Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

[MinIreland]

I feel your pain @Covidivici - I’m going through much of the same.

Found this when I googled her name. Sounds like she had a tough experience getting sick for roughly two years (well within the range of self-resolving post-viral fatigue), and I’m happy she’s doing better. Now she’s seemingly committed to spreading toxic positivity and a personal recovery journey narrative far and wide.

The blog was posted feb 2025.


She says’s she’s been feeling amazing for months, but it’s 11 months since she took the course. So she presumably «stopped» having LC when she took the course, but gradually recovered over maybe half a year.

The rest of the blog reads like something out of Paul Garner’s personal notes of «evidence» for brain retraining. This seems to be the depth of her critical reasoning around the whole thing:

I so feel you both, @Utsikt and @Covidivici

[Edited because I hit Reply accidentally].

A friend of mine told me this weekend that, if I would believe in my doctor and think positively, I would recover. "That's how it works", he said. I told him that that's not how it works and explained why his comment is hurtful (after all, people like my friend are basically saying: If you don't recover, it's your own fault). He then went on to explain why it is his belief that if you believe something strongly enough, it will happen. This was my reply:
**
I don't like that belief, because, as I said, if people don't recover, it sounds like it's their own fault for 'not believing' or 'not being hopeful enough'.

Yes, I know these stories as well, and although I'm of course very happy for these people, I think it's very damaging to those less lucky, to claim that is because of 'their spirit'. You hear it often as well when people recover from cancer "(s)he was so strong and positive, (s)he fought for recovery". As if the people who die from it are not strong and haven't fought! So, that's the other side of the coin.
**

It's so hard to not to just tell people to fuck off and stay friendly!

 

[MrMagoo]

I so feel you both, @Utsikt and @Covidivici

[Edited because I hit Reply accidentally].

A friend of mine told me this weekend that, if I would believe in my doctor and think positively, I would recover. "That's how it works", he said. I told him that that's not how it works and explained why his comment is hurtful (after all, people like my friend are basically saying: If you don't recover, it's your own fault). He then went on to explain why it is his belief that if you believe something strongly enough, it will happen. This was my reply:
**
I don't like that belief, because, as I said, if people don't recover, it sounds like it's their own fault for 'not believing' or 'not being hopeful enough'.

Yes, I know these stories as well, and although I'm of course very happy for these people, I think it's very damaging to those less lucky, to claim that is because of 'their spirit'. You hear it often as well when people recover from cancer "(s)he was so strong and positive, (s)he fought for recovery". As if the people who die from it are not strong and haven't fought! So, that's the other side of the coin.
**

It's so hard to not to just tell people to fuck off and stay friendly!

I’d be looking for something in his life that he wanted but couldn’t achieve and turning it back on him!

 

[Sean]

better than ever, to be honest.​

I regard that sort of claim as a woo alert.

It's so hard to not to just tell people to fuck off and stay friendly!

Sometimes impossible, and you have to choose.

 

[Utsikt]

Some pushback about the very uncritical piece with Gill Deacon:

Although host Ian Hanomansing clarified on air that Deacon doesn’t endorse the brain retraining therapy, the segment still provided national coverage for an unproven therapy. The National failed to mention that there’s no strong evidence CBT, and related brain retraining programs, are effective for Long COVID. The specific brain retraining course Deacon used to recover, according to her Substack, the Lightning Process, has been accused of exploiting people with Long COVID.

At best, this suggests The National did not conduct sufficient background research that would have flagged the problematic nature of the Lightning Process. At worst, the program may have been aware of the concerns surrounding the Lightning Process but chose not to mention it.

I reached out to the CBC to see if they were aware that Deacon attributed her improvement to the Lightning Process and asked them to comment on their rationale for platforming her recovery story in light of the controversy and lack of scientific evidence surrounding the program.

They were unable to provide a response prior to publication. This article will be updated when a response is received.

They mostly go off of the BBC coverage of LP for LC that was highly critical of it, with experts calling it an abuse of scientific terms and quackery.

CBC’s Flagship Program Platforms “Quackery” for Long COVID

CBC's national broadcast aired an interview with Gill Deacon about her Long COVID recovery. Deacon used an unproven program called the Lightning Process that's been criticized for exploiting patients with chronic illness.

simonspichak.beehiiv.com

 

[JemPD]

They mostly go off of the BBC coverage of LP for LC that was highly critical of it, with experts calling it an abuse of scientific terms and quackery.

You don’t happen to have a link to that do you? I remember that piece wasn’t it about an Olympian? but I lost the link

 

[forestglip]

You don’t happen to have a link to that do you? I remember that piece wasn’t it about an Olympian? but I lost the link

Long Covid course is ‘exploiting people’, says ex-GB rower

 

[JemPD]

thanks @forestglip

 

[Covidivici]

Some pushback about the very uncritical piece with Gill Deacon:


They mostly go off of the BBC coverage of LP for LC that was highly critical of it, with experts calling it an abuse of scientific terms and quackery.

Happy to see it. I wrote a citation-stacked letter to the CBC Ombud to complain about the interview. Her response:

 

[Utsikt]

Happy to see it. I wrote a citation-stacked letter to the CBC Ombud to complain about the interview. Her response:

View attachment 29080

Hope they take it seriously!

In the link I posted, it says that she doesn’t endorse LP. But she very clearly does endorse LP in her substack and provides lots and lots of links to others talking about it. I have not watched or listened to the segment, so I don’t know what she actually said. But that discrepancy should have been caught by anyone doing any kind of due diligence prior to the interview..

 

[Covidivici]

She basically said that her metabolism had been stuck in fight or flight and that a three day workshop started her on the road to recovery though she 'had to do a lot of the work on my own'. So, yeah. BRT.

 

[Covidivici]

Update. I heard back from the CBC regarding their trash segment on brain retraining:

The re-uploaded edit is longer and includes this (new) narration:

Ever the journalist, Deacon started looking for her own answers. She enrolled in a University Health Network clinical trial in Toronto that explored using medication to treat Long COVID. Her symptoms didn’t improve and she didn’t give up. Instead, she turned to a controversial approach that is not currently offered through public health institutions to treat Long COVID.

It also (now) includes the host asking Deacon about the push-back she must have received (which means they had this all along and had simply chosen not to include it). In her response, she basically says that although she recognizes how discussing neuroplasticity can be incredibly offensive to people suffering from Long COVID "because it makes it sound like it's all in their heads", she insists that it's what helped her.

The good: You now come away from the 9-minute interview more aware that this is one person's opinion and that it doesn't have the medical establishment's backing. She also says that although a nodule has appeared on her thyroid, she chooses to stay positive. "That's why I write this book and try to help other people feel more okay about handling hard stuff and I truly feel the power of adjusting my attitude". So yeah, she comes across as far less credible.

The bad: It didn't air on Canada's flagship news program (as did the initial shorter segment, seen by millions). So as with any footnote correction after the fact, it accomplishes very little.

My bottom line: I'm glad it was addressed, for future segments, for anyone who might belatedly share this segment with their loved ones and in defense of bare-minimum journalistic standards.

Rigueur, esti.

 

[Chandelier]

For what it’s worth:
Raelan Agle‘s latest newsletter tries to sound all scientific and she links to this literature list https://www.symptomatic.me/bibliography

About ATNS​

The Association for the Treatment of Neuroplastic Symptoms is a 501(c)(3) nonprofit organization. Our mission is to educate the public, patients, and practitioners about diagnosis and treatment of neuroplasticity pain—also known as neuroplastic pain—and related illness and illness that affects over 50 million adult Americans. Founded and led by volunteer medical and mental health practitioners, researchers and patient advocates with decades of experience, ATNS provides the information and tools needed to recognize and treat neuroplastic conditions; explains and promotes the latest scientific research; advocates for healthcare policies that support access to quality treatment; and empowers people to advance their own healing.

The board consist of the same people as always:

• David D. Clarke, MD​

  PRESIDENT & CO-FOUNDER

• Howard Schubiner, MD​

  CO-FOUNDER
• Etc…

Newsletter by Raelan:

Harvard Trial leads to recovery in just 5 weeks!​

What’s in store for today:​ How getting clear on your values can aid in recovery A Harvard clinical trial that helped Nora recover in just weeks The new tool that gives you the same recovery plan as the Harvard trial

​ [td]

Hi friends! When you're on a recovery journey, it can feel like there are a million opinions pulling you in different directions. I’ve found that there’s one useful thing that helps me to stay on track: Getting clear on my values. These are the things that keep me grounded when the noise gets loud, and if I keep them in mind when I make decisions, I can never stray too far. I spent some time this week writing down mine and I wanted to share them with you. Here they are:

Compassion & Kindness – People first. Always. I speak gently, honor stories, and never shame or pressure. Integrity, Honesty & Evidence-Informed – I tell the truth, acknowledge uncertainty, and base claims on the best knowledge available. Empowerment & Joy – Everything I create helps people trust themselves more and invites moments of lightness. Meaningful Impact – My work should genuinely change lives, not just generate views, clicks, or sales. Fair & Sustainable Compensation – Me and my team serve with heart and are compensated ethically and confidently, in alignment with the value and impact we create.

These are very specific to me and the place I’m at in life right now. But doing this exercise got me wondering about what values my audience holds. So maybe this is a good point to ask yourself: What values do I want guiding my health, my choices, and the way I show up in the world? If you’re willing to share, hit reply! I’d love to hear your values. Even if you don’t want to share, I’d encourage you to think about it. Sometimes just saying these things out loud is the first step to living them.

Nora Rodden spent five years trying everything for chronic back pain after being hit by a car at age 20: chiropractors, physical therapy, steroid injections, even nerve ablation procedures where they literally burned the nerves in her back. Through all this, she still had pain. Then came GI issues. Then insomnia. Eventually Nora was seeing the best specialists in New York and Boston, but they had zero answers for her until she saw a poster on campus for a neuroplasticity-based clinical trial led by Dr. Michael Donnino. Within weeks, her five-year back pain was completely gone! WHAT WASN'T HELPFUL Steroid Injections & Nerve Ablations – Still had pain afterward. Endless Specialists – No long-term relief found. Pills, Probiotics, Antibiotics – Didn't resolve GI issues. Every Sleep Aid Available – Insomnia persisted. WHAT WAS HELPFUL Joining a Clinical Trial – Changed everything within weeks. Looking for Symptom Inconsistencies – Gym didn't hurt, backpack did. Reframing Danger Signals – Taught nervous system safety. Expressive Writing – Helped process emotions driving symptoms. KEY RESOURCES Nervana App – Neuroplasticity-based program modeled on the clinical trial (special discount below) Dr. Donnino’s Work & Scientific Research for Neuroplastic Symptoms – Growing body of evidence on mind-body approaches. A SURPRISING INSIGHT Nora was so impressed when her chronic back pain disappeared in weeks that she applied the same approach to her GI issues and insomnia… and those resolved too! She used her experience to co-found Nervana, a neuroscience-based app that gives you the same tools from that clinical trial: bite-sized education, expressive writing, nervous system regulation, and a conversational AI coach that provides judgement-free support. Wishing you a great start to the New Year!

​

 

[Chandelier]

Reddit Post:

Raelan Agle just ruined my day​

I unfortunately just read “finding freedom” by Raelan Agle and oh my god did it send me into such a shame and despair cycle.
This is truly the “live laugh love” book of me/cfs.
If I can just get a few people to avoid reading this trash, I’ll feel a bit better.
I just think it’s downright unethical to tell us to eat better, take naps, and exercise.
As if we haven’t heard this from every corner of the world!
Finally - how on earth could she travel BY HERSELF around Southeast Asia for one year while having this disease???
Insane. Thanks for coming to my ted talk.

 

[Grigor]

There was a critical article from Switzerland about mind-body and brain retraining. Good to see. I personally felt the part about pushing through lacked a bit of nuance so I wrote a response to that. But otherwise it was a much needed piece.

Long Covid und ME/CFS: Heilung in drei Tagen?

Während es in der Schweiz noch immer an adäquater medizinischer Versorgung bei Long Covid und ME/CFS fehlt, boomen fragwürdige Methoden.

www.woz.ch

My response:

Great to see this article about brain retraining and similar approaches in ME, Long COVID and PAIS.

Many parts of the WOZ article are strong. But the description of harm is still too unnuanced in my opinion. It frames these programs as if people simply push through symptoms. I think it is more complex.

This may be applicable to some, but many of these programs do not start with pushing. You start by being taught that PEM is a false alarm, that symptoms are misinterpretations, that you are safe. You first learn to reinterpret or suppress the perception of PEM, and only then do you increase activity because you believe you are no longer at risk.

The result can be similar, but the path there is psychological override, not directly pushing through perse. That nuance matters, because it explains why with no tendency to push themselves can still end up severely harmed. Some people may also be able to do more on adrenaline or a placebo effect for a while and eventually crash hard because they feel "safe".

It's important because these programs are presented as something different from CBT with a graded activity component, and that is why some who oppose CBT and GET still go along with brain retraining. It's also why they are gaining popularity. But often they are very similar, which makes them misleading and potentially harmful both physically and mentally.

The latest preliminary data from the AIR trial from Finland also showed no meaningful difference between AIR, digital CBT and treatment as usual. The small improvements seen were consistent with natural recovery and normal fluctuations rather than a specific treatment effect. Those were merely subjective measures.

#pwme #longcovid #millionsmissing #mindbody #cbt | Anil van der Zee

For those who still believe we should be treating people with Long-Covid or ME with mind-body interventions or CBT. Preliminary data shows null results of said interventions. Again... When will we learn?? As someone mentioned on X. They excluded bedridden patients despite the intervention...

www.linkedin.com

At the same time, not every component is automatically useless. Supportive elements can help people cope. The problem is that the harmful parts of psychologizing and/or activating are unnecessary.

We already have models that align with the latest biomedical findings on ME and PAIS, and those should guide care and support instead of outdated or risky approaches. See here for example: https://www.mdpi.com/1648-9144/59/4/719?utm_source=pocket_mylist

#pwme #myalgicE #PAIS #IACI #IACC #MillionsMissing

 

[Chandelier]

There was a critical article from Switzerland about mind-body and brain retraining. Good to see. I personally felt the part about pushing through lacked a bit of nuance so I wrote a response to that. But otherwise it was a much needed piece.

Long Covid und ME/CFS: Heilung in drei Tagen?

Während es in der Schweiz noch immer an adäquater medizinischer Versorgung bei Long Covid und ME/CFS fehlt, boomen fragwürdige Methoden.

www.woz.ch

My response:

Brillant, thanks for sharing!

 

[Chandelier]

There was a critical article from Switzerland about mind-body and brain retraining. Good to see. I personally felt the part about pushing through lacked a bit of nuance so I wrote a response to that. But otherwise it was a much needed piece.

Letters to the Editor from the past two issues. All are pro-psychobabble.
A small excerpt so you know what‘s ahead:

Of the many misunderstandings in the article, only two are highlighted here:
No, the neuroplastic approach does not call into question the presence of (measurable) somatic changes.
And no, neuroplasticity is not to be equated with psychosomatics, as the article suggests.

Machine Translation:

---

Letters to the Editor​

Leser:innenbriefe: vom 28.05.2026

www.woz.ch

No. 22 – 28 May 2026
Capitalist Structures “Long Covid and ME/CFS: Healing in Three Days?”, WOZ No. 21/26

In the article on ME/CFS, the biopsychosocial model is contrasted with a biomedical approach. The impression is created that the latter takes illnesses seriously as biologically caused pathologies, while the former explains them away as purely psychological reactions. That is misleading.

The biopsychosocial model does not claim that symptoms cannot have biological causes. But it acknowledges that the causes of all illnesses are complex. This is also true for many traditional ailments. For example, high blood pressure is a condition without a clearly identifiable biological cause. The same applies to depression and most psychiatric disorders.

If we were to recognize only “purely biological” (whatever that even means) illnesses as such, the scope of medicine would shrink to an absurd degree. Doctors would then be unable to treat either high blood pressure or depression.

The fact that ME/CFS is not taken seriously enough and that patients are fobbed off with pseudoscientific therapies has nothing to do with the biopsychosocial model. It has far more to do with the patriarchal structures and capitalist structures of our society, which also shape the field of medicine.

Pablo Hubacher, via email

---

Leser:innenbriefe: vom 04.06.2026

www.woz.ch

No. 23 – 4 June 2026

Long Covid “Long Covid and ME/CFS: Cure in three days?”, WOZ No. 21/26

The article questions various current discussions around Long Covid with an extremely sharp critical tone. It refers to the podcast by Zita Bauer and Jann Zosso, which deals with recovery stories from people affected by Long Covid. In the article, the personal stories presented in the podcast are dismissed as isolated cases of privileged people who were ill only for a short period. In addition, the neurobiological approach that enabled the recovery path of the people portrayed is called unscientific and could even be harmful to those affected.

That a podcast that makes sufferers’ stories visible is simply classified as dangerous and practically nonsense without a real engagement with the recounted stories and the rigorously researched scientific findings remains, for me, highly questionable.

Leonie Mugglin, via email

---

Anyone who in a debate as poisoned as that about the treatment of Post Covid researches so poorly or formulates so carelessly, or both, acts not only negligently but irresponsibly. Of the many misunderstandings in the article, only two are highlighted here: No, the neuroplastic approach does not call into question the presence of (measurable) somatic changes. And no, neuroplasticity is not to be equated with psychosomatics, as the article suggests.

As long as there is no real breakthrough regarding causes and therapies for Post Covid, research should indeed proceed in all directions. Demanding evidence-based support for neuroplastic approaches while at the same time calling for foregoing the corresponding research does not work. There is plenty of evidence to suggest that these approaches can be effective.

Herbert Winistörfer, Winterthur

---

 

[Grigor]

Highlights from recent German TV that looked at brain retraining for #MECFS.

A doctor with #MECFS says the programme made her feel she just had to keep trying harder. She eventually suffered a severe crash.

She is “angry” and says that these programmes are endangering people.

 

[Chandelier]

Letters to the Editor from the past two issues. All are pro-psychobabble.

---

Long Covid “Long Covid and ME/CFS: Healing in Three Days?”, WOZ No. 21/26

Unfortunately, the article on the new neuroplastic treatment approaches (Pain Reprocessing Therapy, PRT) for Long Covid and ME/CFS is very one‑sided in its research and sensationally titled.
No one with a serious background promises healing within three days using this treatment approach; and I myself am not aware of any program in this field that “starts at 940 US dollars.”
There are certainly much more affordable options, such as the Freeme app, created by someone who recovered from ME/CFS, costing 99 euros per year with a money‑back guarantee if one is not satisfied.

Unfortunately, the relevant ME/CFS associations are also very negatively disposed toward PRT, even though there are now so many convincing recovery reports.
One example is Swiss professional cyclist Marlen Reusser (herself a physician), who became world champion after her recovery using this method.
The widespread (and understandable) fear of being pushed into the psychosomatic corner still lingers — yet that is precisely not what this is about.
Rather, it concerns modern, scientifically sound brain research, in other words something genuinely physical.

Dr. med. Alexander Erlach, Winterthur

---

From Dr Erlach’s website:

Welcome to the website of my medical practice for homeopathy, psychosomatics and general medicine.

 

[Chandelier]

https://ajour.ch/de/story/684641/ist-long-covid-doch-heilbar-eine-neue-theorie-spaltet-die-betroffenen-in-zwei-lager

An article from a Swiss news site that tries its hardest to take both sides into consideration, biomedical research and the neuroplasticity folks.
However, is both-sidesism the right approach?
Just have a look at the wild potpurri of subheadings in this article.
It's hard to walk away from this article without being confused.
I'd argue, they should give other promising treatments such as Homeopathy, Chanting and Oil Drilling the same space.

Maybe the most relevant bit:

Rüegger wants to mediate between the camps and provide an overview with a forum on Long Covid and ME/CFS on November 26 at the FHNW (University of Applied Sciences and Arts Northwestern Switzerland).

Is Long Covid curable after all? A new theory divides those affected into two camps​

Through training, patients’ brains are supposed to learn that physical activity is not dangerous. How much is there to this promise of a cure?
By Sabine Kuster

It took a long time for the mantra that restorative exercise is harmful in this illness to reach rehab clinics.
Now the debate has flared up again. Because of an actually good piece of news.

The news is: recovery from Long Covid is possible for some sufferers with a special kind of brain training.
With meditation, breathing exercises, a new focus away from the symptoms.
It is called “brain retraining.” It is based on the modifiability of learned processes in the brain — also called neuroplasticity.

At least that is what various sufferers and some doctors claim.
The new debate in Switzerland was mainly sparked by a podcast from a Freiburg journalist and her partner, who had Long Covid — and recovered: Zita Bauer and Jann Zosso describe in “So Long Covid” in six episodes how it happened and how two other sufferers managed it as well.

President of Long Covid Switzerland is skeptical

“Such testimonials are not proof that the method works for all complaints,” counters Chantal Britt, president of Long Covid Switzerland, to the good news, “we do not know which symptoms these people had.”
While she welcomes anything that improves the situation or prevents the illness from becoming chronic, she also sees risks in such recovery stories: that other sufferers will therefore exceed their limits, that their condition will worsen, and that the illness will be simplified and portrayed again as psychosomatic.
Britt does not believe that brain retraining can fundamentally influence Long Covid.
“We do not have it in our hands to reprogram the brain and thereby change metabolic disorders and autoimmune reactions.”

A first step was taking a shower

One day Jann Zosso dared to try it: although he felt he lacked the energy to shower, and although that normally triggers a crash, he went ahead and showered.
He focused on the pleasant feeling of the water.
No crash came and he gained confidence that neuroplasticity might be real. He said he felt liberated, that he could now do something against the illness himself.

Not being helplessly at the mercy of the illness anymore. Cornelia Rüegger, a social scientist at the University of Applied Sciences and Arts Northwestern Switzerland, values this feeling too.
Even though she has not experienced such a fairytale recovery.
But since she has followed the approach, she can at least better manage the two hours per day of her reduced 20 percent workload at the university and also maintain more social contacts.
Concretely, she still keeps her limits as usual and plans rest periods after exertion; in addition she explores her symptoms attentively and tries to assess them less as a danger.
For concentration problems she meets frustration with breathing exercises that are supposed to calm the vagus nerve.

Rüegger says: “The discussion is highly charged at the moment.” She understands the mistrust of those who fear it will simply mean again: “Try harder, it’s your own fault.”
But she also heard the positive message of the podcast: there are people who have been healed.
How many? Nobody knows.
They are mainly those who were ill for only a few months, but there are isolated cases who recovered after several years.

Rüegger wants to mediate between the camps and provide an overview with a forum on Long Covid and ME/CFS on November 26 at the FHNW.
The same is being attempted by an ex-patient, Cédric Habermacher, with the website CFS-Hilfe.
“I want to build a bridge between these two poles,” he says. The artificial separation between either purely biomedical or purely neurobiological therapeutic approaches is outdated and makes no sense for a multisystem disease like Long Covid and ME/CFS.
“Both levels influence each other.” By that he does not mean a psychologizing in the sense of “You’re imagining it and just need to pull yourself together.”
The alarm system cannot be switched off by willpower, but over time it can calm down — in addition to physical treatment, not instead of it.

The placebo effect is large

That the placebo effect in Long Covid is huge was shown by the famous study on the drug BC 007: it was stopped because there was no difference compared with the placebo group.
But overall both groups improved significantly compared with before.

The placebo effect is often understood as “nothing.”
Yet it describes an important point at which self-healing can be triggered in the body — if it was not already underway.
In the disease Long Covid, this potential is obviously present for a subgroup.

For there is at least agreement that the immune system is overactive or misdirected.
It behaves as if there were still a virus to fight — hence the numerous flu-like symptoms.
Although the possibility is not yet ruled out that in some people the actual virus is still hiding in the body (viral persistence), whether active or as fragments that cause inflammation. But many experts assume a misdirection of the immune system.

Signs of an autoimmune disease are accumulating

“The results suggest that Long Covid can be associated with autoimmune diseases,” author Iwasaki told the Yale news service.
She added: “...even if it does not fully resemble any known autoimmune disease.”
That is to say: even if mice develop Long-Covid-like symptoms when given antibodies from patients, that does not mean those antibodies are the cause of the disease.
The antibodies could have been sent out by the overregulated immune system. Is this irretrievably “misprogrammed” or can it be influenced?

“Fatigue is, in our experience, treatable”

Two who are convinced that at least a portion of Long Covid patients do not have irreversible damage are Rainer Schäfert, chief physician for psychosomatics, and general practitioner
Katrin Bopp from the Long Covid clinic at University Hospital Basel.
They also write on the website: “In our experience, fatigue is treatable.”

But Schäfert says: “A large proportion have a chance of recovery.”
With their approach they have had “very good experiences.”
A study intended to prove the effect is planned.

The crash that follows even after very small exertions is also a learned mechanism that runs without the patient noticing.
The more often the path in the brain is taken, the more stable it becomes. Yet new paths are always possible — that is the idea of neuroplasticity. Brains can relearn.

This is also being used today in the therapy of chronic pain: pain can persist after injuries because it has become embedded in the neural pathways in the brain.
According to the theory, it can be unlearned again; there are some positive studies on this (link here [s4ME] or here [s4ME]), but also less clear ones [S4ME].

And yet there is criticism of the work of the Long Covid clinic in Basel.
A patient who was recently treated there says she did not feel better afterward and neither did the seven other patients she had been in contact with.
“On the contrary, many people’s symptoms worsened,” says the woman, who wishes to remain anonymous.
She points to the Charité in Berlin, which specializes in Long Covid and whose guideline warns against such deconditioning and treatments of dysfunctional thought patterns.
Apps like “Curable” (CHF 150/year) — which Jann Zosso used — and “Gupta Program” (CHF 500/year) have no evidence base and would “pose a considerable risk of harm.”

Long Covid Switzerland also took a clear position against this this week and criticized that fatigue is being declared “curable” across the board.
Another sufferer, who was a physician before her illness, says she is “shocked” at how widely neuroplasticity is now being advocated for Long Covid in more and more hospitals: “I do not know of any other area of medicine in which a mere assumption is made the basis of medical action.”

“A bit of positive thinking doesn’t help”

Habermacher, the initiator of CFS-Hilfe, is convinced from his own experience that you can retrain your brain.
But not by, as is common in many rehab clinics, simply prescribing a restorative training program.
“Ignoring crashes is harmful, many reports and studies show that,” says Habermacher.
And Katrin Bopp also says: “It certainly hasn’t been accepted everywhere that you don’t have direct control over the brain.
A bit of positive thinking doesn’t help.”
Habermacher emphasizes that the neuroplastic approach is not an easy process and does not work the same for everyone.

Here we are again between the hardened fronts.
Cédric Habermacher says that is exactly what worries him from the perspective of those affected.
“The fear of profiteering or psychologizing the illness means that many patients are denied access to a hopeful perspective,” he believes.

Cédric Habermacher has compiled all his knowledge about neuroplasticity and the first steps at www.cfs-hilfe.ch.

 

[Grigor]

I wrote the following as a reply to her post on LinkedIn:

Thank you for writing this piece. I think that, unlike the podcast, it was more balanced and nuanced, with different views represented.

What I found unfortunate is that you cited only one negative study in PAIS, even though there are several. Both in the neuroplasticity space and the broader mind-body field. None of them show meaningful objective improvement or objective evidence.

The recent interim AIR trial results, which are part of the Long Covid Project that Basel University is also involved in, show that Amygdala and Insula Retraining (Gupta), ACT/CBT based digital therapy, and treatment as usual all perform the same. Only small subjective changes were seen, consistent with natural fluctuation rather than a treatment effect. Gupta scored slightly worse than TAU.



The 3 day Lightning Process study looked positive only because the investigators switched the primary outcome mid trial, replacing objective school attendance with a subjective measure. The original school attendance outcome showed no improvement, which undermines claims that the Lightning Process works.

https://www.statnews.com/2019/12/13...awed-chronic-fatigue-syndrome-research-paper/

Mind body physiotherapy approaches like Qigong, isometric yoga, and body awareness therapy produced some subjective improvements, but no objective gains in physical function, activity levels, or fitness. The review notes that any apparent effects disappeared when stricter ME criteria or objective measures were used, and none of these interventions showed evidence of effectiveness for patients with PEM.

https://link.springer.com/article/10.1186/s12967-020-02683-4

Mind body interventions produced subjective improvements in some studies, but the evidence is low quality, inconsistent, and limited by major methodological problems. Crucially, there is no objective evidence that these approaches improve physical function or disease mechanisms in ME.

https://www.mdpi.com/1648-9144/57/7/652

If we do see objective improvements, there are many other reasons for this than what you mentioned in your article. That does not equal evidence for neuroplasticity or brain retraining.





Another point worth mentioning is that the way neuroplasticity is being used in PAIS is misapplied. As professor Todd Davenport explained, in stroke there is a localized injury that allows the brain to remodel around damaged tissue once the acute event is over. Rehabilitation builds compensatory pathways so that a person may regain some function like walking or talking, but it does not cure the lesion itself. That remains. It never fully recovers. The claim that this happens in PAIS is baseless.

Long Covid and ME, on the other hand, involve systemic dysfunction, poor perfusion, and ongoing pathophysiology. There is no stable baseline to retrain around. Adding cognitive or physical load before the underlying dysfunction resolves is, as he puts it, putting the cart before the horse. It is not how neuroplasticity works.

https://likeannopeningbandforthesun...ong?r=7y4i4&utm_medium=ios&triedRedirect=true

Lastly, I think you cited the PRT study too uncritically. There are many caveats, including the weak placebo control group.

https://docs.google.com/document/d/1o-e06SJrL3u7hYCfhj5hHRXqfRxpN4VbHiyKs96S9Ew/edit?usp=drivesdk

I am still glad you let both sides speak, although it would have been more balanced to include practicing medical specialists like Maja Strasser or Michaela Bauer. As it stands, it felt more like patients versus medical specialists. That creates a false balance and remains biased, unfortunately.