In a recent study published in the journal The Lancet Infectious Diseases, researchers investigated the efficacy of a novel synbiotic preparation named SIM01 against the symptoms of post-acute COVID-19 syndrome. They tested the formulation on a Hong Kong-based study cohort comprising 463 patients over the course of six months.

Their findings highlight that SIM01 supplementation significantly alleviated fatigue, bolstered memory, and improved concentration in these cases compared to the controls. Furthermore, general unwellness and gastrointestinal distress were significantly reduced in the cohort receiving SIM01.

This study marks one of the first steps in treating this hitherto prevalent yet poorly understood and untreatable condition. It may be the basis for future gut microbiota remedies for long COVID.

1News Reporter Joy Reid, who has been battling Long Covid throughout 2023, describes the difficult journey back to health and the strain it puts on her family.

“Mum, I’ve told Santa that I don’t want any presents this year if he can make you better.”

That was the moment I broke. My seven-year-old daughter asking Santa to heal me made me realise how much Long Covid isn’t just affecting me, it’s impacting the entire family.

Two years ago, I was a fit, active, bubbly and social. An energetic journalist, mother of three, wife and CEO of a small charity. I would pride myself on my career, the juggle and how much I could fit into a day, often on little sleep (thanks to my night-waking toddler).

Now, I’m mostly housebound. I nap each day, I can’t work, I can’t easily socialise or look after my children for long periods or carry out household chores. Even washing my hair can be a challenge at times.

I can’t handle loud environments, I struggle to walk more than a few hundred metres at a time and I have purchased a wheelchair to get around on my bad days. My heart is doing funny things, I have regular headaches and my sensory and autonomic nervous system functions are out of whack. The list goes on.

Long Covid is an emerging area of health, or in layman’s terms, not much is known about it. Experts predict anywhere from 2 to 20 per cent of people who get Covid-19 will get Long Covid in varying degrees.

In the US they call Long Covid sufferers the “missing millions”. And I know why, because it makes you disappear from the world as you knew it.

I’m 18 months post-infection, and nine months since my symptoms escalated. While Covid seems ‘sooooo last year’ for most of the population, for some of us, it’s our daily reality.

With no obvious cure, it can feel like a very long and lonely journey at times.

The thing is, Long Covid also has a dramatic effect on everyone in the sufferer’s support network. They are the ones picking up the slack and are also missing out.

“It’s so unfair you have Long Covid,” the kids say as I again explain why I can’t watch their sport or take them to the movies or go for a bushwalk. Long Covid has redefined much of our 2023.

My brain and body don’t function like they used to. On my bad days, the brain feels like it’s filled with sludge and I am dragging weights off every limb. It’s a constant battle with wanting to do things but the body not being willing to participate.

I’m writing this piece over several better days (with breaks) in the hope it might help someone else understand and give a voice to those still suffering with this virus. That’s where I get my hope from, reading the stories of others with it and knowing I’m not alone.

Unhelpful comments

I mostly look normal from the outside, except on the days when my complexion is a bit grey. But people who know aren’t sure how to talk to me.

There are those who mean well and say, “Oh, you’re looking so much better,” not realising that the only reason they’re seeing me is because I’ve rested for days beforehand and will have to again when I’m home.

Then there are the vocal sceptics, who share their unhelpful doubts. “It’s in your head,” they say. “It’s due to your Covid vaccination,” or they simply laugh and ask if Long Covid is actually a thing. I can assure you, it’s a thing!

I call it my Life Interruption as my life looks utterly different now. I’ve struggled with accepting this new me, with the loss of self. Who am I if I’m not able to be journalist - a career I’ve spent nearly 20 years in? Or who am I, if I’m not the mother on the sports field side-lines or at school assemblies (yes, I was always the loud one)?

I am still someone. Someone who hasn’t disappeared, even if that’s very much what it feels like. Someone who hasn’t given up hope.

I’m working with the GP, nutritionist, respiratory physio, sports massage therapist, occupational therapist, health coach and counsellor. I’ve tried hyperbaric oxygen therapy, lymphatic massage, medication and I'm on daily supplements.

I’m trying. But I’ve learned that not one single thing or person is a magician, as much as I’d like them to be. It gives me hope to be trying something though.

The research from overseas suggests people do recover to a point where they can partake in life again, it’s just not always the life they once had.

At the moment I feel like I’m living a gigantic equation, constantly working out if today is a good or bad day, how much energy I have and what to spend it on and what to sacrifice. I feel like I’m always trying, not able to be carefree or to let my hair down for fear of the consequences.

Community of Long Covid sufferers

I’ve found solace with other Long Covid sufferers. And I’ve come to realise, while I can’t control my pace of recovery, I can control my attitude (or at least I try to control it).

I don’t want to get caught up in things I can no longer do, and continuously grieve for what my life used to be so I’ve learned to mostly accept this new life. In fact I’m finding plenty of moments of joy in it - my morning cup of tea, reading books on the couch with my toddler, knitting (a new hobby) and I love my daily naps as they give me a second chance at the day.

But it’s not always easy. This time of year seems tougher - missing Christmas parties, not being able to watch my daughter dance in the Santa Parade and then seeing the kids’ Christmas wish lists saying “for Mum to get better”. If only it were that easy.

It’s been an extraordinarily humbling experience. I’ve had to learn to accept help - not something I’ve traditionally been good at as I was always the “helper”.

I’m adapting to the new normal and I take great pride in celebrating the wins, especially the brain function that’s returning. I’ll take brain health over physical health any day, although I hope I don’t have to choose and that the improved brain health precedes the physical recovery. Fingers crossed.

But it’s not my journey alone. It’s important to acknowledge the toll this journey is taking on those around me. My kids make no secret of how frustrating this is for them, but it has also fallen on my colleagues, extended family, neighbours, friends, and of course my very patient husband to help survive this season. However long it lasts.

It’s impacting on all of them a lot too.

I owe them so much and I’m so very grateful to them. It’s in these moments that you realise how lucky you are to be surrounded by so much love.

I don’t know what the end of this story looks like or when it will come, but I know it’d be easy to get lost in the pages. For me, the key to making it to the end will be in finding joy in the little things, and laughing as often as I can. Because having people to walk this journey with is more than enough reason to smile.

Every day my 10-year-old asks, “How would you rate today, Mum? Out of 10, with 10 being the best, and one being you’re almost dead?”

These past days I’d say a solid five. But we all know it might not last, so I’ll make the most of the fives in case tomorrow is a two. Deep down, I’m hoping for a Christmas miracle and it’s closer to 10.

I can't imagine how terrifying and frustrating it was for you to be one of the early sufferers and *still* dealing with it years later.

Once again, I DO look. I just have no related experience so don't post.

Jay, i never thought you don't look... i'd be more surprised if you didn't

On a more serious note i can't thank you enough for opening this corner of the Forum on this subject, i doubt you'll ever know how much of a lifeline it's been for me and for that i'll never be able to thank you enough.

That even now you're allowing the discussion to continue is equally amazing!

Mostly because as you say, it's a computer Forum and in 2019 would you ever expect to have threads like this open... that decision was yours and yours alone.

One of the most consistently reported symptoms of long COVID is the tendency for strenuous exercise to make the condition worse. Not only does long COVID reduce a person’s capacity for exercise but often broader symptoms will flare up in the days following a session. This has been dubbed by researchers post-exertional malaise (PEM), and it’s a relatively strange phenomenon.

In most instances of rehabilitation, exercise is a beneficial thing. And when a patient is struggling with exercise there are usually obvious physiological explanations. Maybe the heart or lungs are not functioning well, or maybe an extended period of illness led to a kind of physical deconditioning where the body has generally weakened.

However, in many long COVID cases there are no obvious signs to explain these exercise limitations. Many patients have been subjected to a barrage of conventional tests only to be told they seem to be completely fine. But several new studies are starting to figure out the mystery behind long COVID PEM. And although the findings don’t immediately point to solutions, they affirm these long COVID-related exercise intolerances do have physiological foundations... continues

...i wish i'd known what is mentioned in this article back in Jan/Feb 2020 because if i had none of the past 4 years might have happened to me... most notably vitamin D, which i now know is critical to the immune system that due to working night shifts for 19 years along with living in Northern Europe almost certainly meant my Vitamin D levels were defficient and not capable of sustaining a fully functioning immune system that was being invaded by this novel virus.

Professor Robert Clancy has found similarities between long covid and long post covid vaccination syndrome. Here he shares new findings on the theory and practical medical management of these two conditions.

Long COVID is a double curse in low-income nations — here’s why
Not only is the prevalence of the condition poorly understood, but it’s also often ignored by physicians and the wider public.

Question

Long Covid seems to have a lot of symptoms in common with ME/CFS and I know that the MEA has been pointing this out since it soon became apparent that some people were not returning to normal health after catching Covid-19.

One of the important differences between Long Covid and ME/CFS appears to be how people with both conditions react to vaccinations. Those with ME/CFS often report an exacerbation of ME/CFS symptoms and this can sometimes be quite severe and persistent. But there are now numerous reports about people with Long Covid feeling a lot better after having a Covid-19 vaccination and in some cases even recovering from Long Covid. Do we know why this is occurring? And could it have any implications for ME/CFS?

Answer

This is a very interesting and important observation.

The simple answer is that we just don’t know why some people with Long Covid are reporting positive reactions to the Covid vaccines. Among the theories that have been put forward are that the vaccine is eliminating persisting pockets of virus, or viral fragments, in tissue. However, the evidence for persisting viral infection in Long Covid isn’t very strong. Another possible explanation is that a vaccine is ‘resetting’ an abnormal over-reactive response to the triggering infection by the body’s immune system. This abnormal immune system response also seems to occur in ME/CFS when the trigger is an infection.

Vaccinations occasionally act as triggers for the development of ME/CFS – which is not surprising given the fact that vaccines work by mimicking the action of an infection on the body’s immune system in order to produce protective antibodies against a specific infection. And infections are the commonest trigger factor for ME/CFS. When it comes to pre-existing ME/CFS, a significant number of people report that vaccinations cause an exacerbation or relapse of symptoms. We do receive occasional reports of people with ME/CFS improving or feeling a lot better after their Flu vaccination and we've heard of some who felt better after their Covid vaccination, but these improvements are often short-lived and don't seem to effect many people.

It’s possible that this improvement is occurring because it involves a vaccination against the infection that caused Long Covid. It is, of course, very unusual for people with ME/CFS to be vaccinated against the infection that triggered their ME/CFS. We will continue to follow this research with interest. If it does turn out that the Covid-19 vaccines are a way of treating Long Covid, possibly by ‘resetting the immune system’, we will have to explore whether some sort of similar immune system challenge could also be effective in ME/CFS. Once we know for certain that vaccinations are having a beneficial effect in Long Covid, and we understand the reasons why, it could have implications for the treatment of ME/CFS.

Recent studies report that the latest formulation is 54% effective - https://www.cdc.gov/mmwr/volumes/73/wr/mm7304a2.htm

What is added by this report?

Receipt of updated COVID-19 vaccine provided approximately 54% increased protection against symptomatic SARS-CoV-2 infection compared with no receipt of updated vaccine. Vaccination provides protection against JN.1 and other circulating lineages.
Edited for emphasis.

I may be out of touch on this but it seems to me that even the most current vaccine is not meant to prevent infection but, rather, to lessen the affects of an infection. Sure, there are cases, I'm sure, where a vaccine has prevented infection but, it seems to me, that is not the goal. It seems to me that the goal is to make what could be a fatal infection one that has much more less drastic results.