Expert: Dealing with ME/CFS among “biggest medical scandals”

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”.

Scientists studying post-acute infection 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 about the ongoing discussion in parts of science and the medical profession in Austria as to the extent to which such syndromes actually have somatic (physical) causes. Recently, patient organizations in Austria, but also local scientists, warned against misinterpreting post-acute infection syndromes as mental or psychosomatic illnesses.

“One of the biggest scandals of the last century”

“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 infectious syndromes. We are committed to changing that. We are committed to doing 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.

“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 that shows that cognitive behavioral therapy (CBT or CBT) or so-called graded exercise therapy (GET) has “any role” in healing people with ME/CFS or long-term Covid play “which has not been completely discredited by serious 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.”

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. However, doctors who certify that those affected have a psychosomatic or psychological illness would be on the “fringe”.

Not psychosomatic

“We know – without the slightest doubt, by the way, the scientific work on this has been done – that people with a post-acute infection syndrome (such as ME/CFS or Long Covid) have physical changes that are measurable. And that cannot be done a psychosomatic or mental illness,” says Putrino. ME/CFS has been described and recognized by the World Health Organization (WHO) since 1969, but is still not sufficiently understood and researched. The main triggers are bacterial or viral infections. Patients also mention operations or trauma, among other things, as possible triggers.

Putrino pointed out that, among other things, significant and clear changes in neuroendocrine function had now been measured, “i.e. changes in testosterone levels, estrogen levels and cortisol levels.” “These are changes, by the way, that are actually the opposite of those that have been associated with anxiety and depression over the years,” he emphasized. You can also see changes in immune function, “which indicate that the body is fighting something over a longer period of time.” “So we’re seeing things like T cell exhaustion and that (…) other viruses that were previously latent, such as herpes viruses, are being 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.”

PEM not a pipe dream

The expert also advocates that patients be strongly involved 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 the severe stress-recovery disorder PEM, which, according to experts such as Kathryn Hoffmann from MedUni Vienna, is considered the 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 it takes 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.

Take patients seriously

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 . Numerous renowned experts have gathered at this, according to the initiators, the largest international conference to date (May 15/16, https://unitetofight2024.world). In addition to Putrino, the immunologist Akiko Iwasaki from Yale University (USA), the German stigmatization researcher and psychiatrist Georg Schomerus from the University of Leipzig and the ME/CFS specialist Carmen Scheibebogen from the Berlin Chariete have been announced as speakers.

There is also a need for educational campaigns around the world like the one in the 1980s about AIDS, said Putrino: “I think that’s absolutely crucial.” Most people would simply be unaware 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.” 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.” Viruses can also be destroyed using ultraviolet light systems. “And of course there are masks.” The measures are not expensive, he emphasized: “Opening a window is quite cost-effective.” Even covering large amounts of square footage with UV light systems would require “only a few $1,000.” His only request to those in charge of politics is to “follow your own research,” as he said with regard to the data from the US health authority CDC (Centers for Disease Control and Prevention): According to their numbers, the number of people with Long -Covid in the USA recently rose from 5.3 to 6.8 percent (January 2024).

“We can wish that it wasn’t true,” he said about the causes – but this doesn’t change anything. “Everyone wants to get back to normal. The problem is we don’t have the magic wands to make that happen.” It is politically easy to simply act as if prevention does not 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 tackle the problems head on. And that’s what we need from politicians now.”