Climbers recovering from covid

[petejh]

To offer something tangible for those suffering long covid (Sean, Dunny, Kelvin, Shurt, others?).

Like many things this comes from my investing sideline hobby. I became interested in 2021/22. As an investment it's a disaster (like most of my history of biotech.. I should stick to rocks and metals). But as a tool to aid diagnosis of long covid it may be of interest for you to chase up and try to get yourselves on the UK study currently underway. That's if you're suffering breathlessness.. but maybe you aren't breathless, but your lungs still aren't functioning to their best and you aren't aware? I'm not in any way medically qualified, nor is it investment advice! :'(

https://oxfordbrc.nihr.ac.uk/ouh-agrees-long-covid-research-collaboration-with-polarean/

Background - the use was recently approved by the FDA in the US and the machines are currently being rolled out in hospitals across the US. There were a couple already in hospitals being used for studies. AFAIK there's only one or two hospitals in the UK with the machine, again being used for the study. The issue with lung imaging is current mri or CT can't provide the granular detail to accurately visualise lung ventilation and gas exchange. The xenon adaption adds that detail.

Overview from the study website:
Oxford University Hospitals (OUH) and the medical imaging technology company, Polarean Imaging plc, have entered into a research collaboration to study the long-term effects of COVID-19 in patients who are still experiencing breathlessness months after infection.

Hyperpolarised xenon MRI scans can detect underlying damage to the lungs that is not detectable on CT scans
Polarean produce an investigational drug‑device combination product using hyperpolarised xenon gas to enhance magnetic resonance imaging (MRI) in pulmonary medicine.

Xenon MRI imaging technology uses a novel approach that can detect functional changes of the lung that impact its ability to properly handle the exchange of gases during inhalation and exhalation. The upcoming research builds upon the pioneering work conducted at OUH showing that hyperpolarised xenon MRI can detect underlying damage that is not detectable by traditional lung imaging, such as CT scans.

The research builds upon the pioneering work conducted at OUH showing that hyperpolarised xenon MRI can detect areas of possible lung damage in patients with long COVID.

Under the terms of the collaboration, Polarean will provide its investigational xenon polariser system to OUH for their research. In turn, OUH will work with Polarean to optimise the imaging workflow and analyse the datasets coming from the newly enrolling EXPLAIN study. Through novel analyses of gas-exchange images, Polarean and OUH hope to better characterise long COVID and improve patient care.

The EXPLAIN study, which also involves teams from Sheffield, Cardiff and Manchester, is supported by the NIHR Oxford Biomedical Research Centre.

Professor Fergus Gleeson
Prof Fergus Gleeson (left), Professor of Radiology at the University of Oxford and Consultant Radiologist at OUH, said: “We are pleased to be working with Polarean, now having access to their most advanced hyperpolarised xenon equipment. With this new system, we will be able to image more patients more efficiently to see if we can uncover the underlying causes driving long COVID as part of our EXPLAIN study.”

Richard Hullihen, CEO of Polarean, said: “Oxford University is a leading pioneer in the use of Xe MRI to unravel the underlying pathophysiology that drives persistent breathlessness in patients with long COVID. We are delighted to collaborate with them on new image analyses as part of the upcoming EXPLAIN trial that might shed additional light on the mysterious illness that has been affecting a growing number of patients over the past few years and affecting their quality of life.”

Long COVID is an umbrella term used to describe ongoing symptoms following COVID-19 infection after four weeks. Symptoms are wide-ranging but breathlessness is one of the most common and can persist for months after the initial infection. Investigations including Computed Tomography (CT) and physiological measurements (lung function tests) can often be unremarkable. The mechanisms driving breathlessness remain unclear, and this may be hindering the development of effective treatments. Therefore, new diagnostic modalities are crucial to advance the care of these patients.

The EXPLAIN study, which involves teams in Oxford, Sheffield, Cardiff and Manchester, is using hyperpolarised xenon MRI scans to investigate possible lung damage in long COVID patients who have not been hospitalised with COVID-19 but who continue to experience breathlessness.

It is envisaged that 400 participants will be recruited. These include:

Patients diagnosed with long COVID, who have all been seen in dedicated long COVID clinics and who have normal CT scans
Participants who have been in hospital with COVID-19 and discharged more than three months previously, who have normal or nearly normal CT scans and who are not experiencing long COVID
An age- and gender-matched control group who do not have long COVID symptoms and who have not been hospitalised with COVID-19
The findings of an initial pilot study involving 36 people has identified abnormalities in the lungs of long COVID patients who had been experiencing breathlessness.

A polarisation device transforms the inert noble gas, 129xenon, into a hyperpolarised state using circularly polarised laser light. The hyperpolarised gas is inhaled by a patient to fill the space normally occupied by air in a single 10-second breath hold. The hyperpolarised gas then enhances the MRI signal, making regional lung function, including gas exchange, from the lungs to the blood visible in an MRI scan. The use of xenon MRI is non-invasive, and does not impart any radiation to the patient.

 

[kelvin]

To offer something tangible for those suffering long covid (Sean, Dunny, Kelvin, Shurt, others?).

Like many things this comes from my investing sideline hobby. I became interested in 2021/22. As an investment it's a disaster (like most of my history of biotech.. I should stick to rocks and metals). But as a tool to aid diagnosis of long covid it may be of interest for you to chase up and try to get yourselves on the UK study currently underway. That's if you're suffering breathlessness.. but maybe you aren't breathless, but your lungs still aren't functioning to their best and you aren't aware? I'm not in any way medically qualified, nor is it investment advice! :'(

https://oxfordbrc.nihr.ac.uk/ouh-agrees-long-covid-research-collaboration-with-polarean/

Background - the use was recently approved by the FDA in the US and the machines are currently being rolled out in hospitals across the US. There were a couple already in hospitals being used for studies. AFAIK there's only one or two hospitals in the UK with the machine, again being used for the study. The issue with lung imaging is current mri or CT can't provide the granular detail to accurately visualise lung ventilation and gas exchange. The xenon adaption adds that detail.

Overview from the study website:
Oxford University Hospitals (OUH) and the medical imaging technology company, Polarean Imaging plc, have entered into a research collaboration to study the long-term effects of COVID-19 in patients who are still experiencing breathlessness months after infection.

Hyperpolarised xenon MRI scans can detect underlying damage to the lungs that is not detectable on CT scans
Polarean produce an investigational drug‑device combination product using hyperpolarised xenon gas to enhance magnetic resonance imaging (MRI) in pulmonary medicine.

Xenon MRI imaging technology uses a novel approach that can detect functional changes of the lung that impact its ability to properly handle the exchange of gases during inhalation and exhalation. The upcoming research builds upon the pioneering work conducted at OUH showing that hyperpolarised xenon MRI can detect underlying damage that is not detectable by traditional lung imaging, such as CT scans.

The research builds upon the pioneering work conducted at OUH showing that hyperpolarised xenon MRI can detect areas of possible lung damage in patients with long COVID.

Under the terms of the collaboration, Polarean will provide its investigational xenon polariser system to OUH for their research. In turn, OUH will work with Polarean to optimise the imaging workflow and analyse the datasets coming from the newly enrolling EXPLAIN study. Through novel analyses of gas-exchange images, Polarean and OUH hope to better characterise long COVID and improve patient care.

The EXPLAIN study, which also involves teams from Sheffield, Cardiff and Manchester, is supported by the NIHR Oxford Biomedical Research Centre.

Professor Fergus Gleeson
Prof Fergus Gleeson (left), Professor of Radiology at the University of Oxford and Consultant Radiologist at OUH, said: “We are pleased to be working with Polarean, now having access to their most advanced hyperpolarised xenon equipment. With this new system, we will be able to image more patients more efficiently to see if we can uncover the underlying causes driving long COVID as part of our EXPLAIN study.”

Richard Hullihen, CEO of Polarean, said: “Oxford University is a leading pioneer in the use of Xe MRI to unravel the underlying pathophysiology that drives persistent breathlessness in patients with long COVID. We are delighted to collaborate with them on new image analyses as part of the upcoming EXPLAIN trial that might shed additional light on the mysterious illness that has been affecting a growing number of patients over the past few years and affecting their quality of life.”

Long COVID is an umbrella term used to describe ongoing symptoms following COVID-19 infection after four weeks. Symptoms are wide-ranging but breathlessness is one of the most common and can persist for months after the initial infection. Investigations including Computed Tomography (CT) and physiological measurements (lung function tests) can often be unremarkable. The mechanisms driving breathlessness remain unclear, and this may be hindering the development of effective treatments. Therefore, new diagnostic modalities are crucial to advance the care of these patients.

The EXPLAIN study, which involves teams in Oxford, Sheffield, Cardiff and Manchester, is using hyperpolarised xenon MRI scans to investigate possible lung damage in long COVID patients who have not been hospitalised with COVID-19 but who continue to experience breathlessness.

It is envisaged that 400 participants will be recruited. These include:

Patients diagnosed with long COVID, who have all been seen in dedicated long COVID clinics and who have normal CT scans
Participants who have been in hospital with COVID-19 and discharged more than three months previously, who have normal or nearly normal CT scans and who are not experiencing long COVID
An age- and gender-matched control group who do not have long COVID symptoms and who have not been hospitalised with COVID-19
The findings of an initial pilot study involving 36 people has identified abnormalities in the lungs of long COVID patients who had been experiencing breathlessness.

A polarisation device transforms the inert noble gas, 129xenon, into a hyperpolarised state using circularly polarised laser light. The hyperpolarised gas is inhaled by a patient to fill the space normally occupied by air in a single 10-second breath hold. The hyperpolarised gas then enhances the MRI signal, making regional lung function, including gas exchange, from the lungs to the blood visible in an MRI scan. The use of xenon MRI is non-invasive, and does not impart any radiation to the patient.

Appreciated Pete. I'm actually waiting for a lung scan currently as I have severe asthma but not expecting it to be anything other than clear, for the reasons you outlined.

I can only speak for myself but 'brain fog' has been the most devastating part of long covid personally.
After lots of lymphatic and glymphatic work, I'm on top of it now but for a while - well, it felt like dementia had started.

 

[shurt]

My experience with Doctors when diagnosed with CFS was shit. Had multiple blood tests, all negative over long period. Diagnosis and then a shrug and goodbye. There is little support or any idea of a plan for recovery via doctors on the NHS. Not sure if the same for long covid but I suspect as much.

My experience entirely with long covid. I have a private MECFS diagnosis now.

I gave up on the GP a while back.

Glad you found something that helped you Kelvin, how are you these days?

I completely sacked off the doctor too, one of the best things I ever did to help my recovery, it was largely a negative experience. To offer some light at the end of the tunnel, I am largely better from CFS. It took a long time - approx 5-6 years - and was a lot of work. I had a huge amount of help from my partner researching stuff online and trying out so many different approaches. The biggest takeaway is that there is no simple way out of a chronic health condition, it's not a one size fits all, there is no magic pill. You have to find out what works for your own set of symptoms which are never the same as anyone else's.

And to everyone putting down positive thinking, if you can't stay positive when you are at your lowest ebb and believe there is a way back then you are truly fucked. You will continue the downward slide and end up in a bad place. Although not in my personality I did manage to remain positive and I think it was a huge part in me getting better.

For me, I have been very triggered by emotional triggers and stress. They have set me back and in some cases caused temporary relapses so although it's not "all in my head", these effects should never be underestimated.

 

[kelvin]

Glad you found something that helped you Kelvin, how are you these days?

I completely sacked off the doctor too, one of the best things I ever did to help my recovery, it was largely a negative experience. To offer some light at the end of the tunnel, I am largely better from CFS. It took a long time - approx 5-6 years - and was a lot of work. I had a huge amount of help from my partner researching stuff online and trying out so many different approaches. The biggest takeaway is that there is no simple way out of a chronic health condition, it's not a one size fits all, there is no magic pill. You have to find out what works for your own set of symptoms which are never the same as anyone else's.

And to everyone putting down positive thinking, if you can't stay positive when you are at your lowest ebb and believe there is a way back then you are truly fucked. You will continue the downward slide and end up in a bad place. Although not in my personality I did manage to remain positive and I think it was a huge part in me getting better.

For me, I have been very triggered by emotional triggers and stress. They have set me back and in some cases caused temporary relapses so although it's not "all in my head", these effects should never be underestimated.

So much truth and honesty there Shurt, it's really refreshing to hear!
That's f@#kin' ace you made it back to health :boxing: It's not an easy thing and takes so much when you really have nothing much to give, plus having a partner who's on your side makes everything easier.

As you say, it's a different journey for all of us and lots of relapses along the way. I'm doing okay - just over a year ago I bought a walking stick, my brain was falling apart and I didn't know what had hit me. I was scored at 2.5/10 and now I'm a 7/10. I'm absolutely going to recover.

UKB has played a part with the Black Dog Club and Sean Kenny has been a rock. Knowing someone is there, on the other end of messenger, who fully understands what fatigue actually is makes so much difference. Obviously, I wish he didn't have any experience in this but yeah, it's really helped.


I completely agree with you that positivity matters - you won't heal yourself if you're digging a pit for yourself in your head.
Words matter. Especially the words you speak to yourself internally.
It's really easy to separate 'you' from your body and blame your body from letting 'you' down, when the truth is you are one and the same thing. Your body is going to get you better, that's what it wants and what you want also. There's no good will come from treating your own body as the enemy ‍ I've had to learn to be kinder to myself internally.

I don't think there are too many folk who now know more than me about the lymphatic system. I've had to learn with a head like jelly and it's been tough but ultimately, so so rewarding. This year, science has shown/discovered new parts to the glymphatics of the brain. It's been exciting and confirming, I'm on the right path.
Don't discount anything. My Perrin Technique therapist calls me a seeker of knowledge but who else is going to find the way to fix me?

I'm really chuffed you got better. Really.

 

[slab_happy]

My experience with Doctors when diagnosed with CFS was shit. Had multiple blood tests, all negative over long period. Diagnosis and then a shrug and goodbye. There is little support or any idea of a plan for recovery via doctors on the NHS. Not sure if the same for long covid but I suspect as much.

My experience entirely with long covid. I have a private MECFS diagnosis now.

I gave up on the GP a while back.

Glad you found something that helped you Kelvin, how are you these days?

I completely sacked off the doctor too, one of the best things I ever did to help my recovery, it was largely a negative experience. To offer some light at the end of the tunnel, I am largely better from CFS. It took a long time - approx 5-6 years - and was a lot of work. I had a huge amount of help from my partner researching stuff online and trying out so many different approaches. The biggest takeaway is that there is no simple way out of a chronic health condition, it's not a one size fits all, there is no magic pill. You have to find out what works for your own set of symptoms which are never the same as anyone else's.

And to everyone putting down positive thinking, if you can't stay positive when you are at your lowest ebb and believe there is a way back then you are truly fucked. You will continue the downward slide and end up in a bad place. Although not in my personality I did manage to remain positive and I think it was a huge part in me getting better.

For me, I have been very triggered by emotional triggers and stress. They have set me back and in some cases caused temporary relapses so although it's not "all in my head", these effects should never be underestimated.

As someone with severe and treatment-resistant depression (and who had ME/CFS in my teens, and has a bunch of other fun chronic conditions to deal with), I'm strongly in favour of trying to focus on the positive whenever possible.

I know how easy it is to get stuck in a spiral of despair, and it never helps anything.

The trouble is when you get told that if your symptoms aren't getting better, or are getting worse, it must be your fault because you're not thinking positively enough. Or that you'd be guaranteed to get better if only you think positively enough.

(Which is, ironically, a thing that tends to make you feel worse.)

I also think it's important and healthy as a human being to be able to acknowledge that sometimes things are kind of shitty and that you feel frustrated and awful about it. Sometimes you just need to shout "THIS SUCKS AND IT'S UNFAIR AND I HATE IT" for a moment, and then you pick yourself up and get on with dealing with it, you know?

People have coined the phrase "toxic positivity" to describe the pressure to only feel and display positive emotions at all times, and discussed how that can lead to blaming yourself if you can't be perfectly positive about everything:

https://en.wikipedia.org/wiki/Toxic_positivity

 

[kelvin]

People have coined the phrase "toxic positivity" to describe the pressure to only feel and display positive emotions at all times, and discussed how that can lead to blaming yourself if you can't be perfectly positive about everything:

https://en.wikipedia.org/wiki/Toxic_positivity

I spend a lot of time on the often toxic Twitter and 'toxic positivity' comes up all the time. Mostly in reference to family or friends trying to jolly you along, which is frustrating as f@#k. I speak from personal experience and nothing triggers me more
It's hard to hear it's going to be okay when you actually have no idea if it is.
I think perhaps it's best I clarify that when I talk about positivity, it's that internal never gave up attitude I have inside of me. I'm sure everyone has a very different position on what internal positivity is as it relates to them personally.
If you suffer from serious depression like my sister and stepdaughter, then it's never going to be as easy - my sister's version of positivity is very different to mine, we spoke at length about this. Hers is far more about managing to tread water.

As Shurt said, recovery is a very personal thing and for me, that has to include positivity because that's been me as a person all my life.

 

[slab_happy]

People have coined the phrase "toxic positivity" to describe the pressure to only feel and display positive emotions at all times, and discussed how that can lead to blaming yourself if you can't be perfectly positive about everything:

https://en.wikipedia.org/wiki/Toxic_positivity

I spend a lot of time on the often toxic Twitter and 'toxic positivity' comes up all the time. Mostly in reference to family or friends trying to jolly you along, which is frustrating as f@#k. I speak from personal experience and nothing triggers me more
It's hard to hear it's going to be okay when you actually have no idea if it is.
I think perhaps it's best I clarify that when I talk about positivity, it's that internal never gave up attitude I have inside of me. I'm sure everyone has a very different position on what internal positivity is as it relates to them personally.
If you suffer from serious depression like my sister and stepdaughter, then it's never going to be as easy - my sister's version of positivity is very different to mine, we spoke at length about this. Hers is far more about managing to tread water.

As Shurt said, recovery is a very personal thing and for me, that has to include positivity because that's been me as a person all my life.

Very much agreed -- I think there's a huge difference between trying to find that internal source of resilience and survival, whatever that means for you personally (and yeah, some days treading water is a win), and the external pressure to "think positive! It'll all be fine!".

 

[shurt]

Hey Kelvin, I'm really glad to hear you are on the up and feeling like you're going to get back to some semblance of normality. It sounds like it's taken a lot of work which I get. I'm glad you very found some support on here. It's much needed and fuck me you find out who your friends are.

slab_happy
I'm not really too sure how it went from my post to toxic positivity compete with wikipedia link but there you go. I'm glad it was sort of cleared up afterwards. I decided right from the start that I wasn't going to be ill forever and was going to throw everything at getting better. That to me was being positive. I've had depression on and off for over 30 years so am hardly the type to be telling people to slap on a smile.

 

[mrjonathanr]

Hi Shurt, given the issues raised by Monbiot’s article and the physiological vs psychological debate around CFS, slab-happy’s post makes perfect sense. I didn’t read any criticism of your post in that, but a differentiation from some of the less helpful ideas around the role of psychological outlook in recovery.

The Guardian published letter responses to the article, for those interested.
https://www.theguardian.com/society/2024/mar/15/why-mecfs-is-still-so-poorly-researched-and-treated

Most are positive, including one from Dr Charles Shepherd. Shepherd has been medical advisor to the ME Society for many years and written and researched extensively on the condition.
https://me-pedia.org/wiki/Charles_Shepherd

 

[webbo]

I don’t know whether this has been mentioned on here but the Nuffield have a free long Covid scheme. I don’t know any details but it is mentioned when you ring their hospital switch board.

 

[James Malloch]

Got my first ever positive test today (3 days before dad’s funeral - NNFN…).

What’s the general advice these days, just rest up and don’t overdo things when things start improving?

And how long would one likely be infectious - is a negative test enough to risk mixing with high risk family?

I’m feeling medium rough with shivers and everything aching so will probably just have some lemsip for now.

I’m guessing the fact I never hear anything about it now means it’s basically just part of life…

 

[jshaw]

Sorry to hear this James. Regarding infectiousness of COVID, a general rule of thumb is: you are potentially infectious while you have symptoms. Infectiousness can vary from person to person. Many people will no longer be infectious after 5 days, some will be infectious for up to 10 days (source: NHS guidance).

Edit: was skimming and missed the follow-up Q.

The relationship between antigen test positivity and COVID-19 infectiousness is complicated. But a negative antigen test (provided it isn't falsely negative) would mean you are less likely to be contagious as the antigen will be below detection in your upper airway.

 

[spidermonkey09]

Difficult situation James, sorry to hear that. If it were me, I think I'd try to mix with family outside as much as possible and obviously let them know you're currently testing positive, but given the importance of the day there's only so much you can do. It's another thing to think about when you already have a lot on. Hope you feel better soon and you give your dad a good send off.

 

[seankenny]

Perhaps worth letting everyone know the score as some people may have underlying health conditions that you’re unaware of. Outside is a good idea, I’d strongly recommend avoiding hugging and close contact but appreciate that is crap advice for a funeral.

For yourself, yes do take it easy for a bit afterwards. The chances of it turning into the extended version are about one in ten, maybe a little less, so not negligible and worth avoiding.

Hope the day goes as well as can be expected. Get well soon!

 

[SA Chris]

That's tough. I have always (well, twice) waited until it feels like my heartrate is back to normal before thinking about any strenuous exercise.

Hope the day goes OK.

 

[seankenny]

Another thought - if you think there’s a chance you’re still infectious maybe wear a mask.

 

[slab_happy]

Yeah, I'd definitely consider masking up if you're going to be indoors with people while you might still be infectious. Then do as much outdoors as possible.

Though obviously as Sean says it's all miserable advice for a funeral.

Perhaps worth letting everyone know the score as some people may have underlying health conditions that you’re unaware of.

This. Let other people know so they can decide what risks to take.

I hope it all goes okay but remember that the most important thing is the time you spent with your dad before his death. Sounds like he got to live his last days absolutely on his own terms, and nothing can take that away. Even if the funeral can't be 100% perfect, there will be other chances to commemorate his life.

 

[James Malloch]

Thanks for all the responses. If I’m testing negative by Friday I’d go, but fully masked and away from everyone at the ceremony.

I think if I am still testing positive then I might just watch the live stream (or hang in the doorway of the chapel if that is an option). Or maybe even go after everyone has left to say a final goodbye. There are too many relatives there who have their own illnesses whom I would hate to infect.

It would be sad to miss it, but at the same time I got to say my goodbyes in private to him before and after he died. I wrote a mini Eulogy of everything I wanted him to know and made sure he knew it whilst he was around too.

I’ve been thinking for a while that I feel like I’ve already had my own ceremony for him, and that the real one is more for everyone else who didn’t get to see him, or were there throughout without the space to process (my step mum).

Let’s see what the next few days bring…

 

[SamT]

So sorry to hear that James, super tough, but sounds like your dealing with the situation well and postively, which is good. Well done :thumbsup:.

I had two 'covid' funerals, mother in law's, which me and my two sons had to miss and watch on a very glitchy live stream. And one where we held the ceremony around the grave site, outdoors which, thanks to some kind weather, was as good as sitting in a church/crem whatever. Fingers crossed the weather is fine for you too.

 

[James Malloch]

So sorry to hear that James, super tough, but sounds like your dealing with the situation well and postively, which is good. Well done :thumbsup:.

Cheers! Can’t let something like this get you down!

We also had a few covid funerals. One step parent which we couldn’t make due to international travel rules, and my grandmother’s which was to do with numbers allowed.

For the former we went and had a little ceremony at the same time somewhere close to home. It was pretty nice really as we now have somewhere to go and sit and remember them.

I’m sure I’ll do the same on Friday if I can’t make it. I’ve got the beers that my dad got in for our last night together (he was too unwell to drink by that point) so sitting out on the moors somewhere with a beer would be a nice alternative.