There is a horrifying but pervasive myth among many healthcare professionals that disabled people have been all too familiar with for decades. But now in the midst of a global pandemic that is leaving its mark in countless ways across the planet, this myth has been given a platform from which it can do more harm than ever before.
Post-COVID syndrome is a new concept, something scientists have only begun to investigate as tens of thousands of people experience lingering symptoms for months after seemingly recovering from COVID-19. In the United States this phenomenon is being referred to as post-COVID “long haulers”, in the UK it’s referred to as “long COVID.” Published studies so far have shown that surveys conducted by patient groups tell us that 50% – 80% of patients report continuing symptoms three months after the onset of COVID-19 even if tests no longer detect traces of the virus in their bodies. Of course, this virus is new. We have no idea if this post-COVID syndrome will be permanent in some people, it’s a terrifying game of wait and see for those currently battling the new experience of living with chronic illness after surviving COVID-19.
Heather Hogan, a senior writer for Autostraddle documented her experience after contracting COVID-19 in March 2020. Five months after the onset of the virus, she was experiencing “Racing heart, palpitations, stroke-high blood pressure, chest pain, weak legs, fatigue that felt like my body was made of lead, nausea, loss of appetite, extreme weight loss, shortness of breath, brain fog that caused me to forget how to form sentences, bladder dysfunction, and creeping numbness and tingling in my feet and legs.” A cardiologist diagnosed her with Postural Orthostatic Tachycardia Syndrome (POTS), a condition I have myself and that is shared by many disabled people as a common co-morbidity to several genetic and degenerative conditions. But Heather didn’t have POTS before COVID-19. Her physician called her diagnosis Post-COVID POTS.
Dr. Anthony Fauci has speculated that COVID-19 survivors describing longstanding debilitating symptoms will develop myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is a condition shared by one to two million people in the US according to estimates by The National Academy of Medicine – and it can be triggered by many infectious illnesses such as lyme disease, mononucleosis, and SARS (severe acute respiratory syndrome, another coronavirus disease). The director of the World Health Organization shared similar concerns that there may be a rapidly growing rate of chronic illnesses (including ME/CFS) in the wake of COVID-19.
The National Institute for Health and Care Excellence – NICE – has a committee working on developing a guideline for Post-Covid Syndrome. NICE guidelines are meant to be “evidence-based recommendations developed by independent committees, including professionals and lay members, and consulted on by stakeholders”, according to NICE’s website. NICE has a checkered history however, specifically in the development of their guidelines for ME/CFS. The panel that created their 2007 guideline document was dominated by cognitive behavior therapy and graded exercise therapy proponents, and unsurprisingly these interventions ended up as core treatment recommendations in the resulting guideline. The ME Association was clear in their response: “As there is a large amount of consistent patient evidence reporting that Graded Exercise Therapy can cause serious harm to people with ME/CFS, this recommendation should be withdrawn from the current clinical guideline.” ME/CFS patients worldwide spoke up about the deeply flawed guidelines, and shared how this document and the faulty PACE trial it was heavily based upon were being used to deny them appropriate care, to justify ableist treatment, and to inflict harm towards ME/CFS patients.
For years, it was only the voices of ME/CFS patients and disability advocates that were speaking up about the anti-scientific nature of claims being made by the authors of the PACE trial and their colleagues. Now the PACE trial is infamous for its bad science and unethical contributors. How were these indisputable methodological and ethical failings finally revealed for what they were? The unrelenting work of ME/CFS patients and disability advocates who pressed on for years, demanding to review the actual data underlying the $8 million dollar PACE trial published by The Lancet. Forced by a court order through the work of an Australian ME/CFS patient, the study’s authors finally released their raw data in 2016. It revealed an astonishing manipulation of data and methodological lapses, including investigators weakening key outcome thresholds after data collection. The PACE trial, a basis for the NICE guideline on ME/CFS, had been “debunked”. NICE finally relented after an onslaught of negative public commentary on the dangerous recommendations in their guideline and the public revelation (after the freedom of public information request was published by Virology Blog) that the PACE trial was bad science, and the expert review panel was remarkably biased and lacking in diverse voices. NICE reversed itself and launched a full-scale revision process. This revision process was interrupted in 2020 as COVID-19 took precedence.
History repeats itself.
Regrettably, NICE appears to be duplicating their earlier mistakes in the creation of their Post-COVID Syndrome Guidelines. Their committee for this guideline includes a doctor with a spectacularly ableist, biased, and overtly non-evidenced-based history – something that flies in the face of the stated purpose of NICE guidelines. Documents that are meant to be evidence-based at their core cannot be created by committees that include people like Professor Lynne Turner-Stokes, and history repeats itself as NICE once again choses remarkably biased contributors to form their committee. A quick glance into Lynne Turner-Stokes reveals a disturbing slant in her viewpoints – a refusal to believe the lived experience of patients, an erasure of invisible disabilities, an overt devaluing of patient-centered care, and appallingly apparent ableism. The inclusion of Turner-Stokes on the NICE committee for the guideline for long COVID was noted by Trish Greenhalgh at an event she moderated as part of a three day online conference that ended Oct 17 by BMJ Live in a session titled “Rehabilitation for the long term effects of COVID-19”.
Accessible online is an especially disturbing presentation created by Turner-Stokes regarding “Medically Unexplained Symptoms”, in which she proceeds to paint chronic illness sufferers as attention-seekers, “hysterical”, and hypochondriacs. She even lists a selection of chronic illnesses which she has deemed “psychiatric diagnoses”, including irritable bowel syndrome and ME/CFS. This is not evidence-based in any way, as these conditions are recognized and documented physical conditions that are not considered by any legitimate and respected medical organizations to be “psychiatric diagnoses”, as Turner-Stokes claims. How can a woman who believes that ME/CFS is an imaginary disorder, something only in the heads of patients – be a part of a committee tasked with creating an evidence-based guideline on post-COVID syndrome when ME/CFS is a documented component of said syndrome? NICE has once again failed to vet their chosen contributors to ensure an ethical and unbiased team worthy of creating such an important guideline.
If only Turner-Stokes presentation ended with her unscientific condemnation of so many chronic illness patients and their experience with disability. Instead she chose to dig in with some of the most detrimental and potent ableism imaginable. In her attempt to paint chronic illness patients as attention-seekers, she goes on to describe what she views to be their motivation in searching for answers and diagnoses from their healthcare providers. In a slide she has labeled “Secondary Gain”, she outlines what she believes to be advantages to disability: Financial/Environmental (benefits, equipment, accommodation), Support, Care and Attention (from family, friends/carers), Excuse for Avoidance (eg. of unwanted sexual attentions), and Social Mystique or Importance (having a “rare” condition).
It was at this point in reading her presentation that I, as a disabled person, finally broke. I described to my family a “rage-filled scream that burst from my soul”, a sentiment shared by many members of the disability community I follow. This poisonous ableism was being given a seat at the table where guidelines for post-COVID syndrome were being developed – amplifying its platform and impacting perhaps tens of thousands of COVID-19 survivors now embarking upon navigating their newly acquired disability. As our disability community grows from the aftermath of COVID-19, so grows the unchecked epidemic of toxic ableism in the medical community at large through the influence of the NICE guideline committee.
Disabled people know the “secondary gains” she describes to be laughable at best, and her viewpoint to be lethal at worst.
Let’s start with her imaginary financial gain for disabled people. In reality, poverty and disability go hand in hand. The poverty rate for working-age people with disabilities is nearly two and a half times higher than that for people without disabilities and two-thirds of those experiencing longer-term poverty are disabled. In addition to income poverty, disabled people are also nearly twice as likely to lack any option for savings in case of an unexpected emergency. 70 percent of individuals with disabilities responded that they “certainly” or “probably” could not come up with $2,000 to meet an unexpected expense, compared to 37 percent of individuals without disabilities.
The “Excuse for Avoidance (eg. of unwanted sexual attentions)” she has fabricated here is particularly heinous when disabled people (of all genders) are the victims of sexual assaults at rates more than seven times those for people without disabilities. It’s one of the highest rates of sexual assault of any group in America, with 83% of disabled women reporting a sexual assault history.
The “Social Mystique or Importance” that Turner-Stokes offers as a potential gain with disability is another broadly fictional concept when discrimination, hate crimes, rejection, and societal erasure is the actual documented experience of so many disabled people.
It’s time for accountability.
NICE must be confronted about this choice to repeat past mistakes, and held to task by both the disability community, the medical community, and the world at large as COVID-19 continues to tear deeper and more permanent marks into our society. In a future that is going to include more disabled people, it’s time to demand accountability for ableism and bias from our healthcare leaders. No organization that purports to create evidence-based guidelines can include such overtly biased and unprofessional ideas into their midst. The disability community was left to fight alone against bad science in aftermath of the the PACE trial, and it took years to finally be heard. This time, you can help amplify our voices and make sure that history doesn’t repeat itself. Our post-COVID world will have enough recovery to do without adding in more stigma, bias, and erasure of disability.