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

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Hutan said:
And the lack of a major skew to female is interesting. Although this data is just at the 5 week mark and for any symptom. I hope that they will repeat the estimations at later points.
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Maybe PVFSs aren’t more common in women than men, but those who don’t recover and eventually get diagnosed ME then it becomes the high female-to-male ratio we see in ME (which is a similar ratio seen in many known autoimmune disorders).
 
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Ravn said:
The infuriating thing is that nobody knows. It's scandalous that nobody knows, that there hasn't been anywhere near enough research to be able to make even just an educated guess. It's not as if post-viral syndromes are rare, there's been plenty of opportunity to study them. Yet almost nobody, apart from those directly affected, has taken them seriously. But maybe, just maybe, long-Covid is changing that and is finally going to get us nearer some answers.
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Yes, it is infuriating. Post viral fatigue isn't rare indeed. Being fatigued and ill for several months after a virus is very common and still nobody cares and there's no research.

It is very interesting to figure out if PVFS and CFS are the same thing or not. I believe figuring out why post viral fatigue occurs in some people and not in others might unlock they key to figuring out CFS. Hopefully long covid will spark at least a little interest into PVF syndromes and CFS.
 
Mithriel said:
I have mentioned before that my husband had PVS after flu in the days before we knew anything about ME and never had any suspicion we could have the same illness. It was completely different in character to anything I had experienced.

Basically he was constantly exhausted, pale, and ill looking with no neurological problems though his thinking was muddy because of fatigue. Despite having to struggle to work he just started to pick up after about 9 months.

He had none of the variability of symptoms that was a cardinal sign of ME where he felt fine one day then collapsed the next. PEM is probably the most prominent of these variable things but most of my symptoms fluctuate.

My own belief is that a carful history from a competent, informed doctor could differentiate the 2 fairly soon after onset. Once we have a test I am sure that will be true.

PVS is a different disease from ME though it is possible for PVS to mask the symptoms of ME for the first few months if you have both. Like being exhausted after a viral illness but feeling better except you are left with asthma or coeliac disease.
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I don't agree with that. My illness started with a viral infection. For the first 12 years or so I did not have (noticeable) PEM. I had plenty of neurological symptoms and severely reduced stamina / endurance, but not PEM (possibly because didn't push myself very hard, who knows). Then after those first 12 years, my condition gradualy started to deteriorate and soon after I started experiencing PEM.

So initially my illness did feel more like PVFS, but over time it has transformed into full blown CFS/ME, I've read of other people experiencing the same.
 
Barry said:
It's good ... but is it just me? I'm guessing American journalists get paid by word count. Succinctness this article is not. Feels like: why say in 10 words what you can say in 25. Like I say it's good, but a bit of a flog. Needless to say, I don't include @dave30th in this category :).
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Long read because it’s NYT Magazine so not as newsy, traditionally comes with the Sunday NYT newspaper. Also it’s a “feature” article format, which I believe is their longest format reserved for leading articles in that issue.
 
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borko2100 said:
I don't agree with that. My illness started with a viral infection. For the first 12 years or so I did not have (noticeable) PEM. I had plenty of neurological symptoms and severely reduced stamina / endurance, but not PEM (possibly because didn't push myself very hard, who knows). Then after those first 12 years, my condition gradually started to deteriorate and soon after I started experiencing PEM.

So initially my illness did feel more like PVFS, but over time it has transformed into full blown CFS/ME, I've read of other people experiencing the same.
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The neurological symptoms are not typical of PVS. PEM is a shorthand way of describing something that is going on and is not very accurate. A recent guideline for doctors says that they should ask their patients to watch out for a relationship between what they do and the symptoms they get. I had a lot of neurological problems when I was first ill and undiagnosed but it never occurred to me to relate episodes of loss of speech or paralysis with what I was doing three days before. Since I got so much worse and think in terms of PEM it is much easier to work out.

The CPET findings of a problem with cellular respiration in ME give a reason for a lot of what we call PEM and has not been found in any other illness so far. If that is ME, it will be present from the start even while someone is experiencing PVS from the infection. The PVS will go away but the cellular damage (or whatever) of ME will carry on getting worse until it is noticeable.

If the fatigue of PVS is keeping activity to a minimum then the ME will not have a noticeable effect on day to day life until you recover from it.
 
It's M.E. Linda said:
My ‘first brush’ with ME/CFS/PVFS was as a post viral fatigue patient in 2001 and I was, indeed, given a PVFS diagnosis by a Consultant (!)

I was very surprised in 2019, on finding a few of my notes made in 2001/2, that the PVFS gave me:

PEM (delayed 12-24-36 hours)
aching muscles, especially neck and shoulder blades (just like I get now)
shortness of breath
racing heart
.....amongst others.

I ‘recovered’ from PVFS - to about 90-95% health - by 2005.
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leokitten said:
There are plenty of anecdotal reports of people having the variability and cardinal signs that also recover at some point. There are also anecdotal reports of people with ME who didn’t have this in the beginning and had a pretty mild initial PVFS course only to get ME.

I don’t think there is any evidence to date that suggests to us subsets who are going to recover or not based on clinical presentation and time course other than the longer it goes on the lower the chances get.
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Sorry the ‘quotes’ are the wrong way around, I was trying to bring across a post I had made on a different thread.

In view of recent discussions here, I am now trying to say

2001 PVFS, 7 months housebound/approx 4 years recovery to 90-95 and

2013 Sepsis led to M.E. (CFS on medical records)
 
borko2100 said:
I don't agree with that. My illness started with a viral infection. For the first 12 years or so I did not have (noticeable) PEM. I had plenty of neurological symptoms and severely reduced stamina / endurance, but not PEM (possibly because didn't push myself very hard, who knows). Then after those first 12 years, my condition gradualy started to deteriorate and soon after I started experiencing PEM.
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We all have different experiences. My experience is similar to yours, but I didn't have cognitive symptoms until after I was recovering from PVFS 6 years after viral onset. I started exercising again, which of course made me worse, that's when delayed PEM and the cognitive issues started.

I'm more disabled now from autonomic issues after relapsing from taking immune modulators which re-activated HHV6 and EBV at the same time back in 2001.
 
https://www.cam.ac.uk/stories/longCOVID
Includes some dismissive comments about “CFS” and still no interest from the quoted researchers about helping ME patients or acknowledging ME.. but they’re dying to step up to help LC.

“A lot of clinicians are sceptical of long COVID in people who haven’t had severe COVID, because of the experience with Chronic Fatigue Syndrome (CFS),” says Dr Nyarie Sithole, an infectious disease consultant and researcher in the University’s Department of Medicine. There has been much disagreement in the medical community over CFS – from its causes, diagnosis and treatment, to whether it’s even real.”
 
'We know this is real': New clinics aid virus 'long-haulers'

https://apnews.com/article/new-york...ew-york-city-74bbc1b8433e936ba6a31c25d5f36873

In case anyone has any envy about what the LC clinics have to offer:

At the Jamaica Hospital program, patients get mental health assessments, a lung specialist’s attention and physical exams that delve deeper than most into their lifestyles, personal circumstances and sources of stress. Several hundred people have been treated so far, Roth said.

The idea is to help patients “build their own healing capacity,” said Dr. Wayne Jonas, former director of the National Institutes of Health’s Office of Alternative Medicine. He is now with the Samueli Foundation, a California-based nonprofit that works with the hospital on marrying alternative ideas with conventional medicine.

The long-haulers get exercise and diet plans and group or individual mental health sessions. Recommendations for supplements, breathing exercises and meditation are also likely. That’s in addition to any prescriptions, referrals or primary care follow-ups that are deemed necessary.

“We’re not just saying, ‘It’s all in your head, and we’re going to throw herbs and spices at you,’” Roth said. With no tidy, proven answer for the complex of symptoms, “we do a common-sense approach and take the best of what’s out there to treat these people.”​

Not herbs and spices, just thoughts and prayers. That's just sure to work. Integrating CAM in medicine does not make CAM better, it only makes medicine worse and removes the only reason people should have to trust medicine: that it's supposed to be based on science and that experts don't just make stuff up or speak their personal opinion as if it were a fact.

Completely stuck in a loop. This is what an infinite loop looks like in real life.

Side note but I have no idea what a "physical exam that delves deeper into lifestyles, circumstances and sources of stress". What, like Phil Parker and his "diagnosing hands"?
 
Mithriel said:
The CPET findings of a problem with cellular respiration in ME give a reason for a lot of what we call PEM and has not been found in any other illness so far. If that is ME, it will be present from the start even while someone is experiencing PVS from the infection. The PVS will go away but the cellular damage (or whatever) of ME will carry on getting worse until it is noticeable.
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We really need a repeat CPET study of long COVID patients. I am not sure we can say that the cellular damage will get worse, only that it apparently it frequently gets worse. That might be everyone but we don't have proof of that from what I can recall.

If we can show the typical ME respiration findings using CPET on long COVID then it may go a huge way to validating ME in the eyes of many who currently do not take it seriously.
 
rvallee said:
I'm going to leave this here just in case I don't see it in my Youtube subscriptions, I will surely forget to look for it otherwise.

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"Over 60% of respondents said they aren’t getting the treatment they need." I don't think most people are yet aware that the treatments they need may not even exist yet, and that much more research may be required. SOME issues from blood clots, lung scarring etc. probably have more than a little research, but as we know many of the other symptoms are probably in research limbo so far as diagnosis, treatment and cure are concerned.
 
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