Long Covid

[SoCal_Bear]

Separate thread from the other threads as this is a topic of interest in those threads.

I just watched this Long Covid interview with two women who have long covid and have been at the front lines of patient advocacy (WHO, health care and governmental agencies), studies, international efforts and behind the message in the bottle film Long Covid SOS. I highly recommend this. I will copy and link some of the resources on this youtube video for easy reference below.

One thing that they mentioned is that among long haulers is that symptoms and relapses do occur many months after. They also mentioned that covid appears to amplify weaknesses in sufferers. So, if you suffer from skin rashes for example, then long Covid symptoms tends to manifest in the skin. As someone  with multiple autoimmune and chronic health issues, I really don't want any more issues and don't want my children to risk having to live the way I do. The number of countries who recognize long covid is shockingly low.
 

 

Edited July 22, 2021 by calbear

[SoCal_Bear]

Zero Covid Alliance's Long Haul video series: https://zerocovidalliance.org/the-long-haul

Long Covid SOS' film: https://www.longcovidsos.org/film (translations available in 5 languages)

Open letter to Boris Johnson: https://3ca26cd7-266e-4609-b25f-6f3d1497c4cf.filesusr.com/ugd/8bd4fe_e3779d8fa84c4c32bbd8ed43d70cd3cf.pdf

 

[whitestavern]

Seems very similar to Lyme disease. 

[BeachGal]

BC 007, a potential long covid treatment that neutralizes autoantibodies caused by Covid. Very small number of patients who were treated but appears promising and safe. Might go into clinical trials this year, probably in Germany but possibly elsewhere.

https://www.fau.eu/2021/08/27/news/research/further-patients-benefit-from-drug-against-long-covid/

After the Department of Ophthalmology at Universitätsklinikum Erlangen announced their global breakthrough in early July 2021 of successfully treating a Long COVID patient (aged 59), two further patients are now on the road to recovery thanks to the drug BC 007. The team at the Department of Ophthalmology has used the approach to treat two more patients. A 51 year old man from the Allgäu region and a 39 year old woman from Middle Franconia both received the active ingredient BC 007 intravenously in an infusion lasting 75 minutes, and were then kept in the hospital for monitoring for a further three days. They have continued to attend outpatient appointments to monitor their health ever since. Both patients have already reported significant improvements in their performance and quality of life, and this has been corroborated in medical tests.

Following the pattern seen in the patient who was treated first, BC 007 also caused Long COVID symptoms in these patients to subside shortly after it was administered. ‘After someone contracts COVID-19, special autoantibodies start to circulate in their bloodstream. These then turn on the body itself and may damage certain structures within the body or affect circulation,’ explains ophthalmologist PD Dr. Dr. Bettina Hohberger. The drug BC 007 was developed several years ago, originally for patients with severe heart disease, but could now potentially be used in the fight against Long COVID. ‘In both patients currently being treated, we can see that BC 007 neutralises the harmful autoantibodies and retinal micro circulation, in other words blood flow in the smallest blood vessels in the eye, improves. We can prove that this is the case using optical coherence tomography angiography, or OCT-A for short. In addition, both patients experienced a reduction in their clinical Long COVID symptoms,’ confirmed Bettina Hohberger.

https://link.springer.com/article/10.1007/s40261-020-00903-9

 

@Plum One of the participant’s symptoms sound similar to your husband’s. Hopefully this treatment will pan out.

Edited September 1, 2021 by BeachGal

[SoCal_Bear]

This from the Atlantic. Headline: 

LONG-HAULERS ARE FIGHTING FOR THEIR FUTURE

Many people with long COVID feel that science is failing them. Neglecting them could make the pandemic even worse.  

https://www.theatlantic.com/science/archive/2021/09/covid-19-long-haulers-pandemic-future/619941/

 

[SoCal_Bear]

Largest long covid study from China.

https://time.com/6093164/long-covid-19-largest-study/

[Spy Car]

What they are not saying, or or obfuscating when they say it "looks like these people will have a long recovery" is that there is a high likelihood that people with Long Covid will never get better.

This illness has all the hallmarks of ME/CFS, including the defining characteristic known as "PEM" (short for "post exertional malaise), which means that when afflicted people try to push beyond very narrow energy boundaries, they crash and their symptoms (like crushing fatigue and cognitive impairment get worse).

No one gets better from ME/CFS. There are no cures and no effective treatments. Not at this point.

Perhaps billions in research dollars may help, but at this point it looks quite dire.

The worst thing a person who has Long Covid can is to think they can take a "mind over matter" approach and push through it. Exertion causes people to get even sicker.

Long Covid is by far the scariest part of this pandemic. To call it a "looming problem" is likely a massive understatement.

Bill

 

 

[popmom]

1 hour ago, Spy Car said:

What they are not saying, or or obfuscating when they say it "looks like these people will have a long recovery" is that there is a high likelihood that people with Long Covid will never get better.

This illness has all the hallmarks of ME/CFS, including the defining characteristic known as "PEM" (short for "post exertional malaise), which means that when afflicted people try to push beyond very narrow energy boundaries, they crash and their symptoms (like crushing fatigue and cognitive impairment get worse).

No one gets better from ME/CFS. There are no cures and no effective treatments. Not at this point.

Perhaps billions in research dollars may help, but at this point it looks quite dire.

The worst thing a person who has Long Covid can is to think they can take a "mind over matter" approach and push through it. Exertion causes people to get even sicker.

Long Covid is by far the scariest part of this pandemic. To call it a "looming problem" is likely a massive understatement.

Bill

 

 

I take Acyclovir. And it made a huge difference. My doctor believes it's caused by reactivated, chronic Epstein Barr. The doctor who dx'ed me--I chose him  because he is regarded as a very good, thorough diagnostician. He is a psychiatrist. When I went to him for the first time CFS/ME wasn't even on my radar. People like ME don't get CFS. That couldn't happen to me! I chose a psychiatrist because I firmly believed my symptoms were all psychological. I thought it was depression and cptsd (which is still a factor for me). I filled out pages and pages of forms and checklists. He spent an hour and a half with me at my first visit. 

When he told me it was CFS, I was in total disbelief. I took the prescription home but didn't get it filled for weeks because there was no way I could have CFS. I thought--what a waste of time. Then I started reading about CFS. okay so I do experience x y and z... I decided to get the Acyclovir filled. Still dubious of all of it at that point. Within days my brain fog was dramatically better. Unless you've experienced it, you cannot imagine how debilitating the brain fog is. Absolutely miserable. Then my energy levels improved. I was able to do so much more work, and it felt GOOD. I do still have an occasional crash PEM, but nothing like before my dx. 

I know there are no studies to prove this--I've looked. So you may write this off as a placebo effect, but I am certain it's not. I could not accept CFS as my dx until after the medication started working. I also realize that CFS is the type of illness that could be caused by a variety of things, so I would not say this treatment is for everyone. I just got lucky, I guess.

[Spy Car]

2 hours ago, Plum said:

I’ve seen that firsthand. You can’t push yourself. There are no “good days” just days where your symptoms are better at masking themselves. You push you pay. 

Yep. Anyone who has a "hard charger" who is struggling post-Covid, please try to convince them that this is NOT an illness they should attempt to push through on will power. That would only good them great harm.

Bill

[busymama7]

2 hours ago, Spy Car said:

Yep. Anyone who has a "hard charger" who is struggling post-Covid, please try to convince them that this is NOT an illness they should attempt to push through on will power. That would only good them great harm.

Bill

I am living this.  And it is horribly depressing.  I am generally go go go all the time.  I like to be busy and I like to do projects and accomplish things.  Laying around all day sucks but  I don't have another choice.  

[Spy Car]

1 hour ago, busymama7 said:

I am living this.  And it is horribly depressing.  I am generally go go go all the time.  I like to be busy and I like to do projects and accomplish things.  Laying around all day sucks but  I don't have another choice.  

I'm very sorry to hear you are going through this. Respect what your body is telling you.

People with ME/CFS have a concept called "pacing," which--very simply--is knowing how much energy you have on any given day (which can be not much, or none at all) and then not pushing beyond the limits, as there will be a rebound effect (aka PEM). On days you feel better, you can cautiously do a little more, but don't overdo it. Crashing from PEM sets up bad cycles.

It sucks. Big virtual hugs.

Bill

 

Edited September 2, 2021 by Spy Car

[Laura Corin]

5 hours ago, Spy Car said:

What they are not saying, or or obfuscating when they say it "looks like these people will have a long recovery" is that there is a high likelihood that people with Long Covid will never get better.

This illness has all the hallmarks of ME/CFS, including the defining characteristic known as "PEM" (short for "post exertional malaise), which means that when afflicted people try to push beyond very narrow energy boundaries, they crash and their symptoms (like crushing fatigue and cognitive impairment get worse).

No one gets better from ME/CFS. There are no cures and no effective treatments. Not at this point.

Perhaps billions in research dollars may help, but at this point it looks quite dire.

The worst thing a person who has Long Covid can is to think they can take a "mind over matter" approach and push through it. Exertion causes people to get even sicker.

Long Covid is by far the scariest part of this pandemic. To call it a "looming problem" is likely a massive understatement.

Bill

 

 

Yes. At this stage I'm not too worried about acute disease, but I really want to avoid infection if I can because of the risk of Long Covid.

Edited September 2, 2021 by Laura Corin

[Laura Corin]

Good discussion of each of these three possibilities 

https://www.economist.com/science-and-technology/2021/04/29/researchers-are-closing-in-on-long-covid

You can read it by registering without giving card details. 

[Ausmumof3]

5 hours ago, busymama7 said:

I am living this.  And it is horribly depressing.  I am generally go go go all the time.  I like to be busy and I like to do projects and accomplish things.  Laying around all day sucks but  I don't have another choice.  

I’ve been wondering how you’ve been doing.  I’m sorry to hear it’s still not back to normal.

[busymama7]

3 hours ago, Ausmumof3 said:

I’ve been wondering how you’ve been doing.  I’m sorry to hear it’s still not back to normal.

I got the Pfizer vaccine 4 1/2 weeks ago. First week was rough. 2nd week was amazing.  I had energy and was able to catch up on some things. 3rd week was ok. We were beach camping so something that would be tiring anyways but it went fine.   Got my second shot and everything is back and probably worse than right before my 1st shot.   I still don't regret getting the shot because I am very concerned about what would happen if I got it again.  I do wish I hadn't gotten the second.  There is quite a bit of evidence that those who have recovered don't need it but I wanted to be fully vaccinated in case it was needed for certain things.  So here I am 🤷‍♀️. 

Thanks for thinking of me. ❤️. 

 

[mommyoffive]

1 hour ago, busymama7 said:

I got the Pfizer vaccine 4 1/2 weeks ago. First week was rough. 2nd week was amazing.  I had energy and was able to catch up on some things. 3rd week was ok. We were beach camping so something that would be tiring anyways but it went fine.   Got my second shot and everything is back and probably worse than right before my 1st shot.   I still don't regret getting the shot because I am very concerned about what would happen if I got it again.  I do wish I hadn't gotten the second.  There is quite a bit of evidence that those who have recovered don't need it but I wanted to be fully vaccinated in case it was needed for certain things.  So here I am 🤷‍♀️. 

Thanks for thinking of me. ❤️. 

 

Oh man.  Sending some hugs.  I am sorry that the vaccine didn't help you.  Did you just get the 2nd shot? 

[busymama7]

Just now, mommyoffive said:

Oh man.  Sending some hugs.  I am sorry that the vaccine didn't help you.  Did you just get the 2nd shot? 

It's been 10 days.  Initial reaction wasn't bad.  My two teens had it rougher than me the first day after the 2nd shot but they haven't had covid (I isolated and didn't spread it).   

[mommyoffive]

1 minute ago, busymama7 said:

It's been 10 days.  Initial reaction wasn't bad.  My two teens had it rougher than me the first day after the 2nd shot but they haven't had covid (I isolated and didn't spread it).   

Maybe there is a little hope that it follows your reaction to the first shot?  With the first week being rough and then getting better?  

[KSera]

2 hours ago, mommyoffive said:

Maybe there is a little hope that it follows your reaction to the first shot?  With the first week being rough and then getting better?  

I’m hoping this as well. I can’t even imagine how frustrating to start finally feeling better and then to be back to feeling worse. I really hope it’s just part of the process and you’ll be feeling improved again soon. What a frustrating illness 😔. 

[SoCal_Bear]

New study shows double vaccination halves risk for developing long covid. (Some good news!)

https://www.forbes.com/sites/roberthart/2021/09/02/vaccines-slash-risk-of-long-covid-from-breakthrough-infections-study-finds/?sh=1dbc4f175f3b&utm_source=COVID+-+ZOE+COVID+Study&utm_campaign=426883587a-EMAIL_CAMPAIGN_2021_08_27_09_04_COPY_01&utm_medium=email&utm_term=0_9878f64c38-426883587a-456342530&mc_cid=426883587a&mc_eid=6ea81ceac0

[PeterPan]

On 9/1/2021 at 7:57 PM, Spy Car said:

No one gets better from ME/CFS. There are no cures and no effective treatments. Not at this point.

Pretty emphatic, not accurate. I got better.

Guy with long covid at HBOT clinic where I go (for my head, got concussion in a cave then a river then sledding ) is getter better. 
 

Just because the medical system doesn’t tell you how doesn’t mean it can’t be done.

 

[PeterPan]

On 9/2/2021 at 9:44 AM, busymama7 said:

fine.   Got my second shot and everything is back and probably worse than right before my 1st shot.   I still don't regret getting the shot because I am very concerned about what would happen if I got it again.  I do wish I hadn't gotten the second

HBOT can possibly turn it around. I got pretty messed up with my first Moderna but 3 HBOT have mostly turned it around. I think the man with severe long covid did 20 sessions and looked great by the time he was 11 in.

[Spy Car]

5 minutes ago, PeterPan said:

Pretty emphatic, not accurate. I got better.

Guy with long covid at HBOT clinic where I go (for my head, got concussion in a cave then a river then sledding ) is getter better. 
 

Just because the medical system doesn’t tell you how doesn’t mean it can’t be done.

 

The recovery rate from ME/CFS is near zero. Recovery is almost exclusionary.

Separating slow recoveries from Covid from a ME/CFS-like illness is something that is unclear at the moment. The definitions sweep many post-viral patients into the same category. I hope (and suspect) that there will be many people who are in the "slow recovery" cohort who will have a different outcome that those who develop PEM and an illness that is indistinguishable from ME/CFS.

Bill

 

 

 

 

[busymama7]

1 hour ago, Plum said:

I have to imagine this must be related to the 1/3 of long covid sufferers that were cured after getting their vaccine. 
 

to be fair when I researched CFS there were stories of people curing themselves by doing absolutely nothing for a year. They couldn’t push themselves at all. I think I would have gone a bit crazy stuck on bed rest for a year but that’s what they said it took. 

I am tempted to try this but the disruption to my family would be SO high and if it doesn't work....  Right now we are surviving by me napping daily and really pacing myself not to do more than one thing daily.   

[mommyoffive]

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