidence with creating a "climate of fear".Those are not the same thing. /1
Six years since the height of the pandemic, the scientific community remains baffled by long Covid.
But there might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.
The Painful Truth About Long Covid
CONFUSING VALIDATION WITH EVIDENCEThe article repeatedly blurs two separate claims:
Patients are genuinely ill and deserve to be believed
A specific treatment is effective.
These are different questions requiring different standards of evidence. /2
Believing patients is not the same thing as endorsing treatment claims.
And demanding evidence for treatment claims is not the same thing as denying illness. Conflating stigma helps no one in the community. /3
ANECDOTES ARE NOT EFFICACY DATA Recovery stories matter.They generate hypotheses.
But anecdotes are not proof that an intervention works.
That's why medicine uses controls, comparison groups, replication and rigorous trials. /4
The question isn't whether people improved.
The question is whether a specific intervention caused the improvement.
Those are not the same thing.
Science exists precisely to remove the bias of anecdotes.
It isn't based on opinion for GOOD REASON! /5
REWRITING THE HISTORY OF PATIENT SCEPTICISMAL suggests that resistance to psychogenic or mind-body explanations is driven by fear, stigma, or ideology
But many patients became sceptical because of decades of disputed research, dismissal, psychologisation and poor outcomes /6
Criticism of PACE was not primarily: "We refuse to consider psychology.
"It was:"We dispute the methodology, outcome measures and conclusions.
"That is an evidence debate not an anecdote or fear debate.
Portraying 'both sides" does not justify the stance taken by AL. /7
FRAMING PATIENT ADVOCACY AS A CLIMATE OF FEARThe article repeatedly suggests that advocates and patient communities have created a climate in which psychological explanations cannot be discussed.
This framing ignores a basic reality. /8
Behavioural and psychosocial models dominated ME research, policy and clinical guidance for decades
Patients were not resisting a marginalised idea
They were challenging an influential one!
Long Covid research has also been dominated by cheap, lifestyle, behavioural methods /9A
major feature in WIRED is not evidence that discussion is impossible.
It is evidence that discussion is happening.
There is no shortage of articles, platforms & opinion about brain training.
The question is whether the arguments withstand scrutiny. /10
There is a certain irony in framing the discussion like the right-wing does for cancel culture on a platform of millions.
This isn't the tofu-eating wokerati this is people desperately ill, who have been harmed and are looking for effective treatment for many. /11
TURNING CRITICISM INTO PROOFWe are seeing a troubling pattern: Criticism of claims about brain retraining is reframed as evidence that people are afraid to discuss brain retraining. /12
But disagreement is not suppression!
Scientific debate requires criticism.
If criticism itself becomes proof of the thesis, the thesis becomes impossible to challenge. Handy! /13
GASLIGHTING IS NOT THE SAME AS SCIENTIFIC DISAGREEMENTPatients have spent years describing experiences of dismissal, psychologisation, disbelief and institutional harm.
That history should not be repackaged as a fear of discussing psychology. /14
Raising concerns about evidence is not gaslighting.
We are deeply concerned at AL claiming patients are gaslighting other patients if they disagree.
Questioning efficacy claims is not abuse.
Requiring rigorous evidence is not censorship. /15
A FALSE CHOICEThe article creates a false choice: Accept brain retraining as a plausible path forward, or be portrayed as ideological, fearful, or anti-science.
The point is that we need research to determine an effective treatment. /16
If we look at ME there were 100's of behavioural studies for DECADES.
Most of the research was behavioural!
None of it worked.
We saw this in the NICE evidence review.
ALL the evidence was low/very low in quality.
The point is this mistake should not be repeated for Long Covid /17
THE FALSE DUALISMA major problem in the article is the framing of a false binary: “biological absolutism” versus “psychological explanations.
”This is not the real divide.
Medicine does not operate on a choice between mind and body narratives.
It operates on EVIDENCE ffs. /18
The article finishes using a social services case to support a much broader claim about “climate of fear” shaping science and forcing biological framing.
That’s a major inferential leap & a betrayal of the trauma families have experienced. /19
They shouldn't be used to justify the article's thesis of fear & that advocates are "forced to insist on exclusively biological origin" & that no one will get better if this happens.
It's a low blow.
What we need is funding for effective research for treatments that work /20
There's more but we also note that claims about exercise and CBT are presented with relatively little engagement with the methodological critiques of that evidence base, particularly in relation to outcome measures and post-exertional malaise.
/21Non paywalled article is here. /22
smry.ai
Article from wired.com
In light of this article that is creating more trauma for the community we recommend cultural feminist historian & ally Dr Elinor Cleghorn's words:
Full video: longcovidadvoc.com
Jonathan Edwards
Senior Member (Voting Rights)
This.
JellyBabyKid
Senior Member (Voting Rights)
This is similar to the Hawthorne effect in time and motion studies.
Do you happen to know if any specific studies regarding people being less likely to complain when they feel cared for? Thanks. I am curious!