Canadian researchers looking into COVID ‘long-haul’ effects

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  1. Mike Fraumeni

    It will be interesting to see if the COVID-19 “long haulers” experience some of the same sorts of disrespect as ME/CFS sufferers, if you will, as Dr. David Tuller mentions in his blog:

    “It is clear that there will be much grappling going forward over the similarities and differences between long-Covid and ME (or CFS, or ME/CFS, or whatever this illness or cluster of illnesses is being called). The two entities overlap in some ways, but no one should conflate them.” …

    • Doug McFarlane

      They already have, Mike.

      This study doesn’t include a longhauler cohort in whom the disease wasn’t detected even through repeated testing, although symptoms were present as described by patients and largely dismissed by an arrogant medical community as “NOS” or worse as “in their mind.”

      So, is this study an attempt to limit what longhauler means by exclusion of a significant cohort, or is it an attempt to validate dismissive doctorings or inconsistent testings?

      I fear the outcome of any search for meaning that begins behind the 8-ball of recognitions by more inclusive medical and scientific authorities.

      Excluding this cohort from any meaning of longhauler continues medical and scientific marginalizations of those patients left to help themselves.

    • Janet

      Hello; I tested positive for Covid 19 December 18 2020 , but self-isolated myself December 11 2020 because of symptoms I had that did not appear to be flu or common cold etc. I had no sense of smell yet I was breathing perfectly fine through my nose. No taste buds either.
      Everyone is different when experiencing this disease. For me it felt lie the Flu with a fever a dry cough , fatigue and body aches and pains. As mentioned, it was the lack smell or taste.
      However, the one symptom I had was worse then all of them. My lack of oxygen. Walking downstairs then upstairs again to lie down was a chore. My face would turn red, I would sweat and feel like I ran a marathon .
      I am overweight but not obese, I do not have diabetes or high blood pressure etc…..
      Walking my dog was enjoyable, now its a dreaded chore. It is Jan 13/21 as I am posting this I still have a hard time with my recovery . Over a month now…..

      On that note , I am fully aware of what I am going through and I’m sure that science will figure out the configuration of this illness and be able to give us the cure for it. For now I am just Staying Home, monitoring myself daily and listening to the recommendations from our Provincial Gov and Public Health.

      Help is on the way for people we must have Hope .

      Janet PGM

  2. Jean Miller

    How are we able to join this research project as a Canadian post Covid patient? There are a number of us from Canada who have joined thousands in the US via the Survivor Corps Facebook group feeling like there was nothing for us in Canada. I would appreciate a response as I know others who would also be interested in follow up
    Thank you and your research project is much appreciated!
    Jean Miller RN, BScN, NP

  3. Teena

    How does a person sign up to be part of the long-haul study?

    My family doctor is sympathetic, but I am not getting any advice or direction except to ‘wait it out’.

  4. Susie Goulding

    I’m a Covid long hauler in Ontario. On June 21 I created a Canadian Support group which has surged to over 10 800 members and has become Canada’s largest online support for Long-Haulers.

    COVID Long-Haulers Support Group Canada
    l contracted covid on March 21 before testing was available to the general public. After suffering through the acute stages of the virus and not getting clear professional medical advice of what to do about my symptoms I quickly realized I was on my own…so to speak. I had first hand street level experience of the virus that most medical professionals didn’t have and needed to speak with other covid Survivors to see how they were managing themselves. I created a platform for covid survivors to be able to align, come together to share stories, compare symptoms and any medical articles and advice they had gathered that would help us get an understanding of what we needed to do to fight this fight. 10 months into my recovery I’m still dealing with the many debilitating symptoms. Recovery for myself and thousands of Canadians has far surpassed the 6 months mark. In short if you are suffering from covid or have family or loved ones who are please join our support group. We are a safe judgement free platform for people to speak at will of their experiences of covid 19

  5. Winston

    How does one enroll in Cancov research Ontario? Thanks, great article.

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