POLL: ME/CFS patients who caught COVID: did this make your pre-existing ME/CFS permanently worse, or did you recover from COVID without issue?

[Hip]

This is a poll for ME/CFS patients who already had ME/CFS, and then later caught COVID. The poll asks whether or not COVID permanently worsened your pre-existing ME/CFS.

So for all ME/CFS patients who have caught COVID, please indicate how COVID has affected your pre-existing ME/CFS, by selecting the poll option which specifies how much your ME/CFS has worsened after COVID, or did not worsen as the case may be.


In this poll the worsening of ME/CFS is quantified in terms of how much you moved down on the standard ME/CFS scale of: very severe, severe, moderate, mild, remission.

Just a brief reminder of that scale (fuller details in the link):

Mild — an approximate 50% reduction in pre-illness activity level
Moderate — mostly housebound
Severe — mostly bedridden
Very severe — totally bedridden and need help with basic functions

So for example, if you had moderate ME/CFS before COVID, and after COVID, you were permanently moved down to severe ME/CFS, then in this poll, state that COVID moved you down by 1 level on the scale.

By a permanent worsening of ME/CFS, we mean a worsening that has lasted at least 6 months after you had COVID.



This poll is open to both those vaccinated for COVID, and those unvaccinated.

However, this poll is not intended for patients who first developed their ME/CFS from COVID itself (it's not intended for pure long COVID patients, only existing ME/CFS patients who later caught SARS-CoV-2).

 

[SWAlexander]

For 2 1/2 years, it was severe. I´m now recovered 80 %.

 

[Treeman]

Initially covid left me hospitalised, bed ridden and unable to even wash myself. After 3 months I'd roughly returned to my pre covid level. All through that period I was taken valcyclovier, I suspect ebv and shingles play a role in my ME/CFS. I caught covid prior to vaccines been available, so had none. Strangely my sleep improved after covid.

 

[BrightCandle]

Moved me from mild to severe, although the acute infection wasn't so bad I crashed from a level of exercise I had been sustaining for a while and it put me in bed for 9 months. I am more or less back to that baseline 2 years later (all be it with a need for more treatment to keep the new problems at bay).

 

[Treeman]

For 2 1/2 years, it was severe. I´m now recovered 80 %.

How did you recover, naturally over time?

 

[Alvin2]

What a great thread idea.
I have been able to avoid covid do far afaik so i have no answer to the poll but i do look forward to seeing what the votes will be.

 

[Hip]

What a great thread idea.
I have been able to avoid covid do far afaik so i have no answer to the poll but i do look forward to seeing what the votes will be.

I caught COVID 10 days ago, thanks to a visiting family member who said they were routinely testing for COVID before coming around, but decided to stop testing without actually informing us. I live with parents in their 80s, who are at high risk of death from COVID, so that's why testing is important.

Although my COVID symptoms were mild, I barely had any cough or runny nose at all, at the moment I am extremely tired and brain fogged, and at present have slipped back into almost severe ME/CFS, where I am just lying down on the sofa for much of the day, with too little energy or mental focus to do anything other than watch TV.

I am hoping this is just temporary.

 

[SWAlexander]

How did you recover, naturally over time?

Not naturally - NO.
After being on Heparin shots for 10 days, I began to feel a slight energy boost. 20 days later my legs no longer feel like lead and I was not exhausted coming back from grocery shopping. Then came in addition to heparin, the inflammation medication (metex PEN) once a week.
Now I´m on Marcumar (blood thinner) daily and "metex PEN" once a week and I´m very pleased. No more POTS. Yehh.
In addition, I must take hydrocortisone for Corticotrope Insuffizienz. But I took hydrocortisone long before metex PEN blood thinner, without any ME CFS improvement.

 

[Alvin2]

I caught COVID 10 days ago, thanks to a visiting family member who said they were routinely testing for COVID before coming around, but decided to stop testing without actually informing us. I live with parents in their 80s, who are at high risk of death from COVID, so that's why testing is important.

Although my COVID symptoms were mild, I barely had any cough or runny nose at all, at the moment I am extremely tired and brain fogged, and at present have slipped back into almost severe ME/CFS, where I am just lying down on the sofa for much of the day, with too little energy or mental focus to do anything other than watch TV.

I am hoping this is just temporary.

I'm so sorry to hear this.
Once you recover from covid, strangle that family member

 

[ljimbo423]

Although my COVID symptoms were mild, I barely had any cough or runny nose at all, at the moment I am extremely tired and brain fogged, and at present have slipped back into almost severe ME/CFS, where I am just lying down on the sofa for much of the day, with too little energy or mental focus to do anything other than watch TV.

Although I'm not positive I had Covid, I'm pretty sure I did, back in July 2020, 4 months after lockdown here in the States. What makes me think it was Covid is both that I got it in July and I got swollen lymph nodes under my jaw that were about the size of a tennis ball and very, very painful.

That's never happened to me before or since that viral infection. My symptoms were mild other than those very swollen lymph nodes. I had almost no cough or lung congestion and no fever. I didn't have any lingering symptoms at all.

I was sick for 9 days, although after 5-6 days I thought it was gone, but it wasn't, it lasted a few more days. When I woke up on day 10, it was completely gone.

Good luck Hip with putting this behind you!

 

[Rufous McKinney]

I am hoping this is just temporary.

feel better....! and how disappointing...one's guests......I hope you parents are all right.

 

[Hip]

feel better....! and how disappointing...one's guests......I hope you parents are all right.

They were feeling tired also, especially after exertion like a short walk, but seem to be getting back to normal now.

 

[SWAlexander]

I am hoping this is just temporary.

Please have an XR after you have recovered.
My friend had Covid in 2020 and doctors gave her Albuterol. Now 2 years later she had finally an XR that shows lung tissue damage. Her appointment with a Pulmonologist is not until Sept.

 

[SWAlexander]

New
A new study suggests that #LongCovid is driven by neuro-oxidative toxicity.

Long-COVID post-viral chronic fatigue syndrome and affective symptoms are associated with oxidative damage, lowered antioxidant defenses and inflammation: a proof of concept and mechanism study.
Abstract
The immune-inflammatory response during the acute phase of COVID-19, as assessed using peak body temperature (PBT) and peripheral oxygen saturation (SpO2), predicts the severity of chronic fatigue, depression and anxiety (physio-affective) symptoms three to four months later. The present study was performed to characterize whether the effects of SpO2 and PBT on the physio-affective phenome of Long COVID are mediated by immune, oxidative and nitrosative stress (IO&NS) pathways. This study assayed SpO2 and PBT during acute COVID-19, and C-reactive protein (CRP), malondialdehyde (MDA), protein carbonyls (PCs), myeloperoxidase (MPO), nitric oxide (NO), zinc, and glutathione peroxidase (Gpx) in 120 Long COVID individuals and 36 controls. Cluster analysis showed that 31.7% of the Long COVID patients had severe abnormalities in SpO2, body temperature, increased oxidative toxicity (OSTOX) and lowered antioxidant defenses (ANTIOX), and increased total Hamilton Depression (HAMD) and Anxiety (HAMA) and Fibromylagia-Fatigue (FF) scores. Around 60% of the variance in the physio-affective phenome of Long COVID (a factor extracted from HAMD, HAMA and FF scores) was explained by OSTOX/ANTIOX ratio, PBT and SpO2. Increased PBT predicted increased CRP and lowered ANTIOX and zinc levels, while lowered SpO2 predicted lowered Gpx and increased NO production. Both PBT and SpO2 strongly predict OSTOX/ATIOX during Long COVID. In conclusion, the impact of acute COVID-19 on the physio-affective symptoms of Long COVID is partly mediated by OSTOX/ANTIOX, especially lowered Gpx and zinc, increased MPO and NO production and lipid peroxidation-associated aldehyde formation. Post-viral physio-affective symptoms have an inflammatory origin and are partly mediated by neuro-oxidative toxicity.
https://www.medrxiv.org/content/10.1101/2022.04.25.22274251v1

 

[Husband of]

Now that COVID has become highly prevalent everywhere, is anyone still trying their best to avoid it?

I live in NZ and we’ve got to the point now where most workplaces are going back to normal - working from the office instead of from home, with no intentions for this to ever change (but of course this is future strain dependent).
I’m at the point where I’m considering talking to my boss about whether I can continue to work from home because I dont want to pass COVID onto my wife. I’ve been making excuses so far - plumber coming, might be sick, etc.

We’ve mostly got omicron here, though there possibly is still some delta around. My wife goes out two or three times a week, but we try and minimise closeness to large numbers of people.

are other people doing all they can to avoid COVID, or have you become resigned to the possibility so aren’t taking any extra measures, or are you somewhere in between?

edit: should say, she is triple vaccinated with Pfizer, but I imagine some people on this forum would have avoided vaccination. That would make you more cautious I suppose.

 

[BrightCandle]

Now that COVID has become highly prevalent everywhere, is anyone still trying their best to avoid it?

If it wasn't for covid I probably would be outside and going for short walks rather than sticking around the house and garden. I still wear a mask when unknown status people come around. That first catch of Covid was devestating, I spent 2 years barely able to get up afterwards, its left everyone in my family with long covid of varying degrees. I don't want it again if it can be avoided, which as an ME sufferer is easy because I already have a life organised around minimal energy expenditure anyway.

 

[Husband of]

If it wasn't for covid I probably would be outside and going for short walks rather than sticking around the house and garden. I still wear a mask when unknown status people come around. That first catch of Covid was devestating, I spent 2 years barely able to get up afterwards, its left everyone in my family with long covid of varying degrees. I don't want it again if it can be avoided, which as an ME sufferer is easy because I already have a life organised around minimal energy expenditure anyway.

Sorry to hear that. Do you live with anyone else? If so, what if anything are they doing to prevent themselves from getting COVID?

I’m also fearful of getting long COVID myself, if it means neither of us can work; because having a reasonable income makes things a whole lot easier than the small amount of money we’d have if we were on sickness benefits (not to mention it could be a painful exercise to get one).

edit: that was a dumb thing to say; obviously I am fearful of getting long COVID because I’ll then have long COVID. I was just thinking about how i don’t want my wife to go from being able to afford supplements and the right foods, potentially private medical care if we can find something that might help, having someone cook for her, etc to not having that.

 

[livinglighter]

I have experience suspected COVID twice. The first occasion I had temporary worsening of ME symptoms followed by significant improvement. Second time I moved down half a level, but I had to repeatedly climb stairs during that period.

 

[Hip]

I ran a poll on one of the long COVID Facebook groups, asking long COVID patients how long it took, after their acute COVID infection, before their long COVID symptoms fully manifested?

Here are the answers to the poll:

• Long COVID hit me in full after just days — 16% (13 votes)
• Long COVID hit me in full after a week or two — 38% (30 votes)
• Long COVID hit me in full after around 1 month — 28% (22 votes)
• Long COVID hit me in full after around 2 to 3 months — 6% (5 votes)
• Long COVID hit me in full after about 4 to 6 months or longer — 11% (9 votes)

So it seems in most cases, long COVID hit around a week to a month after their acute infection.

 

[Long Haul Mono]

Now that COVID has become highly prevalent everywhere, is anyone still trying their best to avoid it?

Yes. I'm still working from home but that won't last forever. I'm focusing on what I can do (naturally) to bolster my immune system.

are other people doing all they can to avoid COVID, or have you become resigned to the possibility so aren’t taking any extra measures, or are you somewhere in between?

I'm doing all I can to avoid it like ... well, the plague.

... I imagine some people on this forum would have avoided vaccination.

Again, yes. My decision not to get vaccinated is based on justified reason and logic, and not rampant conspiracy theories. At the end of the day, what ever would come from the numerous vaccine shots (most likely bad/severe reaction) I would be the one that would have to deal with it. That also includes the possibility of being bed bound for the rest of my life, and I'm acutely aware of how little support or 'care factor' is given to CFS/ME/FM sufferers.

I'm under no illusion that a COVID infection may be as bad or worse than the vaccine, and it seems a case of "damned if you do and damned if you don't". What's worse is that I have no medical people I can openly discuss this with, ie they all seem "programmed" to say "get the jab".

What ever happened to "First, do no harm"???

Although my doctor recommended Novavax, I feel I am not well enough to "challenge" my "triggered" nervous system. For myself, at this point in time, the risks out-weigh the benefits.