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peteyPete | 2 years ago

I find it quite tiresome to read so many people be instantly doubtful when more progress is made in understanding Covid and long-covid, resorting to medical gaslighting as a defence mechanism to feeling inadequate or just not understanding what patients are suffering through. One would think we'd be in a medical age where we stop jumping to psychological conclusions as a way to explain everything and get sick people to retreat into their sad corners.

Reality is, its not all that new, is not solely attributable to Covid and there should/could have been much more research conducted a long time ago that would/could have laid way more ground work instead of researchers coming out with articles years after the fact that just reverberate what many have known all along.

Post-Acute Sequelae of COVID-19 (PASC) overlaps other post viral fatigue syndromes associated with other infections. SARS 2003 also left many with a storm of symptoms that almost perfectly aligned with Long-covid. The infection itself may stem from a different virus or one related, so the onset of the infection, the aggressiveness of the virus, how quickly it peaks and how the immune system reacts, may be different, but many of the sequelas overlap. Many viral infection impact the body differently but devolve into pneumonia for example. So the connection between viral illnesses and ME/CFS and/or POTS may not be a specific protein, or specific interactions, but the shock to bodies, the response to a viral illness followed by secondary infections. The strain put on the immune system, the inflammation, the cytokine storm, etc.

Myalgic encephalomyelitis, also called chronic fatigue syndrome, or ME/CFS for short, has been affecting people for a long time. It has been triggered in people after viral infections. POTS risk factors as noted by Hopkins medicine (https://www.hopkinsmedicine.org/health/conditions-and-diseas...) "may begin after an apparent or confirmed viral illness, but it can also appear following surgery and other health events."

ME/CFS + POTS (very often comorbid) like chronic illnesses have been cropping up for a long time. Due to the array of symptoms experienced by everyone, its made it hard to differentiate between the combination of potential symptoms and individual symptoms in isolation and the fact that there's no single test to diagnose ME/CFS. The diagnostic requirements for POTS are much simpler and clear, although a cure is also elusive. There has also been a severe lack of knowledge within the medical community, as these aren't resolved illnesses, so patients have been brushed under the rug, misdiagnosed and prescribed treatments which have often been counter productive and even harmful in many events. The complexity of it all and lack of explanations or solutions for patients has frustrated doctors.

Lets go back a look at multiple flu epidemics and their long term outcomes.

In "Historical Insight into Infections and Disorders Associated with Neurological and Psychiatric Sequelae Similar to Long COVID" https://pubmed.ncbi.nlm.nih.gov/33633106/ they mention "Historically, the common symptom of altered cognition has been reported during earlier pandemics, which include the influenza pandemics of 1889 and 1892 (Russian flu), the Spanish flu pandemic (1918-1919), encephalitis lethargica, diphtheria, and myalgic encephalomyelitis (chronic fatigue syndrome or post-viral fatigue syndrome)."

In "Lessons from the 1918/1919 Influenza Pandemic" https://www.colorado.edu/asmagazine/2020/04/09/lessons-19181..., "Dr. G. Holliday wrote to the British Medical Journal on August 17, 1918, that “mental symptoms were frequent” in the cases he saw; Samuel West informed readers of The Lancet in Feb. 1, 1919, that “the depression which follows influenza is so constant that it ought to be regarded as part of the disease.” The medical correspondent for The Times, having contracted the illness himself, advised readers that “the most distressing symptom was a swift loss of mental capacity and then inability to think coherently.” “All forms of hysteria have been observed after influenza,” reported Thomson and Thomson in 1919,” such as hysterical convulsions and the so-called hystero-epilectic attacks.” “Post-influenzal neurasthenia is very familiar,” they noted, “post-influenzal psychoses” “frequently observed and reported.” They cited a study that asserted that influenza, “of all the infectious diseases . . . is the most likely to be followed by mental disorder.”

Note "Post-influenzal neurasthenia", or "an ill-defined medical condition characterized by lassitude, fatigue, headache, and irritability, associated chiefly with emotional disturbance.". In today's medicine, doctors are required to rule all known and understood causes of all your symptoms before coming to the conclusion that you suffer from ME/CFS. Thats if you're lucky to get a doctor who's heard of this and if your doctor had the patience to follow you through all these non conclusive diagnostic tests, all while not defaulting to the simple and all to common medical gaslighting which usually involve telling you its all in your head. Since after all, you're complaining of too many things wrong at once, everything seems inconclusive, so you sound a bit off, and mental capacity is most often affected, brain fog being a very common overlapping symptom between all these post viral conditions, and you're easy to dismiss. Combine brain fog, uncontrollable fatigue, POTS like symptoms, and patients are more often than not just seen as headcases, hysterical, and a waste of time. If you read stories of patients who are now diagnosed with ME/CFS / POTS, many have been ill for decades, spent years and years if not decades seeking answers, most of them no longer living among the masses but chronically ill and barely meeting their basic needs day to day, the majority unable to even work. They're referred to now as "millions missing", and they've been too ill to fight, to ill to be seen, too ill to be recognized.

Its not until there's pandemics or large groups affected by some viral strain that the media starts talking about a rise in deaths or illnesses that some fringe articles will dig deeper and mention how a subset of people seem to just "stay sick" etc, often without relating the similarity between outcomes after other viral illnesses. With Covid having been so impactful and so much money being invested in research, its being talked about quite a bit more now, finally. That being said, it was clear before this even left China that what was to follow would be just as bad as the virus itself. Some people already had "long-covid", or post-viral fatigue, or one of the many names that seem to all want to describe these illnesses, and what would seem to be this fresh discovery of "long-covid" and all these mysteries left all previous sufferers dumb founded since they had been brushed under the rug and medically gaslit for decades. Its almost like the medical community runs out of time trying to figure it out and eventually moves on and when it comes up again, they slap another title on it and start all over again, often without taking into account every previous instance that could be used as a starting point. Obviously every virus, often every strain, can infect differently and have a different set of primary symptoms, but it should be clear by now that post viral and often chronic conditions, especially after flu like infections, seem to have a definite overlap.

I remember watching clips and amateur news coming out of China in early to mid January 2020 and thinking to myself OMG, I hope this doesn't spread across the globe. The aftermath is going to be worse than the virus itself. Only reason I instantly thought this is my partner contracted SARS in 2003 and after barely surviving, having spent 2 weeks in the ICU, went on to develop a host of issues including stroke, ME/CFS, POTS, and brain fog to just name the main overlapping ones. Having dealt with this for two decades, having exhausted all options available in current medicine, the impact of long-covid or post viral illness has been devastating. It has stripped so many of their lives, it has left so many as dysfunctional shells of their former selves, unable to work or contribute in meaningful ways in their lives, not due to lack of desire or willpower, but a body and mind that won't follow. I've seen first hand the struggle of seeing someone fight with everything they have to just be themselves, a person who did what they had to in order to overcome whatever life through at them, but now, the harder they fight, the harder they fall as their bodies reminds them after any amount of effort, exercise, or too much brain work, that they are ill, and they crash, almost as a punishment for even trying to fight, exacerbating many of their symptoms for days, weeks, even months.

The long lasting effects of this will not only be those who were lost, but those who now depend on the system and their loved ones, while requiring more medical attention. When its one person, its one thing, when its a percentage of your population, regardless of the whole digit representing that subset, the costs are huge. You're talking about a whole percentage of your population who essentially becomes a disabled retiree at whatever age they get ill. Those costs pile up over a lifetime, as does the collective loss of productivity within society. While society will adapt and readjust, it doesn't change anything for the millions upon millions who spend the rest of their lives desperately seeking answers, cures, any simple advancement that will give them a piece of their old lives back.

alright.. done typing, thanks for coming to my Ted talk.

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randomopining|2 years ago

Fucoidan solves all of this. Amazing for post-covid issues.

peteyPete|2 years ago

There's references from the ME/CFS community testing this back in 2010. Considering how hopeless and desperate these people are and how they test everything on or off label, solo or with their doctors, if it was as simple as that, millions of people would be cured. Thats like "Have you tried yoga?"