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Has anyone with ME/CFS had Covid?

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I’m hoping to hear from people who have ME/CFS and then got COVID. Author Laura Hillenbrand had the misfortune of getting it and shared her story on Facebook. Though she was quite ill I was happy to hear that she did not need hospitalization. I don’t know how she’s doing now or if it caused a relapse.

I’m sure these are concerns we all have.
 

Sushi

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I’m hoping to hear from people who have ME/CFS and then got COVID.
A number of members here have had it, so hopefully they will respond. As I remember, though they got pretty uncomfortably sick, I don't remember anyone reporting an extreme case that required hospitalization....but then my memory could well be faulty.
 

gbells

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Here's Hillenbrand's covid story.

I had coronavirus about two months ago. I went into it following a low inflammation diet-no red meat, veges, vit D3, extra vitamin C (1.5g/day),no artificial sweetenter, low vegetable oil, hemp oil for EPA, avoided GMO roundup foods (commercial grains and meats). Live yogurt for probiotics. No smoking but vaping light efluids was ok. I have lupus and ME and take immunosuppresants so I am considered at risk. Probably contracted at the dollar store. Initial symptoms were 1 degree body temperature elevation, sore throat, headache then progressed to mild muscle ache. It took about seven days to get bad, then crushing depression for a few days and severe fatigue (sleeping all day). The fatigue reduced my exercise tolerance so I could only walk about two blocks (versus being able to walk/jog up to 1 mile pre-infection) and had about 25% loss in lung capacity but it I didn't need oxygen, just rest and I felt the best eating mostly vegetarian during that period. It took about a month to feel over it.

For ME I take curcumin (C3 time release) which is anti-inflammatory along with a bunch of other apoptosis inducing supplements.

I avoided ibuprofen and only took acetaminophen and gabapentin for pain because ibuprofen was found to worsen covid.

The reason I did the low inflammation diet is because most of the damage to the lungs is from excess inflammation causing too much immune damage. Countries that follow low inflammation Asian diets (ie. Thailand, S. Korea and Japan, fish and vegetables diet) have half the death rates of Western countries. But the US government supports the food industries so they aren't publicizing how the American diet worsens covid and the information isn't widespread.

Interestingly, I never had a fever but I did have the other covid symptoms. I suspect the depression is caused by the virus and it was well treated with 24% CBD oil and positive self talk. It lifted as I recovered.
 
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I think I had it. I'm in the UK and couldn't get tested. My wife and daughter had been to Rome in February, a week before Italy got locked down due to the virus. There are now findings that the virus was in Rome in December 2019. I started with a low grade respiratory infection which lasted 3 weeks. I never got a high fever, I rarely do when I have cold infections because I have panhypogammaglobulinemia. It then turned in to vertigo which lasted a further 8 weeks. I just had to wait it out. Mood, energy levels etc. where all down. After the 11 week period it still took me a few weeks to get back to my pre infection health level. My wife was also left with worsened asthma after her infection and had to obtain extra care for the condition. She's a teacher and also couldn't be tested in the UK. My daughter was fine. If the UK government ever decides to test with anti bodies I'll take a test. I've never had a reaction to a cold virus like it before, I think it was more than just a coincidence.
 
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I think I had it. I'm in the UK and couldn't get tested. My wife and daughter had been to Rome in February, a week before Italy got locked down due to the virus. There are now findings that the virus was in Rome in December 2019. I started with a low grade respiratory infection which lasted 3 weeks. I never got a high fever, I rarely do when I have cold infections because I have panhypogammaglobulinemia. It then turned in to vertigo which lasted a further 8 weeks. I just had to wait it out. Mood, energy levels etc. where all down. After the 11 week period it still took me a few weeks to get back to my pre infection health level. My wife was also left with worsened asthma after her infection and had to obtain extra care for the condition. She's a teacher and also couldn't be tested in the UK. My daughter was fine. If the UK government ever decides to test with anti bodies I'll take a test. I've never had a reaction to a cold virus like it before, I think it was more than just a coincidence.
@Treeman Thank you for sharing your story. I’m glad to hear that you finally return to your pre-infection health.
 
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@Tammy - yes, and I have a friend here (who doesn’t have ME/CFS) that absolutely got COVID but tested negative also. Her Dr said she was one of the 30% who have it but test negative. Unfortunately she has turned into a “long hauler” and I fear she may develop ME.
 

Tammy

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Her Dr said she was one of the 30% who have it but test negative.
30% of people with covid 19 symptoms are testing negative? I havn't really researched it.

Where I live, an employee of an assisted living center tested positive............then subsequently tested negative two different times with a few days in between testing. I don't know if this employee had symptoms or not. Anyway, makes you wonder what the percentage of testing accuracy there really is.
 
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Wolfcub

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I had it. But was not tested positive as tests were hard to get on April 2nd in UK, unless I'd been admitted to hospital with severe respiratory symptoms. That is what I was told by NHS 111 when I phoned them, with the classic symptoms. The doctor who spoke to me was also convinced from my symptom profile that it was Covid.

The symptoms were quite dramatic and very sudden. Like nothing I'd ever had before. Not like any ordinary flu I'd ever had, and certainly nothing like any cold,
But I'd had unusual gut issues for a couple of weeks before....so I was never sure WHEN I got Covid, but I was 100% sure I did get it.
I actually felt better with the ME/CFS for about 3 weeks after recovering from Covid!!
But then things came back. In some ways worse (new symptoms, a bit like mild IBS) And in other ways much better (energy much better) which seems to have continued, but I am not so bad at all.
 
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Like nothing I'd ever had before. Not like any ordinary flu I'd ever had, and certainly nothing like any cold,
But I'd had unusual gut issues for a couple of weeks before....so I was never sure WHEN I got Covid, but I was 100% sure I did get it.
I actually felt better with the ME/CFS for about 3 weeks after recovering from Covid!!
But then things came back. In some ways worse (new symptoms, a bit like mild IBS) And in other ways much better (energy much better) which seems to have continued, but I am not so bad at all.
@Wolfcub - thanks for sharing. WOW! So glad to hear your energy has improved! I'm sure that would be interesting information for the ME/CFS researchers!

My best friend got COVID in March - she doesn't have ME/CFS but she does have fibromyalgia, congestive heart failure, AFIB, and severe asthma...and she's 80 years old!! She was sooo sick she couldn't remember anything from that time. Never had anything like it before. She was in the ICU on oxygen for 3 weeks, but didn't have to be intubated. BUT, she has since fully recovered! Her husband has been on chemo for over a year for cancer, has severe dementia, and is diabetic, and he didn't even get it even though she was with him several days while running a high fever! Amazing. Goes to show you how unpredictible this thing is.

@Wolfcub - I'm curious, if you don't mind my asking, your age?
 

gbells

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Just for clarification............Her COVID test was negative.........however her Dr. diagnosed her case as COVID because of her symptoms.
We didn't have testing available. Given the loss of smell and match for the other covid symptoms my diagnosis was presumptive but likely. After the second infection recurrence I didn't get it again so I believe I am now immune. It has been two months.
 
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I know two people in my ME group on facebook who have had it. Both recovered.

Also the feeling better after a cold thing, I've never had that but I certainly feel great for 24 hours before the worst of the cold or virus hits. I jus tput this down to immune modulation. When the body modulates up especially on TH1 we tend to feel infinitely better, at least I do. However I am sure this is known info. I spend most of my time modulating my immune system up with various herbs, andrographis paniculata is brilliant for this as it's very strong. I know when I've reached a nice level as I am super hungry, often this happens before a cold, you get very hungry. As it is the andro demands more energy not because the body has a virus but because it's modulated th1 and immune function UP. When I am up I feel pretty great. From March to October anyway. All the other months of the year are much harder and require a more aggressive immune modulation approach. I found siberian ginseng excellent this in the past. I also take an immune tonic that's anti viral to clear my immune system down when I am really struggling. Cleardown takes about 7 to 11 days. All of this lowers immune overhead and allows the body to be less inflamed overall.

This is just my theory really, but I am convinced this is true. Lots of the drugs out there, even antabuse for lyme involve htis up regulation of immune function, oxymatrine/equilibrant does the same thing. I also have a theory that valtrex nad valcyte do a different but similair thing too.

At the same time if a patient is severe, small doses are needed. When i started my viral tonic I was on 2 drops 3x a day, a teaspoon just killed me with unbearable fatigue. Now I can tolerate a teaspoon just fine. Acclimatisation to the tincture or anti viral cleardown? I haven't a clue.

Let's hope nobody gets super sick, I don't fancy my odds, I'm expecting a rough ride.
 

dreamydays

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This will be a big influx of ME patients. I feel that most ME sufferers that get covid will have mild symptoms but for a longer time, we may have some protection against developing severe covid. But thats just my opinion. I am shielding as I don't need any more medical problems to deal with, but a lot of us already live in permanent lockdown. I have had a little more sympathy and understanding from friends and family who were stuck indoors. But unlike them I can't get any work done, or decorate or have a few beers and dance!!!
 

gbells

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I think nagalase testing is valuable because you can treat with GcMAF. Just don't treat longer than 4 months. I did and got systemic lupus erythematosis from it. If nagalase is high you can't make new antibodies.