"Long" Covid.... ?

Spotlight seems to be opening up again on one of those long term health conditions neglected by medicine due to lack of consolidated data in terms of cause, symptom identification and treatment.

We've seen and continue to see this with conditions like fibromyalgia, ME/CFS, Lyme disease, and now "Long" Covid.

https://twitter.com/i/web/status/1504214936234303496

"Hi my name is Charlie and #LongCovid has destroyed my life. Today is two years. 

Before my 'mild infection' I was a healthy fit 30 year old biking 10 miles a day. Now I can't work or leave the house. I still can't breathe right. It‘s a nightmare"

One of many experience reports of a life destroyed with no apparent remission foreseeable.

......

In relation to the mechanics of long covid, as I understand it covid itself attacks cellular membranes (epithelial) and causes inflammation.

Inflammatory response of organs and blood vessels making them leaky, causing blood clots (I've seen often referred as "micro clots" re covid).

The biomarker indicating this activity is referred to "d-dimer", the result of the body dissolving clots.

D-dimer seems to be elevated to a level 5 or 6 times normal in those post vaccination (i.e. vaccination generates spike proteins = inflammatory response also), thus as in my own situation I began to experience tinnitus post vaccine (though some who acquire covid experience it much more intensely) due to micro clotting in the tiny blood vessels supply auditory nerves.

PS - if this is more suitable to "health science" as it discusses (or is aimed at discussing) mechanics of the illness, please feel free to move it there.

https://www.medicalnewstoday.com/articles/long-covid-could-antiplatelet-therapy-help#Limitations-to-the-study

Study looking at treatments targeting microclotting in relation to symptom alleviation (or rather a summary of said study).

https://www.bhf.org.uk/informationsupport/heart-matters-magazine/news/behind-the-headlines/coronavirus/what-coronavirus-treatments-are-around-the-corner/could-an-everyday-drug-stop-dangerous-covid-complications

ME was never given attention Long Covid is getting. Long Covid is around a couple of years and ME since the 80's. Long Covid probably has more attention given to it in the two years than ME ever got

Could probably add encephalitis lethargica to the OP list also;

https://www.boards.ie/discussion/2058179516/encephalitis-lethargica

Health science thread on it actually.

Graces7

https://www.boards.ie/discussion/comment/118807873#Comment_118807873

That is OK. it will help CFS/ME folk. And is entirely understandable as covid is so much in the public eye as a single known cause whereas CFS/ME had and has a mulitiplicity of viral triggers. NB my CFS/ME dates back to 1970 misdiagnosed until after 2000. So much more is known re viral consequences now and that can help those post covid sufferers. Deeply thankful for that: All that has been learned over the decades will bear fruit now. For all of us.

CFS/ME had and has a mulitiplicity of viral triggers." Evidence?

No one knows for sure ME is viral and some doctors, who 'believe' in long covid do not accept ME as real illness.

So long covid won't help ME people .

Long covid will be 'real' because doctors say so.

Graces7

https://www.boards.ie/discussion/comment/118972292#Comment_118972292

Maybe do some real research for yourself.I am totally satifisfied with the accuracy of my post after decades of CFS/ME.

Respectable publication covering chronic fatigue:

https://www.youtube.com/watch?v=YH1wn3D9HNg

• CFS
• Lyme Disease
• Now long covid

I would strongly postulate the "mechanical failure" mediating the primary symptoms of each is neural integrity.

Brain fog, lack of energy, if one thinks of the nervous system as the physiological "battery pack", when the transistors fail to function correctly, the machine cannot function.

Covid as I understand is an epi-thelial ailment, attacking cellular "skin". It would seem likely not only does it impact organs such as the lungs, but cellular membranes in the nervous system itself.

In any case symptoms of cognitive impairment and impact on executive function are unquestioned neural mediated.

The conventional thinking in relation to being healthy through covid was simply, "be healthy".

Eat good, sleep well, exercise, things for general physiologic well being.

.......

And those in high risk categories are those who can't maintain or engage in this such as, elderly, chronically overweight, etc.

I simply contend that the potential focus on remediation of neural function should be the primary focus on treating these unsolved and mystery ailments.

Graces7

You are equating three entirely different illnesses. NB ME is often triggered by a systemic illness. eg a bad flu....Mine was. I was supremely fit as in Advanced Royal Aca demy of Dancings Dancing and this is typical of ME

https://www.boards.ie/discussion/comment/119535168#Comment_119535168

The point is the symptom of fatigue, compromise of ability to function is mediated through the nervous system, neurons, regardless of the means this(/they) was impacted.

Of course their origin is different.

Treating them however..... I think there's a good point to be made for some innovation that boosts neural function essentially "over riding" the inhibition (again, regardless of how that inhibition was caused).

You've mentioned you're well read in relation to your ailment.

What do you contend is the current physiologic dysfunction causing the compromise in your executive function? (ability to life you life).

You've mentioned the cause, but what part of your body is now responsible for not functioning well enough to allow you to live a normal life?

Graces7

Just now I would say my lungs and this is new. Previously long muscles eg legs. I was a classical dancer at high level so they were well developed. It does change ... But breathing just now is

Very little is known re M,E in old age, When I asked they told me it was because very few lived into old age and the major cause of death was " overwhelming infection" . I live isolation and that has kept me clear of bugs . I am almost 80

https://www.boards.ie/discussion/comment/119538636#Comment_119538636

Ah that sounds like a different situation.

You have other physiologic burdens.

By chronic fatigue I meant as per that video link, an almost inexplicable onset of lethargy in an otherwise young and healthy person.

What you describe is lung dysfunction that's draining your energy? (as I interpret your post. Either that or your energy/immune response was so weak you were overcome by a generic viral respiratory infection).

What I mean could equally be inhibited performance in someone with a taxed nervous system (ever see someone sweat profusely at the slightly demanding task).

Joe Rogans podcast had some entrepreneur on who overcame chronic fatigue by taking an obscene cocktail of chemicals affecting the nervous system.

Oxytocin he credited as being one of the primary remediating drugs, which is pro-social (highly relative to excitation, neural-activity, the basis of neural function/activity).

Overall our attitude/personality is coded into the nervous system and he ultimately characterized his remission from chronic-fatigue as a "personality reformation" (excitation-stimulation as I interpret it as a self-taught neurologist).

.......

Long covid symptoms are clear cognitive/executive dysfunction, brain-fog/fatigue.

Could this happen by way of respiratory system dysfunction essentially "draining" the body's energy? No idea but even brain-fog would indicate some kind of specific neural impairment. Emergent neural dysfunction in the form of psychiatric symptoms (emergence, or worsening of) was noted specifically by some neurologists on twitter I recall, very very early after covid onset in mid 2020.

Graces7

Been ill with this since 1968 and have had a long list of variegated diagnoses over the decades... One young medic told me. " You are just unhappy.."well yes,, lost my career and everything else to a mystery illness.. sure ..

When the diagnosis of Post Viral Fatigue finally came at the turn of the Millenium and a friend reinterpreted that as M,E it was as if the sun came out. This I can manage and it is second nature now.

https://www.boards.ie/discussion/comment/119538853#Comment_119538853

Manage in terms of simply understanding there was a cause for the illness and that put your mind to rest?

Or was there an intervention specific to that diagnosis that made things better?

See thing with Lyme and Long Covid, consistent with post viral fatigue, it seems so completely random who it effects.

Why is one person so heavily impacted whilst another just recovers from the illness without issue?

You've probably watched "Awakenings" (all neuroscientists I've spoken to defer to this frequently) as to the post viral syndrome associated with the Spanish flu epidemic, which was known as "Encephalitis Lethargica".

Graces7

https://www.boards.ie/discussion/comment/119539056#Comment_119539056

Mine was triggered by a bad flu. Classic M,E but this was 1968 and such a thing was never heard of. After 3 weeks of tests that showed nothing,, Well AITM.So off to the appropriate clinic One dr years later wrote that " She has any very real symptoms that we cannot understand. " It was the turn of the Millenium before a locum where I was living then did a proper diagnosis and underwrote my notes that my illness had always been ME..... My then GP just would not accept that and sad well of course ME is partly mental illness,so I left the UK asap! Made a fresh start here.

Graces7

https://www.boards.ie/discussion/comment/119539056#Comment_119539056

Some of the ME research focussed on the mitochondria as source of the disease? I am not good with tech stuff! And did not research deeply once I knew what this was and what my future might hold. I already knew that pure air and ocean air always helped in dramatic ways. I know now that that makes sense. And my aim was to rebuild what I could of my life, and I was near pension age. It was not ME that stole so much of my life but a massive misdiagnosis and totally wrong and damaging treatment. I did not stay much in touch with ME circles as what helped was common sense. The drs here have mostly never heard of ME.So I keep as rested and active as I can, away from infection. A simple cold puts me abed for weeks. I had a few more active years, pacing, trading my handwork at street markets etc. Retired fully at 72.

Just because you're happy with your post does not mean you're right

I have done more research than you since i know there's no proof ME is viral. It's one theory of many and you would know that had you done any real research rather than research to prove what you have decided.

No doctor can say it was always ME. A doctor can only diagnose what they see when they see you. they are not time traveller s.

If the doc said that it was probably just to please you given your attitude.

None of the best doctor s in the world who have done research you know nothing of can say with certainty it's viral

But you can?

Gremlinertia

MOD NOTE: Each person posting has their own experience, this is a Long Term Illness forum so scientists we are not. Don't shut other people's opinions down, just share yours.

I remember this interesting fact from an Economist article last year about Long Covid.

In the 1890s one of the biggest pandemics in history, known at the time as “Russian flu”, swept the world. It left 1m people dead. Russian flu is now thought to have been misnamed. It was probably not influenza, but rather a coronavirus ancestral to one that now just causes symptoms described by sufferers as “a cold”. When it was new, however, few people had immunity to it, so it was often lethal. And not only that. For, as the pandemic receded, it left in its wake a wave of nervous disorders.

A similar wave followed the next big pandemic, the “Spanish” flu of 1918 (which, though nothing much to do with Spain, really was influenza). One common symptom was lethargy so bad that in Tanganyika (modern-day Tanzania) it helped cause a famine because so many people were too debilitated to pick the harvest.

Any "novel virus" has had similar long-term effects in the past histories of same.

I personally know someone who has spent what they have said is more than 100k euro on Long Covid treatments such as multiple courses of Apheresis (effective for them but very expensive and had to go to Germany), Hyperbaric Oxygen Therapy (not effective), consultations with doctors worldwide, all sorts of drugs and supplements like vitamins IV drips, travel and rental accommodation for same etc

Graces7

https://www.boards.ie/discussion/comment/119540249#Comment_119540249

Thank you, ,gremlininertia . Wise words. I came to peaceful terms with this illness many years ago and my sharing experience will resonate with iothers. . .

Graces7

Thank you for this enlightening and informative post... We know so little. .. and ues, we are learning all the time.

And we each make decisions... For many it is simply coming to terms with what we have and experience and finding peace and enjoyment where we are at within the limitations illness imposes.

Most of us do not have the means to do else... ..

NIMAN

I would be a regular football player, 7 a sides. Played usually at least once per week, maybe twice. And been playing football in general for guts of 40yrs.

Always considered myself fit for my age. Would usually do pretty well in terms of stamina in most games.

Got covid about 5 weeks or so ago. Got back playing about 2 weeks ago, and maybe played 4 games so far. Definitely struggling more than I ever did. Don't seem to have the same stamina, and breathing seems more laboured during the game.

Graces7

https://www.boards.ie/discussion/comment/119551421#Comment_119551421

So sorry. But early days for you and best to rest and let time pass and take the best care of yoursefl. Part of the reason it hit me so badly is that I fought to " keep going." Stupid heroism! Rest. Give your body tim to renew and heal, and your basic fitness will help . As soon as the basic diagnosis finally came in I changed my whole lifestyle.

In relation to long-covid and other associated fatigue related disorders:

https://www.youtube.com/watch?v=yF4PebYeYpU

A covid specialist physician highlights the emergence of brain disorders post-infection.

As the nervous system acts as the battery-pack and computer for our physiology, when it's impacted it seems to result in this symptoms.

Covid as I understand attacks cellular integrity generating an inflammatory response, but the latter is just a function of the actual damage.

It appears clear is not just conventional organ damage, but also effects excitatory cells in neurons.

Resultantly the above video outlining exacerbation and/or emergence of neurological symptoms including degenerative/psychiatric, and as with myself, tinnitus of all things (auditory nerve implication).

..........

I must contend that regeneration of cellular function is based on cognitive proficiency as:

 - Cognitive function = neural activity = neural growth.

Cognitive function itself is, self-awareness, self-instruction in many respects which increases self-awareness when a proficient level is acquired.

And this process is mediated through language (thus Noam Chomsky and the cognitive science contention that language is the base of cognitive and cognitive ability/function).

https://youtu.be/-rB_rrhh0UM?t=22

The concept is outlined here on a sitcom of all places.

The "Dr" delineates recovery from the neural/brain damage of blood deprivation/ischemia, generating new neural pathways - a primary medium is stimulation and she underscores the importance of cognitive engagement;

"Talk to him".

Dialogue, words, cognitive function = neural enhancement.

This concept is demonstrated again in a coma victim:

https://www.youtube.com/watch?v=OwbD5Bn96TI

He restored his own neural function by using an interactive dialogue machine, a computer.

That cognitive stimulation restored neural function such that he regained movement and physical functionality.

I personally believe many of this long standing and unexplained neural/nerve disorders including ME/CFS, post-vial syndrome, post-lyme disease and now long-covid;

It stands to reason that addressing the overall neural network integrity and functionality presents with the distinct possibility to regenerate much of that damaged and lost ability.

..........

Degenerative disorders emergent with age - same thing.

"Use it or lose it".

Increasing nervous system activity by way of novel cognitive intervention, it can only stand to reason it has the potential to ward off degeneration and maintain sound neural functionality/integrity.

https://www.youtube.com/watch?v=tvYbPJ5m9GY

Numbers going up.

Graces7

TLDNR

Far too abstruse and wildly unlkely and irrelevant. .... Many with eg M.E start with a viral infection. Mine certainly did. I just never recovered etc. Very simple. And what starts it really matters far less than a correct diagnosis, learning to live/cope with it and the effect it has on our lives foro decades if not permanently.

Larbre34

"Long" Covid and M.E. are the same thing.

M.E. is also known as Chronic Fatigue Syndrome is also known as Post Viral Syndrome is.....Long Covid!

I was treated for CFS for almost a year after a particularly bad bout of Influenza in my 20s. And I do mean full bore Influenza, the sickest I have ever felt. And thats 20 years ago.

All the symptoms of Long Covid and my PVS/CFS match up, accept one and thats the longer term loss of smell. But obviously that is a particular feature of Covid itself.

Graces7

https://www.boards.ie/discussion/comment/119791842#Comment_119791842

All hypothetical and totally irrelevant and of no real relevance. Any more than theorising is. read all this on other forums, A curse by any other name..so I am disagreeing while admitting similarities. See my previous post re priorities. And no ME is not Long Covid

Over and out from me on this.

Deleted.posted in wrong place

https://www.boards.ie/discussion/comment/119540249#Comment_119540249

Some think their opinions are fact. They are wrong.

Numbers into the millions:

https://www.youtube.com/watch?v=SqIpJD_x7h0

Seems to be recognized as a nervous system disorder.

Being classified with lyme, fibromyalgia, chronic fatigue, etc.