Long Covid

[Brainaddict]

The Guardian has launched a Living with long Covid section and starts with words from the WHO boss:

Living with long Covid | The Guardian

<p>Millions of lives are impacted by long Covid. The Guardian takes a closer look at the illness, and those who live with it. See all <a href="https://www.theguardian.com/society/long-covid">our long Covid coverage</a>.<br></p>

www.theguardian.com

The data is clear: long Covid is devastating people’s lives and livelihoods | Dr Tedros Adhanom Ghebreyesus

The impact of long Covid needs urgent action – and there are five key elements to drive the effort forward, writes the WHO director general

www.theguardian.com

WHO chief urges immediate action to tackle ‘devastating’ long Covid

Exclusive: Dr Tedros Adhanom Ghebreyesus calls for ‘sustained’ efforts to help people still experiencing ‘prolonged suffering’

www.theguardian.com

Tedros then lists the 5 key elements, but I better not quote the whole thing.

Yeah, Tedros' intervention there is a step forward in some ways. There are still plenty of doctors and (I've been told) health systems of entire countries that don't think long covid is real. So it's important for him to talk about it in a way that leaves no doubt it is real and needs to be addressed.

But I was a bit disappointed he referred mostly to a rehabilitative approach (and returning to normal), which is more relevant for people who were in ICU, and didn't talk about systemic dysregulation and the fact that we know from other post-viral conditions that some might be affected for many years. In fact he didn't link it to other post-viral conditions at all, which for me is always a sign of people not really getting it. If you think long covid is some bolt from the blue with no reference points in previous medical experience you'll waste a lot of time researching things we already know.

Anyway, two steps forward one step back. It is important in some ways.

 

[elbows]

Long Covid: What's changed, and what we know now

More than two million people say they have symptoms of long Covid. How are they being treated?

www.bbc.co.uk

That covers a bunch of aspects and here are just a few of them:

It's easy to assume that new cases of long Covid have significantly decreased, given recent research suggesting the risk of developing long Covid from the Omicron variant is lower.

However, the sheer scale of cases over the past year has resulted in more than a third of people with long Covid acquiring it during the Omicron wave, according to the ONS.

Long Covid treatment across NHS services in England still varies hugely too, according to the Royal College of Nursing, with some services treating it as a physical condition but others as psychological.

After waiting more than 19 weeks I was finally assessed in August but was left feeling hopeless, with a one-hour Zoom call offering diet and pain management advice - but no further investigations, referrals or treatment.

The British Medical Association (BMA) has called on the government to increase funding for long Covid clinics to deal with ever-increasing patient numbers. The BMA says that NHS England's 2022 strategy set out in July failed to announce any new funding.

Some, including me, have also been targeted by strangers on public transport because they are taking measures to protect themselves from re-infection by wearing a mask.

Sophia says that a lack of compassion for the condition has also made her life even more difficult: "People don't get it. I'm constantly having to explain and it's really hard to get through to people.

"To a large degree people want Covid to be over, and to hear about people suffering doesn't really compute with the idea that it's 'all gone' and in the past."

For the two million people in the UK estimated to be dealing with the life-changing effects of the condition, they too wish that it was over - but are relying on new research, improved treatment, and kindness from others until that time comes.

 

[Hollis]

In the grand scheme of things it's nothing, but my 'covid cough' has persisted for a year, and sure isn't getting any better.

 

[Brainaddict]

In the grand scheme of things it's nothing, but my 'covid cough' has persisted for a year, and sure isn't getting any better.

That sucks. Have you tried the doctor about it? They might actually be better at addressing that than the classic LC fatigue etc

 

[Hollis]

Nah - I haven't been near the doctor... but several people have commented on it.. so I might get it checked out now.

 

[elbows]

One way to look at the cost:

Long Covid is costing the UK up to £1.5bn a year in lost earnings, researchers say, after the number of people suffering persistent symptoms of the virus doubled over the last 12 months.

The Institute for Fiscal Studies (IFS) said the impact of a rise in long Covid cases from 1 to 2 million showed it was likely to be “a significant part of the pandemic’s legacy”.

Using data from the UK Household Longitudinal Study and the Office for National Statistics (ONS), the IFS said about 110,000 of the 2 million sufferers – who must report symptoms for at least three months – were signed off sick, with the loss 4.4m working hours a week.

On average, those who stop work because of long Covid would be losing £1,100 a month in earnings, adding up to a total loss of income of almost £1.5bn a year, though employers that pay to cover sick leave would pick up some of the tab.

Long Covid costing UK workers up to £1.5bn yearly in lost income, says IFS

Researchers say impact of rise to 2 million cases meant it was ‘a significant part of pandemic’s legacy’

www.theguardian.com

 

[Brainaddict]

So I just got discharged from the Kings long covid clinic. They had done a telephone review of my case two weeks previously but didn't tell me that I would be discharged as a result. The discharge letter recognises the impact on my life but says "we are discharging you and hope you continue to improve". Now, firstly, I had only said that I was up and down, not continuously improving. Secondly, 'hope'? Is that an authorised treatment now?

On the one hand I feel very annoyed and it's tempting to make a complaint. On the other hand they can do nothing for me, worse than nothing in fact as Kings is dominated by the CFS gaslighting crew. So I shall not bother, since there's little point in being enrolled in a Long Covid clinic that doesn't really believe in Long Covid, but it is outrageous.

 

[Brainaddict]

On a broader health sociological point, this was the second time doctors at the clinic wrote down something entirely different from what I told them. Both times it was clearly them writing down things that they wanted to believe or that confirmed their biases. This must happen a lot in healthcare, and I'm sure more to women and minorities. But in this particular instance it seemed to be as a result of them having an entirely incorrect model of the illness in their heads. They literally couldn't hear and understand the things I said because this model stopped them. I wonder if doctors get training in listening properly yet? That would be a step forward in health care I think.

 

[Aladdin]

It's really another epidemic. People dont seem to want to know about it. And as someone already said, most want to forget covid and the restrictions .

I went out for the first time in 2 years last week. Met a friend I had not seen face to face since Christmas 2019
We went for breakfast. I wore a mask in the place and got a fair few funny looks.

My brother is a hospital dr .. he worked with covid patients throughout 2020 and 2021. He is still very very careful. Wears full hamsat when seeing a covid patient..even now. He is someone who went through guillaine barre when he was 17. He has said straight out that he would rather die than get long covid. A colleague of his had to stop working because of long covid...the guy was a consultant physician...now he can barely get out of bed.

People really need to remember that covid is not gone away

 

[ska invita]

So I just got discharged from the Kings long covid clinic. They had done a telephone review of my case two weeks previously but didn't tell me that I would be discharged as a result. The discharge letter recognises the impact on my life but says "we are discharging you and hope you continue to improve". Now, firstly, I had only said that I was up and down, not continuously improving. Secondly, 'hope'? Is that an authorised treatment now?

On the one hand I feel very annoyed and it's tempting to make a complaint. On the other hand they can do nothing for me, worse than nothing in fact as Kings is dominated by the CFS gaslighting crew. So I shall not bother, since there's little point in being enrolled in a Long Covid clinic that doesn't really believe in Long Covid, but it is outrageous.

that must be so frustrating
ive just come off the phone with my GP who ive spoken to three times in the last two years and he has always tried to downplay that I have long covid - did it again today - he also said theres no point going to a long covid clinic as they cant really do anything. Did you get anything useful from your covid clinic experience?

*for me after a summer of good breathing ive now had two months of a return to breathing problems.
GP reckons that rules out long covid as it went away for a spell so this must be something new - he might be right - either way I now seem to have long term breathing problems that need managing. bit of a merry-go-round.
for me its breathing exercises that have the most notable effect on me - need to regain discipline on doing those

 

[kabbes]

On a broader health sociological point, this was the second time doctors at the clinic wrote down something entirely different from what I told them. Both times it was clearly them writing down things that they wanted to believe or that confirmed their biases. This must happen a lot in healthcare, and I'm sure more to women and minorities. But in this particular instance it seemed to be as a result of them having an entirely incorrect model of the illness in their heads. They literally couldn't hear and understand the things I said because this model stopped them.

This has been the kabbess’ lived reality for the past 5 years. Again and again, she gets copied into a letter between doctors that does not contain what she told them.

I wonder if doctors get training in listening properly yet? That would be a step forward in health care I think.

Apparently they do not. Or, if they do, they don’t listen to it.

 

[Brainaddict]

that must be so frustrating
ive just come off the phone with my GP who ive spoken to three times in the last two years and he has always tried to downplay that I have long covid - did it again today - he also said theres no point going to a long covid clinic as they cant really do anything. Did you get anything useful from your covid clinic experience?

*for me after a summer of good breathing ive now had two months of a return to breathing problems.
GP reckons that rules out long covid as it went away for a spell so this must be something new - he might be right - either way I now seem to have long term breathing problems that need managing. bit of a merry-go-round.
for me its breathing exercises that have the most notable effect on me - need to regain discipline on doing those

Well he's totally wrong about it not being LC if it went away, since most people with LC have a lot of variation in their symptoms. He's half right about it not being worth going to a LC clinic. All mine was able to do for me was suggest pacing, which I already knew about, and do lung and exercise tests in order to distinguish what I had from organ damage. Has anyone done anything to look at your lungs in detail? I ended up having MRI as well X-ray. There's nothing visibly wrong with mine, but my symptoms are different to yours - primarily fatigue with lung issues as secondary to that.

Incidentally even the pacing advice the NHS gives is a bit sub-standard. A friend of mine got pacing advice in the Swiss health system and it sounded much better. Essentially they advised regular rests (passive and active, i.e stopping doing anything and changing activity) of 20 mins or so throughout the day. Which is much more like where I have ended up after lots of trial and error. Most pacing advice I've seen is much more vague about being aware of how much energy you are using. In my experience actual rest is important, though I know others have different experiences.

 

[Brainaddict]

This has been the kabbess’ lived reality for the past 5 years. Again and again, she gets copied into a letter between doctors that does not contain what she told them.

Apparently they do not. Or, if they do, they don’t listen to it.

It's maddening. Some very significant percentage of the data a doctor can collect to make an assessment is from listening to the patient, yet they are unbelievably shit at it.

 

[ska invita]

Essentially they advised regular rests (passive and active, i.e stopping doing anything and changing activity) of 20 mins or so throughout the day. Which is much more like where I have ended up after lots of trial and error. Most pacing advice I've seen is much more vague about being aware of how much energy you are using. In my experience actual rest is important, though I know others have different experiences.

Could you say a little more about this? I dont quite get what you mean and would appreciate it a lot - it sounds interesting

 

[Brainaddict]

Could you say a little more about this? I dont quite get what you mean and would appreciate it a lot - it sounds, interesting

I think the active breaks are more important if you are doing intellectual/office type work, and it's about getting up from your desk and doing something. In general it's important to not do any one thing for too long, and if you have a working day to deal with there's no option but to take regular breaks. If you have more control of your time you can do more to just alternate activities. Myself I can't do more than an hour of work without a break. I also need at least one, sometimes two rest rests in a day - like actually lying down in a quiet room, where possible, or when not, finding a quiet corner with a comfy chair and doing nothing for a bit.

 

[kabbes]

It's maddening. Some very significant percentage of the data a doctor can collect to make an assessment is from listening to the patient, yet they are unbelievably shit at it.

We console ourselves with the fact that it doesn’t matter what the doctor writes because the next one won’t read it anyway

 

[Oula]

I've recently found out I have atrial tachycardia and am having more tests. It might not be from covid but I suppose there's a chance it might be

 

[rich!]

Nah - I haven't been near the doctor... but several people have commented on it.. so I might get it checked out now.

old friend of mine thought he had long covid - turned out he had thymic cancer. So definitely get anything persistent checked out.

 

[rich!]

old friend of mine thought he had long covid - turned out he had thymic cancer. So definitely get anything persistent checked out.

sorry, I should say "has thymic cancer" - it's been almost a year and he's still with us. So very, very definitely get it checked out!

 

[Edie]

In the grand scheme of things it's nothing, but my 'covid cough' has persisted for a year, and sure isn't getting any better.

You need a CXR to rule out any significant pathology if you’ve not had one x

 

[Brainaddict]

Recent (self)medication switch that has seen some results. I was using turmeric as an anti-coagulant and have now switched to nattokinase and serropeptase (Doctor's Best brand if anyone is interested). It seems to have improved my energy levels a bit.

 

[ska invita]

Recent (self)medication switch that has seen some results. I was using turmeric as an anti-coagulant and have now switched to nattokinase and serropeptase (Doctor's Best brand if anyone is interested). It seems to have improved my energy levels a bit.

ive turned my frying pan yellow from all the tumeric ive been eating last couple of years - amazing how it stains

glad youve found something thats doing something!

 

[Riklet]

Bit over 2 weeks since I got yon Covid again. Back at work but struggling to go in due to the drive. WFH easier cos I can work in bursts and lie on the sofa and doss off regularly. getting lots of facial and jaw and head tension since the recent horrible cold and then covid mk 2.

Pretty rubbish. Im glad im not back in bed every day but pretty fed up my symptoms and fatigue have got worse. Aside from work and the basics Im not feeling able to do much else.

 

[Brainaddict]

Bit over 2 weeks since I got yon Covid again. Back at work but struggling to go in due to the drive. WFH easier cos I can work in bursts and lie on the sofa and doss off regularly. getting lots of facial and jaw and head tension since the recent horrible cold and then covid mk 2.

Pretty rubbish. Im glad im not back in bed every day but pretty fed up my symptoms and fatigue have got worse. Aside from work and the basics Im not feeling able to do much else.

It often takes several weeks to recover from covid, even if you don't get LC. You don't know what changes might happen long term yet because you're still in the basic recovery phase - I think you should rest more if possible.

 

[Riklet]

It often takes several weeks to recover from covid, even if you don't get LC. You don't know what changes might happen long term yet because you're still in the basic recovery phase - I think you should rest more if possible.

Yeah it's only been 16 days do def still a bit fatigued and recovering.

I think the original virus was much worse tbh in terms of fucking up your whole body. After prior infection and 3 vaccinations the latest infection wasnt too bad at all. Most of the hardcore long covid cases are all from early 2020 cos it was a strong af virus. I am taking it easy but also not worrying, stress and anxiety for sure do not help the process.

I have been making great progress the past year and aim to fully recover. an occupational health doctor recently said he expects me too, considering I was bed and house bound only 2 years ago. I am taking chinese herbal medicine again which I get prescribed and this helps a lot but obvs doesnt work miracles.

Def need to be gentle and patient with myself the next few weeks and insist I cant travel into work at the moment, Monday was too much and then I slept terribly and it set me back, had to call in sick yesterday morning.

 

[krtek a houby]

Since the covid last summer, have had difficulty sleeping, pains in arm, rashes that won't go away, short term memory problems, concentration difficulty when reading and general exasperation.

No idea if long covid related. Have lots of aches and pains etc beforehand but does long term exacerbate various ailments?

Anyway, solidarity and love to all coping with the aftermath.

 

[ska invita]

Since the covid last summer, have had difficulty sleeping, pains in arm, rashes that won't go away, short term memory problems, concentration difficulty when reading and general exasperation.

No idea if long covid related. Have lots of aches and pains etc beforehand but does long term exacerbate various ailments?

Anyway, solidarity and love to all coping with the aftermath.

really sorry to hear that - working out what the hell is going on and is it this or that is part of the confusion of it all, especially so as covid and long covid seem to affect so many people so differently, and often not helped at all by GPs who IME have yet not once said its anything to do with covid despite still having some symptoms coming into the third year. What has your GP experience been?




Health services are stil only just getting appropriate support in place

 

[krtek a houby]

really sorry to hear that - working out what the hell is going on and is it this or that is part of the confusion of it all, especially so as covid and long covid seem to affect so many people so differently, and often not helped at all by GPs who IME have yet not once said its anything to do with covid despite still having some symptoms coming into the third year. What has your GP experience been?

View attachment 362402


Health services are stil only just getting appropriate support in place
View attachment 362403

My annual check up doctor said the sore arm was unheard of and the fatigue was a symptom. That was the extent of it.

Good posters, are they NHS produced? Miss the NHS.

 

[ska invita]

My annual check up doctor said the sore arm was unheard of and the fatigue was a symptom. That was the extent of it.

Good posters, are they NHS produced? Miss the NHS.

Yes my NHS friend shared them from a recent meeting, as I say, that seems to be cutting edge stuff, not reached the brains of my GP surgery.
Sore arms could well be a symptom...yoga, stretching, type stuff might help a little

 

[krtek a houby]

Yes my NHS friend shared them from a recent meeting, as I say, that seems to be cutting edge stuff, not reached the brains of my GP surgery.
Sore arms could well be a symptom...yoga, stretching, type stuff might help a little

Aye, been doing the stretching for some time now and hopefully the pain won't resurface.