It appears that each week, more and more proof surfaces that conditions like ME/CFS and Long Covid have physical origins. The reasoning that these illnesses are brought on by a poor mental state is, in many respects, fading into ridicule.

Researchers like Bhupesh Prusty and Ron Davis are rigorously examining mitochondrial abnormalities. Others are deeply invested in decoding the brain inflammation and nervous system irregularities brought on by ME/CFS and Long Covid.

Yet while this all sounds greatly promising, there seems to be an ongoing disconnect between any research findings and the actual medical field. Exasperated patients are still leaving their doctors offices feeling disbelieved, belittled and, worse of all, without any treatment. Much of the “treatment” that is offered isn’t treatment at all but rather illness management because so few people ever bothered to investigate post viral illnesses prior to the pandemic. Even more dismaying are the accounts of Long Covid patients seeking treatment, often for the umpteenth time, and being told, yet again, that their symptoms are all in their minds.

*photo courtesy of the National Cancer Institute*

So, why the disconnect? I understand doctors and public health administrators are busy. They do not have time to comb through all the latest research. This is not an excuse, however, to invalidate patients by chalking their very real illness up to hysteria or neurosis.

What mainly fuels this disconnect is the rather prolific presence of psychiatrists and psychologists influencing Long Covid research worldwide. It’s the same menacing presence that hampered ME/CFS research for so long and resulted in incalculable suffering and an untold number of deaths.

A stark reminder of the false and dangerous “science” that posits cognitive behavioral therapy and exercise as effective treatments — even cures — for post viral diseases came just a few weeks ago. A Psychiatric News press release dated May 22, 2023, announced that Michael Sharpe, emeritus professor of psychological medicine at Oxford University and longtime enemy of ME/CFS patients, received a lifetime achievement award for championing what’s known as the biopsychosocial disease model.

Most of us in the chronic illness community are familiar with this dreaded phrase. The model, of course, relies on the patient to start thinking differently in order to alleviate symptoms. Sharpe, who described a “vicious cycle” of depression, fatigue and deconditioning, touted Cognitive Behavioral Therapy (CBT) as improving patients’ lives and getting them back to baseline functioning. I’ve never seen one single patient testimony backing this claim.

Even more damning, Sharpe included in his acceptance speech that psychiatry needs to define how it can help physically ill patients with “robust clinical trials.”

The backlash on Twitter was fierce, with many calling out the usual questions, concerns and very real worry over what such an influence could bring. The infamous scandal of the 2011 PACE trial, of which Sharpe was a co-author, was brought up, among many other past injustices.

But I am seeing a disconnect on a larger, more immediate scale, reflected in the desperation I see every day on social media. On a global scale, untold numbers of formerly healthy people are begging for access to everything from repurposed HIV drugs to euthanasia services in Switzerland. Failing this, some take treatment and other matters into their own hands.

Public health officials are clearly not paying attention. Applauding a man who has caused so much detriment as an achiever is a slap in the face to patients and advocates everywhere. There is no more room for the distraction of psychiatry in this arena. We must take urgent action to solve the physical mechanisms of these devastating conditions and immediately act to fully include all information in medical school curricula.

The public health triathlon that was Operation Warp Speed needs immediate duplication with informed researchers and policymakers. The NIH’s RECOVER program was a thin veil over the disinterest of government officials and the healthcare community regarding Long Covid and other post viral diseases. It is truly disheartening to see the disconnect.

No one can see this more clearly than those of us who have long suffered ME/CFS and all its myriad of catastrophes.

The Covid pandemic continues to expose cracks in the U.S. healthcare system in ways I never thought I’d witness in my lifetime. The fallout is an even deeper lack of trust in a system that was already known to harbor profound corruption, and not just among chronically ill folks. As the millions of Long Covid patients continues to grow, policymakers are continuing to not care, and the issue seems to have all but been cleared from the administrative agenda.

We may not be able to blame Michael Sharpe and his cronies directly for the conception of post viral conditions being psychological and thus ignored, but we surely can hold them accountable for perpetuating this falsehood that has resulted in the most disregarded humanitarian disaster whose death toll will never be known.

I say this because I read every day about patients’ frustrating experiences with doctors, specialists, friends, family, co-workers, spouses, children, parents, partners…the list goes on. What do the frustrations consist of? Disbelief, which is an indifference of the most hurtful kind.

—Bridget O’Shea