News about Long Covid including its relationship to ME/CFS 2020 to 2021

All this about patients not recovering quickly is confusing me. After a severe body damaging infection like covid 19, why would anyone expect people to recover quickly?

If the lungs and vascular system are ravaged so they do not work properly the body needs to fix that even if the virus is gone. Think about how long a cut takes to heal. Even a sore throat hurts for a week or two after you start feeling better.

 

I have read of rare cases lasting 5 years. Not at all common though.

 

Said in my best stupid voice ... "duh, but its just a flu isn't it?"

 

Exactly. I think we will be seeing researchers figure out pieces of this puzzle for years. We should not assume anything about any new virus.

 

Agree so much with this.

I am around 8 weeks in after what was a mild case of unconfirmed corona and there is something very much ‘live’ about my continuing symptoms, rather than post viral.

I am also experiencing a marked increase in my ME symptoms, which is, I think, what could be causing GPS to use the term post viral (my GP did). I think they do not understand this virus as it is not behaving as a virus usually does, so it’s easier to try to squash it into boxes it really doesn’t fit.

 

This thread made me think about why we recover from other virus infections so quickly. It must be because what we think of as, say, a cold is actually the immune system's response to the infection.

Because we already have antibodies to the virus or a similar one we soon have a runny nose and all the other things our bodies do to get rid of it before it does too much damage.

 

Most cold and flu symptoms are indeed caused by the immune reaction. Only late stage damage is unique to the virus. Indeed a hyper immune response is a major way to die from the flu. Its the immune system that kills you in a lot of cases.

 

Please keep us posted, but I am hoping I next read you recovered or at least went back to your normal. I am not counting on it, but we all deserve to recover.

 

The problem is that doctors are classically trained to believe that disease is due to damage (lesions), rather than systemic dysregulation. Many don't appreciate that the lesion is often a symptom, not the cause.

In addition to the need for repair of lung tissue, there is likely significant dysregulation of the renin–angiotensin–aldosterone system that will take some time to correct.

 

I would agree we can’t assume anything at this stage. It is so early on after CoVid, it may turn out this suspected post CoVid patient group people may end up having health problems for a few months which will resolve, they may not. Equally I don’t think we can say we know some of these people will go onto develop ME, it’s all too early to know. I think the most important thing is in any future studies to clearly document post CoVid patients in their own category initially.

 

Thank you, that’s very kind. This is starting to feel like a new normal but I’m still not as bad as I could be

I have joined a forum called Slack which is shocking in the number of people flowing in with tales of being weeks to months in to COVID illness. Apologies if Slack is already mentioned on here- very Interesting reading for people with ME.

 

Sorry if I wasn’t clear. I am asking if you believe PVFS is synonymous with ME?

 

Vitality 360 was set up by Jessica Bavinton a physiotherapist that was involved in the PACE trial. https://me-pedia.org/wiki/Jessica_Bavinton

 

¯\_(ツ)_/¯

All evidence points to the fact that some viral infections leave a % with PVFS, a % of which remain ill and this is what we typically call ME, or a major subset of it anyway. The overlap is massive but that means little until adequately-funded research actually begins.

More than that I don't know and would rather science figure out than speculate.

 

We don't know if all pathogens can cause ME/CFS. It might well be possible that infection with certain pathogens never leads to ME/CFS. Also it is very likely that differences exists in the potential (probability) of a pathogen to lead to ME/CFS.

Is there any research into this? Based on what I've read on the forums EBV is one of the most likely viruses to cause ME/CFS.

Now, if there was a worldwide EBV epidemic, then certainly that would be followed by a ME/CFS epidemic also. However with Coronavirus this isn't certain. We can only speculate given that this is a new virus.

 

"Paul Garner: For 7 weeks I have been through a roller coaster of ill health, extreme emotions, and utter exhaustion
May 5, 2020
Paul Garner, professor of infectious diseases at Liverpool School of Tropical Medicine, discusses his experience of having covid-19"

https://blogs.bmj.com/bmj/2020/05/0...ith-the-constantly-shifting-bizarre-symptoms/
_____________

This post has been copied and the following discussion moved to this thread:Paul Garner on Long Covid and ME/CFS. BMJ articles.

 

"What happens once you recover from COVID-19? Are you better straight away? Maybe… but maybe not. Post Viral Fatigue Syndrome (PVFS) can be a debilitating illness and there is a growing amount of evidence that this novel coronavirus may be responsible for it, even after only mild symptoms during the initial infection."

https://www.youtube.com/watch?v=1MHlum4AOlY

 

ive not read further through the posts than your post but as a (highly suspected) covid patient myself who is struggling to recover i want to explain a bit more about our experiences.

I agree that people might not realise a serious virus can take time to recover from - having M.E as well i am confident that my recovery from this will be prolonged. However what we are seeing here is not the usual long recovery time type pattern. People are having reactivation of earlier symptoms 60 days in. For myself for example i am 45 ish days in or there abouts. About two weeks ago i felt pretty much normal, i didnt return to normal levels of activity because they are low for me anyway. i hadnt had chest/lung issues or shortness of breath for about two weeks. my lungs were absolutely fine - yesterday my lung symptoms all returned. Today i cant properly breathe again. last week after 4 days feeling completely normal i suddenly felt 'weird' and ended up back in bed for three days with ALL of the original symptoms including chills and hot sweats. A friend of mine is still having recurring temperature spikes 60 days in without an active infection. My husband was completely recovered also - back at work, back to riding his bike and long walks etc and yesterday he also started coughing again and now is exhausted, cant do much and short of breath. This is NOT post viral fatigue. We are not tired or just needing to rest more - we are having cycling of original symptoms again and again and again.

Nobody is listening t0 us, nobody is giving us any care. Ive got lung fibrosis already, asthma and reactive airway disease and i dont even know if i need a course of steroids - if that is safe? what i should do. I cant take abx due to MCAS and severe medication intolerance. GP expects me just to 'try some abx at home' are you kidding me? the last time i did that i ended up with a two hour long seizure, anaphylaxis and a two year recovery period. I am beyond disgusted at the lack of care for Covid patients who were not hospitalised

 

Hi! i'm in that slack - just joined the autoimmune section because i was bored of people waiting to return to 'normal' when we never will. Hope to see you there. (ive got same photo)