Article: We Might Have Long Covid All Wrong (covers FND,ME/CFS,includes Sharpe,Garner, Carson and more).

[John Mac]

Why is the business press outreporting the left on COVID?
Newly disabled victims of COVID pile high while the left spreads ableist nonsense
Today, the New Republic chose to publish a story about Long COVID. In this moment, as millions of people continue to be disabled by the illness, the public could use more reporting on the topic. Few people seem aware that Long COVID exists; those that are aware believe it’s rare or nothing to worry about. All of this is scientifically inaccurate, but that didn’t stop the New Republic from publishing a misleading and minimizing piece today suggesting that Long COVID may be psychological. While it pays lip service to the many studies emerging that demonstrate biological changes in patients, it then goes on to undercut its own critique of the historically misogynistic “hysteria” diagnosis by claiming “A chronic illness that appeared to be triggered by viral infection could just as easily have been triggered by the trauma of the pandemic itself.”

This is a dangerous and unsupported claim at a time where the ramifications of mass disability are becoming all too apparent, and one that has been employed in service to this administration and capital for too long.

https://thegauntlet.substack.com/p/why-is-the-business-press-outreporting

Also discussed in the "Long Covid in the media thread"
https://www.s4me.info/threads/long-covid-in-the-media-and-social-media-2022.24510/page-58

 

[Sly Saint]

It's really just speculation presented as established fact.

which is largely how most of the bps proponents operate. including, unfortunately, some of those who now also include a 'bio' element to their theorising (eg BACME).
see also recent FLottorp email (LP) diagram.
https://www.s4me.info/threads/light...roval-february-2022.14876/page-45#post-449458

 

[anniekim]

It’s so depressing seeing the same old nonsense but damaging arguments being used in articles about LC - and in this article ME too - that people with ME have been subjected to for decades.

 

[livinglighter]

This is the danger of the entire FND movement. They have the potential to disrupt and delay all the biological research with woo nonsense that has no evidence for it and zero effective treatments for what is a guess without anything supporting it. Its an interesting idea but that is as far as the evidence supports it, they simply have no evidence it even exists. It also feels like a misunderstanding of the way the brain works too, it likely over estimates how effective neuroplasticity is and suggesting the autonomic nervous system can wire itself wrongly for no apparent reason that has a logic cause and effect. If we could show this was the root cause that would be a start, the burden of proof as always is with them to develop a technique to prove the condition does indeed exist. Based on what I have seen in their research so far they are no closer to that now than they have been with BPS and hysteria before it.

It's just vague gaslighting. Not committing to something that can be held against them but a nudge and a wink where they let the reader fill in the blanks. We see right through it, laypeople don't.

I think it is a good idea for patients to contribute their voices because we know what to say, what may have been overlooked, etc.

Good post, @Esther12


Important question.

How much precious time and energy, including emotional energy, should we spend on this stuff? How productive is it, given the overall situation now?

Are we at the stage yet where we can afford to (more or less) ignore this nonsense?

––––––––––––

through rehab drills, stress management, habit building, and practicing various motions in the mirror.​

Generic lifestyle coaching.

Good questions.

How productive anything will actually be cannot be measured until the process has been carried out. As it stands we can only make assumptions, but ultimately they need to be acted upon. To offer my opinion, ideally we would just allow science to correct this, but the funding and awareness of ME/CFS doesn't seem to be able to keep up. FND is "new" and seems to easily address what to do with a challenging group of patients that bewilder GPs when they try to help (thinking of my own). Tough call to make as a GP to be fair, my own is rushed off their feet everytime we talk.

I feel like it would be good to be able to engage with it properly if we could, because this sort of thing is important. I'm just cynical that there is any way of really doing so. It seems almost impossible to get any real debate going on these things.

Some of my past blogs were just this, but we need to get this stuff into social media, not hidden on a forum.

At this stage, it's also probably a good time to get viewpoints within traditional media. Social media is great, but many people still rely on certain offline media outlets for credible sources.

 

[rvallee]

He asks patients to count backward by three during exercises, or practice going up stairs backward, to reset their autopilot

This is just as ridiculous as a millionaire priest swinging a jacket around healing people. Absolutely no point in engaging with people like this who have lost all reason. It doesn't even sound legitimate, there is obviously no such thing as "resetting" your autopilot, what a bunch of crap.

Fully agree that the only response to this is ridicule, this junk will inevitably end up in the same trash heap of history as phrenology and The Humours. And to point out that what they are selling is what's already there. It's really something how gullible people can be, to the point of missing out on the main details: this is literally the current paradigm, it is already in effect, was right from the start and has been around for decades. Billions have already been wasted on this, this paradigm is very expensive because of the never-ending flow of patients.

A good campaign would be to simply rebrand this mumbojumbo as the new Humours, or something like that. It's basically the same thing for all intents and purposes, the substance of the beliefs is entirely irrelevant to this ideology. It's even more generic, because they've decided to skip all the other organs and make it all about the least understood one, as if things weren't already too ridiculous.

I haven't read it, but one sentence that struck me was someone saying something like the symptoms of LC could "just as easily" have been created by lockdowns, as if the mere act of saying it basically amounts to a 5-sigma proof in physics. "Just as easily", by "lockdowns" that ended 1.5 years ago, and were mild inconvenience for most, and didn't happen in many places. This shows a complete disregard for facts. Ridicule the hell out of these goons who barely know which year it is.

 

[anniekim]

In the article, Shure writes - “Jennifer Brea insists that FND is “not a diagnosis that is ready for prime time.”

What does this even mean?

 

[Esther12]

This is just as ridiculous as a millionaire priest swinging a jacket around healing people. Absolutely no point in engaging with people like this who have lost all reason. It doesn't even sound legitimate, there is obviously no such thing as "resetting" your autopilot, what a bunch of crap.

Fully agree that the only response to this is ridicule, this junk will inevitably end up in the same trash heap of history as phrenology and The Humours.

I really disagree.

I don't know enough about FND or the ways it could be treated to make a really informed comment, but I think that dismissing things like this based on assumptions rather than a serious engagement with the evidence will only make people look bad.

There have been examples of bad FND research with results that have been spun to make results for rehabilitation seem more impressive than they are, but I think I remember some results that seem to indicate there are forms of rehabilitation that seem to be of real value for certain FND sub groups.

Making broad assumptions without having taken the time to look carefully at the evidence seems more likely to make things worse than better.

At the same time, I've seen that Zachary person make misleading claims before and I certainly don't have any faith in the value of his work. I just think that any criticism should be carefully made.

 

[dave30th]

It's very persuasive. And therefore a huge problem.

on the other hand, she presents this as the counter-knowledge--in other words, the article takes the view that the biomedical perspective on LC in particular is "winning" and is the dominant narrative. This is presented as the counter-narrative--not as the narrative that has been dominant for decades and is now under challenge. That seems to be a change in perspective. It's similar to the perspective of the NY Mag piece in a way.

 

[duncan]

Making broad assumptions without having taken the time to look carefully at the evidence seems more likely to make things worse than better.

Seems to have worked out in stellar fashion for the BPS folk. Although to be fair, they probably are well aware of the evidence. They just ignore it.

In many ways, it appears for some of that psych crowd that it's not so much about proving their position's merits with science, rather doing a better job at marketing whatever shit product is being re-branded. In marketing, substance holds virtually no relevance. It's more about presentation.

They've got presentation down.

 

[Esther12]

Seems to have worked out in stellar fashion for the BPS folk. Although to be fair, they probably are well aware of the evidence. They just ignore it.

To varying degrees - they've toned down a lot of their more over-confident statements about their work. I think that they realised they were hurting themselves and changed approach. Recent pro-BPS articles are often pretty vague on what they're claiming for the benefits of BPS approaches.

We also need to be constantly looking at what things are counter-productive, and changing.

Also, it's easier to get away with a lot of things from positions of authority, especially when you're connected to a lot of other authority figures. We don't have that, so that's another reason to be more careful imo.

 

[Sly Saint]

the biomedical perspective on LC in particular is "winning" and is the dominant narrative

in the UK, where the popular media seemed to be largely ignoring the issue of LC, things seem to possibly be changing as I have noticed that LC does seem to be getting more coverage.
This is possibly due to reporters actually knowing someone with LC.

But unfortunately the 'old narrative' (that applied to ME) particularly with regards to treatment and recovery still dominates any discussion. (evident in todays discussion on BBC Radio2 and fairly recent coverage on C4 news).

 

[livinglighter]

But unfortunately the 'old narrative' (that applied to ME) particularly with regards to treatment and recovery still dominates any discussion. (evident in todays discussion on BBC Radio2 and fairly recent coverage on C4 news).

NHS Health care for LC in the UK seems to be shifting this way too. Referrals to fatigue management centres and discussions about mood in relation to symptoms.

 

[livinglighter]

@dave30th

I'm quite concerned about patients being diagnosed with FND as a cause for symptoms without all likely physical causes being ruled out first.

Your writing is very good at countering false BPS claims. In your opinion, do you think pwME can better add to public conversations about ME/CFS in any way?

 

[Charles B.]

Just to make sure I’m not delirious and imagining this, Shure is arguing that reports of harm post GET aren’t enough to make causal claims, but people like Garner, who her article features, can make casual claims that GET revitalized them? It makes sense if you don’t think about it.

 

[bobbler]

It is definitely cheaper for medical insurers and disability insurers. It looks cheaper on the books for government too, where they can ignore the long term financial implications, and other implications for the economy.

That's a point, certainly in the short-term perhaps - I don't know enough about how the various different ones work premiums (if you had a scan or tests).

I also don't know how exactly funding for the various socialised medicine depts work (whether you get funding per person whether they turn up or not, or funding relates to procedures or treatment you do or are done etc)

Be good for us to one day to unpick and maybe even get as far as do some ballpark mental calcs of how it all might work in different systems actual cost/cheaper-wise.

It feels like even in the short-term there might be people who could have something which just not having courses of whichever therapy (which I'm shocked at the estimates for sometimes, and then sometimes not) is cheaper than EDIT: even if that meant having quite a bit of tests - depending on what is needed. If these courses are in the £thousands then the assumption of cheaper well there are quite a few things that this will be more expensive than as a package

Longer term then there is the question of how long can you go before someone actually ends up needing what they would have done in first place but it has now gotten to a more expensive place than if treated/managed earlier etc.

I guess one really interesting bit in all this (and who is advantaged by what or is it inadvertent) is in the 'what happened in the middle' ie anything that might have affected getting that happening before that stage came. Struggling with the grammar there - hoping it unpicks OK to make sense?

 

[Solstice]

on the other hand, she presents this as the counter-knowledge--in other words, the article takes the view that the biomedical perspective on LC in particular is "winning" and is the dominant narrative. This is presented as the counter-narrative--not as the narrative that has been dominant for decades and is now under challenge. That seems to be a change in perspective. It's similar to the perspective of the NY Mag piece in a way.

Was gonna make a similar argument to one of the tweets where one of the people backing her spoke about us not being open to alternative theories on our disease where it came to CBT/GET. It's been the dominant view for 25 or 30 years or something so it's not an alternative theory, it's been the main theory that's now thoroughly debunked even by authorities.

 

[Sean]

They've got presentation down.

They have worked long and hard on the marketing.

 

[bobbler]

I really disagree.

I don't know enough about FND or the ways it could be treated to make a really informed comment, but I think that dismissing things like this based on assumptions rather than a serious engagement with the evidence will only make people look bad.

There have been examples of bad FND research with results that have been spun to make results for rehabilitation seem more impressive than they are, but I think I remember some results that seem to indicate there are forms of rehabilitation that seem to be of real value for certain FND sub groups.

Making broad assumptions without having taken the time to look carefully at the evidence seems more likely to make things worse than better.

At the same time, I've seen that Zachary person make misleading claims before and I certainly don't have any faith in the value of his work. I just think that any criticism should be carefully made.

to be fair going up or down the stairs backwards is a dangerous recommendation even for a well person, imagine trying it on most days - adding in the multi-tasking element of counting backwards if that is at the same time would just 'blow your envelope and attention abilities'. At that point if it really is a task it feels like another krypton factor test noone really ill could ever complete. Those who end up with FND diagnoses tend to be really likely to have symptoms that would affect their balance, some have seizure-type symptoms etc and sounds like potentially catastrophic as a suggestion - and something even having someone with you could not make safe?

With regards the counting backwards whilst you do something - then on first reading I thought that was hinting towards 'distraction' and was thinking which psychological system they were using/or maybe it was their belief of 'the unconscious' (all obsessed by Freud, yet they don't study the type of unconscious that covers real unconscious stuff like this where it can be measured such as Marcel does), but them claiming you can reprogramme your autopilot is almost the exact opposite to what this would do. Because autopilot is something becoming unconscious - but that is done by consciously doing things another way e.g. re-learning a tennis serve by practice where you make sure you don't 'drop your elbow' or whatever.

Then I thought of a condition where purposeful movements are more affected vs others (I believe Parkinsons can be like this in some areas, bypassing areas that are affected) but if so then you wouldn't get someone to focus on the mirror at the same time.

Are these atually in the article as are and if so are those from a real session or manual?

The whole thing doesn't add up as real exercises anymore than placebo if that is what they are really doing?

 

[Sean]

It's very persuasive. And therefore a huge problem.

It is superficially persuasive story telling, no doubt, and still a problem. But also not clear to me how much of a problem it is now.

Main question for me is who is the intended audience in publications like this?

Clearly it isn't medical & scientific professionals who are familiar with the peer-review literature and authoritative reports from the likes of IOM & NICE.

So who are they trying to persuade, that could help them regain the upper hand?

 

[Charles B.]

I always see this argument and want to launch myself into the sun. Who is being denied treatments? Anyone who wants to can embark on an exercise regimen and enlist the help of a therapist. Are people being restrained from using recumbent bikes? Are militant activists hiring private investigators to kidnap anyone watching an online self help video? I wish I had the irrational confidence of a Jeff Wise. It’s sickening