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

[CRG]

The Norwegian Institute of Public Health has today published a report about Long Covid. One of the authors are KG Brurberg who also co-authored the Cochrane review on ME and graded exercise therapy. The report is peer reviewed by among others research director Signe Flottorp, who is very enthusiastic about Lightning Process and a BPS approach to ME.

Just skimmed it and see no references to ME, PEM or post-viral illness in general.

The report concludes:

Severe COVID-19, requiring hospitalisation or intensive care treatment, correlates with more symptoms after six to 12 months. The range of long-term symptoms for hospitalised patients is widest, with General, Neurological and Pulmonary symptoms the most common. Women stand out with a higher risk for developing long-term symptoms. Many patients who have had mild and moderate COVID-19 (non-hospitalised) report prevailing symptoms six to 12 months after infection, but controlled studies now show that many of these symptoms are also reported by uninfected controls. Symptoms in patients with mild and moderate COVID-19 are similar to those in the general population. The extent of long-term impact of COVID-19 on the quality of life in the general population remains unclear, as most studies included patients with severe COVID-19.

Summary and report here:

https://www.fhi.no/en/publ/2022/COVID-19-Post-COVID-19-condition/

This seems a reasonably sound paper to me - I've no idea if the stats are all OK or whether the design choices are open to criticism but the authors carried out a review of what are essentially data collection studies, applied some analysis to those studies and came up with conclusions which look to be logical. I assume that not mentioning ME, PEM or post-viral illness goes with the chosen studies not including these in their metrics, if it's a deliberate exclusion then that would be a matter of concern.

Whatever the agenda of the authors it seems pretty unequivocal that future research on post COVID health should make a clear distinction between those who were hospitalised and those who were not. And the case they seem to be making - 'that much of the claimed 'long covid' health burden is indistinguishable from the general background health' does need to be taken seriously.

 

[Hoopoe]

I suspect most of the studies do not provide much useful data, for the reasons @Trish mentioned. And also because the definition of "uninfected controls" is unreliable.

The positive cases will include false positives, the "uninfected controls" will include false negatives. This blurs the differences between the two groups. The rate of false negatives and positives seems high enough to be a concern.

 

[Art Vandelay]

Many patients who have had mild and moderate COVID-19 (non-hospitalised) report prevailing symptoms six to 12 months after infection, but controlled studies now show that many of these symptoms are also reported by uninfected controls.

I suspect most of the studies do not provide much useful data, for the reasons @Trish mentioned. And also because the definition of "uninfected controls" is unreliable.

Were these 'uninfected controls' screened (or asked) about other infections like EBV or influenza?

 

[dave30th]

And the case they seem to be making - 'that much of the claimed 'long covid' health burden is indistinguishable from the general background health' does need to be taken seriously.

The claim that the uninfected also suffer the same symptoms seems like a real stretch, since that was the message of the very flawed French study that came out not long ago--basing "infection" on serology alone is seriously problematic. I'm not sure why this case they seem to be making--that nothing untoward is going on among those who had mild infections rather than being hospitalized--should be considered to carry weight.

 

[CRG]

The claim that the uninfected also suffer the same symptoms seems like a real stretch, since that was the message of the very flawed French study that came out not long ago--basing "infection" on serology alone is seriously problematic. I'm not sure why this case they seem to be making--that nothing untoward is going on among those who had mild infections rather than being hospitalized--should be considered to carry weight.

I didn't read it that way at all - rather that the authors are identifying a methodological problem, rather than attributing health status to any group or individual.

If people who suffered mild/moderate acute COVID subsequently report ongoing symptoms which are indistinguishable from their peers who report having not had acute COVID then there is clearly a problem attributing cause, essentially the wider population experiences a wide range of aches and pains on a regular basis and selecting a post COVID specific condition out of that is statistically challenging.

Further if you take a mild/moderate acute COVID population and mix its reports of ongoing or subsequently emerging symptoms with reports of ongoing or subsequently emerging symptoms from a population that was seriously ill with acute COVID you will get a result that appears to suggest a wider spread of more serious post COVID problems because (as the authors argue) that second group is invariably more ill and with a wider range of symptoms.

The Matta et al (French) study was panned because it suggested the very act of believing that you'd had acute COVID was a greater risk for having post COVID symptoms than actually having had acute COVID, which is very different I think from the study here.

Post/long COVID is clearly heterogeneous and as investigations progress we should expect the picture of what is meant by the term(s) to change, I see the NIPH study as simply being an inevtiable part of that process, whatever agenda it's authors might have.

 

[Hoopoe]

I didn't read it that way at all - rather that the authors are identifying a methodological problem, rather than attributing health status to any group or individual

I read it as psychiatrists trying to once again show it's largely in the mind and overlooking some fairly obvious problems with their study that coincidentally helps them draw that conclusion.

 

[dave30th]

Post/long COVID is clearly heterogeneous and as investigations progress we should expect the picture of what is meant by the term(s) to change, I see the NIPH study as simply being an inevtiable part of that process, whatever agenda it's authors might have.

good points. I haven't read it yet--just going by what was posted here, and by the people involved. I'll take a look.

 

[duncan]

If people who suffered mild/moderate acute COVID subsequently report ongoing symptoms which are indistinguishable from their peers who report having not had acute COVID then there is clearly a problem attributing cause, essentially the wider population experiences a wide range of aches and pains on a regular basis and selecting a post COVID specific condition out of that is statistically challenging.

I'm confused by this response. To me it sounds uncomfortable similar to IDSA Guidelines from 15 or so years ago that seemed to many to compare symptoms of late stage/chronic Lyme to (I'm paraphrasing) what many healthy people experience normally as the aches and pains of life.

If you've LC, or chronic Lyme for that matter, or ME/CFS, you know the difference between aches and pains pre-illness, and those during the disease. Levels or degrees of intensity matter. Duration matters. Symptoms pre-illness vs. those during illness are not indistinguishable. It seems to me that researchers unable to distinguish between the two maybe aren't asking the right questions, or perhaps aren't listening as well as they might.

 

[Kalliope]

Another thing to keep in mind regarding today's Long Covid report from the Norwegian Institute of Public Health is that they've been a voice for as few restrictions as possible throughout the pandemic and only a few days ago the director said they now want people to get infected. Long Covid doesn't fit well with their strategy.

 

[Dolphin]

Mild Covid infection can still cause memory problems for up to nine months, study shows
New research suggests long-Covid sufferers are not alone in experiencing cognitive issues
https://www.irishtimes.com/news/hea...s-for-up-to-nine-months-study-shows-1.4779933

The findings, reported by researchers from the University of Oxford, showed that people who had had a mild Covid infection but did not report long-Covid symptoms still had worse attention and memory for up to six to nine months.

 

[rvallee]

Those responses. It's terrifying to think of what would have happened if this pandemic had happened before social media. All those people would have been ignorant of everything happening, would have been gaslighted to hell and whatever Long Covid would have been called, it would 100% have taken the place of chronic Lyme as the most hated kid on the medical block. Zero chance medicine would have done anything but make it the new face of "mass hysteria".

Shame on medicine for having built this dystopian nightmare and being so happy with it. Horrible, horrible shame.

 

[CRG]

Mild Covid infection can still cause memory problems for up to nine months, study shows
New research suggests long-Covid sufferers are not alone in experiencing cognitive issues
https://www.irishtimes.com/news/hea...s-for-up-to-nine-months-study-shows-1.4779933

The findings, reported by researchers from the University of Oxford, showed that people who had had a mild Covid infection but did not report long-Covid symptoms still had worse attention and memory for up to six to nine months.

Study: Rapid vigilance and episodic memory decrements in COVID-19 survivors

https://academic.oup.com/braincomms/article/4/1/fcab295/6511053

 

[Hoopoe]

A lot like ME/CFS then. The inability to sustain attention part at least. The memory issues seem like they might be worse in LC.

 

[Mithriel]

the case they seem to be making - 'that much of the claimed 'long covid' health burden is indistinguishable from the general background health' does need to be taken seriously.

This raises lots of red flags for me. Wessely makes a big thing of people with ME misinterpreting normal bodily reactions as ill health so people with ME are the opposite of those heroic patients with genuine disease who ignore the real pain they get and contribute to society. Whiners all.

I agree it needs to be taken seriously, it is the beginning of the questions about longcovid, not the end because we need an explanation for the result since it is more unlikely than post viral complications. The kneejerk reaction that it is just people complaining about nothing will be used against us, I'm sure.

Is it a mental health panic reaction to a pandemic? Possibly, not something I think likely but a question it is valid to ask.

Is it because many of the uninfected actually had a subclinical infection? In the early days of ME it was thought possible that this was one pathway to the disease. Maybe covid was much commoner than we realised with all the implications of that.

The most likely to my mind is that the questions were too open. I have been exasperated over the years by the number of people who heard about symptoms of ME and said they had that too. It made me doubt myself once but now I know it is just the language that is too narrow. Ask about aching legs and most people say they have that, ask about needing a wheelchair because of the pain would be better.

One of the things I have found interacting with medical personnel is that they are never interested in my actual problems but keep asking about things that make it seem nothing is wrong with me.

I have said before, if we did not know so much about MS a questionnaire which asked about fatigue, memory problems, difficulty getting out of a chair, heavy feeling legs, needing to rush to the loo would be answered yes by many people without MS yet it is a valid description of what many of those with MS experience.

This finding says more about the shortcomings of questionnaires than anything.

 

[Dakota15]

"Observations on long COVID through an ME/CFS lens" with Dr. Peter Rowe, hosted by FNIH (Foundation for the NIH)

Presented 1/14/22

"I think we've been really mishandling patients and blaming them for their symptoms for far too long and this is just another chapter of that book in medicine" - Dr. Rowe

 

[Dakota15]

Dr. Peter Rowe, x2

"Dr. M’s Women and Children First Podcast #13 – Dr. Peter Rowe, Chronic Fatigue Syndrome and Long Covid"

Quick quotes:

"The similarity between these patients [Long COVID] & our ME/CFS patients was quite strong. My colleagues in the Netherlands have looked at their first dozen or so patients with Long COVID & they find that these are incredibly, strongly overlapping problems.

They have the reduction in brain blood flow. CFS & Long COVID patients have the same symptoms. The difference I think is that many different infections can trigger ME/CFS. If you start off with mono, it makes sense that you're going to have slightly different initial experience. You'll have sore throat, enlarged spleen.

With COVID, you're going to most likely have respiratory problems or loss of taste and smell. But by the 6 month point, you're probably getting the same group of symptoms. We view SARS-CoV-2 as just another virus that can trigger ME/CFS. It must. The hope is that with all the scientific eyes trained on that infection will come up with a better understanding for the mechanism for these circulatory and other symptoms."

"We need the same kind of funding [as HIV studies] to attract more physicians into this field...it doesn't happen in any area that's not a very lucrative clinical arena. It's not surgery. It's not ophthalmology. We need somebody to fund this. Without it we're going to see large numbers of children unable to attend school. Not because they don't want to be there, but because they can't, physically."

 

[Dakota15]

Verywell Health: "What Should We Expect From Long COVID Treatment?"

“Doctors need to understand that when we say chronic fatigue, we’re saying our bodies are hurting to simply move and to be alive and to function,” Nichols, who is also the Body Politic vice president, told Verywell.

"Many studies last year showed that long COVID can present as a post-viral conglomeration of different illnesses, specifically myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), mast cell activation syndrome (MCAS), and dysautonomia, which refers to a dysfunction in the autonomic nervous system. These illnesses can trigger symptoms across every organ system."

"Experts emphasize that PASC could be an umbrella term that includes these illnesses, amongst other things."

"ME/CFS, for example, shares three of the most common symptoms as long COVID: brain fog, fatigue, and post-exertional malaise (PEM), which is when a patient’s symptoms worsen after activity. Studies have shown this could be triggered by disruption at the cellular level specifically in our NK T cells, which are usually responsible for fighting off viruses. In ME/CFS, and potentially in long COVID, these cells become impaired, allowing for viral persistence and chronic inflammation."

"Other studies show that there may be impairment in the part of the cell responsible for producing energy: the mitochondria."

“The challenge ahead is not only for long COVID and disabled patients to be invited to a seat at the table in decision-making,” Wei said. “We are grateful for these opportunities to collaborate with research institutions and public health bodies but also for the patient voice to be treated as an equal vote. In December PLRC wrote an open letter to the NIH RECOVER stakeholders detailing changes we would like to see in leadership. We advocate for patient engagement to be more transparent, accountable, and meaningful toward the people most affected by these decisions."

 

[CRG]

I'm confused by this response. To me it sounds uncomfortable similar to IDSA Guidelines from 15 or so years ago that seemed to many to compare symptoms of late stage/chronic Lyme to (I'm paraphrasing) what many healthy people experience normally as the aches and pains of life.

If you've LC, or chronic Lyme for that matter, or ME/CFS, you know the difference between aches and pains pre-illness, and those during the disease. Levels or degrees of intensity matter. Duration matters. Symptoms pre-illness vs. those during illness are not indistinguishable. It seems to me that researchers unable to distinguish between the two maybe aren't asking the right questions, or perhaps aren't listening as well as they might.

The semantics (in the non dismissive sense) of illness is challenging and certainly researchers should be conscious of how their questions are structured, but part of that means that when seeking responses from the general population common terminology is used. Even if we consider the patient to be expert we can't rely on the patient having more than an average command of language.

In the case of novel, ill defined and heterogenous conditions such as post COVID symptomology, language use becomes circular, researchers can only reference what patients have described and patients use common terminology because there are no contextual alternatives that researchers can offer until a clear picture of the emergent symptomology becomes clear.

Certainly researchers could ask patients to give scale to commonly experienced symptoms pre and post acute COVID but that doesn't help where the patient didn't previously have a given symptom. And in any case that doesn't impact the how the general population experiences discomfort, pain etc, there is a lot a of low level symptomology throughout the the general population and that low level can be expressed acutely in a measurable % of the general population all which contributes to the common semantics of illness.

In the case of LC, or whatever agglomeration of illnesses that turns out to be, as a medical entity it only exists as a description using either medical terminology or common semantics. As definitions are tightened we should expect elements of what had been understood to be aspects of that single medical entity to disappear and others arise, and that LC in part turns out to be something of a mirage created by poor specificity is to be expected.

 

[duncan]

The semantics (in the non dismissive sense) of illness is challenging and certainly researchers should be conscious of how their questions are structured, but part of that means that when seeking responses from the general population common terminology is used. Even if we consider the patient to be expert we can't rely on the patient having more than an average command of language.

Do you really think it's the patient community that is responsible for the communication gaps which frequent research studies and clinical practices?

n the case of novel, ill defined and heterogenous conditions such as post COVID symptomology, language use becomes circular, researchers can only reference what patients have described and patients use common terminology because there are no contextual alternatives that researchers can offer until a clear picture of the emergent symptomology becomes clear.

So, who do you imagine crafts a given set of disease characteristics? It isn't the patients. Sometimes it isn't even with patient input, or it's DESPITE patient input, and even contrary to it.

Certainly researchers could ask patients to give scale to commonly experienced symptoms pre and post acute COVID but that doesn't help where the patient didn't previously have a given symptom. And in any case that doesn't impact the how the general population experiences discomfort, pain etc, there is a lot a of low level symptomology throughout the the general population and that low level can be expressed acutely in a measurable % of the general population all which contributes to the common semantics of illness.

I'm not sure what you're trying to accomplish with this paragraph. If a researcher cannot distiniguish symptom severity in healthy controls vs an infected cohort, then that researcher may wish to consider changing professions.

n the case of LC, or whatever agglomeration of illnesses that turns out to be, as a medical entity it only exists as a description using either medical terminology or common semantics.

I suspect some patients would reply that their symptoms exist regardless of who is writing the medical texts - or whether anyone bothers to write them down at all.

IMO, if a researcher cannot come at a disease from the patients' perspective, and incorporate that perspective without diminishing it, then the product that comes from his/her desk is likely flawed. Both clinical and medical research arrogance undos progress far too often, and that unraveling is almost always at patients' expense.

Medicine is not dogma, or at least it should not be. Nor should it reduce down to rhetoric or semantics.

 

[Wyva]

The BMJ: Long covid in children and adolescents

Risk appears low, but many questions remain

Symptoms involving almost every organ system have been reported after SARS-CoV-2 infection.123 Estimates of the prevalence of long covid (also called post-covid-19 condition, post-acute sequelae of covid-19, or chronic covid syndrome) vary considerably, partly because of confusion around the definition. The term long covid encompasses a broad range of symptoms, including objective complications of covid-19 (pulmonary fibrosis, myocardial dysfunction), mental health conditions, and more subjective, non-specific symptoms resembling those seen in post-viral chronic fatigue syndrome (myalgic encephalomyelitis). Most studies to date have substantial limitations, including small cohorts, absence of control groups, non-standardised capture of symptoms, lack of correction for pre-existing medical conditions, participant reported infection, and variation in follow-up, as well as selection, non-response, misclassification, and recall biases.4
​

Full editorial: https://www.bmj.com/content/376/bmj.o143