Weekly Report from the Bellingen Covid-19 Clinic: Dr Trevor Cheney

By October 13, 2020 In Focus 5 Comments
Dr Trevor Cheney gives his weekly report from the Bellingen Shire Covid-19 Clinic

Dear Bellingen Shire 13 October 2020

So, we have another little pop up in Sydney. This is unfortunate after such a good run. I heard commentators on media today again asking /spruiking – “Why should we bother with continuing restrictions that hurt so much? We are just going to have to live with this virus, so is it worth the cost trying to avoid it?”

Well ..um.. Yeah!?

This line of doubting, I believe, is still being pushed by political gain, the “I am cleverer than all the trained, informed, researched experts” commentary, and has little to do with the raw facts. In fact, most of the facts still have not changed in the last 6 months.

From early in this crisis epidemiologists (those curious, dark, numbers people relegated to small offices and who have been so incredibly skilled at being able to not say “ I told you so”), as well as the frontline medicos, and those of us taking a particular interest in the impact of a real pandemic of a novel disease on the world’s population, have expected that if good control can be achieved then we will see breakouts, suppression, good times… and then another little breakout somewhere else. There will not be elimination. Unless you have an underground nuclear bunker stocked for 20 years and want to look like Jim Carey.

However, as we all get fatigued, bored, distracted, nervous about the future budgets and borders, it is again healthy to look outwards at what might be.

>37 million cases of Covid19 around the world so far reported with about another 350 000 added daily, >1million have reportedly died from just this new disease in just 7 months. Even if you assume these numbers are grossly under-reported by a factor of 10, then there are still > 7 billion souls to infect.

The USA is reporting around 50 000 new cases daily.

Victoria’s horror outbreak is down to 9 or 12 new cases, and last week NSW had many days of no new cases. The Mid North Coast still has none! (Hopefully, that doesn’t change in 2 weeks after the school holidays).

Around the world about 17M people die of heart disease each year, about 10 M from cancer. 4-500,000 from malaria and about 1.6 Million by violence, about 400,000 from war. If the Mortality rates are also unreported, then a multiplier will have it as one of the 3 leading causes of death worldwide this year. And Covid19’s rate is actually still accelerating. Though you wouldn’t notice that in our backyard.

So yeah, keep it up. Because the one big open secret that we have been spruiking, that makes your efforts worthwhile, is that we delay the pandemic in the reasonable expectation of arrival of a safe vaccine, or effective treatment.

Once again there is rising concern in the health services about young folk not being perturbed. We are starting to get some data in on an issue I mentioned a few weeks ago that is worrying me and is a real-life experience already for some in our community. The mysterious “post viral syndrome”.

The New York Times has been running a series of tracking articles on this topic. Even Doctors in medical media are starting readily to use a term that was (not long ago) dismissed as pseudoscience by medial researchers. That is: “Brain Fog”.

The syndrome is elusive but in New York they have had lots of cases to study, so it is opening a unique window to study a tricky phenomenon in real time evolving. There appear to be thousands of people developing a syndrome months after Covid 19 infection. There is a report looming on a study of 3930 “Covid Survivors” that hopes to find some common explainers. A French study reported in the August Journal of Infection following up 120 people post hospital discharge at >100days, ie 3 months post hospital.

Now I have traditionally offered folk a thought about the annual flu vaccine –“If you think you can turn your life and income off for a full month of misery then fine, don’t worry about the vaccine. I tried one year and paid that price”.

But this is different. At >3 months more than 50% were still unwell with symptoms of fatigue, breathing difficulty, memory loss, Hair loss (in predominantly women), lack of concentration, and disrupted sleep. Their lives stayed stopped!

One key disturbing feature here is that there was no difference in those who had milder disease and those who needed ICU. The study did exclude the most severe cases in ICU, anyone with dementia,  and those who died. A weakness is that they had no control group to compare, but it would be hard to argue that it’s ok for 50% of the population to walk around struggling to function. Only 68% had been able to return to their jobs or start near normal activity after >3 months post discharge.

Another discussion article in a companion to Journal of the American Medical Association (JAMA – one of the world’s top tier respected journals )- like the New York Times articles, lists a bunch of case studies of people 1,3,5 months post infection still having trouble finding words, unable to return to their (still existent) jobs, unable to care for pets, or even recognise their car. The next disturbing aspect of this report is that many of the cases quoted were in their career prime, or even early 30s. The most infected demographic is 20-40 year-olds.

It should be noted that the largest proportion of people infected in Victoria were health care workers, also in their prime, many in their 30s, nearly all at work. ie -all the folk we rely on in a crisis.

Support groups are calling themselves “ Long haulers” or Survivors”. Diagnostic labels include Myalgic Encephalitis, Chronic Fatigue Syndrome, and sadly, misguidedly, often psychological conversion syndrome. They also document a frequency of Postural Orthostatic Tachycardic Syndrome. Try saying that quickly after 2 beers! Wth this symptom complex, when you stand up your blood pressure drops and your heart races and you fall down. There is also a bizarre condition that is every bit like chilblains.

Chilblains is an old condition you might read about in old Dickensian literature. Not quite frost bite. I had chilblains once in a previous life camping with a group of Cranbrook school kids on a winter Outdoor Education program in the mountains behind Canberra. The ground had frozen with beautiful ice crystals lifting the surface of the earth up about 2cm in little clear ice columns. It did the same to my frozen solid boots, which I put on to try to soften them, which promptly passed on the same beauty to the toes undeservedly thrust therein. It really, really hurts!!

The causes of the mystery post viral syndrome are suggested to be from damage to the lining of your small blood vessels, damage to the little energy factories in each cell (the mitochondria), even ongoing swelling and rogue, unexpired immune cells on your brain, or maybe even persisting infection. There is evidence for a knocking of balance of the autonomic nervous system. That is the amazing network of nerves that go all over the body from tiny blood vessels to the great big intestine and moment to moment beating of your heart, controlling maintenance functions, mostly completely out of your awareness. Some even characterise the network of this nervous system around your gut as the ‘second brain”.

A great challenge will be to find a diagnostic marker for this syndrome, and a cohesive explanation of what is actually going wrong.

People naturally look to link a time in their life when the bottom fell out and you will find no end of googling that will tell you exactly that all your symptoms are leading to exactly the diagnosis you are asking about. But a thousand different uninformed questions will get a thousand different diagnoses for the same set of symptoms. So as doctors we spend a lot of thought trying to identify if the connection the patient is making is realistic. Or, even more importantly, trying to not be misled by an apparently obvious diagnosis, only to miss the real demon masquerading. I never want to miss a hidden cancer or multiple myeloma while making assumptions one just has an infection.

It is often assumed all infections, if the host survives, get eliminated over time. That assumption is in many diseases not true. After all, we all knew the chicken pox virus causes an initial disease which wanes but then sets up quiet permanent residence. It later pops its head up as Shingles. TB can do similar. So can Epstein Barr virus (that causes glandular fever).

Anyway, we don’t have an answer for these folks yet. However, I am delighted that this syndrome is getting publicity at last. I have met a significant number of patients over the years who have had a similar life experience but get dismissed as being malingerers when I know they are genuinely ill. We just can’t explain why. Some will get better with rest and graded exercise, some with targeted nutrition, some with anti-inflammatory treatments, some with all the above plus a new immune modifying medicine, and some never – just needing genuine care.

The lab Sullivan and Nicolaides has announced that they will be soon able to run more reliable tests on immune markers to establish past history of exposure to Covid 19 for those who have had mystery respiratory illnesses in the last year. It will be interesting to see if this helps understand the pandemic, and some people with unexplained new chronic fatigue syndromes. It will still be of no help to people who are acutely ill.

At least the spotlight on ME, CFS,PVS, might lead to some much better answers to a growing army of people whose lives are stalled and depleted. In the meantime, this is the salutary lesson for Millennials.

Regarding the Covid clinic in Bellingen:

While the local version of the pandemic wildfire is cooled, but the middays are getting hot, we will be moving the time of our local Covid19 assessment and swabbing clinic to a morning time slot. Actually this is a comfort call. Honestly, jumping around in those giggle suits and screens in over 30 degrees is really suffocating! The Doctors, Nurses and Administrators of the surgeries are hoping that it will also mean a little less disruption to our normal services to you.

 

Please check with your surgery when the time of opening will be, And please remember all of the above is one personal observation. Check all details with your rare bird – your personal GP.

Dr Trevor Cheney

 

5 Comments

  • Tamson Mayo says:

    Dr Cheney you are a gem. One of the things we MEeps long for is acknowledgement of the existence of our suffering and you have always provided that. I feel the scariest thing about COVID is the potential for it to leave people with ME…having to battle through life as if they are swimming through thick mud. It’s not just a live or die scenario if you contract COVID-19. There are so many people with lingering issues popping up in ME support groups on Facebook. Thank you so much for your knowledge, wisdom, compassion and passion. You make such a difference to the world of so many!

  • Heidi Holmes says:

    Thank you for your reminder and the lucid account of the facts. Much appreciated.

  • Clare Beckett says:

    Yes, I thoroughly endorse the above two writers. There is so much information/misinformation around, that it’s really helpful to get some medical / scientific info to ponder. RN’s recently aired program “Sporty” told of a 31-year old woman who was active & healthy before she got Covid 6 months ago, and is still struggling with many of the symptoms you describe above. And I’ve heard of a few similar stories. So thank you so much for giving us so much to think about.

  • Lesley Steabler says:

    Thank you Dr Cheney from here in England where the situation is really bad. Over 370 people have died in our town alone. A lot of people disregard the guidelines and can’t keep out of the pub and insist Covid “isn’t a thing”. We were visiting family in Coffs in March and came back to lockdown.
    I read your column evety week and wish more people over hear would publish such easy to understand information

  • Chris Hundt says:

    Thank you Dr Cheney! How good it is to be informed by a professional who can explain it so clearly.

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