Article

Canadian researchers looking into COVID ‘long-haul’ effects

47 Comments
  • Eileen Rankin says:

    Is this study still open to participants?

    I am a 64 year old woman who has had long Covid since contracting it mid-April 2021, three weeks following my first vaccine, which was on March 19, 2021. I had my second vaccine on June 15, 2021, but I have not seen any improvements in my Covid symptoms as has been anecdotally reported by some people with long-Covid.

    I was not hospitalized.

    I was previously very healthy and physically fit. I continue to experience a range of symptoms and have had no improvement since first recovering from the acute phase. I also continue to be off of work but am fortunate to have a lot of banked leave.

    If there is an opportunity to participate in the research, I am very interested.

  • Linda says:

    There is a huge amount of pier reviewed science on Myalgic Encephalomylitis(formerly known as Chronic Fatigue Syndrome), which, in most cases happens after a patient has a virus.
    The overiding symptom in ME/CFS is called “post exertional malaise” , which is debilitating fatigue from normal daily activity, that is unresolved for over 6 months. The science shows changes in brain function, RNA/DNA, slower blood flow from the brain, higher levels of lactic acid and many other chemical changes and physiologocal changes.
    Medical schools and practitioners have boycotted the recognition of this disease, and now that millions of people around the world are experiencing these symptoms, after the COVID virus, the medical world can’t ignore.
    For all those researchers out there, lets not re-invent the wheel. Start with the research that has been done and ignored for many decades. Your patients deserve to be treated by scientists, not politicians that pick and choose what science they want to keep up with.
    When the CDC and WHO and our own Canadian government recognize ME/CFS and yet medical schools in Canada refuse to educate doctors on this servere, permanent disability, and gaslight the patients that are suffering, we must not tolerate this political behavior in our medicine any longer. DO NO HARM.

  • nancy m hebert says:

    i tested positive for covid in january 2021 at first i just had very minor symptoms, runny nose and itchy eyes, but now i can barely walk up my stairs to my bedroom without being out of breath,gets pretty scary somedays, i often wonder when i will be calling 911, tired all the time and yes brain fog. when i was first diagnosed i thought wow this isn’t so bad, i can deal with this but not now. i am female 72 years old

  • Michele Neal says:

    How does one participate in this study?
    I nursed 3 children with covid. The eldest is dealing with long haul symptoms at this point. Have had some tests run, positive results, but still dealing with a bunch of symptoms months later, he had bilateral pneumonia and mild pericardial effusion at the height of his illness

  • Ruby Kusano says:

    How does one become a part of a Post Covid study. I was positive for Covid in October and continue to experience old and new symptoms. It is becoming quite tiresome and depressing.

  • Luba Janakijevski says:

    I need to add my mother to this clinical list. Please let me know how to go about it.

  • Ron says:

    I believe i was infected in march 20/20, Symptoms of congestion, fatigue, brain fog, aniety, i didnt have direct contact so couldnt test. Symtoms change regularily, included exstreme sore teeth to the point of wanting to pull them all out. Froze lip for days and exstreme sesitivity to presure changes in weather. Rash on feet around ankles. Write down directions as i wont remember even where i was going. Making one trip upstairs was enough to go back to bed. Still suffer fatigue daily. Have tried my best to work but struggle daily, to the point of staying home now.

  • Lori says:

    I was diagnosed with Covid19 on Easter weekend and I still feel crappy. Headaches, burning eyes, severe fatigue( limbs feel heavy), brain fog like crazy my head feels like it’s lost in a cloud and loss of taster and smell currently it comes and goes.
    Attempting to work but each day feels like a new job to learn. ( ps I’ve worked in my field for 20+years, health care field). Rapid heart beat.
    I feel better in the morning and decline through out the day.

  • Paul Davie says:

    I would be interested in the study of long term covid. I was hospitalized with PE and covid 19 pneumonia. On Jan 5. I’m still not better.

  • dale says:

    Thank you for the article and the work you are doing.
    I feel like ripping my body out of my skin and throwing it away.
    I was exposed March 12 2020 and have been getting worse with some bad symptoms in Oct 2020 and Feb of 2021. They all fit the Covid and Covid Long Haul diagnoses but no one can confirm it. extreme fatigue, brain fog, dizziness, right side headaches, fluctuating eyesight, shortness of breath, bumping off walls, hair falling out, itchy hair line, hands and legs, shudder shakes , dry cough, sore throat when talking over 10 minutes ( phone) even down to dry skin at the top of my toes, I also had an extreme wet nose cold and no voice for 24 hours that woke me up at 3:30 am.
    I would like to be part of your group and could go to Barrie Ont for testing, I can not get to Toronto.
    I was in hospital in Feb 2021 but they did not have a covid test. 8 hours of entry level testing showed all was in the normal range. I did get tested -negative – in Feb at the health centre in Midland in Feb. I feel so debilitated, useless and depressed. I am 75 years old, have life long asthma and mild arthritis. I have not had the vaccine yet.

  • Chantal Villeneuve says:

    I was hospitalized for covid 19 last november and I am still unable to work or do my daily activities. Brain fog, headaches, extreme fatigue. Is it possible to give me more information. I leave in Orléans On.

  • Sharon says:

    I was hospitalized for covid 19
    I am suffering daily 2 months after ..I need help to understand what is happening to me
    Is there a number to call

  • Karen Serwatkewich says:

    My covid test came back positive last year March 21 ! I am still suffering with the twitches all over my body they seem to move around ! One week it’s me legs then my arms , right now it’s in my face! I have brain fog which comes more in the evening and I have constant pain in my feet ! I went through many stages of things happening to my body! I’m still fatigue and if I talk to long in the day , I start getting shortness of breath and coughing ! I sure hope one year their can be answers !!

  • Wendy Camp says:

    This is very important initiative. Can you tell us if there is a study based in Ottawa?

  • Rosalie says:

    I am a ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) sufferer which seemed to have been triggered by a viral infection. The symptoms of Long-haulers sound very similar to those of ME/CFS. I feel that research into Long-haulers after a COVID-19 infection should also look at ME/CFS to attain invaluable information into post-viral long-term illness. I believe these Long-haulers are suffering from ME/CFS which was triggered by COVID-19. To not consider ME/CFS in Long-haulers research seems like a huge over-sight in my opinion. I am not sure if ME/CFS is being considered in this research, but I truly hope it is being investigated as part of this research and future research in this area.

    Thank you for your article and an outlet for my opinion.

  • Monique says:

    Excellent article!
    Are there any studies being done in Ottawa?

    My husband and I are both long haulers (this what our doctor has advised us).
    We never had a positive covid test but have been diagnosed as having covid by 3 physicians now. My husband now has atelectasis.

    We would love to go through some testing to help us figure out what is causing all these symptoms now including the following, which are not present all the time: headaches, sinus pain, chest pain, coughing, shortness of breath, fatigue.

  • Jared O'meara says:

    Hi do you know if they are still looking for people to join the study? My wife and I had covid in March 2020, and were in isolation for about 2 months before they cleared us to leave our house.
    My wife recovered fine it seems and has no lasting effects, but I struggle to stay awake, suffer from on going chest pains, I miss work struggling to stay awake and dealing with the endless fatigue.
    On Monday I went into the hospital with heart attack like symptoms at the age of 30.
    Anything you can tell me would be appreciated

    • Devon Johnson says:

      Hi Jared!
      I am a producer at CTV’s Your Morning – Canada’s National Morning Show. On March 11, we are having a 1 year COVID special and would love for you and your wife to come on to talk about your experience.

      Can you please email me at Devon.Johnson@bellmedia.ca

      thank you!!

  • Shelly Botnick says:

    Hi, Dr, Cheung,
    Is the CANOV trial still accruing patients?
    If not, is there anything else you know about for long hauler COVID patients?

    Thank you,
    Shelly Botnick, PA, ECHO Jewish Institute for Health

  • Troy Hodgson says:

    I feel I had covid early March then my wife got it we have had symptoms since then they seem to come and go. My main symptoms are chest pain and twitching body and tension. I have had blood test and heart ecg but nothing ever shows. Every week I get little better but going on 11mo this now. Drs dont seem to help have you any suggestions thanks

  • Dawn Hentz says:

    I would love to join your study. I am 11 months out and still suffering many side effects How can I help?

  • Dianne. Labelle says:

    Covid + dec 29 2020
    Still dealing with post Covid
    Was at ER 2X but not hospitalized
    Would be interested in participating in any studies

  • Dianne Labelle says:

    Great article. I live in the Niagara region Ontario 59 yr female. Chronic illness prior to Covid. Chronic fatigue. Fibromyalgia. TMJ. Extreme hypermobility. Costochronditis. IBS

    I was Covid + dec 20. I am post Covid healing. I wish drs took me seriously instead of dismissing me
    Dianne Labelle

  • Manfred Bienefeld says:

    I am a 79 year old male and I tested Covid positive on September 28th after having just finished the second (of nine) rounds of chemotherapy for multiple myeloma, which was diagnosed at the end of August. I then spent 16 days in hospital with relatively mild symptoms – mostly chronic diarrhea, weight loss (45 lbs) and severe breathlessness – from where I was released on October 13th. Now I am about to start my fifth round of chemo but, even though I have made good progress on most fronts, my breathlessness remains chronic and it is my oncologist’s opinion that this must be a Covid longhaul problem since it is not one of the side-effects normally associated with my particular chemo treatment (Velcade or bartizomib). I would therefore like to volunteer for Dr. Cheung and Dr. Herridge’s study.

  • Kimberly clarke says:

    Hi Joan, did you happen to figure out how to join this research,? Long hauler here since April.

  • Rad says:

    My maternal family in Boston MA went through the virus of 1917-20: none died. In my early teens, (1950’s) I had “Asian” flu. I was a weak often depressed puny kid” and was that for nearly a year after the 1950’s flu.

    In Jamaica on holiday:1970’s, I caught Dengue Fever. I was hospitalized in Canada and after recovery had intermittent periods of fatigue etc, for almost a year.

    2010: age 68 DVT and pulmonary embolism. Following that I was prescribed blood thinner med. Until recently took 2mg apixaban (Eliquis) twice a day.

    I have copd/asthma likely from smoking between the years 1965 and 2000. Not normally bothered by either until late summer. Today my peak flow reading is just over 400.

    I am male, 5’10. and weigh, depending on the season, between 156 – 170lbs. I live within the national capital region of Canada. I do not have diabetes.

    First week of March 2020: Wowie! worst case of gastric upset in years. I have arthritis which is normally an annoyance, but that week t developed into the Pure Hell Stage.
    I lost all sense or smell and taste.
    I had an unending severe headache but only on the right half of my head.
    Next came the shortness of breath and the the annoying continual dry cough.

    By this time the first Coronavirus testing criteria were being posted. I had three or four of the qualifications but I had no fever, in fact just the opposite – on the Fahrenheit scale I was continually between 92 and 94F. And worse was I felt cold…..not skin cold to the touch but as though I was frozen inside.

    The morning I woke up with a nosebleed I went off to the local medical clinic. Diagnosis: I was coming down with an upper respiratory infection . e.g., a cold. Couldn’t possible be coronavirus.
    But this ‘cold’ never became a cold. It felt more as a remembered onset of a viral infection.

    Because I did not have a fever I was not qualified to be tested. Because I still live in my own home. not in a long-term care residence, I couldn’t be tested. And what was the hardest to accept was because I was old and “I wasn’t essential.”

    In the weeks that followed some of the ‘flu’ issues stopped, But, not the cough or the fatigue or the 24-hour headache. Because of meds I take I cannot take aspirin or advil-type tablets. Tylenol? No effect.

    As I recall it was at the end of the second week of March that went through a week or so of sudden new issues. Often while chatting I would suddenly lose all memory of what I was speaking about, or couldn’t remember why I had left the room and gone into another.

    Third week of March: the hospitals here had not yet been shut down to the public. I went for my quarterly appointment. The doctor said I appeared to be symptomatic. I and my spouse went into 14 days voluntary quarantine.

    Beginning of April: sometimes lasting only long enough to be noticed; l began to have spasms in my left hand. My fingers, without me willing it to happen, would twist and turn sideways, causing incredible pain. I had no memory at all. My spouse, who up to then had only experienced the issues associated with early onset, started having problems with pulse and blood pressure, when one rose the other fell. BP normally under control between 120 and 140 ranged between 70 to 180+. Pulse would fall into the 46 to 92 range. Adjusting the meds seemed to help.

    End of April: we both got tested: negative.
    May and June, I, coughing, sleep some days 10 hours, the next day not at all, then the next day fall suddenly into a deep sound sleep just sitting in chair.

    By July we were having what we called “Good Days” and ‘Bad days.” By then seeing a doctor anywhere was an impossibility.

    In August we began to feel the most of the initial symptoms had passed. But still, we both were tested again: negative. And so the see-saw of Good Days-Bad Days had settled as a routine, except that occasionally my vision would suddenly fog, or perhaps I lost what was doing or saying. It was about this time that I saw first read the the term “long haulers” ,

    Back in March, I was having severe joint and hip-groin pains. I was scheduled for a bone scan and a biopsy.

    Miid-November. 2020. The tests were scheduled. The biopsy was a problem: to have it I had to stop taking the apixaban/ Eliquis.
    The biopsy was to be a Friday; I stopped the apixaban meds Tuesday morning. In the wee hours of Wednesday I woke up with burning terrible chest pain which lasted for hours then suddenly stopped. By Friday morning I was feeling the same as I had the first weeks of March. After such a long wait I did not dare to postpone the biopsy. I had the biopsy in the morning. Friday afternoon – for the first time – I had fever. I had trouble forming words. Next morning I went to the covid clinic for a third test. The doctor on duty examined me, and told me I was in critical condition, did not tell me from what. I entered hospital Tuesday morning and was tested for the 4th time. A few hours later I was told both the last two tests were negative,

    For next 48 hours I was in the ICU. I believe I was thoroughly examined. Morning of 3rd day: results of the tests. I had no sign of thrombosis, and instead of one embolism (dating back to 2010) I had two.
    From what I recall the doctor proposed that I likely had covid, and agreed that I was likely having long haul after effects.
    He proposed that what had stopped me from developing serious covid, was most likely the apixaban. Before I left the hospital my dose was increased from 2mg to 5mg twice a day. Three weeks later the cough, continual since March, stopped. Many of other bothersome things such as the brain fog have also stopped. But two days ago I began to cough every so often…oh-oh is it “here we go again?”

    There is my experience. I have still have good days and bad days. They still seem to shift from one stage to the other without warning. But the bad days are getting further and further apart.

    The reason I included all the virus info I wrote at the beginning , in my experience there was always a flashback’ or ‘relapse’ period which over time became further apart and eventually simply went away. Is it possible that this is what is happening to “Long Haulers”?

    Hope all the above helps

  • Kathy says:

    Thank you Maeve for your interesting article. I have read many articles about Covid 19 Long Hauler Syndrome and understand the frustration over multiple symptoms and a lack of medical support. I have not had Covid 19 but have had the same long hauler symptoms, following a chemical exposure at work and treatment with corticosteroids. My health started to improve when a respirologist suggested that I have Central Sensitization Syndrome and I started to research and practice solutions for down-regulating the nervous system and reducing inflammation. I learned that Central Sensitization is usually associated with chronic pain or trauma, and is also triggered by illness or injury, which can send danger signals to the body and mind, altering the immune balance, creating pain and inflammation. I would recommend researching vagus nerve activation, Polyvagal Theory, Dr. Sletten from the Mayo Clinic’s Chronic Pain Program, David Butler and Lorimer Moseley, Australian chronic pain researchers, and David Berceli who developed Trauma Releasing Exercises.
    I have found that the solution lies in creating a safe and peaceful physical, social and spiritual environment, accepting that it will be a long, gradual process. I have found that recovery is impaired by stressors and trying to continue with all the activities that could be done before at work and home. I would recommend an extended medical leave from work because trying to push through the fatigue and stress will impair recovery.
    I have had success with an anti-inflammatory, plant-based diet because it reduces inflammation in the gut and prevents reflux and lung inflammation at night. I have used graded exercise, building up to natural intervals to improve endurance as well as lung and cardio capacity. At the beginning this might be a 10 minute walk to the mailbox. Massage, acupuncture, yoga and deep breathing exercises activate the vagus nerve. Meditation and guided visualizations that focus on health will calm the nervous system and improve brain function. I would highly recommend a Mindfulness Based Stress Reduction course or a Mindfulness Based Chronic Pain Reduction course and a meditation practice. Look for counselors who specialize in Chronic Pain, PTSD, Polyvagal Theory and art therapy. Look for doctors who specialize in Chronic Fatigue Syndrome, Fibromyalgia, and the immune system. Look for people and experiences that make you feel safe, create positive images of health, exercise, sleep, laugh and be kind to yourself.

  • C. DOUCET says:

    Wonderful helpful article for Canadians!

  • Dar says:

    I am a long hauler, having spent almost two months in hospital, a month on a ventilator. How do I participate in this study and are you aware of any long haulers post covid clinics? My go has not been helpful at all. I was discharged from hospital in May but remain symptomatic. Any help you can provide me with would be most appreciated..

    Darlene

    dteslia@hotmail.com
    705 874-2028

  • Christine Lennox says:

    Hi Jean,

    My name is Christine, I’m wondering if you found any answers to getting further help.
    I was finally diagnosed with Covid-19 back in November after 3 testings, the doctor in emerg told me im suffering from anxiety and sent ne home. Since then i have lost my taste, smell and excruciating pain in my legs and back, lately its been brain fog, tremors, legs feel like jello, una le to multi task or catch my breath from very little movement. I’m in need of someone in the medical world to reassure me that I’m not losing my mind. Lol.
    Appreciate any help
    Christine Lennox Psw

  • al s says:

    I am just finishing my quarenteen from a positive Covid test on January 13th 2021.
    I was very fortunate to only have very mild cold like symptoms . not sure if I would be of any help or not. 54 year old male with HBP and pre-diabetes both controlled with meds.

  • Jessie Marshall says:

    Not sure if I qualify for your program, but would certainly like to help if I can. I’m 73 with COPD on Bi Pap overnight. Type 2 Diabetes, High BP and I’m Obese. I tested positive for Covid Dec 17, tested on the 15 th. Symptoms since the 13th.
    Cough, loss of taste, weak, extremely tired, diarrhea, a little more shortness of breath then usual. Light headed, and dizzy.
    Dept of Health took me out of self isolation Dec. 26
    I now have a few good days, then right out of the blue I have a day or two that I’m so tired, I just sleep. I’m still coughing.
    So if I can be of any help, I am willing.
    Thank you
    Jessie Marshall.

  • Greg Prymack says:

    How do I join this Canadian Study.

  • Greg Prymack says:

    I would be interested in joining your group. I strongly believe I am
    A long hauler from back in March. I have never been tested positive but have been to the hospital 3 times due to breathing issues. Emergency doctor suggested the long haulers. How do I join. Would love to learn more about it.

  • Cynthia says:

    I identify as a long hauler , how can I get involved with a research study

  • Janet says:

    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 .

    Regards,
    Janet PGM

  • Winston says:

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

  • Suzanne Wiebe says:

    Please add me to your mailing list.

  • Susie Goulding says:

    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

    https://www.facebook.com/groups/920314451799658/?ref=share
    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

  • Teena says:

    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’.

  • Jean Miller says:

    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

  • Mike Fraumeni says:

    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.” …

    https://www.virology.ws/2020/09/10/trial-by-error-some-stuff-about-long-covid-bmj-and-me/

    • Doug McFarlane says:

      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.

Author

Maeve Gamble

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Maeve Gamble is a physician specializing in rheumatology and a current fellow in the Dalla Lana Global Journalism program.

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