Trial By Error: A Few Things of Interest I Read This Week

By David Tuller, DrPH

Miriam Tucker on Long Covid in WebMd

The always reliable Miriam Tucker, who has frequently covered ME/CFS for Medscape and other publications, has just written a piece for WebMD called “Long COVID Mimics Other Post-Viral Conditions.” The article covers some of the similarities in symptoms between long Covid and ME/CFS and highlights advocacy efforts to ensure that research initiatives targeting long Covid also include ME/CFS. The article further explores how the emergence of long Covid has impacted how the medical world views ME/CFS.

Here’s an excerpt: 

“’This for all the world looks like ME/CFS. We think they are frighteningly similar, if not identical,’ says David M. Systrom, MD, a pulmonary and critical care medicine specialist at Brigham and Women’s Hospital in Boston, who studies people with both diagnoses…

“Systrom says he has ‘absolutely’ seen a change in attitude among fellow doctors who had been skeptical of ME/CFS as a ‘real’ illness because there’s no test for it.

“’I’m very keenly aware of a large group of health care professionals who really had not bought into the concept of ME/CFS as a real disease who have had an epiphany of sorts with long COVID and now, in a backwards way, have applied that same thinking to their very same patients with ME/CFS,’ he says.”


New York Times columnist calls for National Institute of Postviral Conditions

New York Times columnist Zeynep Tufecki’s most recent piece is called “If You’re Suffering After Being Sick With Covid, It’s Not Just In Your Head.” This lengthy, high-profile article made a forceful case for what everyone reading this blog knows—that the term long Covid includes a huge range of people suffering from pathophysiological dysfunctions and not from primary psychiatric disorders. It also analyzes why research progress has been so slow.

Moreover, it highlights ME/CFS and focuses attention squarely on the paucity of knowledge about post-viral conditions in general, calling for “a National Institute for Postviral Conditions, similar to the National Cancer Institute, to oversee and integrate research.”

Here’s an excerpt:

It wasn’t until the end of the first year of the pandemic that Congress provided $1.2 billion for the National Institutes of Health, which led to a long Covid research initiative called Recover, in February 2021. A year and a half later, there are few treatments and lengthy delays to get into the small number of long Covid clinics. Frontline medical workers don’t have the clinical guidelines they need, and some are still dismissive about the condition.

“Long Covid sufferers who caught the virus early have entered their third year with the condition. Many told me they have lost not just their health but also their jobs and health insurance. They’re running out of savings, treatment options and hope.

“To add to their misery — despite centuries of evidence that viral infections can lead later to terrible debilitating conditions — their travails are often dismissed as fantasy or as unworthy of serious concern.”


Brookings Institute estimates 2-4 million not working due to long Covid

In January, the Brookings Institute published a report about the impact of long Covid on the work force that estimated 1.6 million people were not working because of it. Last week Brookings released a follow-up account based on newly available data, and included recommendations on addressing the issue going forward.

Here’s a peek:

“This June, the Census Bureau finally added four questions about long Covid to its Household Pulse Survey (HPS), giving researchers a better understanding of the condition’s prevalence. This report uses the new data to assess the labor market impact and economic burden of long Covid, and finds that: 

  • Around 16 million working-age Americans (those aged 18 to 65) have long Covid today. 
  • Of those, 2 to 4 million are out of work due to long Covid. 
  • The annual cost of those lost wages alone is around $170 billion a year (and potentially as high as $230 billion). 

“These impacts stand to worsen over time if the U.S. does not take the necessary policy actions. With that in mind, the final section of this report identifies five critical interventions to mitigate both the economic costs and household financial impact of long Covid.” 

The article received a lot of media attention but also some pushback about its methodology. Whatever the actual numbers, however, it cannot be disputed that long Covid is having, and will continue to have, a major impact on the employment market.

3 thoughts on “Trial By Error: A Few Things of Interest I Read This Week”

  1. And yet if you search for Long Covid on reddit,com/r/medicine or /r/juniordoctorsUK you’ll find nothing but dismissal for it and the related conditions. 95% of commenters on those subs consider all sufferers malingers. So while government and the federal reserve and news, people and researchers are all convinced there is a really serious condition you have the entire set of doctors complaining about patients as mentally ill. Not many of them has had an ephimary yet and you see that on the amount of people in /r/covidlonghaulers that have had terrible medical interactions.

    We need something drastically done about doctors that refuse to accept their patients are ill for this situation to have a chance of being resolved, there is a reason we only have estimates for sufferers not nice statistics from healthcare and its not because patients aren’t presenting their problems to their doctors.

  2. I want and can completely cure the coronavirus

    I have a very strong acquired t-cell immunity. Purposefully strengthen the immune system for more than 7 years. For 7 years, lymphocytes were from 44 to 56%. Immunity is constantly inflated due to two rare internal diseases diabetes insipidus and olivopontoceribral degeneration with cerebellar atrophy.
    As proof of my immunity, I can provide 5 immunograms in 3 immunograms in the results, lymphocytes and t cells are significantly exceeded in abs.number / ml, made at the Almetyevsk AIDS Center. There was no such calculation in 2 immunograms, I did it in a private laboratory of KDL. And a dozen more blood tests made according to the leukoformula lymphocytes above normal neutrophils below normal, made in a private laboratory Invitro. And another 100 pieces of general blood tests made according to the leuco formula simplified analysis there lymphocytes are all higher lymphocytes are higher than normal if the norm is from 18 to 37% made in the laboratory of PJSC Tatneft (medical unit).

    I had hepatitis B. In November , before hospitalization , he was tested for AIDS hepatitis in the AIDS center laboratory , the result was negative . In February, before hospitalization, he was tested for AIDS hepatitis in the same place, antibodies to hepatitis B were found, after 2 weeks he was tested for hepatitis, even there were no traces left. I was tested in the invitro laboratory and for reliability I was tested for AIDS hepatitis in the laboratory, the result is the same there. Got infected by accident. I had coronavirus 2 times. 1 time in August for 4 days in super light form. On July 26, the deputy heads were healthy.the doctor of the polyclinic of PJSC Tatneft will prove. On August 1, I was at his reception again, I looked sick and he advised me to go home. I was ill at home with symptoms of coughing, sneezing, runny nose and fever, but I didn’t take any medications. On August 3, he did PCR at the Almetyevsk polyclinic of PJSC Tatneft, whether he is sick or not.On the 4th day, a nurse from the polyclinic came, first she communicated with me in a mask and then she made sure that I was healthy and continued to communicate without a mask. By the way, my mother also got over the coronavirus in a mild form in 10 days, but with the loss of sense of smell, I accidentally learned about 2 infections from doctors, antibodies to the coronavirus spontaneously rose.
    It was 204 and after 1.5 months it became 316
    I need to start producing monoclonal antibodies from my immune cells. Monoclonal antibodies are the strongest weapon against the coronavirus.
    This is a good way to stop the financing of the war by the West and America
    But in order to be able to transfer my monoclonal antibodies to cloning, diabetes insipidus needs to be cured. But some forms of diabetes insipidus are 100% treatable, such as mine.Got sick as a result of a traumatic brain injury
    Due to olivoponoceribral degeneration with cerebellar atrophy, I will die soon.This disease leads to mandatory death.
    Trouble has come, open the gate. An outbreak of an unknown virus in Argentina which I will lay down with one left

  3. There’s something badly wrong with medicine if doctors have to experience a problem for themselves before they can appreciate a disease for what it is and display true empathy towards their patients. Why are they not being taught at medical school to trust their patients and believe what they report? It seems to me that scepticism of and prejudice against patients are entrenched in medicine, and that empathy is usually fake rather than real. I don’t believe that doctors start out this way so I assume that (along with resentment towards their patients - they learn this behaviour at medical school and along the way.

    I suspect that most patients are anxious not to waste the doctor’s time with minor ailments that could resolve of their own accord, that they are all too keen not to be labelled hypochondriacs. Medicine gets it badly wrong if it believes that people who go back about their unexplained symptoms are malingering, attention seeking, catastrophizing or mentally or behaviorally ill/defective in some way. If a patient returns about a problem then that should be seen by the doctor as a key indicator that the problem is real and as a trigger for them to revisit everything with an open mind. It should not be regarded as a reason to dig in with the original opinion and view the patient as being in need of psychotherapy. Doctors need to listen to their patients and TRULY believe, respect and act on what they report, instead of just pretending that they’re sympathetic or empathetic. They should be taught that current medical knowledge is woefully limited and that if their patients’ unexplained symptoms aren’t going away and are impeding their lives that the symptoms will require rigorous investigation and also perhaps scientific input via biomedical research, if a diagnosis doesn’t emerge.

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