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The Long Covid Post

Written By: - Date published: 11:30 am, January 5th, 2022 - 50 comments
Categories: covid-19, long covid - Tags:

This tweet just alerted me to a dynamic I hadn’t quite seen, namely that the public is generally ignorant about long covid, what it is, and why it matters so much.

I get a lot of my initial information about covid from twitter, where there is much discussion about long covid that seems to not be being picked up by mainstream media (and I’ll hazard a guess by alt media too, it’s not like subcultures are immune to ableism).

On twitter there are people with long covid (PWLC), and nurses, doctors, statisticians, public health bods, some of whom also have long covid, all talking about the issues. Here’s  a non-comprehensive list off the top of my head of what matters,

  • long covid is a new, emerging syndrome, poorly understood by the medical profession
  • it affects a wide range of organs and systems in the body
  • research is being done, and this takes time, both to complete studies and to develop the bodies of knowledge that subsequent studies are built upon
  • mainstream medicine and public health are just not very good at responding to chronic health conditions they don’t understand. WINZ aren’t great either.
  • mainstream medicine tends to focus on reductionist views of the body and illness, post-viral syndromes affect multiple systems at once.
  • the alternative health sectors are doing good things for people with such chronic illnesses that mainstream medicine can’t. There’s also a fair amount of bullshit out there. Maintream medicine and research largely ignores the stuff that is working.
  • there’s a fair amount of discussion about the similiarities between Myalgic Encephalomyelitis (M.E.)/Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) (another post-viral syndrome), and long covid, by both people who are unwell and medical people/researchers.
  • many people with chronic health issues watched the original emergence of long covid and we just nodded our heads and went yep. As the tweet says, there is a huge body of experience there and a lot of skills. This includes how to adapt, what systems need to be in place, and what makes the difference between quality of life or not.
  • many people think of disability as something over there, a deviation from normal.  We are generally not very good at seeing disability as a normal part of life and making sure it is attended to.
  • One of the big concerns about long covid is the high rates will make many more of us disabled in some way (10% – 40% of people with covid end up with long term symptoms)
  • while some patterns are emerging, we don’t know yet who gets covid and why. Otherwise healthy people who get mild covid can end up with long covid. Asymptomatic cases likewise. The unknown aspect of this suggests great caution.
  • there is no way to know at this point how long covid will play out over time, including with new covid variants. Only time will tell.
  • the politics of disability, health and wellbeing are going to get a workout. In New Zealand we have treated chronically ill people badly for a very long time, both via WINZ and the MoH, and in parliamentary politics (remember David Shearer’s painter on the roof story?)

It’s understandable that public health, governments and the media have focused initially on acute covid, but we’re two years in now, it’s time to put long covid to the forefront as well.

I’m going to put this post up now and then edit to add content over the day.

50 comments on “The Long Covid Post ”

  1. RedLogix 1

    I'm not sure if you've spotted this Radio NZ article on long covid . It seems to treat the topic intelligently and in depth:

    Research in New Zealand into the post-viral condition known as Long Covid is now being carried out.

    It is building on key insights from studies of another disease – Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – once maligned and often still neglected by the medical establishment.

    ME/CFS has striking similarities to Long Covid in terms of symptoms and the demographic it affects.

    Some experts are postulating Long Covid could be a sub-type of ME/CFS.

    Those leading research into Long Covid here are looking to see if this is the case, while probing for a possible intervention to arrest the course of the disease.

    So, could Long Covid be ME/CFS by another name and what could you expect to experience if you developed this type of post-viral disease?

    • weka 1.1

      wow, that is really good, thanks!

      A few things stand out,

      The concept of LC and ME being sister illnesses makes a lot of sense (more than LC being a subtype of ME). Big overlaps, but important differences.

      This sounds super interesting,

      Tate realised however, the traditional biomedical way of approaching the subject wouldn't be enough. He took inspiration from Stanford geneticist, Michael Snyder, putting together a methodology that would ultimately lead to him to map molecular changes across a wide range of physiological processes when ME/CFS relapses gripped sufferers' bodies.

      One of the reasons that mainstream medicine has been relatively useless on ME is because it's a syndrome that affects multiple systems rather than being a discrete illness with known boundaries. It defies the reductionist approach. Stepping outside of the usual research frame sounds perfect.

      Haven't read the rest yet, there's a lot there.

  2. Patricia Bremner 2

    We know Hepatitis a b c infect the liver and long recuperation requires rest anything up to 12 weeks.

    Epstein-Barr virus (glandular fever) also requires 6 weeks rest to recuperate.

    Poliomyelitis virus causes wide spread system disruption as in long covid, and in my case 10 years of building back weakened muscles during growth. Some muscles did not recover. Enough were retrieved and I had a fairly normal life, hockey swimming two children, but have needed a power nap after teaching, usually 5 till 6pm most days to have reserves for family life. Some had the illness and recovered with little effect.

    Shingles virus also requires rest to recover.. and the reservoir infection from chicken pox can last for years.

    So why are we surprised to find this novel virus at times has such an effect? Perhaps because we have been concentrating on prevention, and now long covid patients are suffering and they have had their symptoms noted and compared by physicians. The conversation begins as they face multi system effects.

  3. Long term after effects of the 1918 Spanish flu pandemic:

    “We were leaden-footed for weeks, to the point where each step meant a determined effort,” Miss Goring recalled. “It also was very difficult to remember any simple thing, even for five minutes.”

    https://time.com/5915616/long-flu-1918-pandemic/

    We will see the same with long covid I suspect.

    • From the same article:

      Another collection published around the same time by New Zealand historian Geoffrey Rice is also littered with references to long-term symptoms of that flu—from “loss of muscular energy” to “nervous complications.” Some convalescents, recalled a Dr. Jamieson who worked at a hospital in Nelson, on New Zealand’s South Island, “passed through a period of apathy and depression,” or experienced tremor, restlessness, or sleeplessness.

      Sounds a lot like chronic fatigue syndrome to me.

    • RedLogix 4.1

      Yes – while it's clear there will not be the same immediate impact as Delta, when I started to look at the peculiar genetics of Omicron and it's opaque origin I reconsidered.

      • weka 4.1.1

        how come?

        • RedLogix 4.1.1.1

          Too soon – a lot of people still working on this. But the linked paper gives a couple of clues:

          The molecular spectrum of pre-outbreak Omicron mutations is inconsistent with an evolutionary history in humans

          The molecular spectrum of pre-outbreak Omicron mutations is consistent with an evolutionary history in mice

          What conclusions we should draw from this isn't clear yet.

          • weka 4.1.1.1.1

            I don't know anything about the evolution of viruses. Is the connection with mice unusual?

            They spent a while trying to pin ME on a mouse virus, but turned out to be a dead end.

            • RedLogix 4.1.1.1.1.1

              Humanised mice are frequently used in GoF serial passage experiments. More here.

              One thing is fairly clear, Omicron is almost certainly not a variant that arose within the human population as you might have expected.

  4. weka 5

    • weka 5.1

      Why this isn’t scaring the shit out of everyone is beyond me. Maybe people don’t understand what it means. This is going to be the other two New Zealands if we get free covid here

      • joe90 5.1.1

        Why this isn’t scaring the shit out of everyone is beyond me.

        >7 pages – from oh to oh fuck!

        • weka 5.1.1.1

          yeah, that's a retrospective not many will want to do.

          I've been meaning to go back and find the original tweets from the Italian doctors that set the whole panic off (legitimate panic, it was a serious emergency).

  5. RedLogix 6

    And a new Australian article:

    Ms Heaney's story is a part of the growing number of experiences associated with long COVID, which is why a new post-COVID care clinic at the University of Canberra hospital is set to open in January.

    Todd Kay is the director of allied health and says preliminary findings indicate a third of COVID patients experience long-term effects which is why this service is a necessity.

    • tc 6.1

      Oz has long covid in spades now thanks to the 'let it rip' call in NSW mid December from Dom backed by brother Scotty.
      Quite a shitshow unfolding across the ditch.

  6. Patricia Bremner 7

    Bill will say we are fear mongering…. but we got lucky, so shut it out if we can.

    • Bill 7.1

      Really bad idea that 'taking a swipe at an author' malarkey. 😉

      • left for dead 7.1.1

        As a friend,I think you should take a few steps back,Billy. This threat of yours"Really bad idea" is not what I expect from a respected author,commentator and moderator.Alex

      • weka 7.1.2

        you have said people are fearmongering. Quite a lot. eg

        And the virus, although deserving intelligent caution, wasn't nearly as dangerous as all the fear mongering would have had us believe.

        .https://thestandard.org.nz/new-zealand-2-covid-0-so-far/#comment-1847360

        More here https://thestandard.org.nz/search/bill+fear/?search_comments=true&search_sortby=date

        so I can't see how this is a swipe at you as an author.

        The post is about long covid. No-one, not even you, know how omicron is going to play out in chronic illness. Patricia Bremner's comment seemed reasonable based on what you have said in the past about caution and fear. If you think she is wrong about your views, then please explain how.

        • RedLogix 7.1.2.1

          To be fair you and Bill are really talking about different aspects of the pandemic.

          Bill is speaking justifiably to the propensity of the authorities and media to overplay the acute phase of the pandemic with case numbers that have only a weak correlation with risk. A lot of this has looked like unjustified fearmongering and I agree with Bill that this has led globally to a narrow and over-cautious public health response. If Omicron really is essentially a weak-live vaccine program that ends the pandemic globally, then it's reasonable to get on with it albeit managing the rate of spread as best as possible.

          You on the other hand speak to the unknowns surrounding the chronic phase of the pandemic and again I agree caution is justified until we have a better understanding of Omicron in this context. In particular I'd want to see transparency around it's peculiar origin before NZ allows it to enter. We only get one shot at this.

          The third option of keeping NZ isolated from the rest of the world indefinitely into the future is not reasonable either.

          Given these options what path would do you advocate for?

          • weka 7.1.2.1.1

            He is saying that about authorities and the media. He's also saying this,

            Micky's piece is marinated in fear.

            .https://thestandard.org.nz/new-zealand-2-covid-0-so-far/#comment-1847253
            In light of that, Patricia's comment seems reasonable. You can use the link above to look for other examples, but I've certainly been under the impression that it's not just media and authorities, but people who hold certain views on the pandemic, that are fear mongering.

            • RedLogix 7.1.2.1.1.1

              If we could just stop talking about 'case numbers' and start using 'hospitalisations, ICU’s and deaths' at the primary metric when we're talking about the acute pandemic – that would go a long way to bringing a more realistic perspective.

              • weka

                please explain how. Because in addition to hospitalisations and deaths, there are issues of transmission, short term sickness, long covid, health care systems overrun, and the flow on effects of all of that. If we talk about deaths and hospitalisations alone, we lose all that other perspective.

          • weka 7.1.2.1.2

            In terms of acute and chronic, the countries that took short term views now have cluster fucks to deal with. NZ is taking a longer view and it's worked out better. But now, two years in, it's all 'chronic', there is no acute. Even if best case scenario omicron takes over and we never get any other variants and omicron turns out to be incredibly mild, it's still going to be some time before we know that.

            I'm not sure what you mean by fear mongering exactly, but obviously MSM like the Herald do this on basically anything and everything. I'm sure there are lots of other outlets the same globally on covid.

            I don't get the authorities bit. Do you think NZ MoH has engaged in fear mongering?

            Also don't get the "case numbers that have only a weak correlation with risk." argument. Yes, there's difficulty in assessing true numbers of people who have covid, but if risk comes from transmission then understanding case numbers (ie the people who transmit covid) matters. And the situation with omicron has been explained well enough now. Omicron's lesser severity is to some extent at least offset by the increase in numbers catching it (so more sick, disabled, dead people as well as health system and flow on impacts).

            You on the other hand speak to the unknowns surrounding the chronic phase of the pandemic and again I agree caution is justified until we have a better understanding of Omicron in this context. In particular I'd want to see transparency around it's peculiar origin before NZ allows it to enter. We only get one shot at this.

            Thing is, the initial strong reaction by the NZ govt in the 'acute' phase, set us up very well for dealing with covid long term. For those of us used to looking at whole systems, how things have played out isn't surprising. It's always been obvious that the pandemic could go on for a long time, that vaccines weren't going to be a silver bullet, that we were dealing with many unknowns and couldn't predict the next stage. It's all novel. I didn't get to the precautionary principle now, I had it right from the start (in large part because of years of sustainability thinking that includes future proofing and resiliency, and training myself in systems thinking). And thankfully so did Labour.

            The third option of keeping NZ isolated from the rest of the world indefinitely into the future is not reasonable either.

            Given these options what path would do you advocate for?

            Don't know if keeping the borders the way they are now indefinitely is reasonable or not. It's certainly an idea that would freak a lot of people out.

            Thought experiment: if we had a new global pandemic, different virus, say in five years, and NZ was in a similar situation to now (spread quite contained), what's the death rate that would warrant keeping the borders closed indefinitely? 5%? 10%? 50%

            I ask because I think much of the arguments are tied up in how people feel about the borders. I'm ok with the borders being how they are for now, because it's killed mass tourism and there are many benefits to that. I'm also ok with it because it's how we stop the country being overrun with covid and the health care systems. I think the government should fix the MiQ lottery system for NZers as a priority and I don't really understand why they haven't (maybe it's a cost/benefit issue and they keep thinking they will be able to open the borders soon).

            The tourism issue aside, I think having a public debate about borders, immigration, the housing crisis, population, resiliency and regeneration and so on would be awesome while the borders are closed. What works about the restrictions, what doesn't, what can be improved, what can be thrown out, what are our values now, what do we want? Lots of people don't actually want to go back to how things were before.

            In the short term, let's see the full data on omicron at the end of January. Seems reasonable to wait until then and use that time to get other things in order.

            Other than that, my own view is that we should be using the whole situation as an opportunity to transition to climate/ecology mitigation and adaptation rather than trying to go back to normal. There are advantages to the border restrictions, and having a population that knows how to pull together in a crisis and do the right things. If we worked with that instead of against it, we might find there is less need for things like mandates in the future. But no-one I know who takes climate seriously believes that things are going to be easier in the coming decades. Covid is the practice run and I'd prefer we learned from it.

            • RedLogix 7.1.2.1.2.1

              Also don't get the "case numbers that have only a weak correlation with risk." argument.

              The two main reasons that stand out for me is the blatant Bayesian problem with false positives when only one test is done, and the other is that the underlying parameters of COVID, infectiousness and morbidity that are necessary to correlate cases with hazard vary immensely by time, season, geography, population, demographics, variants and govt policy – to mention just a few obvious confounding factors. This doesn't mean authorities should ignore positive test numbers, but then headlining them to the public as an indication of risk is not based on good statistics either.

              By contrast if a hospital admits 100 people with COVID symptoms then three weeks later you have a decently reliable number – the ratio of 'recovered' to 'deaths', with very few possible confounding factors other than quality of treatment.

              The problem is of course that positive cases is the leading indicator and it's necessary to drive public health measures like masking rules and lockdowns in a timely fashion – so people will tend to obsess over them. But the true hazard is only knowable from the hospital data weeks later.

              Your sentiments on isolating NZ from the wider world indefinitely are another theme altogether – and all I can say is you’re entitled to your view.

              • weka

                Your sentiments on isolating NZ from the wider world indefinitely are another theme altogether – and all I can say is you’re entitled to your view.

                I am interested in what the death rate is that would justify keeping the borders semi closed indefinitely. Presumably there is a situation where this would be reasonable. If people want to argue for opening the borders during the covid pandemic, I'd like to know where the boundaries lie. Because as I said, our views on freedom of movement is part of how all of us respond to the situation.

              • weka

                The problem is of course that positive cases is the leading indicator and it's necessary to drive public health measures like masking rules and lockdowns in a timely fashion – so people will tend to obsess over them. But the true hazard is only knowable from the hospital data weeks later.

                Are you suggesting the spread of covid isn't a hazard itself?

                • RedLogix

                  Are you suggesting the spread of covid isn't a hazard itself?

                  In a nutshell – yes. It's not the virus that is of direct concern, it's the illness that it causes. And the relationship between the two changes for many reasons I outlined above.

                  • weka

                    I'm still not getting it. Presumably the MoH should be counting, but the just not releasing the numbers?

                    • RedLogix

                      It's fair enough that MOH reports all the data it has, but almost everyone informing the public is leading with the least meaningful, most sensational figures.

                      I saw on ABC News tonight even ScoMo said that case numbers were no longer a useful measure. Everyone knows it's out there and now it's case of managing our way through this.

                      Wish us all good luck – there are no guarantees in life.

  7. GreenBus 8

    Good on you Weka bringing this up again. A point I keep seeing is that ME/CFS is brought on or starts from a previous Virus/Disease. GP's certainly like to think this way.

    Didn't happen to me that way. My ME symptoms started with the brain fog/bed spins straight out of the blue, and they were pretty extreme. Lasted 2 hours then went away.

    I was 23, super fit and hadn't been sick for years. I suppose everyone is different. I'm

    now 61 and still get brain fog most days. Not extreme but a bit like being stunned.

    Hard to think and hard concentration required. People give me wierd looks as I must sound disjointed.

  8. Dennis Frank 9

    This expert illuminates the situation:

    Since early 2020, we and other researchers have pointed out that acute Covid-19 is not only a lung disease, but actually significantly affects the vascular (blood flow) and coagulation (blood clotting) systems.

    A recent study in my lab revealed that there is significant microclot formation in the blood of both acute Covid-19 and long Covid patients. With healthy physiology, clots may form (for instance, when you cut yourself). However, the body breaks down the clots efficiently by a process called fibrinolysis.

    In blood from patients with long Covid, persistent microclots are resistant to the body’s own fibrinolytic processes. We found high levels of various inflammatory molecules trapped in the persistent microclots, including clotting proteins like plasminogen, fibrinogen and Von Willebrand factor (VWF), and also Alpha-2 antiplasmin (a molecule that prevents the breakdown of microclots).

    The presence of persistent microclots and hyperactivated platelets (also involved in clotting) perpetuates coagulation and vascular pathology, resulting in cells not getting enough oxygen in the tissues to sustain bodily functions (known as cellular hypoxia). Widespread hypoxia may be central to the numerous reported debilitating symptoms.

    https://www.theguardian.com/commentisfree/2022/jan/05/long-covid-research-microclots

    • Resia Pretorius is the head of department and a distinguished research professor in the physiological sciences department, faculty of science, Stellenbosch University, South Africa

    Solution: a dissolving agent to separate the blood molecules in those clots.

    • weka 9.1

      here's my prediction. That the mainstream (medicine, media, public) will spend a lot of time in the next few years focused on single explanations for covid. It's endothelium damage, it's molecules in the blood clots. Medical research will focus on isolated causes or explanations, because that's what the reductionist model does. It will generate some useful information, but will fail to adequately respond to people with LC because it can't see the wood for the trees.

      This is exactly what has happened with M.E. Medical research has focused primarily on chasing single causes instead of looking at the whole systems. This happens with other chronic illnesses too, and might be the dividing line between those that get good support and those that don't (illnesses with easy, reductionist explanations, illnesses that defy reductionism).

      • Dennis Frank 9.1.1

        I agree. Reductionism has inertial effect on thinking due to being so long institutionalised. Healers focus on the whole person, thus are holists. This reflects the common linguistic origin of heal/health/whole (https://www.etymonline.com/word/heal).

        Holism gets leverage via a focus on patterns. Seeing the wood from the trees is holist right-brain perception, in which a characteristic pattern informs us of the whole thing to consider.

        From a public policy perspective, it's analytical input plus integral input. You'll get scientists analysing relations between causes & effects, doctors learning from patients who get well. Both streams of input to be integrated into policy…

        • weka 9.1.1.1

          true, but the kind of policy you get in the end will be limited if everyone is using reductionist approaches. Let the reductionist scientists do their thing and generate data/information, but we need better ways of taking that and addressing the social and medical sides.

          I bet the Chinese have figured out some things, because they have both western medicine and traditional Chinese medicine paradigms to work with.

          • RedLogix 9.1.1.1.1

            You do realise these vaccines are the products of an entirely 'reductionist' pharmaceutical industry?

    • RedLogix 9.2

      Solution: a dissolving agent to separate the blood molecules in those clots.

      Eliquis.

      This medicine is used to:

      • prevent blood clots in your veins after a hip or knee replacement surgery.
        After an operation you are at an increased risk of getting blood clots.
      • treat blood clots occurring in deep veins (Deep Vein Thrombosis [DVT]) and clots in your lungs (Pulmonary Embolism [PE]) and also to prevent these from recurring.
      • prevent stroke and blood clots in a condition called atrial fibrillation, which is a type of abnormal heart rhythm.
        With atrial fibrillation, part of the heart does not beat the way it should. This can lead to blood clots forming and increase your risk of having a stroke.
  9. Gezza 10

    From the post:

    *(10% – 40% of people with covid end up with long term symptoms)*

    That's a pretty big uncertainty in the estimated % of covid infected people who end up with long covid. Hopefully more data & ongoing analysis will soon narrow that estimate – and/or segment it further if it varies eg by age or ethnic or country cohorts ?

    • weka 10.1

      part of the problem is that afaik there's no single diagnostic criteria as of yet. Which means that people studying LC are using different criteria. Is permanent loss of smell being counted alongside someone who is bed ridden? Additional problem there is that as a syndrome it probably needs a fuzzy edge definition, and that's going to make studying it hard.

      Additionally, there will be a large number of people with LC who never got tested. How to count them and separate them out from non-covid illness will be a challenge with a fuzzy definition.

  10. tsmithfield 11

    I am taking the stance below to provide a counterpoint to give some hope that things are likely to improve, rather than take a contrarian stance just for the sake of it.

    I think long covid was a thing, and a terrible disease. I am not so sure it is going to be a major issue going forward.

    Firstly Omicron tends to multiply in the upper respiratory track and much less in the lungs. While this makes it more transmissible, it also means it tends not to be so damaging to organs etc. So, if Omicron becomes the dominant strain of Covid in the world, then long covid is likely to become much less frequent in occurrence.

    https://www.theguardian.com/world/2022/jan/02/new-studies-reinforce-belief-that-omicron-is-less-likely-to-damage-lungs

    Secondly, there are rapid advances in treatments for Covid 19.

    https://www.dailymail.co.uk/news/article-9184653/Covid-treatable-disease-six-months-NHS-chief-says.html

    Those factors, along with mass vaccination efforts, should hopefully combine to reduce the incidence of long covid quite dramatically in the near future.

  11. Here is an interesting pod-cast.

    One (yet to be peer-reviewed) study suggests that having at least one vaccination reduces the likelihood of long Covid by 7-10 times. And even being vaccinated up to 4 weeks after contracting Covid reduces the likelihood of long Covid by 4-6 times.

    https://www.abc.net.au/radio/programs/coronacast/do-vaccinated-people-get-long-covid/13584082

    So vaccination is highly recommended.

  12. Dennis Frank 13

    Anyone who has a problem with brain fog, consider this from Google:

    Rosemary is a rich source of antioxidants and anti-inflammatory compounds, which are thought to help boost the immune system and improve blood circulation.

    Rosemary is considered a cognitive stimulant and can help improve memory performance and quality. It is also known to boost alertness, intelligence, and focus.

    Ten or so years ago I noticed I was struggling with mental focus for a couple of hours after waking. Did online research into herbal teas that I'd never needed before, discovered the word on rosemary & included it as essential ingredient. Problem went away almost immediately & never came back! yes

  13. pukahu road 14

    Long covid appears to be multifactorial in nature which means that only an integrated public health system can respond to the needs of that long covid patient.

    If a clinician ever writes a report on a patient's condition and uses words like idiopathic, multifactorial, complex and polyneuropathy to name a few then they probably will not be able to help that person except perhaps to write a prescription for medication that rarely helps and in many cases can cause troubling side effects.

    The NZ public health system and the specialist departmental clinicians generally do not collaborate and that will make the treatment of long covid extremely difficult.

    As you have stated Weka there will need to be swift changes in attitude from multiple sectors and it may have an overall long term effect on how those of us with "complex" needs are treated in the future.

    As usual Weka you have instigated an interesting and much needed discussion.

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