The global COVID-19 pandemic has caused a wave of people suffering from post viral symptoms (known as long-COVID). A whole new group of people who are entering the grim realm of chronic illness. Already, tons of news articles and patient forums are broadcasting the frustration and desperation from these patients.
People are searching far and wide for answers to their condition. However, their desperation may lead them to certain public figures and private companies who have targeted the chronically ill for decades.
History of neglect
People who went from healthy to chronically sick overnight during the pandemic are now faced with a brutal reality. A reality that patients with myalgic encephalomyelitis (ME/CFS) have faced for decades – the fact that there is often very little help to get from doctors.
Why? Because treatment for post viral illnesses has been mislead for decades by influential people and poor research. This has resulted in a very poor treatment plan (GET and CBT) for people who suffer from long term conditions following a viral infection.
Because of certain influential doctors and psychiatrist – who insist that ME/CFS is a mental disorder – patients have been accused of malingering and/or just not trying hard enough to get better. This has lead even otherwise well-meaning doctors to mistreat their severely ill ME/CFS-patients for decades.
Blue ocean for alternative health providers
This tragic situation sets the scene for companies such as The Lightning Process, ANS Rewire, DNRS, Recovery Norway and similar self-proclaimed recovery programs. The programs have some things in common: they claim that they can treat severely ill patients by unproven methods such as “positive thinking” and “reprogramming the brain”.
It did not take these companies long to put long-COVID on the list of illnesses that they claim to treat. Before actual researchers and doctors have found out the mechanisms that cause some people to develop ME/CFS (or long-COVID), these programs apparently already have the treatment ready.
On their websites, they proudly list long-COVID as an illness they treat. Meanwhile, patients and ME/CFS experts are not impressed with these companies. For instance, an ME/CFS patient survey showed that zero percent reported benefits from the Lightning Process and several doctors have expressed their concerns about the programs’ supposed science 1234
The programs that claim to treat post viral illnesses have decades of experience on their target audience. They know what patients want to read. They know how to use anecdotal testimonials and “success stories” from other supposedly recovered long-covid patients.
The programs use overly emotional valued expressions such as “do you want your life back too?” or show pictures of supposedly recovered people now climbing mountains or spending time with family.
The problem is, there is no way to know if the smiling people from the testimonials are even real. Also, it is impossible to rule out the placebo effect and other things that may influence outcomes from any intervention.
This is the whole reason why proper science depend on randomised controlled trials and not anecdotal evidence. These programs have no fixed inclusion criteria. Therefore, the patients are lumped together in one big group, regardless of their symptoms and illnesses.
The confusion surrounding post viral fatigue
It is far from unusual to get lingering symptoms following an infection. There are different types of complications, though, and even though these differences have been described in literature it evidently still confuses a lot of doctors.
An importance difference is, for instance, regarding recovery. Post viral fatigue (PVF) from any virus is often described as something the patient will recover from in everything from a few months to a few years. 56Recovery from post viral fatigue is spontaneous but the symptoms are almost identical to those of ME/CFS.
Therefore, as you can imagine, these patients might think that they have ME/CFS or long-COVID. Later, they will mistakenly believe that the last thing they tried (whether it was vitamin-C, celery juice, touching a magical crystal or using a psychological program) was the thing that cured them.
Long-COVID controversy, Paul Garner and Recovery Norway
A grotesque example of this is when Paul Garner recently claimed to have cured long-COVID with positive thinking. For many people, it seemed outrageous that an actual doctor believed he cured himself with the “use of his mind” when, in reality, Paul Garner simply had “normal” post viral fatigue and recovered naturally.
“I feel that I have looked down the barrel of the ME/CFS gun and disarmed it. I believe that we can unwittingly reinforce, as Pavlov has shown, the dysfunctional autonomic tracks in the brain set up by a virus long gone.” – Paul Garner7
His claims are extremely damaging for other patients and, sadly, it feeds into a much bigger narrative. A narrative that have actively belittled myalgic encephalomyelitis for decades. It perpetuates the debunked myth about ME/CFS being a psychological disorder, hinders funding for real research and makes way for nonscientific cure-programs.
It can seem absurd that a doctor can make such uneducated statements. You would expect him to know the difference about science and anecdotal recovery stories.
However, it is possible that it is not just based on ignorance. Paul Garner credits his recovery to a certain controversial Norwegian organisation namely Recovery Norway (an organisation which pushes The Lightning Process). What a weird coincidence, right? Probably not.
Recovery Norway has already broadcasted Paul Garner’s story on their platforms which makes it seem a lot like foul play.
The way forward
Most people recover naturally from viral infections but not everyone. It does not mean that some incompetent doctors, psychiatrists and private companies can keep insisting on their outdated and debunked theories. The evidence is there and it really is time for those people to stop their mistreatment of patients.
Long-COVID is, as tragic as it is, the opportunity to push for proper treatments for ME/CFS. It is also the opportunity to bury the pseudoscience that have pestered patients for so long.
Until then, long-COVID patients must be aware that there are organisations and companies out there preying on the desperate.