Few topics in the ME/CFS world are more divisive than brain retraining.

One camp often claims that ME/CFS is only the result of a ‘hypersensitive nervous system’. For proponents of this view, exercise intolerance and post-exertional malaise are not driven by problems in the muscles but are instead simply created by ‘protective mechanisms’ in the brain. And if we can ‘rewire’ these neurological responses, we can completely recover. There are some more nuanced views out there, but this particular narrative has become pervasive on YouTube and among brain retraining coaches selling courses valued at hundreds – if not thousands – of dollars.  

What brain retraining involves

The other camp claims that brain retraining is nothing but pseudoscience and can have no effect on ME/CFS whatsoever. This claim is maintained even though there exist plenty of anecdotal stories of those who have improved or even recovered thanks – at least in part – to brain retraining. ‘You never really had ME/CFS!’ is the common refrain, an ironic reversal of the doubting doctor who automatically disbelieves the ME/CFS patient and their symptoms. And this position is also held even though neuroplasticity is considered a scientifically valid treatment for other health problems, such as in post-stroke recovery.  

I personally believe that the likely more accurate picture challenges both camps and, in this article, I will explain why.  

Countless biological abnormalities have been found as a result of painstaking ME/CFS research. Patients usually have low blood volume, microclots and bodies riddled with autoantibodies that interfere with blood perfusion (blood flow) and cellular function.

However, the most clear-cut refutation of the pro-brain retraining camp comes from a Dutch study at the end of 2024 which showed that Post-Exertional Malaise (PEM) can actually cause muscle tissue death. 

Yes, that’s right: PEM can actually make some of your muscle tissues die. Luckily the body will slowly regenerate this tissue but, no wonder crashes feel so awful, right? And yet the brain retraining coaches often make the claim that PEM is a phenomenon only created by the brain! This does a real disservice to the scientists working night and day on this disease and also to patients who have a right to know what is actually occurring in their body. One could argue that telling patients with necrotic muscle tissue that their symptoms are just ‘all in their brains’ is the ultimate form of gaslighting. 

I think we all know that ME/CFS involves a hypersensitive nervous system. A slight noise can make us jump out of our skin. Sunlight can make us feel like we have a terrible hangover and some of us can smell perfume from large distances away. Sometimes, hearing someone chewing can lead me to feeling unreasonable levels of rage! 

But while there are likely maladaptive neuroplastic changes that can create some of these problems, they are not driven by the brain alone. For ME/CFS is a multi-system disease, and one where a variety of interlinking pathologies can feed back into and worsen the nervous system sensitivity. 

Low blood volume (hypovolemia) is the most obvious example. The brain needs adequate blood flow to work and, if it doesn’t get it, it becomes very ‘stressed’. One of the primary reasons for a dysregulated nervous system in ME/CFS is hypovolemia. When I drink up my Oral Rehydration Solutions, like Normalyte or Dioralyte, a supplement which can quickly and effectively boost blood volume, my nervous system calms down significantly.

Severe and housebound patients are particularly affected by low blood volume, often having 1.2 litres less blood than normal. I find it very frustrating when brain retraining salesmen tell such patients that ME/CFS symptoms, no matter what severity, are only created by the brain. When you think about how well-established hypovolemia is as a symptom in ME/CFS, this is actually unforgiveable. 

Other factors that reduce blood perfusion – like microclots and autoantibodies – will also affect the nervous system. In fact, autoantibodies can themselves cause dysautonomia as was proved when injecting Long Covid plasma into mice resulted in immediate nervous system dysregulation.

How many times have ME/CFS patients been told there is nothing wrong with them and their problem is probably psychological? While the most typical neuroplasticity narrative suggests that a maladaptive nervous system is the issue – rather than a psychological problem -, its dismissal of any other pathophysiological factors make for a view that is worryingly reminiscent of the disbelieving doctor. 

And sometimes the advice given comes to pretty much the same thing: ‘you just have a phobia of exercise, you need to get up and start increasing your activity, there is no physiological reason why you can’t’. 

So there are profound and misleading mistakes in the most typical brain retraining narrative. There are other concerning factors too. One is the cost of some programs which can run into the thousands of dollars. One program founder even said in an interview that his aim was to become a millionaire. Another, in an exchange with me in the comments of his YouTube channel, said that his special techniques could normalise low blood volume in just twenty minutes. This is truly an area where sharks and charlatans are preying on the vulnerable. 

But that doesn’t mean that we should dismiss the role of neuroplasticity altogether. Far from it, in fact. 

So let’s now consider the other side of the coin: how might neuroplasticity, when considered in a more balanced way, help ME/CFS patients?

Learn more about neuroplasticity and mind body approaches

Neuroplasticity is not woo-woo. It is a scientific fact that the brain changes in response to experience and in response to specific exercises that can work on its function. Without neuroplasticity, stroke patients would never be able to use their limbs again but, with focused and repetitive exercises, they can often regain the use of their limbs by recruiting new neural pathways for the task. 

ME/CFS research continues to identify the brain’s involvement in the disease  (as part of a multi-systemic illness, of course). The team at Griffith university recently discovered disruption to brain connectivity during mentally demanding tasks so it is a perfectly legitimate question to wonder how neuroplasticity could help. Especially if neurological exercises are formulated to meet the exact nature of the problems in the ME/CFS brain.

Instead, it is not uncommon for even the mere mention of neuroplasticity to be blocked or banned in ME/CFS groups or forums. Imagine if that happened in a stroke recovery group: would that be right? 

ME/CFS is a devastating disease and to recover from it arguably represents the greatest achievement of anyone’s life. We have much to learn from those who manage to get over the finishing line. It is counterproductive to feel threatened by how someone recovers. Instead, we should be interested and curious to learn from their experience. 

Of course, there are many who do not recover using neuroplasticity or who just improve a little bit. But some do cite it as integral for regaining their health. Unfortunately, these stories are often shouted down and blocked. I’ve witnessed many online pile-ons where the same objections are made: ‘You never had ME/CFS!’, ‘You just had a spontaneous recovery, it was nothing to do with your brain retraining!’, etc, etc. 

Why brain retraining doesn’t work for everyone

From having followed many neuroplasticity recovery stories, it is my opinion that the majority of such former patients clearly describe having had classic ME/CFS symptoms. We need to be allowed to ask why they got better and to consider this from a scientific perspective. 

This is the biggest mistake. Unless we allow scientific researchers to consider the neuroplastic aspects of ME/CFS, this is an area that will always remain in the hands of the aforementioned charlatans and sharks. They will continue to be given free rein to make whatever kinds of claims they like, deeply misleading and sometimes damaging ME/CFS patients. 

We need the scientific process to step in, give us a more accurate picture of neuroplasticity’s potential for the disease, and ultimately to provide us with research-informed brain retraining protocols (without marketing, enormous price tags or hype attached). 

Until the topic loses its taboo status, and while the two camps wage war on each other, there will not exist the foundations to allow for such scientific exploration to occur. 

I have been ill with ME/CFS for eight years. I have often practised ‘brain retraining’ and it has been genuinely helpful. It reduces my noise and smell sensitivity, can stabilise my wayward nervous system, and give me a better quality of life. Has it improved my exercise intolerance or increased my blood volume? Not in the slightest. But I am still grateful for it, and when I consider carefully how my brain is functioning, I can sense that a maladaptive neuroplastic state is part of what my illness involves. I am happy to work on trying to change it and to be curious about where that might lead.  

The polarisation around brain retraining does not serve the ME/CFS community. 

Instead, we need to be allowed to have a more accurate and balanced discussion about the whole topic. This means, as a community, we need to allow scientists to consider seriously the potential role of neuroplasticity in this disease. We should not confuse the scientific fact of neuroplasticity – or its potential power – with the kinds of ludicrous claims made by certain brain retraining coaches. 

I would hope to see serious consideration of questions like the following: 

• In what way might a maladaptive neuroplastic state actually be part of the illness? 
• Could it be driving (in a significant way) the heightened nervous system activity? 
• If neuroplasticity can influence that hypersensitivity, how might it affect the rest of the pathophysiology? 
• Why, in some patients, might it influence the rest of the disease to the extent that recovery becomes possible, while, in others, they remain sick despite their best efforts?

And, ultimately, we need scientifically informed neuroplasticity protocols for ME/CFS which can target the necessary brain regions with precision. Along with studies that give us an accurate estimation of just how much this might help, and what the limits are of such protocols. 

No one dismisses the role of neuroplasticity in improvement from stroke. We need to reach a point where the same can be the case for ME/CFS. 

But that can only happen when the scientific process can step in and consider this question entirely objectively, and take the whole area out of the hands of those who currently push deeply misleading – and sometimes dangerous – views of what ME/CFS supposedly involves.

To learn more about Patrick’s approach to neuroplasticity and other scientific based strategies he has used to improve his ME/CFS check out his book, Understanding ME/CFS & Strategies for Healing and his YouTube channel.

• Brain retraining FAQs
• 4 mind body approaches for ME/CFS