Opinion

‘Cure sometimes, treat often, comfort always’: The importance of support networks

I have an exceedingly rare disease. In September, I was diagnosed with Chronic Active Epstein-Barr Virus (CAEBV). It is a rare complication of the Epstein-Barr Virus, well known for its most common symptom, mononucleosis (colloquially referred to as mono). I’m told by rare disease researchers that the occurrence of CAEBV is rarer than one in 1 million. It is a chronic, progressive disease with a high mortality rate.

Though the immediate prognosis is better than some illnesses – I have a 60 per cent chance at surviving five years as opposed to surviving just a few months as can be the case with some cancers – the end result is that this disease will end my life early. I’m 35 years old and there is no sound curative treatment.

All of the medical professionals I have encountered throughout my diagnostic journey have been incredibly kind, knowledgeable, open and willing to take the extra time to settle any questions I may have had – at least as best they could. The doctors, nurses, receptionists, clerks and technicians have all been exceptional. On some level the journey has been fascinating as modern medicine truly is astonishing. However, a significant piece is missing: How can medical professionals best care for an untreatable patient?

So rare is my illness that there is no known, common path of progression among the few diagnosed globally. No typical path of symptomatic progression, only a common fatal outcome. There is no support group or network to rely on. There are medical publications that speak to the limitations of potential treatments on the disease but not to the likely course the disease may take.

The path and timeline of events to befall me is a vast unknown, harder to process than the reality of the diagnosis itself. Research focuses on the medicine, but not the human.

The crux of my main struggle is how to plan for a future where so much of it is unknown? Do I have two years, five years, or maybe seven remaining? No one knows. When is the right time to take leave from work and focus on myself, family and friends? There is no calculation to help determine that.

Young and ambitious, my wife and I have put ourselves and our careers first – we have both been very fortunate and have excelled. Children have always been part of our dream but what now if my future is limited? Even if I have years left, what will the quality of life during those years be? At the moment, medicine is unable to guide me through many of these gaps. A support network of fellow sufferers, though not able to precisely be applied to my own personal situation, could at least offer examples of how people who have come before me have worked through these issues. At the moment I simply strive forward, one day at a time, with no answer to such questions.

I thrive on data, I always have. The more information I can gather about a situation, the better. Facing a chronic, progressive illness, I am no less information hungry. The problem is, it just doesn’t exist – or at least not that I can find.

I have started tracking my vitals at home in an attempt to try to anticipate “bad days” versus good. Daily, without fail I log my temperature. By chance, prior to the onset of symptoms earlier in the year I began wearing a fitness tracker. The device tracks, among other things, heart rate, respiration rate, sleeping heart rate, oxygen saturation and heart rate variability (or HRV). I log all of this information daily, part of my quest to learn and anticipate my future.

Indeed, there is one measurement that has had some reliability in allowing me to potentially forecast a bad day, heart rate variability. A rapid decline in this metric in the past has been an accurate predictor of a bad day or series of bad days, though I generally know the moment I awake in the morning what kind of day I will be facing, without having to view the data.

I am not alone in this scenario. In fact, these days I have ample company in the category of unusual diagnosis with an unknown progression. The emergence of COVID-19 has been a global lesson in how to deal with a novel disease that induces an uncertain future. Indeed, you may contract COVID-19 and be completely asymptomatic. However, you may contract the virus and go through a terrifying sequence of symptoms, possibly requiring hospitalization. For many, isolation, whether out of fear or public health measures, is a reality. Some who fall ill are forced to battle the disease from home, alone and without immediate medical supervision, feeling symptoms worsen and fearing the worst outcome.

How can the medical profession help, encourage and support those with too rare or too new of a disease that mass-medicine has not yet had the time or resources to focus on the problem?

The professionals who make up our health networks, hospitals and primary care facilities are nothing short of amazing and do their best each day to improve the quality of life for their patients. But there are instances where medicine does not yet have a complete answer for a situation. Then what?

By their nature, rare diseases or novel viruses are difficult to diagnose and to predict because they are indeed just that – rare, or new. However, there is a great commonality between them: each disease has a patient, a person; someone who can offer a perspective to others fighting the same or similar illness; someone who potentially has ample first-hand experience living through a prognosis that could benefit someone else. In a strange way, if I could share my experience with someone and help eliminate the gaps or missing puzzle pieces for them, that would not only help them but me, too. There could be some good to come from a rare diagnosis, rather than decline, uncertainty and a lifespan ended early. I would feel genuinely useful, regardless of whether the good days outnumber the bad.

Medical professionals cannot be available to every patient 24 hours a day, seven days a week. But, networks of likeminded, or in this case, like-symptomed or diagnosed people could be. A reliable, secure network where general information can be shared, and where people going through similar situations can encourage and comfort one another, can have enormous positive impacts. For those suffering with a chronic disease, or otherwise, the simple knowledge that you are not confronting disease alone can add hope, but also strengthen a burdened healthcare system.

For a COVID-19 sufferer who is isolated at home, having a network or simply a single like-diagnosed person to reach out to could mean the difference between panic or a more considered approach to a new symptom. For someone with a rare disease, a connection with a similarly diagnosed patient, or a patient undergoing a similar situation can be a guiding light – a kind of medical sponsor of sorts, not unlike the structure of support groups dealing with addiction.

I find myself in the unique position of being both an “interesting medical case” yet one that has been understudied to date. A medical case for which answers exist as to what does not work for treatment but for which answers do not exist for the patient experience. I might be dying but I still have life to live. What will it be like? More than willing to take part in tests to discover more about CAEBV, I am unable to find current research studies on the issue within Canada. I am willing to be a support for others with the same diagnosis but I am unable to find individuals who are still surviving and who have officially been diagnosed in order to offer comfort and friendship.

There is a famous line attributed to Edward Trudeau and related to health professionals, “cure sometimes, treat often, comfort always.” Where medicine falls short of addressing the full range of a disease, comfort is what remains. Comfort from the medical team but from a reliable support network and yes, other patients, too.

If medical treatment is not an option due to an overwhelmed system in the time of COVID-19 or the limitations of modern medicine mean that “cure sometimes and treat often” may not be options, the promise instead lies within “comfort always,” which can be achieved outside of a hospital room but may in fact be just as medically impactful.

41 Comments
  • Tina Klass says:

    I am new to this site and have chronic EBV but cannot find anyone to diagnose me. Self diagnosis is not the best idea. I see a function MD, a holistic natural-path and specialized nutritionist. I have been on a 1-1/2 supplement protocol and finally am able to start the detox process. Unfortunately I am so so sick! Does anyone living in the US have any thoughts, guidance or recommendations for where I might obtain help? I feel as though my practitioners are not skilled with eradicating/reducing EBV fatigue, brain fog, depression, and nerve pain. I feel like I’m losing my mind when I wake up and feel just as fatigued and disabled as I did the day before. Sending positive thoughts and vibes to all afflicted with Any chronic issue!!! Thank you

  • Jean White says:

    It is good to hear that a CEBV patient received information and emotional support from the medical community. My experience, and the experience of the majority I have connected with on CEBV forums, is very different. I received my diagnosis via patient portal online. My original physician offered no information, no prognosis, no follow-up to track progress of disease. Most of us are forced to be self educated on CEBV through research studies online and forced to seek alternative treatment options because US physicians typically wash their hands of us. I am 72 and diagnosed a year ago. I feel for young patients facing a debilitating disease so early in life.

  • Lisa Roes says:

    I should have said 6 years ago I was diagnosed with CAEBV after doing all the tests in my blood. I get tested every 6 months and my numbers still are off the normal chart and max out the numbers given. But with all that said I can live a pretty good life now that I’m taking this daily.

  • Lisa Roes says:

    Hi everyone,

    This is the best article I have seen that helps with understanding CAEBV. When I was 14 I got mono but it was typical. I was hopitalized and almost lost my spleen. Years of being extremely sick and having tests after tests trying to find the source of my issues. I had liver problems, heart problems and constant fevers along with just feeling tired all the time. I started to treat myself with chinese herbs, infusions and accupuncture. Then 6 years ago I had a really bad relapse. I honestly thought I wouldn’t make it. That my body finally gave up fighting. I started to take monolaurin 3 scoops a day in additon to all my other herbs and blood builder because the illness has turned by blood to water. Monolaurin right now is the only thing that keeps it at bay. If I skip on it or forget my fever is 102 and I’m super sick again. I recommend anyone with CAEBV to take it daily. I hope this helps. We got this!

  • Kari de St. Germain says:

    I was diagnosed with CAEBV when I was 43. I just turned 61. I’m not going down without a fight. Don’t let anyone define what your journey is going to look like for you.

  • Loryn Goodwin says:

    Thank you for sharing. Am also CAEBV. 18 year old female college student. No hope…

  • Cynthia Strayer says:

    Very informative !!

  • Colleen Cummings says:

    Research Dr. Kasia Kines and her book The Epstein Barr Virus Solution.

  • Christi Semmel says:

    Thank you Brent. I have been living with chronic EBV since 1995. I am lucky enough to have been in remission for some of those years and more recently diagnosed with fibromyalgia. Doctors can’t find anything wrong with me. Functional doctors understand, but still have no cure. Currently I am feverishly researching high-dose vitamin D. I am also feeling left out in the dark with my condition. Since my Covid shots (Pfizer), it seems like I am going downhill again. I am afraid that the life I have known the last several years, although in some pain, is over. Now what do I do? Plan for the future? Or live life for today? Anyway, I wish you all the best.

  • Jameson kilpatrick says:

    To anyone who has let google scare them…..you have hope

    In 2009 I got sick, I was only 23 years old. It started with a numbness and tingling in my ear which progressively spread to my scalp and later my hands and left foot. Weeks or months after this initial phase of the onset I started vomiting every single morning right when I woke up, I started noticing my bowel movements change in shape and started having calcification of stools because I wasn’t able to go to the restroom enough. My neck and shoulders were starting to ache and hurt along with anywhere that my body weight had pressure on. BASICALLY I WAS SORE, EXHAUSTED, HAD NUMB HANDS, CERTAIN AREAS OF MY GUT WERE SORE ETC. Long story short after seeing many doctors and several extended stays at hospitals finally 3 years later a doctor found that I had CAEBV. He mentioned things like it can go into remission into your spine and come back out and attack your body(so I figured oh that’s why my neck hurts so bad and my hands are numb) then he told me I needed heart surgery and CAEBV is also known to cause cardiac issues as recent studies show. To keep it short and sweet I was 23, I have now had part of my heart removed at 26 and I am 35 now, I still can’t feel my hands, I’m still in pain every single moment of my life and I have the strength of about a 14 yr old boy. The world is the hardest part about this disease, I have not had a significant other since my diagnosis. And I lost all my friends because my disease isn’t known like cancer or MS. Just like the first 5-6 doctors didn’t believe me neither did my friends. BUT THIS IS NOT A DEATH SENTENCE, manage your diet WELL, hydrate and make sure your vitamins are all on point, get blood work done every year.

    I haven’t felt my hands since 2009, had part of my heart burned out, have a collapsed c spine with permanent muscle spasms, pain in every part of my body, unable to sleep, urinate about 25 times a day and still have bowel movement issues, occasionally have eye issues, and a whole mental boatload of issues to deal with, all in all in thankful to be alive and have the chance to accept Jesus Christ as my savior. GOOD LUCK GUYS

  • Morgan says:

    I was diagnosed with CAEBV about 6 years ago, and I am 40 now…I am only just reading how lethal this illness is, and have no idea how I am still alive this long after. There has never been enough info for me to draw from since the diagnosis, and I have only recently decided to start googling it again to see if I am alone or if I am crazy in wondering how I am still alive, and wondering how long I truly have left. I do not have Drs who I can trust to help me through this. The Dr who diagnosed me, is about an hour drive away and I am not really sure there would be any point in trying to see her now or not. She did help guide me from my death bed when I first had the diagnosis (and lived much closer at the time). I am mostly wanting to connect with others who have managed to survive as long as I have, or to find out what symptoms people who did not survive this long, felt toward the end. How will I know when this disease has its final grip on me? If I have managed 6 years at this point, does that mean I am just cheating death and I will meet my end soon? Or did I find a way to manage it and prolong my life by many many years? I have just sort of figured this is my life because of the fibromyalgia diagnosis I got around the same time.

    I almost never have good days anymore. I am able to get out of bed, and I can do many things still. But I live a very miserable existence just *trying* to have a somewhat normal life. Nobody seems to have sympathy for me. Though I guarantee if it were labeled “cancer” that would change everything. But it is a fairly unknown illness, and no one has sympathy for something they don’t understand, and cannot see with their own eyes.

    Thank you for writing this, and letting the world know we are not alone.

  • Mike says:

    Hello. I also have CAEBV I had mono about 4.5 years ago and have not felt right since. I have been to my primary throughout the years have seen naturopathic doctors and infectious disease. all have turned me away and or not recognized CAEBV other than the naturopath. I have tried acupuncture and various different supplements and it does not seem anything is helping. i recently created a Facebook group https://www.facebook.com/groups/598779817751182/
    for people like us that are searching for not only answers but a cure/treatment as well
    i understand there are much larger groups out there but most seem to have a lot of clutter and tend to get off topic. if you are going through this you are not alone please join my group so we can stay in touch and pass around any ideas, research, and treatment plans.
    Stay positive we will get through this together !!!!!

  • Jaime Green says:

    Hey, finding this article has given my husband and I some hope. I was diagnosed with CAEBV in 2018, when one Dr decided do to the proper labs to test for this. Before then, I had seen MANY other Drs with little to no help. Most of them just thought it was my thyroid (I also suffer from Hashimoto’s Thyroiditis), although a lot of the symptoms are similar, the medication just want cutting it. Dr white, in South Carolina, ran the needed tests, she wasn’t giving up on me. She told me I would need to find a specialist however, that wasn’t so easy. One year later I got married and moved to Maryland, I had to start all over… Why did I move? I originally grew up in MD and my mother who I was taking care of in SC had passed away. Anyway, fast forward a couple years to now, I saw my PCP and explained my situation, she ran labs and referred me to a specialist at John’s Hopkins medical center. At this point I had high hopes (I heard many great things about them) but once they received my paperwork and labs, they sadly turned me down, the assistant that I had spoken with said “they didn’t give a reason, it was just a yes or no about accepting your case” so now after MONTHS of searching, I’m back at square one.. just yesterday, 7/13/21, I had called 7 centers that specialize in infectious disease, they are either not seeing new patients, or don’t specialize in CAEBV but only in Hepatitis or HIV. I don’t know what else to do! My husband and I saw this link and have hope, we won’t give up!

    • Christi Semmel says:

      What kind of doctor diagnosed you? What kind of test did they run? I need help. Prayers for you

  • Nicole says:

    After a year of multiple doctors and numerous tests I have been diagnosed with CAEBV and CFS. I went to a naturopath for CFS and he ran the EBV panel just to see since it had been a year since the only other time it was ran. Crazy that none of the other doctors I went to trying to figure out what was wrong thought to do the same. They all knew I had a “flare-up,” but didn’t think to check for CAEBV. I’m confused by all the conflicting data online. I read about the mortality rate and then the naturopath says I just need to take this herbal remedy for a few months and it will wipe it out completely. Yet he also says I need to go on SSI disability. I’ve never been one for herbs and such, so I’m skeptical. But I’m two weeks in and willing to give it a try. If anyone is interested the website to order it is http://www.root2routebotanicals.com. The name is antiviral compound- EBV. It tastes horrendous, but watered down it isn’t so bad. Definitely talk to a doctor first as it can cause complications with other drugs. For example, I’m on Cymbalta for pain management and the St. John’s Wart may cause suicidal ideation with that combination. I’ve been told if that happens I can switch to Lomatium dissectum tincture found on the same website.

  • Shirley says:

    I have CAEBV, l was diagnosed at the age of 19. I have multiple blood tests that say it is active. I am now almost 50 years old. I have it for 30 years that l know of.

    • Shirley Kidman says:

      I also live in Ontario Canada. I not sure what information that you need for this. But l can get my doctors file. I had the same doctor for about 25 years. He retired about a year ago. But the first blood test was done in the same doctor office by a different doctor. I have about 10 years of blood tests. I had it done from the ages of 27 to about the age 37. I would really like to be considered for this please. Thank you

  • tom hennessy says:

    This is a simple description of the immune system at work, in the mosquito and alligator, which are the same as in humans, and how, viruses are stopped by the immune system, but ONLY works when the iron levels are exceptionally low.
    Alligators, mosquitos and humans, all of us try to remove iron away from pathogens.
    “Iron withholding as an innate immune mechanism in the American alligator”
    “Mosquitoes respond to viral infection, by inducing expression of heavy chain ferritin, which sequesters available iron, reducing its availability to virus infected cells.”
    “antibacterial and antifungal properties of blood and other tissue fluids cannot be maintained unless there are exceptionally low levels of available iron.”
    Our immune system can stop a virus, with its lactoferrin, but only if the iron levels are low.
    “Low iron-saturated LF effectively combats bacteria and fungi, acting in a bacteriostatic and fungistatic way. The degree of iron saturation also influences antiviral activity of LF. ”
    This illustrates the increased iron found in meat-eaters.
    “It seems that reduced insulin sensitivity in meat-eaters is amenable to improvement by reducing body Fe”

  • Brittany DeMott says:

    Hello, I have had my official diagnosis given to me due to doctors lack of knowledge. I have never had a negative ebv test, it has been 16 years however, since i have been sick. Each ebv test, which I made my doctor check, was always positive.

    I do not believe we can confidently say that it is fatal (3-5 years). I am still able to be dependent, with restrictions. I feel helpless, forgotten about, confused. I did get the covid vaccine and had 0 side effects, which really confused me. Anyway, came here to vent. Maybe connect with others. Feel very isolated.

  • Cindy Shannon says:

    I have just been dx with EBV. No mono or HIV. Abnormal blood shape and lots of other symptoms. Just found out today. Thank you for your article. It gave me inspiration.

  • Brenda Thibodaux says:

    They say I have EABV,I loved reading your articles,helps me a lot to know I am not the only one with this sickness. I haven’t found a dr yet to help me,so here I am sick and tired day after day.but hey thanks ,email me sometime. Brenda from Texas!

  • Thomas says:

    Hi Brent, I can’t believe what I’m reading. There is a cure to CAEBV, it can be cured by an allogeneic hematopoietic stem cell transplant. I was diagnosed with CAEBV in August 2018 and after receiving allogeneic hematopoietic stem cell transplant in January 2019 there has been no trace of the disease. How is it possible that no one has informed you of this? I really hope you can get the help you need. Best wishes.

    • Kim Sulston says:

      Where did you get the treatment? My 22 year old daughter in Canada has this rare disease also.

      • Thomas says:

        I got the treatment in Spain. As this was the first case here in Spain the doctors treating me followed the treatment of a Japanese doctor, where CAEBV is more known. Hope your daughter can get the help she needs.

    • Zinta Kalnins says:

      I was never informed of this cure either, only read about it recently online in the last year. I have been suffering with CAEBV since 2009.
      Where would I look into this?

    • Kathy GUIDO says:

      I just read this is the only cure so far. I have had CAEBV to a debilitating state starting this past week and I am on medical leave. The practitioner I see has started me on an antiviral and supplements based on 45 vials of blood taken. I studying this condition and just reached out to my practioner about hematopoietic stem cell transplants. You give me hope. I work at the Cleveland Clinic so I pray the answer is at my door step. Thank you for your post.

      • Mike says:

        Hey super interested in potentially scheduling with what ever doctor you are seeing . Do they work at the Cleveland clinic ? Who is the doctor you are seeing ?

      • Kailey says:

        Hi Kathy, I’m looking into inquiring with them as my office and the other two I went to aren’t helpful. Who do you see at the Cleveland clinic?
        TIA
        -Kailey

    • Morgan says:

      I live in the US. So there will probably never be a Dr who will sign off on sich treatments. I also doubt my insurance would pay for it. Also because I live in the US, I am poor. So I cannot afford to pay out of pocket for such things, or fly to another country to receive them. Is there any hope for those of us who live in the backwards US??

    • Wioletta says:

      Hi Thomas,
      my name is Wioletta, from Germany.I realised few months ago, that I got CAEBV: all symtomps,many organs pain,high level of dieeferent antibody and got really worse after lumb nodes operation on Dec.2020.I got reactivation every few days, a bigge one every few weeks. I did ask many of German doctors for help, nobody has an Idea about this illness. Eppstein bar virus_ yes, mononucleosis: o yes, but that´s it.
      The knowlegde about this virus is in Europe very very low. Could you let me know plese, who can diagnose me and where did you do your operation please? I really need help and I can´t get it in Germany,
      Best Regards,
      Wioletta

    • Wioletta says:

      Hi Thomas,
      sorry, my answer went somewhere else, as I never used this chat. I live in Germany and the knowledge about eppstein bar virus is very very low, After an almond removal operation 9 months ago I´m getting just worse. Could you just let me know, where did you have your operation in Spain, which hospital? Which doctor was the one who diagnosed you?
      Please, let me know, I just really need it to stop my suffering.
      Best regards, Wioletta
      Wioletta

    • Christi Semmel says:

      Please share your journey on how you got the right doctors to help you. Thanks!!!

  • FW says:

    Brent, thank you for writing about CAEBV. A disease that most people believe do not exist. I work at a medical college. I tried to explain my condition to my boss a few years ago when I was having health issues related to CAEBV. He told me that almost everyone has EBV and all that my functional medicine doctor has done to improve my health is just a bunch of voodoo medicine. He had no understanding of the difference between EBV and CAEBV. He is now the president of the college.

    I am very concerned about COVID, especially now that folks are being vaccinated. While that may sound strange, I have found that those who are vaccinated believe that they are completely immune and cannot carry the virus thus they no longer take the precautions necessary to protect themselves or those around them.

    I have also been diagnosed with Hashimoto’s Thyroiditis. It seems as autoimmune conditions and rare diseases never seem to be only children. I would love to be part of a support group, sharing treatment protocols and discoveries we have made through this journey that have improved or degraded our health.

  • Tashi Louise says:

    Hi Brent, Have you been checked for genetic MAGT1 mutation? Even if this is not underlying factor magnesium threonate is a supplement you should include. Also look at the studies on herpetic/EBV virus/cancer and betulinic acid (you can extract it with a hot water extraction of birch bark). Look at study on triptolide (thunder god vine and EBNA1 inhibition). Have you checked your retinol and zinc levels? Chronic viral infections can deplete them and then the immune system malfunctions. If low you’ll need retinyl palmitate supplements specifically. See studies on lactoferrin and reducing ebv induced inflammation. I also suggest testing yourself for mycotoxin poisoning (exposure from water a damaged building) great plains labs urine mycotox test. Many of us with reactivated viruses (I am aware CAEBV is different) have discovered this is the primary cause of immune dysfunction.Not much published research in humans, mostly animals but there are some doctors specializing in it. It’ll send you down a rabbit hole but i recovered from 2 yrs bed bound with multiple viral reactivations by treating the mycotoxin issue, primarily using binders that sequester and remove bile acids. Best wishes

    • Felicia says:

      Thank you for posting this much detail. I was diagnosed with CAEBV several years ago. Monolaurin, vitamin D, zinc and vitamin C (daily and sometimes infusions) have been helpful to me in getting me mobile again. You have given me some new information to research and I’m about to dive in. Thank you.

  • Randy Filinski says:

    Thank you for sharing your incredible complex story at such a young age and talking about the big questions one faces along the way. Healthcare can be one of the key relationships as you have outlined and the science has taken us to new levels of capabilities…but then we go home, and are confronted with the questions you ask.

    I have learned to open up my own network to both share and learn…and it is the human thing to do.

    Again, thank you.

  • Linda says:

    Hi: Great article. I would just like to comment that there are an estimated million Canadians that suffer from a multi system biological disorder called Myalgic Encephalomylitis(ME), formerly known as Chronic Fatigue Syndrome, most often also associated with Epstein Barr. This disease has been in existence for decades now and has a plethora of science to attribute to it’s multi system biological disorder. The medical establishment, chose not to educate doctors on this disease, because they decided it was a non disease(now that’s science?)
    It is recognized by the CDC, NIH, and Canadian government and yet not by Canadian doctors as a multi system biological disorder. It is a post viral syndrome that affects brain temperature, muscles, cardio vascular system, gastro intestinal system and yet the only support received for these seriously ill patients, is from the support groups that have formed, which include doctors that also have been diagnosed with this very debilitating disease. Now, with post viral syndrome from COVID(long haulers), there is a great deal of attention but no link to ME. We need a complete overhaul of this hierarchal medical system, where science can be ignored and schools can pick and choose what they want to teach our doctors, that are paid from our taxes. It is a disgrace to science. Any doctors that have chosen not to educate themselves on this disease, when they probably all have patients with this disease, need to find another career. If you are being paid to use science to treat patients then quit using guess medicine and political opinion. Keep up with the science. You are doing further harm to these million people in Canada, and living with this disease is enough of a punishment. If you have any integrity at all, then insist that your medical schools clearly outline that this disease is not a psychological disorder, as was recently seen in a book sold by Western University in London for doctors, and teach the real science behind this disease to all doctors in Canada. Though I appreciate the work of the front line doctors and nurses through this pandemic, it is time for a complete overhaul of our highly political, insensitive and financially driven medical system in Canada. Let’s get away from politics that harm and back to science that heals.

  • Catherine du Puy says:

    HI Brent – very interesting article. I am an Advanced Care Paramedic, and am currently finishing my BHScn. I have read your article and find it very interesting. First of all because years back I too was told I had chronic Epstein Barr after having been diagnosed with mono while I was 19. I was still sick for months afterwards and no one could figure out what or why but that I had consistent elevated titres. Long story short, I went on with life living with an illness that no one in the medical community believed in. It was all in my head. I have for the past 8 years of my life been living the ever changing non explainable constant medical “weird” things that happen ….. and have been through hyper/hypoparathyroidism. I would love to chat? or have some information on what you know or what other know of this continual Epstein Barr situation.
    I am so sorry to hear that you too have been going through chronic illness. Your article is great and I wish you well with your Maters.

  • Tashfeen says:

    Great article with an inspirational mantra … “comfort always”. I hope you find a treatment soon and keep writing such motivational gems.
    I wish you healthy life and godspeed.
    Tash

Author

Brent Leonard

Contributor

Brent Leonard is a senior member of the finance team at a health tech start-up and has more than 15 years of experience in software and start-up firms. He is currently enrolled in the Master of Health Administration program at the University of Ottawa.

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