Some advice about chronic fatigue syndrome and SARS CoV-2 (coronavirus)
Dr Mark’s Take on the Coronavirus - 1 April 2020
Note: This is a LONG article. If you wish to listen as podcast / audio - click here. Early feedback is that it is too long for CFS sufferers to get through. Which I really should have known. Problem is that once I get started, I tend to keep going. At their suggestion, I am breaking it up into sections, and a tl;dr section at the top. That means the blog is changed but I hope in a good way. Hope you find it useful. Send any email feedback to mimbloom@icloud.com. Thanks. Mark
Intro
Hi and welcome to my blog (and soon-to-be podcast) for clients and patients of Mosman Integrative Medicine in Sydney, Australia. My focus here is on the risks and impact of the coronavirus on patients suffering chronic fatigue syndrome and central sensory sensitivity responses (including multiple chemical sensitivity).
Most of my patients have multiple components and contributions to their illness, including chronic or relapsing Epstein-Barr virus (EBV) infections, small intestinal bacterial overgrowth (SIBO), postural orthostatic tachycardia syndrome (POTS), allergy and intolerances, and mast cell activation syndrome (MCAS) to name just a few. I’m getting more calls, emails and messages every day than I can possibly answer, given the recency and suddenness of this pandemic, and the lack of quality peer-reviewed research available as at the time of writing (30 March 2020).
About the coronavirus and the illness it causes
Firstly, the virus that is causing the illness known as COVID-19 is called SARS-CoV-2. That’s pronounced “co vee two”, not “cov two”! Someone please tell Norman Swan*. It is a type of virus known as a coronavirus, closely related to the common cold virus, and to the SARS and MERS viruses of years past. It is nowhere near as deadly as the SARS or MERS, at least in terms of case fatality rate, but it is extraordinarily contagious. The majority of deaths and severe disease fall on those over 70 years of age, and more specifically in those already suffering heart disease, diabetes, hypertension, cancer or lung disease. The virus affects the lungs, the heart, kidneys, gut and liver. Because of its ease of spreading (contagion), the burden of disease in the community and the number of deaths in total is considerably greater than for SARS and MERS.
SARS-CoV-2 is a bat virus, possibly with some intermediate animal in transmission, and it is one of a group of viruses that have been anticipated to ignite a pandemic for more than 40 years. This is partly because of human invasion of the natural habitats of other animals, causing a planetary disequilibrium which the WHO is attempting to address in its “One Health“ initiative. This recognises that there is only one health of significance – the health of the planet, including all its ecosystems and inhabitants. The invasion and exploitation by humans worldwide has brought us face-to-face bugs that we could not have imagined and are not prepared for.
There is a sense among virologists that COVID-19 may be just an early shot across the bow – a warning of future pandemics that may not be so kind to the young, fit and healthy people of the world as this one is. Given the pandemonium and panic that SARS-CoV-2 has generated, one shudders to consider what the impact would have been had this been a highly fatal coronavirus like SARS or MERS, with the new superpower of SARS-CoV-2 for contagion.
Hygiene - Preventing contagion
I have a simple message for all of my patients, irrespective of their age or sex or health status, which is entirely congruent with the advice being given by public health authorities:
Assume that you and every person that you see already has COVID-19 and is contagious, and act in a way to protect all other people from you, and to protect you from all other people from viral transmission.
Keep your distance. 2 metres is ideal
Stay at home.
Wash your hands with soap. Before and after any outdoor ventures
If you have a cough or are sneezing, wear a mask (if you can find one).
AND DON’T PANIC!
Hygiene - being healthy
Your best defence in terms of active treatment is to do all of the above, then relax. Breathe. Enjoy the forced break. Seek out your joy, peace and fun in life. Tune out from the scare-mongering and breathless reporting of every atypical case; from the fear of collapsing economies; and from paranoia dressed up as science. These huge events over which we have minimal control can make us feel powerless and fearful, an ideal ground for viral replication and loss of immune balance.
Focus on what you love to do in the time the virus enforces a break from usual reality. Walk a dog and let them break all the social distancing rules. Start online yoga, qigong, meditation or mindfulness, and when we emerge from this event, go and do that same activity with others in classes and out in the fields.
And did I mention breathing? Intentional, deep and slow breathing. Many of us (me included) live a short distance from our bodies and breathe only on autopilot. Pay attention to that deep, slow breath. It may literally help save lives in this illness.
Prevention and managing an infection
It is still hard to make firm recommendations for prevention, early mild disease and later severe disease. The data are still being gathered, and everyone is guessing to some extent. One major issue is whether complications arise from too strong an immune response in some people, leading to a dreaded “cytokine storm” in which the immune system keeps winding up even as the virus comes under control. It is why some suggest hydroxychloroquine (Plaquenil) might work. Trump supports it, which makes me feel it’s probably a bad idea without need for other evidence. I know that’s unfair.
Case reports are coming in suggesting that a reasonable predictor of future bad outcomes is diarrhoea in the early stages of the illness. And this makes some sense as ACE-2 receptors (to which the virus binds to enter the cell) are found in the upper gut. But how, you may ask, does a virus work through the vicious acidity of the stomach to infect the bowel? It may not need to!
So many of us are unnecessarily taking acid suppressing drugs known as PPIs (proton pump inhibitors - the generic names of which all end in “…prazole”) that the gate is wide open for the virus to drift from throat to gut without the normal acidic barrier. This group of drugs is already known to increase the risk of community- and hospital-acquired pneumonia by 50% or more. You can see the potential problem. Bug gets to gut, binds and breeds up causing mainly diarrhoea, then moves to lung in the second week of infection, just as the throat infection is declining, causing pneumonia and triggering an aggressive cytokine storm.
Yes, OK. It’s a hypothesis. The bits of it do fit. The high use of the PPIs worldwide, more used in the older population. Proven link to pneumonia. I’m mentioning it because it is safe to temporarily cease these PPI meds for most people with simple heartburn, as our experts frequently plead with us doctors to do. It could be sensible to do so now. And maybe replace the drug with less alcohol, fewer cigarettes, weight loss and a diet less prone to causing reflux. Ask an naturopath - we doctors have got lazy with simply prescribing the PPIs instead of taking the time to explore non-drug options.
I’d simply suggest some high dose multistrain probiotics and maybe some Saccharomyces boulardii to help settle and protect the gut by creating a balanced microbiome. They taste better with cinnamon in stewed apples! Mike Ash wrote a great paper on that some years back which transformed my management of gut-associated illness, and the original paper can be downloaded from here. I have made a variant of his excellent work for my CFS patients in Australia which can be downloaded from here.
Getting the gut right is not controversial in this age of the microbiome! We will have to wait to see if it is beneficial in reducing COVID-19 severity.
What about vitamin C? Some promising info from China suggests that intravenous ascorbate has a place in the treatment of established severe COVID-19 infection. This mirrors IV ascorbate’s place in reducing mortality from septic and other profound shock when used in combination with steroids in hospital ERs, but we need publication and review of studies already carried out before heading too far down this path.
What is not controversial is the use of lower dose oral vitamin C to reduce the severity and duration of the other coronavirus, the common cold. Keep on at least a gram of vitamin C per day unless you have a propensity for kidney stones.
We do need plenty of two fat soluble vitamins for infection protection. The first is vitamin D. Deficiency of this vitamin (which is really more a hormone than a vitamin, as we make it ourselves from sunlight and cholesterol) is associated with increased viral infection of the upper respiratory tract, which is probably the primary site of initial exposure for the SARS-CoV-2 virus. Maintain good sunlight exposure (especially heading into lockdown and winter in Australia) and add 1000 to 2000 IU of oral vitamin D.
The second is vitamin A, and although most of us manage the conversion of the easier-to-source beta-carotene to vitamin A, some do not and go a carrot-colour while remaining deficient in vitamin A. That’s the story for many of my patients. Raising vitamin A is usually done by consuming plenty of yellow and orange and deep green fruits and vegetables. If it does not do the job, cod liver oil is still a good standby at a dessertspoon full a day. Supplementation can be tried carefully with up to 25,000 IU of supplemental vitamin A, but this should not be done if pregnant or possibly becoming pregnant.
Eat healthily and exercise in sunlight to keep limbs moving and fitness high. The body movement and exercise is an important signal to the brain and immune system that you are healthy, and the nervous and immune systems respond positively to these signals.
There is more that I have missed than I have mentioned above, and I will be watching out for info to convey through this blog and podcast down the line.
Where are we now?
At the time of writing, the majority of Australians are confined to their home except for essential activities such as shopping and some minimal daily outdoor activity. Some are continuing essential work in their workplace, but most are now either working from home or have lost their jobs. This type of self quarantine is likely to be effective in preventing the peaks of severe adverse outcomes that were anticipated after the experience in China and Italy in particular. And this is important because it means that health services are unlikely to be overwhelmed in the way they were in those countries and possibly now in America.
It is likely that somewhere between a quarter and a half of all Australians will eventually be infected with SARS CoV2, but if this is spread over time the health system is unlikely to crumble, and many lives will be saved. Still, we are going to have to get used to this virus. It is likely that it's pathogenicity, meaning its ability to cause severe disease and even death, will diminish over time and it will become a more tame human infection like the common cold.
Although there is very little evidence of its impact on sufferers of chronic fatigue syndrome and sensory/chemical sensitivities, I have no reason to believe that it will be more or less severe an infection than it is for the average person in the community. It is true that people with chronic fatigue syndrome do seem to have somewhat over active immune systems (rather than underactive which is a common misconception), but no one knows whether this is good or bad in terms of ability to fight the virus and avoid complications.
I would be warning against the use of agents such as Plaquenil and azithromycin at present for patients with chronic fatigue syndrome, firstly because they are unproven and secondly because they can have significant adverse effects that may even predispose to further illness. We will keep an eye on this, however, but given that the use of steroids such as prednisone increased the mortality rate in China, it is probably wiser to stay healthy and out of harm's way than to catch the virus and try experimental drugs.
Transmission and Face Masks?
The question of face-masks is controversial, but mainly because of the shortage of face-masks and the need for healthcare workers to use the stocks that are available. It appears clear at present that SARS CoV-2 is not an airborne virus, but is transmitted via tiny droplets from sneezing or coughing, falling to the ground or other surfaces very swiftly well within 2 metres of the person coughing or sneezing.
It seems more and more apparent that the major mode of transmission is from respiratory tract to a surface such as a door handle, table, sink or even the floor, with that surface is subsequently touched by another person’s hand, which then contacts that person's face for transmission to the respiratory tract. Repeated cleaning of surfaces that other people may have touched or contaminated appears to be the best way of of preventing transmission.
Mr Digby, my pooch, has asked me to mention that there is no evidence that dogs are a vector for transmission despite the culturing of coronavirus from the poor 18 year old Pomeranian in Hong Kong :-)
So who does well and who does poorly?
Despite all the hysteria, it is worth remembering certain facts that have been collected to date about COVID-19. Skip this section if you don’t want to know.
Remembering that all the mortality rates that I am about to talk about probably need to be quartered (for reasons we will come to below), the major predictor of fatality is age. People over the age of 80 have a reported 14.8% case fatality rate. If you are 70 to 79, that drops to an 8%. 60 to 69 year olds drop to 3.6%. And once we go below 50 years of age the case fatality rate is not that far from that of a bad ‘flu season. Fatalities are extremely rare in people under 20 years of age. It looks as though children have been a primary vector for transmission because they suffer few obvious symptoms and little illness themselves. And because of a horrible tendency to spread gooey secretions all around the place.
The second important factor in determining case fatality rate is comorbidity, meaning a coexisting disease at the time of the virus is contracted. Chronic fatigue syndrome is a syndrome, not a disease, and sufferers generally do not appear to fall into an at-risk group.
Cardiovascular disease is the number one medical predictor of poor outcomes, with 10.5% fatality rate, more than 10 times the fatality rate of people with no pre-existing medical condition. Diabetes is next with 7.3%, chronic respiratory disease at 6.3%, hypertension 6% with cancer following on at 5.6%. People with none of these pre-existing conditions have a fatality rate under 1%. These figures will change as the pandemic spreads and as we test more people including asymptomatic youths.
The third fatality risk factor, at least in China, is being a male. The fatality rate for males was 2.8%, while the fatality rate for females was 1.7%. It is generally thought that this relates to the difference in smoking rates between males and females in China, and it will not surprise anybody if this changes in other countries. Still, at least in the early stages the males took a bigger hit!
At a technical level, the “neutrophil to lymphocyte ratio” (NLR) is a measure of the balance or imbalance between the innate (neutrophil) and the adaptive (lymphocyte) immune response. Typically the ratio is less than 3, but US doctors have remarked that when the ratio starts escalating (neutrophils go up and lymphocytes go down), the prognosis worsens. Doctors are reporting ratios of 30 to 50 in some of the sickest patients and a very high mortality from this.
These fatality rates all seem very high and very scary. They figures are probably not true. The fatality rates were measured as the number of people who died of COVID-19 divided by the number of cases identified in total. What we now know is that about 80% of people infected with SARS CoV-2 have either no symptoms or symptoms so mild that they were never counted as cases. This picture will become clearer as blood testing and PCR testing for viruses become more common, but in simple terms it means that we should discount the above fatality rates, probably by a factor of five.
Let’s take and example. In the midst of the epidemic, say 1000 sick people turn up to hospital who are found to have an infection with SARS CoV-2. Let’s say fifty of those people die, meaning the case fatality rate is 5% (50/1000). However, the total number of people actually infected is four times more than the number who became sick enough to go to hospital. This means there are about 5000 cases, of which 4000 do not even feel sick enough to go to hospital. The actual case fatality rate would be 1%. (50/5000)
We are too early in this pandemic to have firm and reliable figures, partly because of cultural and political issues in the countries with the majority of infections; partly because of the slowness to test the population to find out how many people are actually infected; and partly because the science takes a back seat to empirical medicine and trials of treatment that are more desperate than well considered, especially when the world goes into panic as it has done for this infection.
Final thoughts and reflections
I have listened to and read the opinions of virologists and epidemiologists in discussing COVID-19, and it seems clear that the entire world is a series of experiments, partly guesswork and partly informed opinion, in both politics and science for every different country. President Trump appears to become more popular with every step he takes away from the science and advice of his medical team. He does bring an important point to this discussion, namely that hunkering down for long periods of time and facing economic ruin has to also be considered in deciding what price we are prepared to pay for a virus like this one.
Bluntly, elderly males with pre-existing diseases which are fairly common will be the majority who suffer severe illness and die. This is tragic, but unsurprising. While every life is precious, this virus selects preferentially those closer to the end of their days, often with their health failing, rather than children, young adults, and other healthier oldies. The highest burden of severe disease and of death will fall on those with the most limited expectations of future health and longevity.
The next virus from a distant cave or forest may not be so kind. This pandemic may be a blessing that forces us to step back and reconsider both our place and our vulnerability on this tiny precious blue planet, and really push forward the WHO One Health initiative to see health as a planetary issue, and our exploitation of the planet as a threat to our own health and longevity as a species.
A healthy planet breeds healthier humans in a broad and healthy ecosystem. That is definitely what we need for people with chronic fatigue syndrome and sensitivities, who I do often see as the canaries in coal-mine earth. With everything shut down, the air is clearer. The noise is settling. The people best practised in staying at home and getting through are my own patients!
I suspect our worlds will not be quite the same after this. I hope that we will emerge more compassionate and understanding of those whose disabilities and illness have been going on for years and decades. Just maybe.
Oh, and stock up on toilet paper and baked beans ;)
Mark
* “physician” and ABC radio personality who may benefit from a chat with Bettina Arndt before accepting his AM for coronavirus services to the Australian public next year 😮🩺
