What does it mean when an ME/CFS patient says they "got long covid" after catching SARS‑CoV‑2 (COVID)?

A couple ME/CFS patients on twitter have mentioned "getting long Covid" after being infected with SARS‑CoV‑2.

Does anyone have a longer explanation for what it might mean to "get Long Covid" if you're already an ME/CFS patient? Long Covid is a pretty big umbrella term.

Does it mean these patients got more ME/CFS symptoms? Or their existing symptoms got worse? Or maybe they got new symptoms that seem to be from COVID? Or something else?

I did ask the person who posted that comment but no response (so far).

I'm asking the question here because I feel like forum members are usually more thoughtful in their responses around naming and diagnosis.

 

Hi,

I think I am one of those people - I already had ME/CFS, starting in 2017, caught Covid in autumn 2020 and all my existing symptoms got worse & stayed worse...
I then got Covid a second time at Christmas 2021, and again I feel like my symptoms got a tiny bit worse and stayed worse, although honestly I can sometimes find it difficult to quantify when it's stretched over years.
I did also get a couple of new symptoms, but the worsening of existing symptoms felt like it was having much more of an impact.

Essentially I added Long Covid to the name of what I say I have for ( edit: ) three reasons -

1) the symptoms I already had got worse and stayed worse after having Covid
2) those symptoms are also associated with Long Covid.
3) people seemed to "get" that Long Covid was serious and debilitating more than they did with ME - I felt like I was being taken more seriously by "the average person"

I think that more or less covers my thinking.. I am particularly brain-fried this evening so apologies if there's some accidental nonsense in there!
(I make no apology for intentional nonsense)

 

Thanks for your reply, @josepdelafuente

I also got a response from someone else on twitter. Not posting details since it was in a DM (direct message) but here's the summary.

They got their long covid diagnosis from a long covid clinic. The diagnostic code given to them was U09.9 (Post COVID-19 condition, unspecified).

They believe the symptoms overlap but are also significantly different.

 

Several of my pwME friends have gotten long covid. I've been reading lots of posts in the Swedish groups on social media too, both ME, long covid and POTS groups.

As far as I understand it, they describe a kind of symptom exacerbation and deterioration that is different to what they have ever experienced before with ME, new symptoms, new kinds of symptoms, new symptom patterns, new symptoms clusters that behave differently to ME, lab tests that used to be normal are now showing differences that are known to be associated with/common in long covid, they are diagnosed with new conditions that are known to be associated with/common after covid, etc.

 

Oh - I did also get a diagnosis of both ME/CFS & Long Covid from the UCLH Long Covid clinic (edit: sorry to clarify - that's the University College London Hospital in London)

 

Not exactly what you asked but I think it is still interesting and related:

There was someone in my own group who was diagnosed with ME/CFS after a parvovirus infection. She said she went through hell but recovered after three years. Then she caught covid and long covid and although the symptoms weren't exactly the same, there was still a considerable overlap and she was convinced it was ME/CFS. She actually was convinced so much that she even questioned whether it was a second round of ME/CFS triggered by covid and believed it was probably still the original illness that returned.

 

Interesting information that pwME who develop LC seem to say it's different.

I suppose this is similar to the common analogy that some aspects of ME feel, in part, like flu, when I've always been able to tell the difference - the words used to describe symptoms may be the same, it may in fact be impossible to meaningfully differentiate them by description, but at least for me, they feel different.

(Although it can take me a day or 4 to be certain if something is an uptick in ME symptoms or a seperate virus)

 

I thought I'd add that this all started from responses to a twitter poll that I posted.

Twitter polls are not meant to be scientific, of course. I saw the poll as a way to get a conversation started about the interaction between Long Covid and ME/CFS.

I wanted to talk about whether Long Covid patients were getting a diagnosis of ME/CFS if they met the ME/CFS diagnostic criteria. (eg, "COVID-onset ME/CFS"? "COVID triggered ME/CFS"?)

I was curious about how often that was happening because I know that most doctors have gotten very little training about ME/CFS.

I do realize that Long Covid/PASC is a broad term that covers a lot of patients! Many won't meet any of the different possible diagnostic criteria for ME/CFS.

At any rate, for those who are curious, here's the link to my poll on twitter

To sum up, I was really expecting the discussion to be about Long Covid folks who ended up with an ME/CFS diagnosis.

I had not considered the possibility that someone could have an established ME/CFS diagnosis and then add Long Covid/PASC to that.

 

Hi ahimsa
For me it's simply meant taking a step down the ME severity ladder after a suspected Covid infection in 2020. Interestingly I had a similar onset pattern for the new level of severity after suspected Covid as at the start of my original ME in 2003. Both in 2003 and in 2020 I experienced three to four separate 'nasty viral infections' in relatively quick succession. After all of these infections I slowly 'recovered' to my previous level of functioning over a period of weeks, until suffering the final 'nasty infection' when I failed to make that recovery.

 

I have been referred to a LC clinic by my GP (this was actually suggested by one after I had a adverse reaction to the AZ vaccine but then got Covid). Suspect that I might get a LC dx on top of the current ME one.

The new symptoms after Covid would be

1. Sore chest and muscles spasms (I think from all the coughing but ongoing)
2. Feeling as if my lungs are sore inside and sore to breath (same as a virus in the 1970's the kicked off POTS big time for me)
3. My hair is falling out. Interestingly it seems to be in the areas that I lost through chemo because I have lost all my "chemo curls" that grew back
4. Feeling of a lot of "gunk" in my chest which I still cough up
5. Taste and smell strange. As an example the smell and look of spices (i.e. cinnamon) in a jar makes me want to throw up.

plus more

My ME weakness , PEM, brain fog are much worse.

 

In early 2004, an odd virus swept through my office. The symptoms were dry cough, terrible muscle pain, fever, headache, nausea.

Everyone caught it. And the majority had symptoms that lasted beyond several months. One young graduate had a persistent dry cough for a year. Anther ended up with secondary bacterial pneumonia. My supervisor coughed so much for months that he partially ruptured an eardrum. One colleague had a clear post-viral illness for a number of years (her symptoms baffled her doctors and she was never diagnosed).

Prior to catching the virus, my ME/CFS was mild and I was working full-time. My symptoms with this virus weren't any worse than anyone else's but I didn't get better. In fact, I remained ill with the same symptoms for well over 6 months. I saw disbelieving GPs for months for my persistent cough, fevers, muscle pain and worsening ME. I argued that it felt like I still had the virus as I certainly was still experiencing the symptoms. This view didn't get any traction with the GPs obviously.

Some symptoms that I had experienced in the first 2-3 years following EBV (which triggered my ME in 1998) such as tight bands around my torso and burning sensations on my spine returned with a vengeance as well as the buzzing and vibrating I feel throughout my torso and limbs. I still have them today.

After 3-4 months off work, I was able to return to work part-time. Some of the symptoms (eg, the dry cough) eventually faded away but my ME/CFS remained worsened.

When I read about people with ME/CFS getting covid, I'm reminded of my experience with this mystery virus.

(I hope I don't offend anyone with this. I'm not trying to make any points about Long Covid or diminish anyone's experiences with it.)

 

I would presume they have persisting and specific symptoms of covid infection on top of their regular ME symptoms. (Smell, taste and respiratory symptoms are the first one’s I think of). It may also have exacerbated their ME to a point they meet criteria for treatment of co-morbid disorders like POTS, MCAS.

It appears many people may also finally have their pre-existing ME officially diagnosed and recorded, as well as PASC, due to the increased awareness of the illness by the medical profession.

 

In the case I'm most familiar with, Long COVID resulted in a worsening of pre-COVID functioning and symptoms and the addition of new symptoms that were not there before COVID (for instance a new internal vibration and some chest pain).

 

Internal, and external, tremours- tick
Chest pains - tick

For at least 20 years.

 

I guess some of this comes down to how you choose to classify things.

I say that post Covid my ME has simply got worse. This worsening includes symptoms of breathlessness and chest pain that I did not have in my pre Covid ME. However I do not see them as 'new'.

Pre Covid I got breathless walking slowly upstairs, now I get breathless walking slowly on the flat. To me that's a change of degree of an old symptom.

Pre Covid I had pain in many parts of my body. Now that pain is more frequent and more severe and appears in more parts of my body, including the chest, where I did not get it before. Again to me this is a matter of degree rather than 'newness'.

 

Yup, here. Internal tremors for years, at times it was pretty intense. Was really interesting to see this with LC, confirmed so many things I suspected.

For chest pain I only got an echocardiogram. I wonder if a better test would have shown something. Lots of myo- and pericarditis only seen using the right imaging.

But it was the only time I actually saw functioning healthcare. It was pretty quick, but in hindsight it may have been a bit inadequate.

 

For me there was a clear difference between ME and long covid. I got covid early on. It was a severe flu which attacked my lungs and breathing. I was out of it for 3 weeks, in all over body pain, like an elephant on my chest and as though I could have easily just stopped breathing. After it broke, and you could feel it break and turn for the better, that I slowly got moving with ongoing breathing difficulty. After about 3 months, the lungs were clearing up and it took about a year for me to feel over it. I didn't get LC diagnosed as I don't have a GP. I still have smell and taste problems from it.

I very much associate my ME with swollen glands, sore throat, fevers, flare ups, hormonal issues and PEM, brain issues/cognitive problems, allergies. So I don't get 'lung flare ups' like i do with glands and throat, the breathing issues I have are different to the LC as it felt like a mild blockage in the lungs which sounded exactly like what my husband described. Now any breathlessness is from energy depletion / collapse although I don't try to lift weighs so I don't know. Also POTS. ETa on reflection I am struggling with ME and can't get any better than where I am at. It is possible it could be LC on top of the ME doing that.

My husband who has been diagnosed with LC hasn't had any cognitive issues at all or at least very long after the infection. He doesn't get any of those symptoms above. Still has a feeling of blocked lungs and gets exhausted from physical exercise but not cognitive. He developed temporal lobe seizures. He gets PEM in that after physical exercise like weights he has to have days or more off. Travelling exhausts him. so he can't do it every day. He is desperate to get back to his gym. Desperate. Also,, he does not feel good after a tiny bike ride. It gets the circulation going and helps lymph but he does not get the feel good factor or high, likely because he isn't able to exercise hard enough yet or maybe because he should be resting. He lost sense of taste and smell and still has some issues with this not being right.

I thought it might be because it depends upon the virus and where it has hit. Mine initially was the throat and brain stem.