To wonder why the fuck long covid isn’t considered a serious outcome

[Clutchingatfog]

Why is covid often only talked about in terms of hospitalisations or deaths? Even in determining whether we are eligible for vaccination, long covid isn’t factored in. Not vulnerable to covid? Are you kidding me?! Oh, you don’t factor in that vaccination reduces risk of long covid either? Got it. FFS.

Where is this fantasy land where people’s risk of LC doesn’t increase with reinfection, where people are magically spared if they are healthy, where kids don’t get it, where only people who are vaccinated/not vaccinated (depending on stance) get it, where only people who have severe cases get it, where long covid was something that used to happen earlier in the pandemic, where most people fully recover, where you are not left to rot. I want to move there!

If you have LC or now have to care for someone with LC, please tell me you understand where I’m coming from.

@Wackadaywideawake · wrote:

"My brother recovered from long-standing ME when he got divorced"

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I wonder when, and diagnosed by who?

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By focusing on fatigue, calling ME 'Chronic Fatigue Syndrome' and ignoring all the other symptoms and patterns of ME ....

.... such was/is the refusal by the medical profession to use valid existing ME diagnostic criteria, for decades, and the culture of contempt about ME within the medical profession - that for many years Drs were throwing ME diagnoses at anyone who was tired.

They created a 40% misdiagnosis rate. That's people diagnosed with ME who did not meet any valid ME diagnostic criteria.

That's people with tiredness. Also people with other diagnosable and treatable diseases, casually given an ME (or CFS) diagnosis because fatigue was one of their symptoms.

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Those misdiagnosed patients were left without treatment for their actual diseases for years, because the Royal Colleges of Medicine (1996) dictated that once a 'CFS' (or ME) diagnosis was made - then No More Medical Tests should be done.

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Dr Julia Newton reassessed all ME (CFS) diagnoses in the Newcastle region in 2008/9:

'Of the 40% of patients subsequently found not to have CFS the most common diagnosis was fatigue associated with a chronic disease (47% of all alternative diagnoses); 20% had primary sleep disorders, 15% psychological/psychiatric illnesses and 4% a cardiovascular disorder.

https://www.meresearch.org.uk/research/cfs-service/

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The often used UK Oxford ME Diagnostic Criteria was so vague that it often diagnosed healthy people who were tired.

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It's kind of cute that you are sneering at a professor of sports medicine and then in the next breath straight -.faced quoting a tiktoker

Maybe you missed but I was not stating the tiktoker was an expert in anything , simply showing how common it is for cancer sufferer to be talking about cancer being psychosomatic, not quite the outrageous rarity you paint it as.

if you can’t be arsed to read anything, just stop responding. You’re wasting my time and being rude

It's horrific.

From comparing myself to others in the NHS Long Covid treatment group I was part of, I'd say my case is relatively mild - but it has nevertheless changed my life.

I was / am very Type A. I ran long distances. I worked all the hours. I was a fast thinker, a fast walker, doing all the stuff all the time. Now I struggle to play physical games with my kids. Often have to say no to picking them up. On bad days, I have to stop on my way upstairs. Work is hanging by a thread. I get randomly breathless. I potentially have some weird heart thing going on post Covid, but still at least a year off an NHS appt. Exercise was my go-to stress relief, and now every time I attempt it, I'm set back by days. I feel like I have aged a decade in the year since getting Covid.

But the very worst thing is the brain fog. I forget things constantly, can't find the words I want, say the wrong word when my brain has thought the right one... Of course, I've been down an early dementia rabbit hole online - it actually has me really frightened.

But you're right - it just doesn't seem to figure in the conversation. Nobody has answers, and you're basically left to deal with it.

In that case I'm sorry, it did sound like you were being flippant but if you honestly didn't mean it that way, thank you for your good wishes.

I really hear you with the exercise as stress relief. Its really tough to have lost that outlet.

Anything that calms the nervous system without causing over exertion is good. It sounds mad, but 'sitting down dancing' (or even lying down) can help soothe difficult emotions and calm things down a bit.

Best wishes on your recovery journey.

This link was shared in the NHS LC clinic sessions I had. I have found breathing practise to be really helpful:

@NameChange0101010101 so did I - I posted about it earlier - realise it doesn’t help everyone, but certainly in my case I started recovering when I did30 minutes a day of this on the bed plus some light stretching - my oxygen levels were low too when I started monitoring at request of hospital and this helped get those back up to ‘ok’

You've only met one person with LC that you know of. If you'd met me, I wouldn't tell you I'd got it unless it was relevant in that moment. ("Sorry, I really can't walk up those stairs because...") It really is super boring having to explain it to people (and also risk being ridiculed, as I have been, and told it's probably hay fever, or whatever.).

I could've written your post.

The only thing I can say is that I have improved. I've had it for five years, and I generally have more energy and struggle less with remembering words than I did a year ago. But I do have to pace myself, and if I overdo it, I have to rest in order to recover.

One thing of interest I've learnt from this thread is about being in a constant state of "fight or flight". That makes sense, so finding ways of tricking our brain into feeling safe and relaxed seems to be a good way forward.

Then the person you know is a lot luckier than many of us on here who have shared out experience of long covid, @Sometimeswinning.

I am disabled by long covid - I get DLA (the Scottish version of PIP), and have a blue badge. I struggle to walk any distance at all, I haven’t cooked a meal in years, I am permanently exhausted - muscle-aching, painful exhaustion, and get breathless just walking back from the downstairs loo.

LC has decimated my life.

Put your hand on your heart and tell your brain it’s safe. Tell it this as much as possible. This is what pushes it forward.

Not RTFT (sorry!) but from what (very little!) I know of Long Covid, and having read a few scientific articles about how it is now being treated in similar ways to concussion patients, i can attest it is a very real and debilitating condition. I've had post concussion syndrome after a head injury a decade ago, and it was sp dreadful that it gave me a severe breakdown.

If Long Covid symptoms are similar and due to the same type of mechanism as concussion ie inflammation etc then I cam fully understand how hard it is.

I

'When the Body’s Alarm Won’t Turn Off: New Clues to ME/CFS from Exercise Research'

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Imagine if a fire alarm kept ringing long after the smoke was gone. That’s similar to what happens in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), where the body seems stuck in “high alert” mode.

A new multi-center study, co-authored by Bateman Horne Center’s Chief Medical Officer, Dr. Lucinda Bateman, sheds light on why even small amounts of activity can leave people with ME/CFS feeling much worse. This hallmark symptom is called post-exertional malaise (PEM).

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The study at a glance
Researchers at Columbia University and across the U.S. collected blood samples from 56 people with ME/CFS and 52 healthy volunteers, before and 24 hours after a carefully monitored exercise challenge. Then they ran an unusually broad set of tests, looking at immune activity, metabolism (energy use), and proteins that keep tissues healthy.

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Key findings:

• Immune system on edge: The immune system in people with ME/CFS reacted more strongly to microbial “danger signals” than in healthy controls, even before exercise. After activity, some responses looked blunted, suggesting a system that is both over-reactive and easily exhausted.
• Energy problems: Cells in ME/CFS appeared to have trouble producing clean energy after exercise. Researchers saw signs of stalled mitochondria (the “power plants” of our cells), along with chemical markers that reflect stress and fatigue.
• Gut barrier leaks: Signals suggested that the lining of the gut may be more permeable, allowing microbial fragments to “leak” into the bloodstream and trigger inflammation.
• Brain fog explained: After exertion, tryptophan (an amino acid important for serotonin and brain health) was shifted away from making protective molecules and toward producing inflammatory byproducts. This may help explain the disabling “brain fog” many people with ME/CFS experience after activity.

The results, taken together, suggest an immune system that’s hypersensitive to danger signals, a metabolism struggling to generate clean energy, and a gut-tissue barrier that may be letting inflammatory sparks fly. Crucially, many of these abnormalities worsened after exercise and tracked with symptom severity.

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https://batemanhornecenter.org/when-the-bodys-alarm-wont-turn-off/?fbclid=IwY2xjawNaCO1leHRuA2FlbQIxMQABHpwJ9RCP65S0Kvd68jE4pdWKQwfabSI94i9H28pCvPCOo30kA7mxcQJqG0uC_aem_coM1tXSkZC393ew_ok-PKA

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My youngest (24 yrs) has been fobbed off by GPs, Neurologists and ENT consultants for pain, weird sensations in their body and facial pain for months. They have fatigue all the time, pain and weakness in the body and migraine like headaches all the time. CT scans and MRIs show nothing (privately funded).

I believe that LC could be the reason - they had covid 3 times in a year, tonsillitis straight after the last bout and several rounds of antibiotics that I've now found out can cause issues with the nervous system.

I am currently their full time carer and also juggle full time work (and care for 2 others).

Not sure what a LC diagnosis will bring treatment wise, but at least we would know what is causing this.

So yes OP, I hear you.

There are many people who probably assume I’ve slipped off the radar due to young children etc. Like many others, I worked in an incestuous industry, so don’t want to advertise memory loss and ….well loss of ability to do most things really. If there was a point where the general trajectory was improvement rather than decline, it would be different. I assumed I would get better over time.

If parents see me on a school run, they don’t know that that is pretty much all I will be able to do that day. I have explained to some people outside of my immediate family and close friends - some get it. I have no idea how many people have it that I know in my wider circle. Those that seem to improve for whatever reason anecdotally seem to be those that were hit quite hard by an infection. I also don’t know how many people in my wider circle have cancer, or are struggling with perimenopause, or are hiding the early stages of pregnancy etc. It would seem pretty lucky if there were no children or other parents with long covid at my kids’ school. I will carry on going through the responses bit by bit.

I still haven’t seen a reason why IABU, or at least a logical one as to why public health can ignore the research and the impacts of covid infections.

I’m so sorry for the loss of health and life that have been raised on this thread. 🫂

Facial pain!😫

God I’ve had this. It’s been hideous. It’s inflammation of the trigeminal nerve. Agony.

Under the eyes, side of nose, cheekbones, behind the eyes, above the eyebrows, temples. Awful.

Its gone now though.

This is what my OT has told me, the exact same thing. That’s why meditation is so important. It calms the nervous system.

Only when l started doing this did any of my symptoms go away.

Me too since Covid, facial pain in trigeminal nerve acutely and agonisingly in attacks and now long term at a much lower level well controlled with calcium channel blockers. They aren’t sure if this ongoing version is migraine related or the classic neuralgia but just so glad the absolutely horrendous painful version hasn’t returned recently. Some people have that TGN acute agony in a really ongoing way and my heart absolutely goes out to them.

@ArseInTheCoOpWindow yes it was meditation and breathing exercises that kick started a recovery for me - it was slow and a really gradual thing but it did help me a lot -

@ArseInTheCoOpWindow I actually got burning eyes and forehead and a flicker in my eyelids too at times, that switched sides - it was all really really odd and I still get it occasionally too if I get a cold or Covid

I got them too.

Ive been traumatised by this illness.

Yes test etc achieve nothing. Your immune system is damaged. Noone knows how to fix it. Struggle on. Best wishes. 20 plus years M E and fibromyalgia. Ruins life. People bored, lack empathy, assume all illness can be cured. Then try to fight for £ help to exist .

I asked about long covid support for my 24 yr old child with neuro symptoms and fatigue, there is nothing available at all. Ridiculous really seeing as Covid is here to stay and can have serious long-term side effects.