Survey suggests post-viral fatigue form of long COVID might be the most common subtype

Hip

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In the COVID-19 Longhauler Advocacy Project Facebook group, I posted a poll asking members of that group which subtype of long COVID they most identify with.

Long COVID subtypes include: post-viral fatigue (similar or the same as ME/CFS), heart and/or lung damage (which may be permanent) and dysautonomia (POTS, NMH or temperature intolerance).

Below are the six main poll answer options, and the red and green figures show the percentage of long COVID patients who answered each of these options:
• I have post-viral fatigue, and it has not got much better over time — 50%
• I have post-viral fatigue, and over time it improved by at least 50% — 15%
• I have heart and/or lung damage, and it has not got much better over time — 4%
• I have heart and/or lung damage, and over time it improved by at least 50% — 8%
• I have dysautonomia, and it has not got much better over time — 22%
• I have dysautonomia, and over time it improved by at least 50% — 1%

As you can see from the above poll results, a total of 65% of long COVID patients in this poll most identify with having the post-viral fatigue subtype of long COVID, which is the type similar or identical to ME/CFS.

And so far, it seems most of these ME/CFS long COVID people are not getting much better.

Dysautonomia was the next most common subtype, with a total of 23% reporting they most identify with dysautonomia.



It is possible the results of this Facebook group poll are skewed because there may be more post-viral fatigue long COVID patients hanging out in this FB group (perhaps because the post-viral fatigue subtype is the more concerning or debilitating).

Also, one difficulty with this poll is that long COVID patients may suffer from more than one subtype. In the poll, the following instructions were provided:
Some people may not be sure which sub-type they have, or may feel they suffer from more than one sub-type. In this case, just give you best guess as to which sub-type you have, and if you are suffering with more than one sub-type, just select the sub-type you feel is the more severe.


If you are a member of the COVID-19 Longhauler Advocacy Project FB group, the poll can be found here.
 
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Hip

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Any idea how many have improved after being vaccinated (it seems to be a thing for some).
There was a recent Guardian article which provided some info on this — basically 57% of long COVID patients found their symptoms improved after the vaccine, but 19% got worse:
Scores across 14 common long-Covid symptoms were compared before and after the first vaccine dose. Data showed that 56.7% of respondents experienced an overall improvement in symptoms, with 24.6% remaining unchanged and 18.7% reporting a deterioration in their symptoms.

In general, those who received mRNA vaccines (Pfizer/BioNTech or Moderna) reported more improvements in symptoms, compared with those who got an adenovirus vaccine (Oxford/AstraZeneca). In particular, those who received the Moderna vaccine were more likely to see improvements in symptoms such as fatigue, brain fog and muscle pain, and less likely to report a deterioration, the analysis found.

Though it is not clear what subtype of long COVID these people have, and whether vaccination might improve some subtypes but not others.
 

NilaJones

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Hello everyone :). It's been a while since I've been around!

I have long covid and am fairly active with the community. I don't know a single LC person who doesn't have all three of these supposed subtypes. I think it is may be impractical to ask people to separate themselves into those three groups.
 

Hip

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I have long covid and am fairly active with the community.
Did you catch coronavirus, and this made your pre-existing ME/CFS worse?



I don't know a single LC person who doesn't have all three of these supposed subtypes. I think it is may be impractical to ask people to separate themselves into those three groups.
A few people made similar comments in my poll in the long COVID Facebook group; but most people answered my poll without issue (over 120 responses), selecting the long COVID subtype which they felt was the primary one in their case.

Perhaps some long COVID patients may not yet know which subtype most affects them, so it may just be their best guess as to which subtype is their primary one.

Even ME/CFS patients can have this problem: dysautonomia (like POTS or NMH) often comes with ME/CFS, and it can be hard for ME/CFS patients to work out what percentage of their symptom severity comes from the dysautonomia, and what percentage much comes from the ME/CFS.
 

Sushi

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Popular TV shows in the US are beginning to show characters who have long-haul Covid and have ME/CFS symptoms or POTS. A back-handed and unintentional type of advocacy but it may be reflective of statistics reported medically as all these shows have expert medical experts helping with their scripts.