Is Long Covid a type of ME/CFS? Discussion thread

From Twitter - seems like the feel recovered but not recovered is a thing too... LC may be more of an issue than most realise
https://twitter.com/user/status/1496549970199166977

 

And then there's the issue of relapses. I'm not sure if anyone is paying close enough attention to this. I've lost count of reports of relapses, they're very common. That medicine still hasn't clued in on the major patterns, especially the common relapsing-remitting one, is absurd at this point. But then again that's what happens when extremely lossy compression is applied right at data input.

 

Sounds like the prevailing attitude is, so you felt really crappy but now you don't feel as crappy as before = must be recovered then.

 

Giving it some further thought it occurs to me that as one is improving whether in a linear way or up and down it would be quite normal to think that this was 'on the way to recovery' and therefore think in terms of 'recovering' at least.

There will be some who do. I'm not convinced anybody has good data for how many.

But there will also be those who don't and for them the next few years will be tough as it slowly dawns on them that it might not be turning out as they at first anticipated.

No one knows who that will affect. Or how many. But it will take a few years for the dust to settle on what is happening now. For individuals and as a group.

 

This Psychology Prof from Oslo tweets a lot about Long Covid and ME/CFS https://twitter.com/KunstJonas?t=EmlM44Oouu_y8GbJ_AXY0w&s=09

 

I'm a bit confused by the subject. Can someone explain the phrase "type of ME/CFS" for me?

Does "type of ME/CFS" mean defined by different diagnostic criteria? eg, Fukuda, CDC (derived from the IOM, I think), CCC, ICC, etc.

Or does "type of ME/CFS" mean a subgroup? Eg, a different type of onset, or a different symptom profile, regardless of how the patient was diagnosed?

It seems to me that with our current level of understanding if a patient meets a set of ME or ME/CFS diagnostic criteria, whether or not they once had COVID, then they are an ME or ME/CFS patient.

Not every post COVID patient who has symptoms that remain (which is how some people use the term "Long Covid") is an ME/CFS patient. So part of the problem may just be with defining what is meant by the term Long Covid.

Hope this makes sense.

 

It could simply mean ME/CFS with the known precursor of Covid-19 infection. The ME/CFS component might be the same, while other post-Covid problems, like lung injury, distinguish it from "types" of ME/CFS brought on by other kinds of infections / conditions.

 

Just discovered that CDC has updated information about ME and Covid-19. Perhaps it's been shared before, and I've forgotten, but here it is:

ME/CFS and COVID-19: What we know

CDC is working with partners and stakeholders to better understand post-COVID conditions and how they affect people with ME/CFS. Currently, there are limited data and information about the long-term effects of COVID-19. A recent report found that COVID-19 can result in prolonged illness, even among adults without underlying chronic medical conditions. Future studies will help identify whether some people with delayed recovery develop an ME/CFS-like illness.

It is especially important for people at increased risk of severe illness from COVID-19 to protect themselves. Currently, ME/CFS is not included in the list of medical conditions that increase risk of severe illness from COVID-19. However, people with ME/CFS might consider taking extra precautions to reduce their risk of getting COVID-19. We are learning more about COVID-19 every day. As new information becomes available, CDC will continue to update our recommendations and guidance.

https://www.cdc.gov/me-cfs/index.html

Copied to the CDC news thread.
USA Centers for Disease Control (CDC) news

 

This post has been copied and following posts moved from the Long covid in the media thread.

This passage stood out to me.

The suggestion seems to be that the ME/CFS onset is slower than LC, which is rapid. My experience of presumed LC is of slow onset (before I even recognised it) and then precipitous deterioration. I suspect it's hard for many patients experiencing this to tease it apart, as I had to look back with the retrospectoscope to appreciate it. Anecdotally people can describe recovering from a few days of acute "mild" COVID and then getting very sick a few weeks later, but some are also going straight in to the LC situation. I suspect there's similar variability in ME, also depending on inciting cause, but others here likely have a better view on this.

 

I was very definitely the case where EBV "hit me like a ton of bricks" and the whole thing was very compressed. I went from having way above average fitness level where I did 1000-calorie workouts regularly to often barely being able to get out of bed and rarely leaving my apartment in those first 6 months-1 year. There was no slow or gradual onset, just a big surprise and huge shock.

(I wonder if this was because I tried to do some workouts even during the acute infection and caused such a big damage as a result. I asked my doctor first about working out and he said "well, if you can" and me, the fitness freak thought I could of course. After all I always could when I had a cold and nothing happened. Then I realized that with the mono I couldn't but I still don't know if this had anything to do with the deterioration or it would have happened anyway. Doesn't matter, I'm still exactly the case Levine is talking about.)

 

I had an enterovirus and spent a week in bed. I recovered enough to go back to school but I was never right after that with lots of strange symptoms, probably POTS, speech and vision, homeostasis, pain and lack of stamina.

The CFS being slow onset is probably because of the 6 months of fatigue thing. CFS - when they redefined ME as that they could not have realised how useful it was going to be to them.

 

The virus that started ME for me was exactly as she described. Kaboom. Never the same again.

 

Odd statement from Levine, it's obviously false. It's certainly true in some LC cases, but false in many others. And it applies to many ME cases. It basically applies to both, certainly doesn't differentiate.

 

I didn't experience PEM after my initial viral onset until years later. I had a mild sore throat and ear that lasted for months with episodes of vertigo. I went out running a few times during the first six months of onset but was feeling ok after, but I didn't get that 'high' from exercise which was strange to me at the time.

It appears that LC patients experience PEM very soon after onset?