When I saw that Chandra Pasma was interviewed by media outlets, and that she lead the push for health officials to acknowledge and act upon patients still sick with COVID, I knew I needed to reach out to her and find out her experience with COVID and the health care system.
While the medical system has long known, but rarely acknowledged, that some people don’t recover from viral infections, and instead continue to experience a wide range of neurological symptoms, the COVID pandemic - and patient advocates like Chandra - are forcing health care systems to address the research, treatment and care of long haul COVID patients, and by extension, the millions of others who previously got sick with ‘the flu’, but remained sick -- sometimes so ill, they are house and bed bound, requiring total personal support.
You may be asking yourself: if medicine has known for a long time some people don’t recover from viral infections, why haven’t they been researching it?
Mostly it is because there is a wide spread and embedded medical error in the medical system -- it is so embedded, most physicians are blind to it. Just like fish don’t see water.
This institutional error is the physician’s ingrained habit of telling patients with physical symptoms with no obvious cause, that they are ‘all in your head’. This is known informally in patient circles as gaslighting. It is more formally called medical harm. And it is a pandemic unto itself.
But with millions of people infected with COVID, and early reports that at least 1 in 10 are not recovering, it will be near impossible for physicians to dismiss long haul COVID patients’ symptoms as ‘all in your head’.
The cruel irony is that for at least 3 decades, biological research on people with post viral illnesses, like MEcfs and SARS, had been mostly non-existent. And we can thank psychiatry, the least reputable division of medicine, for impeding biological research funding, and instead, embedding medical error in the form of gaslighting, in health care systems around the world.
So this may be one of the ‘good’ things that come out of the COVID pandemic: stopping the medical harm from physicians and psychiatrists of patients who don’t recover from viral infections.
Connect with Chandra Pasma on twitter: @ChandraPasma
Long Covid Facebook:
COVID Long Haulers Support Group Canada
COVID Long Haulers Canada:
Body Politic - COVID support group: https://www.wearebodypolitic.com/covid19
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Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
Thanks to research and access to medications, HIV is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
Counseling / Research
I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.
I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.
Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.
My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.