Dealing with those affected by one of the “biggest scandals in medicine”

Long Covid specialist and neuroscientist David Putrino is calling for more awareness of post-acute infection syndromes (PAIS) such as ME/CFS. These illnesses, which have increased sharply due to Corona, should under no circumstances be misinterpreted as “mental,” said the professor of rehabilitation at the Icahn School of Medicine (Mount Sinai/New York) in an APA interview. He sees the treatment of ME/CFS sufferers as one of the “biggest scandals of the last century in medicine”. We recently reported on the example of the Austrian Long Covid patient Maarte Preller that psychological misdiagnoses or reinterpretations of diagnoses often occur with regard to Long Covid and ME/CFS. You can read about our research here.

Professionals studying post-acute infectious syndromes such as Long Covid/Post Covid or the multisystem disease ME/CFS must “constantly advocate for the fact that what we are dealing with is an organic disease”. This is unfortunate, said Putrino. Recently, patient organizations in Austria, but also local experts, warned against misinterpreting post-acute infection syndromes as mental or psychosomatic illnesses. “Many people have said this – and I completely agree – that this is one of the biggest scandals of the last century in medicine: the way people with ME/CFS, Long Covid, chronic Lyme disease and other post-acute infection syndromes were treated. We are determined to change that. We are committed to pursuing the science that will lead us to actionable treatments and perhaps even one day cures,” said the neuroscience professor. Putrino is also represented on the scientific advisory board of the WE&ME Foundation, founded by the Viennese bakery family Ströck, which is dedicated to research into ME/CFS.

David Putrino

© Icahn School of Medicine at Mount Sinai

“The last 60 to 70 years of attempts to treat this disease with psychological management and exercise have failed miserably,” emphasized Putrino. There is “not a single” peer-reviewed study showing that cognitive behavioral therapy or so-called graded exercise therapy plays “any role” in healing people with ME/CFS or Long Covid “that has not been completely discredited by reputable scientists”. Behavioral therapy and exercise therapy are nevertheless tools that are used “because they are cheap” and therefore “attractive to governments”. But that doesn’t help: “It’s such a negative situation that has been going on for decades.”

“Medical Gaslighting”

Even in the USA, ME/CFS or Long Covid sufferers continue to be affected by “medical gaslighting” (the denial or trivialization of their symptoms) – by “medical professionals who are not up to date in the specialist literature”. said Putrino. “We know – without the slightest doubt, by the way, the scientific work on this has been done – that people with a post-acute infectious syndrome (such as ME/CFS or Long Covid) have physical changes that are measurable. And that cannot be explained by a psychosomatic or mental illness,” says Putrino.

Putrino pointed out that significant and clear changes in neuroendocrine function had now been measured, “i.e. changes in testosterone levels, estrogen levels and cortisol levels.” You can also see changes in immune function “that indicate that the body is fighting something over a longer period of time.” “So we see things like T cell exhaustion and that (…) other viruses that were previously latent, such as B. herpes viruses, are reactivated in the body.” Cognitive changes, changes in the autonomic nervous system “that can be measured and objectified,” such as postural orthostatic tachycardia syndrome (POTS), can also be detected. This is “not a psychosomatic change”. It’s unfortunate that this is still a question, he said. “The science is settled and no reputable scientist will tell you that these are mental illnesses.”

Patients should be more involved

The expert also advocates strongly involving patients in both their treatment and research: “A really good example of this is one of the main symptoms of both ME/CFS and Long Covid: Post-Exertional Malaise,” said Putrino severe stress-recovery disorder PEM, which, according to experts such as Kathryn Hoffmann from MedUni Vienna, is considered a cardinal syndrome of ME/CFS. For decades, “so-called ME/CFS and Long Covid researchers” have been “explaining away or misunderstanding” PEM, Putrino said. “Sometimes they don’t even distinguish it from fatigue, which is a big mistake and a fundamental misunderstanding.” PEM is also associated with all sorts of psychological problems.

However, those affected themselves would know that PEM is not fatigue. Many used to be athletes or climbed mountains and would literally “yell” at the researchers that they know what fatigue feels like. All we need are researchers “who actually listen to this to gain the insight: What if we looked beyond the psychological?” You have to look deeper than with standard laboratory diagnoses that your family doctor carries out. “And I want to make it clear: every time a researcher has done that, they have found something,” he referred to work by Rob Wüst from the University of Amsterdam, which shows that people with PEM have “abnormal, damaging proteins produced in the muscles.

If you look closely and follow the patients’ instincts, then you will learn from research, says Putrino. Participation in patient-organized research or symposiums is therefore important, he referred to an online conference in May organized by those affected (title: “UniteToFight”), in which he will also take part as a speaker and which is freely accessible to everyone. There is also a need for educational campaigns around the world like the one in the 1980s about AIDS, says Putrino: “I think this is absolutely crucial.” Most people are simply not aware of what happens to those affected by post-acute infection syndromes. “We need to shine a light on how people with ME/CFS live: without medical care and in complete denial of the fact that there is anything wrong with them.” This will make many people “angry around the world – and anger leads to action.”

The cause of Long Covid

Many people are also not aware that they too could be affected by Long Covid (and the most severe form, ME/CFS). In view of the accumulation of cases, one should now speak of a “Long Covid epidemic”, said Putrino. Putrino emphasized that the cause of Long or Post Covid is clearly clear, “namely a SARS-COV-2 infection”. He therefore advocates prevention: “Of course there are vaccinations, but there are also HEPA filters. There is also good ventilation in the rooms.” Ultraviolet light systems can also be used to destroy viruses. “And of course there are masks.” The measures are not expensive, he emphasized: “Opening a window is quite cost-effective.”

We can wish that it wasn’t true,” he said about the causes – but this doesn’t change anything. “Everyone wants to go back to normality. The problem is that we don’t have the magic wands to achieve that.” It is politically easy to simply pretend that prevention doesn’t work. But one must understand – “and we have this understanding from research” – that this approach “will lead to catastrophic consequences in ten or 15 years,” warned Putrino, with a view to the long-term damage of repeated infections. “Or we could actually roll up our sleeves and try to address the problems head on. And that’s what we need from politics now.”