The Effect of COVID on ME/CFS

[SoporRose]

Can anyone point me to science-based, medically sound articles on how COVID affects people who already have ME/CFS before contracting COVID? I'm looking for answers to questions such as:

* How likely is COVID to make ME worse?

* If COVID does increase ME symptoms in the types of symptoms we have, what are the new symptoms likely to be? Are there are any symptoms that are unique to an ME-COVID mind-meld?

* If COVID does make ME worse, are there ways to combat the exacerbation?

*How can we tell if we have Long-haul COVID if we already have ME?

* Does having ME make it more likely that one will develop Long-haul COVID?

* Does having ME affect the efficacy of the vaccines we get? Do we need to get boosters more often than other people?

I'm sure there are other questions I ought to be researching, but of course I am too tired.

ME isn't the only factor that puts me at high-risk for all sorts of nasty stuff if I catch COVID. (I am much more afraid of having my ME worsen that I am of dying.) I have managed to avoid COVID mostly by continuing to stay isolated much of the time, but the isolation itself is affecting my health. With fewer and fewer people wearing masks, getting boosters, and keeping their distance, and with more and more folks gathering in closed spaces with inadequate ventilation, I am still concerned about my chances of contracting COVID — for myself the few others I see. I would like some solid, reliable, fact-based medical studies to help me make a decisions and to pass on to my doctors, who are very enthusiastic about giving me more research to so, and, perhaps, to send to my elected officials as well.

Heart-felt thanks to anyone who can point me to such studies or research.

[Aloysia]

I don't know the answers to most of your questions.

The answer I do know is that long-Covid is a form of ME. Long-Covid is ME that is triggered by the Covid virus. The majority of people with ME have it because it was triggered by a virus. Mine was triggered by mono (Epstein-Barr virus). A different triggering virus leads to some differences in symptoms. But a huge amount of symptoms are the same. For example, ME triggered by Covid can have some specific lung/breathing symptoms that would not be seen in ME triggered by other viruses.

All the research into long-Covid is very beneficial for the greater ME community because we've been ignored for so long.

Take care,

Heather

[SoporRose in reply to Aloysia]

Thanks, Heather.

That's my understanding of L-HC, too, which is why I am so so wary of getting COVID. My ME is perfectly capable of getting worse all on its own and does not need any help from some Novel Coronavirus. But I am so weary of the constant vigilance and isoaltion.

[murtoz]

I think your question has been severely under-researched. I'm only aware of one study: meassociation.org.uk/2021/0....

Apart from that, I can only give my anecdotal evidence. I had mild to moderate ME prior to the pandemic. I believe I caught covid once, mid 2020. I was mostly asymptomatic with a mild sore throat, but my wife was very ill at the same time. There were no tests yet so cannot confirm 100% but I'm 99% sure we had it.

After that, my symptoms got worse and I would say I became moderate to severe, often stuck in my bed in a dark room, and leaving the house maybe once a month (whereas before pandemic it was once a week). I also developed PoTS and my IBS got significantly worse.

I started taking nattokinase early this year (8000FU/day) and feel it has given me some of my energy back and would now say I am where I was prior to the pandemic. A lot of people with long covid are reporting similar results. The theory is that long covid causes microclots in the blood, and nattokinase helps resolve these. There have been some studies into this but not sure that medical science have reached a consensus here, or that they are even close to understanding the full picture. Some references though:

- pharmd.substack.com/p/frequ...

- webmd.com/covid/news/202212...

- healthrising.org/blog/2022/...

[SoporRose in reply to murtoz]

murtoz,

Thank you. I am so glad you found something that has restored some of your energy! I'll start printing out articles after I read through all the responses (I find it easier to read on paper than on a screen). The first one you cited seems to be exactly the sort of research for which I was looking.

I also have a currently quiet blood ailment (ITP), which I gather can be triggered by COVID or some of the treatments. If nattokinase is a blood thinner, then it's something I'll need to avoid.

I see you have baby in your photo. Children are wonderful, amazing (I have a couple grown ones) — but they don't do much for enabling one to rest. It's hard enough to be completely healthy parent. caring for an infant while coping with ME is beyond laudable.

I can't imagine that you had anything but COVID, especially with the effect it had on you. I hope your spouse made a complete recovery?

Thank you again.

Ruth

[bennevisplace]

You ask some pointed questions. I haven't found direct answers, but maybe there are clues in recent literature. This comprehensive review paper frontiersin.org/articles/10... brings out the many similarities between ME/CFS and Long Covid, while nature.com/articles/s41579-... regards ME/CFS as one possible outcome of a Covid infection.

So you could broaden your main question to "Is a systemic infection likely to exacerbate my ME/CFS?" I can't answer that.

[SoporRose in reply to bennevisplace]

That's an excellent question to feed the internet. While I and, I am sure, others, would like to know specifically about COVID, you're right that the broader question might net more useful answers than the more tightly focussed one.

And thank you for the specifics you give below. I would write a more fulsome response, but am about to crash.

[bennevisplace]

Anecdote relating to your first question healthunlocked.com/meandcfs...

[SoporRose in reply to bennevisplace]

bennevisplace,

I wanted to let you know that I have been slowly looking through the resources you listed and did toss your useful query into my search browser. My brain fog is making it difficult for me to bring sufficient focus to bear on the articles written for medicos rather than for a general audience, but I shall keep trying.

Thank you again,

Ruth

[bennevisplace]

frontiersin.org/articles/10... in which:

"Results: At 3-6 months after mild/asymptomatic SARS-CoV-2 infection, virus-specific antibodies in saliva were substantially induced signifying a strong reactivation of latent viruses (EBV, HHV6 and HERV-K) in both cohorts. In patients with ME/CFS, antibody responses were significantly stronger, in particular EBV-encoded nuclear antigen-1 (EBNA1) IgG were elevated in patients with ME/CFS, but not in HDs. EBV-VCA IgG was also elevated at baseline prior to SARS-infection in patients compared to HDs.

Conclusion: Our results denote an altered and chronically aroused anti-viral profile against latent viruses in ME/CFS. SARS-CoV-2 infection even in its mild/asymptomatic form is a potent trigger for reactivation of latent herpesviruses (EBV, HHV6) and endogenous retroviruses (HERV-K), as detected by antibody fingerprints locally in the oral mucosa (saliva samples)."

[Fificakes2]

I've got long Covid from December 2022. It made my M.E symptoms much much worse. Fatigue, temperature, light, brain fog...and the COVID cough. It hit me very hard so get the jab as soon as you can. I'm only just feeling a bit stronger now. 10 months on.

[Autumn_Leaves in reply to Fificakes2]

How rotten. Covid hit me pretty hard too, even though my body dealt with the infection rather quickly, the worsening of my ME symptoms has been quite significant.

[SoporRose]

Fificakes2,

Thank you for using some of your spoons to answer my questions. Really. I know how hard it can be to type even a few lines.

I am so genuinely sorry your ME is worse, but it makes sense that COVID would worsen ME/CFS. Ten months is a very long time and the repercussions of how you've been set back will last far longer, even if you recover back to your former state of health.

I will definitely be getting the next COVID shot. I had a booster a couple months ago; my doctor said to wait a few more weeks before getting the next one. Meanwhile, I've gotten my flu shot and will be going for my RSV (I prefer to get one jab at a time so that if I have a reaction, I know to what I'm reacting). And I wear an N95 whenever I leave my house.

I hope you continue to recover. Will you let me know how you come along? And thank you again for taking the time to let us all know how COVID affected to you.

Ruth

[Fificakes2 in reply to SoporRose]

rThanks and I wrote long replythen delete it by accidentMy health has definitely improvedeven it isn't back full strength can't do my normal daily things.do definitelythinthings,like volunteer jobThe GP referred me an arthritis clinic the consultant pressed places on my body that really hurt.AfterwardsI was diagnosed Fibromyalgia Afterwards,it was possible brought on by long COVIDI'm sorry it's not a more positive reply and you're certainly doing everything you can to keep yourself safe.Meg x

[Autumn_Leaves]

Here is a link to a study comparing post Covid patients, those without ME/CFS and those who already had ME/CFS.

thelancet.com/journals/ecli...

Spoiler alert: people with ME/CFS who catch Covid do a lot worse.

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[Autumn_Leaves]

In my experience, Covid definitely makes ME/CFS much worse. If you don’t pick up to your previous energy levels after three months ie compared to how you were affected before Covid, then you could attribute your increased symptoms to ME/CFS + Long Covid. There are about four different subsets of Long Covid — some definitely have ME/CFS as a consequence of having a viral illness but other LC patients may have post-ICU complications which is something quite different. Other people have persistent cardiac, lung or kidney conditions that show up on tests and can be monitored, so there is quite a huge variation in sub-types.

The immune system is highly individual and is determined by your genetics, age and medical history etc, so how one person responds to the vaccine is going to differ from someone else, although just because you have ME it doesn’t mean you can’t make antibodies. To a large extent you have to trust your body to do its job.

[Fificakes2 in reply to Autumn_Leaves]

tthank you and that's a very succinct reply. It makes a lot of sense, because the doctor told me that even though I had long COVID, she couldn't refer me to a long COVID clinic because I had no lung or cardiac complaints.

my body does make antibodies and it's just slower than other people's, so when I get an illness like cold it takes me longer to recover.

[Autumn_Leaves in reply to Fificakes2]

Yes, with ME, you see off the virus and then you have to recover from the impact it has on ME. I do not recommend taking too many risks when Covid is on the rise, because it’s not an easy recovery for a pwME by any means