What happened to covid? and the research into long covid... 2023 feels different

[PatientlyWaiting]

Doesn't 2023 feel wholly different with respect to covid? While the country was obsessed with this virus for almost 3 years, especially that first year with lockdowns and 24/7 news coverage, etc, 2023 just has a very different feel. On some days I even forget about it. Offices are calling us back, many people don't plan their lives around this anymore and are resuming their social and travel lives from before ... (I understand many immune compromised people don't have this luxury, but just stating what I observe in peoples' behavior of the general population)... I've had a total of 5 shots now, I don't check the virus case counts constantly like I did anymore, and even if I did, the data wouldn't be that accurate since people don't test or report like they used to. I rarely see masks anymore when I go out. I even stopped wearing mine in most cases unless it's really crowded or I use a public restroom. I might resume masking if case counts go up (again it's hard to say when they do now). I did have covid once, and I did have some complications like a month of fatigue, worsening asthma, and sinusitis, but I eventually went back to baseline.

I guess I'm posting on here because in the beginning of this whole ordeal when we first found out about long covid, it seemed like the "silver lining" of all of this (if that term could even be applied to such a devastating virus) was that maybe this would shed a light on and give research money and attention to mysterious post-viral illnesses that cause a whole host of systems. In other words - what many of us suspect we have.

So did anything come of that? I recently googled Ron Davis and found there hasn't been any update on his Open Medicine webpage in more than a year ... Wasn't he doing something analyzing blood and biomarkers of long covid patients? After all this suffering, is society any closer to solving ME than we were 3 years ago?

Thank you.

 

[Tsukareta]

The covid situation was unnatural in the first place, it was said to be a super deadly pandemic but in the first few months the average person didn't know anyone who was dying from it, I still don't know anyone who did,
there must be some people out there somewhere who did but you could say that its people who would have died from the flu anyway, theres lots of videos of empty hospitals or dancing staff during that time when it was supposedly a crisis and the hospitals were all overwhelmed. Such 'pandemic' would occur very rarely in a natural world and the timing of it just feels too convenient with regards to the general state of technology, culture and geopolitics. If such pandemics could occur frequently, spread rapidly and cause mass death e.g. 30% of the population, as was the impression given at the start of the outbreak, the governments response to it was woefully inadequate, the borders were not even closed and trade continued, one way or another such a pandemic would cause the collapse of economies, nations, possibly wars. My feeling is that its not possible for such a deadly pandemic to actually occur and spread or around the world rapidly, maybe it would be more localized, if it were possible our governments would know about it and be way or capable of containment, lest they lose control over the populace and their monopoly on power and information.

The long covid thing genuinely did bring more attention and recognition to ME/CFS like illnesses and consequently was beneficial to people with the disease, but we don't know for sure if the mechanism of the disease is even remotely similar, despite the overlap of many symptoms, but its not an unreasonable assumption. What helps is that LC has a few more tangible and easily demonstrable symptoms than ME/CFS, and its onset can be easily correlated with a positive test for corona. Some ME/CFS researchers seem to have bridged the gap and included LC in their studies, probably as a way to garner more funding, which is lacking for just ME/CFS, I think we are seeing results from that approach but so far no giant breakthrough but I would keep an eye on what Bhupesh Prusty is planning to publish on.

 

[Rvanson]

They will not find a cure for ME/CFS due to LHC.

 

[PatientlyWaiting]

What’s LHC?

 

[Rvanson]

What’s LHC?

Long Haul Covid. Symptoms are similar to ME/CFS. I don't like the LHC name. Many of us are long-haulers. These people are not even 2-3 Years? I've had ME/CFS for over a quarter of a century, and many way past that.

 

[Viala]

Long Haul Covid. Symptoms are similar to ME/CFS. I don't like the LHC name. Many of us are long-haulers. These people are not even 2-3 Years? I've had ME/CFS for over a quarter of a century, and many way past that.

I agree, long covid may be some type of ME/CFS but it also may be something else with similar symptoms, but requiring a different treatment. So it's good and bad at the same time.

 

[Rvanson]

Dont know what causes CFS, in reality. Sure would like some Ampligen however. Lots of LHC are getting better, unlike ME/CFS. 5 hours after a restaurant meal I was sick with ME/CFS, thats all I know.

 

[Viala]

5 hours after a restaurant meal I was sick with ME/CFS, thats all I know.

Do you remember what you ate? What is something different than your regular diet? Or maybe a new ingredient or spice in that meal? I think my CFS is gut related as well, it definitely has to do something with microbiome.

 

[Rvanson]

Do you remember what you ate? What is something different than your regular diet? Or maybe a new ingredient or spice in that meal? I think my CFS is gut related as well, it definitely has to do something with microbiome.

Yes, I had Teriyaki Chicken, broccoli, rice and a cup of coffee. I have always suspected the Teriyaki Chicken, even though it tasted fine, I believe the contaminant was in there. I thought it was Salmonella poisoning but I doubt I will ever know. It's no longer there and a Carls Junior fast-food outfit is.

All ready LHC folks are being ignored, so please do not believe that any help for ME/CFS will help any of us out, whatsoever.

 

[Viala]

@Rvanson I've read similar story about a kid who got poisoned at some kids party, no other kid got sick, he got a stomach flu and never has been himself since then, suspecting that something that was in food changed his microbiome and it stayed that way. Could be salmonella but can also be anything, who knows what can get into our food by accident in food factories or during a meal prep. In your case it could also be teriyaki spice, I suspect MSG might have something to do with it and cause some kind of overload. A while ago I tried different probiotics inspired by Ken Lassesen's blog to see if changing microbiome would help, but never got any significant results with that. Probably it would require taking much higher doses for a long time.

All ready LHC folks are being ignored, so please do not believe that any help for ME/CFS will help any of us out, whatsoever.

Oh I know how it looks like, the current narrative is that ME/CFS folk have depression and LHC folk have anxiety.

 

[Rvanson]

I was amazed at how scared people became during the epidemic. I was not at all scared, just as I am not scared of death. Now that Covid-19 is declining so is the fact that no one who got better could care less about anyone with "long haul covid". There will be no cure for them, just as there is none for those of us with "Yuppie Flu" as the bigots called people with ME/CFS at the 1984 event at Incline Village, Nevada.

I am glad that I quit donating blood, not wanting to infect anyone with ME/CFS. Most of them can go to h**l as far as I am concerned. I will not donate any money or time to any humans that don't deserve it.

I will continue to help with "Meals on Wheels" until I am too old and weakened by ME to do so, however.

It pains me to watch young people who can't even get out of bed, living with their parents. What will they do when they die? At least I had almost 40 years of my life, but there will be no one to take care of me either since I lost my fiance' due to this very real illness, that finally took my last working years away from me as well.

Thankfully, I won't live a long life. They say loneliness takes 15 years off of a person's life and I sure
hope it does just that. I don't expect to live past my early 70's at all. I would not wish to live longer than that.

 

[Viala]

@Rvanson Isn't it bizzare though? After the magnitude of events last years, long covid should get much more attention, especially that it has 'covid' in it's name. And we still don't know if covid was a causing factor, it could be just a trigger like other triggers, some kind of infection or too much stressors at once. What's good in this situation is the fact that more people will get to know that something like CFS exists and this brings social awareness that can push things further. A lot of media coverage would be a huge first step to get us medical attention and financial support, so that we would not have to stress about what would happen to us later.

I think this is the saddest part that so many of us need to go through it alone or without sufficient support. I am still in my working years, not that I can work as I would like to, but I know what you are talking about. Some simple solutions could have made our lives so much easier and a bit happier, like having a professional caregiver or even live in caregiver, then some local social support and of course proper medical support, that would have changed a lot.