To wonder why covid is so rarely mentioned as a factor in increased disability figures?

[Grapeexpectation]

It seems so odd. Why aren’t covid infections and their aftermath on health ever mentioned as factors in increased absence from school, long term sickness, people having to stop work etc? We already know that millions have long covid, reinfections double the risk and that each wave is going to increase the numbers, so why is it so rarely mentioned? It makes so little logical sense to compare figures to pre-pandemic, without mentioning the health impacts of the virus involved, yet it happens frequently. What’s the rationale for not mentioning it as a factor?

Here:

https://www.bbc.com/future/article/20240606-how-long-concussion-could-offer-new-insights-into-long-covid

This is very interesting.

https://www.bbc.com/future/article/20240606-how-long-concussion-could-offer-new-insights-into-long-covid

Sorry, double post lol

@Grapeexpectation Our Long Covid service ( we still have one) has a current wait list of 1 week …which perhaps explains the drop in demand across the country and why many LC specific services have closed…I can imagine in many areas the services have been merged with those offered to eg. CFS/ME . The clinicians on our area are basically seeing that Long Covid fits into the same autonomic nervous system dysfunction umbrella as CFS/ ME , fibro etc. There have always been many of us living with the latter , we just weren’t “special “ enough to have much concern devoted to our needs! Your hyperbole does not help !

And another one:

https://pmc.ncbi.nlm.nih.gov/articles/PMC10923549/

Not "was" global, is global. Covid hasn't gone away. And it hasn't got "milder."

Apart from Long Covid, it can cause or worsen all sorts of other problems—so it is contributing indirectly as well as directly to people's ill-health and the demand on the health service and the benefits system.

Not directed at me, but I am older than this poster and was in a civil service career for over 20 years when I got long COVID. I was told I was too young for ill health retirement, and that because the prognosis for long COVID isn’t known, they couldn’t guarantee that I’d never be able to work again.

My theory is a bit different. I’ve been working with someone who has really helped me.

The brain is neuroplastic. When something bad happens it closes itself down to protect you. If you try and move about it triggers symptoms to keep you in place. It just wants to keep you safe at any cost and will do anything to do this. It doesn’t like change and will create crashes to keep you safe.

when l was at my worse l couldn’t bear light or sound. Then id had enough, and ignored them and they went. Of course it immediately put something else in place, but l ignored that too.

This is why these things happen after traumatic illnesses or incidents. The brain goes into survival mode. Particularly after LC because it messes with the nervous system

Very interesting you say this. I remember during my post concussion syndrome, how I pushed through the symptoms and it made them hugely worse, very much the same way as post exertional malaise affects ME patients.

I've read now that apparently the way of thinking around concussion recovery has changed and that doctors no longer just recommend rest etc to get better. However, that would go against my past experience, but I can say that my recent concussions did improve more when I used my brain gradually.

I certainly agree with you about neuroplasticity, definitely. My poor addled brain has suffered a lot, especially when I was injured permanently by an off label antipsychotic after my head injury, and it gave me a neurological involuntary movement disorder called tardive dyskinesia 😞

My brain has improved quite significantly though, so neuroplasticity has made a difference 👍

Oh, hardly controversial.

In MNland, the vast majority of posters were declaring it "just a cold" all through the pandemic. They still insist it is "just a cold" - knowing better than the health authorities, or the doctors who treated it and died in the process, and all the scientists and researchers who have studied its effects on multiple body systems.

And if there is any rise in deaths, or disability, then these same posters declare that down to the vaccine.

Because it's too insurmountable and hard to swallow. There isn't any fix for it so far better to put our head in the sand and pretend that all those ill people can be jollied or starved back into work.

I hope you don’t mind me saying that it’s worth being a bit cautious, as there are unfortunately people and programs out there trying to make money from people with chronic illnesses like Long Covid by using scientific-sounding language that isn’t backed up by evidence. Neuroplasticity and mind body ideas are pretty popular examples of that.
From what research shows, Long Covid isn’t caused by the brain protecting us by creating symptoms or shutting things down. It's more like an ongoing physical condition involving things like immune system dysregulation, inflammation in the brain and blood vessels, viral persistence, and issues with the autonomic nervous system. Those can cause neurological and body-wide symptoms.
Neuroplasticity can potentially help with recovery, but not in the sense of the brain creating symptoms to keep us safe. It’s more that some areas of the brain can, in many cases, rebuild or reroute pathways once the underlying physical problems start to get better. It varies from person to person, but many people with Long Covid are seeing improvement of their symptoms naturally over time, and it can be easy to mistake that as being caused by something else.
That said, if thinking about it in those terms helps you cope with your symptoms or gives you a sense of control, there’s nothing wrong with that. I’d just be careful with anyone who presents that idea as an explanation or a treatment, especially if they’re charging for their services, since that’s not what the science actually shows.
I don’t mean to sound negative, and obviously I'm just a random stranger on mumsnet so you are under no obligation to listen to me! I just wouldn’t like to see anybody get misled, especially as some of these programs are very expensive. I really hope things keep improving for you and that your health continues to get better. 💐

Don’t push through! Just do tiny bits of something to at a time to let the brain get used to stuff. Then keep adding it bit by bit. I was scared to walk at first. But in about 6 weeks l went from bedbound to 6k steps.

I can’t push through either

I agree. My LC was chronic fatigue, and it’s that what I’m talking about.

I don’t for one minute think heart or chest issues are like that. It was CF related.

I totally agree.
It's had no impact on my family and I luckily. However I know quite a lot of people who had previously been fit and well, who have had ongoing health struggles. An old school friend had to leave her job as she now has been diagnosed with ME which she feels she developed after contracting covid. I had another friend who is 30, who had ongoing issues with pulmonary embolism! Despite being completely fit and well beforehand. She's stil working but has had long stretches off.
So I know its done a number on many people.

So they can ignore the real impact, victim /illness shame those that are suffering from it long term so as to keep it from being legitimately real. They don’t want the economic burden of addressing it. It’s horrific the amount of bona fixe illnesses & conditions /disabilities that have been minimised & sufferers gaslit still today. Being called mentally ill, malingerers, lacking in moral fibre effectively for saying they have x. Ableism, survival of the fittest - all of that good stuff.

@ArseInTheCoOpWindowThe same applies to chronic fatigue triggered by Covid really. It’s not fully understood yet, but there’s enough evidence to show that it’s linked to physical changes like immune system dysregulation, problems with mitochondrial energy production, inflammation, microclots affecting blood flow and oxygen delivery, and issues with the autonomic nervous system. All of that affects how the body makes and uses energy, which is why even small amounts of activity can leave you exhausted or trigger crashes. Anyway, I'm sorry you're having to deal with chronic fatigue, it's a horrible thing, hope things continue to get better for you.

Absolutely! Attitudes have been getting worse and worse recently from what I've seen, it's incredibly depressing.

@Sundayme just to say within LC NHS services they are also linking it to autonomic nervous system dysfunction - which also does fit with immune dysfunction, inflammation - so it IS a "mind-body" problem .In the west we are very used to separating out physical and mind/emotional but they aren't separate from each other! When we are afraid,angry, sad, happy we get very real physical responses and once you are aware of the role of fight/flight/freeze on our nervous systems it can help learning techniques to reduce this. That is not ignoring possible other influences eg.mitochondrial issues /genetic vulnerability. People do indeed recover going down various routes but learning that we can influence our physical symptoms by using mindfullness ,mind -body techniques etc is important to understnd.... luckily so much more good info is available for free now online.

Mine really improved with lots of meditation.

Looks like a rough split between being unreasonable and not being unreasonable. However, nobody has said why, given the data, it’s unreasonable to mention it as a factor.

https://ifs.org.uk/publications/health-related-benefit-claims-post-pandemic-uk-trends-and-global-context other factors perhaps? the growth of mental health claims is what stands out compared to other countries, you would have expected to see a massive growth in those claiming for LC if it was as significant as you say?

ArseInTheCoOpWindow Thats great then if you've found something that works for you.

I also know several people who were perfectly well before COVID, then disabled by it. Please don't misunderstand. I'm not saying it doesn't happen, it most certainly does. I'm just suggesting why some of the LC cases are not counted in LC figures, as they are put down as exacerbations of other conditions.