Concerns about premature linking of Long Covid and ME

Rain

Rain

Senior Member (Voting Rights)
I do of course see the hope and positive possibilities in this. But I’m starting a thread for discussing concern around it as well.

Please have in mind that we know nothing about long time effect from Covid, nothing about how long it will last. It might become like Mono or lung infections where some patients are set back for up to two years before functioning normal/being able to exercise again.

Being set back for a while after a virus is not that unusual. What happens if most of the cases snap back to where they were before after a while? This is the kind of patients Wyller and others have built their entire career around. It has hurt our case already.

From my personal experience: I have been in this game for quite some time. I have had friends-of-friends getting in touch over long time post-viral ME-like symptoms several times. Some got ME-diagnosis, others not. All of them have become spontaneously better after 1-3 years. Almost none of them/their environment realize their pure luck, often they are seen as clever/an inspiration/doing it right, and the rest of us who is still ill end up in some form of victim blaming.

Edit:
I also think there could be possible benefits from having Long-Covid being researched from scratch without the connection. If they discover something that ME-researchers has not already thought of, it would be easy to test if ME-patients have the same
 
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Long covid appears to be a name for a variety of problems, some of which are very similar to ME/CFS. The lack of research to characterize these patients prevents saying more.

Patients should point out how similar to ME/CFS at least some cases are, and that ME/CFS would be reasonably expected to occur, and that long covid patients need to be educated about PEM so that they have the benefit of competent advice early on in their illness.

Both lumping with ME/CFS and separating from ME/CFS could cause harm.

I note some similarity to the debate about ME/CFS diagnostic criteria
 
Rain said:
I do of course see the hope and positive possibilities in this. But I’m starting a thread for discussing concern around it as well.

Please have in mind that we know nothing about long time effect from Covid, nothing about how long it will last. It might become like Mono or lung infections where some patients are set back for up to two years before functioning normal/being able to exercise again.

Being set back for a while after a virus is not that unusual. What happens if most of the cases snap back to where they were before after a while? This is the kind of patients Wyller and others have built their entire career around. It has hurt our case already.

From my personal experience: I have been in this game for quite some time. I have had friends-of-friends getting in touch over long time post-viral ME-like symptoms several times. Some got ME-diagnosis, others not. All of them have become spontaneously better after 1-3 years. Almost none of them/their environment realize their pure luck, often they are seen as clever/an inspiration/doing it right, and the rest of us who is still ill end up in some form of victim blaming.
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I agree. I see positives but I also have concerns.

Viruses can take time to get over. Post-viral fatigue is horrible but it often gets better gradually with time. I think you can now be diagnosed with CFS/ME after 4 months of post-viral fatigue? If it was up to me, I would call it post-viral fatigue for a year and only then start to call it ME.

I expect that most of the people who have pvf after covid will recover. It worries me that they will think they've recovered from ME and therefore think that everyone with ME can recover by doing whatever it was they were doing.

Hopefully the right questions will be asked and the right data will be collected.
 
Tia said:
If it was up to me, I would call it post-viral fatigue for a year and only then start to call it ME.
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Hard agree. I would even go as far as to difference between ME after 1 year and chronic ME after 3-5 years. 3 years if no improvement/worsening of symptoms, 5 years if you are in the midst of an an ongoing gradual improvement at the 3 year mark.
 
I agree with the concerns listed. We simply don't know.

I think as patients hampered & harmed by treatments based on very poor research we have a duty to point out the risks of other patient populations being put through similar treatments with similar underlying philosophies.

As patients with a so called poorly understood condition we know all too well how stigmatizing that can be and how it can lead to an additional disease burden. We should be pointing that out, I think.

Beyond that, I agree, we can't say whether post covid patients will develop ME, or if they do, that they won't recover from it.

Let lessons be learned from our history but not assume that our history dictates the path their disease will take.

Edited - clarity
 
strategist said:
Long covid appears to be a name for a variety of problems, some of which are very similar to ME/CFS. The lack of research to characterize these patients prevents saying more.

Patients should point out how similar to ME/CFS at least some cases are, and that ME/CFS would be reasonably expected to occur, and that long covid patients need to be educated about PEM so that they have the benefit of competent advice early on in their illness.

Both lumping with ME/CFS and separating from ME/CFS could cause harm.

I note some similarity to the debate about ME/CFS diagnostic criteria
Click to expand...
I don’t see a problem with warning against pushing yourself and at the same time not calling it ME. It is already done. If a hard training top athlete gets mono or other post-infection setbacks they are often out of competition for 1-2 years.
 
I'm worring, too, that this could backfire ("See, they got better, why didn't you?)

What makes it a little more likely for me is the experience with Sars1. I don't know if there has been any long term follow up with patients >1yr after their illness..would be interesting to know where they're at now.
 
If we see a similar pattern to other post-viral symptoms then a majority will just recover, but some will not. I definitely have a fear that a number of dodgy researchers now have a better understanding of how to produce worthless studies that help encourage the view that they know what they're talking about, and that Covid-19 is going to provide them with a good opportunity to generate PR and secure their positions. If they suddenly have access to an influx of C-19 patients that do not know the history around PVFS, etc then they may be able to help set up and manage patient groups that further strengthen their position?

When it seems likely that PVFS/CFS/ME, etc are labels already given to patients suffering from a range of different problems then it also seems likely that those labels will be applied to those with chronic symptoms after Covid-19 too. Never mind some of the even looser labels: medically unexplained symptoms, persistent physical symptoms, etc.
 
I also think there could be possible benefits from having Long-Covid being researched from scratch without the connection. If they discover something that ME-researchers has not already thought of, it would be easy to test if ME-patients have the same.
 
I think that some of the more inclusive criteria will probably catch both groups (e.g., breathing problems are noted in some criteria). This may be to the detriment of all involved, but it may also help clarify how useful (or not) certain criteria are.
 
Yep, I said something similar a while back:

Londinium said:
This is very important. I've been careful in any discussion around 'post-COVID' to point out that post-viral symptoms are self-limiting in the majority of cases, and that experiencing symptoms a few weeks after a serious illness doesn't mean you're about to automatically get ME/CFS. From an ethical standpoint it's not good to scare people when we just don't have the data; from a tactical standpoint if most people end up recovering all they'll remember is a load of those 'nasty ME activists' who tried to 'jump on the bandwagon'.
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I think a related point is similar to the old 'Reddit hug of death': if you tweet about having long-term COVID symptoms and you receive a huge number of similar messages about it being ME/CFS then, even if well-meaning, the sheer volume of messages can be very off-putting. I do wish that on social media (for all topics) people would ask themselves "would my writing what will be the 343rd response to this tweet add anything meaningful?".
 
The list of long covid symptoms some people are experiencing are closer to the symptoms I had when I became ill and closer to what was described in 1959 by Melvin Ramsay than the fukuda definition or the experiences of many people who have told me they have ME over the years.

I am finding it surreal, actually. There has been so much confusion in the past twenty years I did not recognise a lot that was being said and felt a bit adrift.

It is also a bit upsetting because I have felt since those days that these symptoms did not deserve any medical treatment but now there is a group of people demanding to be heard - just making me a bit emotional (so I am obviously psychologically ill!)
 
@Mithriel it can be emotional on many levels. I find it tough to read doctors admitting lack of empathy/understanding of our symptoms until experiencing it themselves.

Have seen a few claim to think they will be better doctors from now on... but if these individuals become spontaneously better, will they not just as easily go back to prejudiced thoughts against the patients not experiencing the same improvements as they did?
 
Maybe controversial but... this goes beyond ME. I see roughly the same reactions from the broader chronic illness community, post-Lyme, fibromyalgia, POTS/dysautonomia. The same "well this is familiar" reactions to some of the reports. Populations that have been separated based on labels but may simply be different manifestations of the same problems, driven largely by chance combination of circumstances: pathogen and strain, point of entry, entry load, point of attachment and whether the pathogen manages to hunker down, proximity of immune cells and chance encounters between certain immune cells and pathogens, resident microbiome and probably several more factors that cross genetics, epigenetics and probably more.

The sheer variability of illness from the same cause is staggering. I have read hundreds of post-COVID cases. There is no typical post-COVID case. They are all over the place. Some have intense fatigue, some don't. Some have serious PEM, few don't. Some have severe pain, others don't. Some have massive headaches and migraines, others don't. Some have severe POTS or high resting heart rate, others don't. Some have movement disorders, confusion, delusions, clumsiness, fevers. There are even reports of severe dementia and psychoses, though those may be caused by small blood clots or hypoxia.

Most ME patients see strong similarities, some don't by relating only to their personal experience. But others non-ME do as well. I don't think this is the explanation for ME. To me it reinforces the hypothesis that this may be the explanation for most currently medically unexplained chronic illness. And the sheer variability we see in both larger sets, post-COVID and chronic illnesses, makes it difficult to see the patterns without a larger sample size. One's personal experience does not reflect others. We even see this within the ME community itself, in variations of the "one true ME" or "CFS is not ME" or the enterovirus gang. It takes reading, comparing and analyzing hundreds to thousands of cases to see the patterns. Although the Body Politic report at 600 or so shows this may be about enough power as it really nailed the broad patterns.

What's certain is that the disabling symptoms are similar and that any progress in either population would help far more people than just that population. What's also likely certain is that the BPS model is a threat to both patient populations, an aberration that needs to be removed with prejudice. PEM is a very prominent feature of post-COVID and for that it is right to warn and force change that will apply to all, to block the incoming freight train of "there is no disease, only you can aim for maximum recovery", ghosts of trauma past and other dumb psychobabble.

It's fundamentally different but similar to cancer, which if we didn't have enough knowledge of the underlying process would likely be considered many different diseases. At this point, without that knowledge, another way to look at it is the absurdity of a pug and a great dane being the "same thing" to someone who doesn't know what a dog is. It sounds absurd, and yet quite accurate. Because being different is part of being it.
 
Mithriel said:
The list of long covid symptoms some people are experiencing are closer to the symptoms I had when I became ill and closer to what was described in 1959 by Melvin Ramsay than the fukuda definition or the experiences of many people who have told me they have ME over the years.

I am finding it surreal, actually. There has been so much confusion in the past twenty years I did not recognise a lot that was being said and felt a bit adrift.

It is also a bit upsetting because I have felt since those days that these symptoms did not deserve any medical treatment but now there is a group of people demanding to be heard - just making me a bit emotional (so I am obviously psychologically ill!)
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yes i feel absolutely the same @Mithriel I'm finding it really difficult.

Rain said:
Have seen a few claim to think they will be better doctors from now on... but if these individuals become spontaneously better, will they not just as easily go back to prejudiced thoughts against the patients not experiencing the same improvements as they did?
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yes I'm afraid they will. Especially if what they're actually experiencing is a self limiting form of "regular" post viral fatigue syndrome that lasts about 6mnths or so (like after EBV) & they are doing CBT/GET at the time of their natural recovery. God help their ME patients after that.
 
rvallee said:
Maybe controversial but... this goes beyond ME. I see roughly the same reactions from the broader chronic illness community, post-Lyme, fibromyalgia, POTS/dysautonomia. The same "well this is familiar" reactions to some of the reports. Populations that have been separated based on labels but may simply be different manifestations of the same problems, driven largely by chance combination of circumstances: pathogen and strain, point of entry, entry load, point of attachment and whether the pathogen manages to hunker down, proximity of immune cells and chance encounters between certain immune cells and pathogens, resident microbiome and probably several more factors that cross genetics, epigenetics and probably more.

The sheer variability of illness from the same cause is staggering. I have read hundreds of post-COVID cases. There is no typical post-COVID case. They are all over the place. Some have intense fatigue, some don't. Some have serious PEM, few don't. Some have severe pain, others don't. Some have massive headaches and migraines, others don't. Some have severe POTS or high resting heart rate, others don't. Some have movement disorders, confusion, delusions, clumsiness, fevers. There are even reports of severe dementia and psychoses, though those may be caused by small blood clots or hypoxia.
Click to expand...

Yes, classification of these problems is an enormously difficult problem. We see this reflected in the neverending debates about ME/CFS diagnostic criteria. We might be failing to see the forest because everyone is looking at the tree in front of them.
 
I'm feeling a very strange mix of empathy for everyone being affected by Covid, hope & excitement for ME research from scratch,
worry that it'll hit someone in my family and anxiety that this could be setting everything back/become the nail coffin for us.
 
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