Ethical considerations related to post-infection syndromes in epidemics

[Hutan]

I want to put together a list of ethical considerations related to post-infection syndromes arising from an epidemic illness and would appreciate your help.

Here's one to start with, and I'll just jot things down as I think of them. Please add your ideas.

* Who is put in harms way or protected (e.g. prioritised for vaccination and PPE)?
For Covid-19, I think a lot of countries prioritised older people for vaccination and safe-guarding, because the death rates were higher in this group. Young people, and particularly children were the last to be vaccinated, they were also a group that mask regulations often did not apply to, and often schools remained open.

It seems to me that the cost of post-infection syndromes has been ignored and seriously under-estimated when determining priorities. It's still awful when a person who is 75 gets Long Covid, but in many countries they receive a pension and so don't have to work to survive, they may have a partner, also receiving a pension who can help care for them, and, if they require residential care, society tends to have arrangements in place to deal with that - people in a retirement home will be their age.

In contrast, a young person who develops Long Covid will miss out on a lifetime of experiences (obviously depending on the severity) and will not be able to contribute to society in terms of work, taxes or raising children in the same way that they could if they were healthy. There may be a life-long cost in disability support, and the person's parents or spouse may have to give up work in order to care for them. If the young person needs residential care, they may end up in a rest home, removed from contact with people their own age.

If there is a gender-skew in who gets post-infection consequences (as there does seem to be), then there is an argument that that should be taken into account. If women are twice or three times more likely to develop post-infection syndromes, maybe they should be prioritised in the roll-out of protective policies? Not doing so when there is evidence of a greater chance of harm may exacerbate existing inequalities, as in the case of households headed by a single female parent.

There are considerations related to post-infection consequences that might change vaccination priorities. Of course, once a pandemic gets to a stage where most people will get the disease and the vaccination is simply to reduce illness severity, a question is, does the vaccination decrease the risk of post-infection syndromes in any subsequent infection?

 

[Hutan]

*Insurance treatment of post-infection syndromes
I'm writing this in the context of New Zealand Accident Compensation scheme, where people who suffer an accident don't have to sue in order to get support. There is a government managed insurance scheme so that everyone suffering an accident causing a specific impairment is supposed to get similar treatment and a good standard care. There is a big difference between the financial support received by someone under ACC for an injury as compared to someone who has a similar disability due to, for example, a genetic condition. Some of this might be relevant to whether income protection and health insurance claims are accepted too.

Is a person who gets Long Covid, for example a doctor or a nurse, following infection with Covid-19 at work eligible to make an insurance claim? There is some acceptance that this sort of support for occupational-related harm should happen. But then, what about the case where a doctor catches Covid-19 at work and brings the infection home. Then their spouse develops Covid-19 and subsequently Long Covid. Would the spouse be eligible to make a claim? Is it ethical to treat people with Long Covid who acquired Covid-19 at work much better than those who acquire it outside work?

What about when it is difficult to prove that a person got Covid-19 at work because infections were everywhere? What about when it is uncertain if the post-infection syndrome was actually triggered by the Covid-19 infection.? Is it ethical to treat people who develop a post-infection syndrome from an infection that isn't Covid-19 differently from those whose illness is related to Covid-19? For example, should a teacher who develops a post-infection syndrome following flu that she caught from her students be treated differently to a nurse who developed Long Covid after catching Covid-19 from her patients?

 

[Hutan]

*Transparency about post-infection syndromes
When there is evidence that post-infection syndromes are occurring, governments and employers have a duty of care to their citizens and employees to provide adequate warning about this. This is still not happening in a concerted way. I recall going into a hospital during the early stage of the Covid-19 outbreak where there were screens with changing messages all essentially downplaying the risk of Covid-19, saying things like "Covid-19 is generally a mild infection". Staff were not wearing PPE, including when getting into elevators.

A question is 'to what extent is the prevalence of post-infection syndromes foreseeable?'. In the case of Covid-19, many of us knew very early on that there was a risk of post-infection syndromes based on the impact of previous coronavirus outbreaks (SARS1, MERS). I think governments have a duty of care to review related illnesses to forecast the risk of post-infections syndromes, and to put in place monitoring systems to determine if post-infection syndromes are happening. This information could change calculations of harm from a pandemic, and so may change the desirability of an eradication approach, at least in the early stages of a pandemic.

 

[Hutan]

* Arrangements for convalescence
We don't yet know what increases the risk of developing a post-infection syndrome and what increases the chance of making a full recovery. However, a period of convalescence seems likely to give people the best chance of recovery, given the biological evidence of sickness behaviour (the phenomenon causing sick animals to withdraw and rest while fighting an infection) and anecdotal evidence of relapses if activity is resumed too quickly. Until there is better information, the precautionary principle probably requires that people who have had an infection are not required to work during their illness and that a return to work (assuming that is possible) is not rushed and is managed in a way that takes account of ongoing symptoms.

Such an approach not only safeguards the person's health, but, if it prevents post-infection syndromes and speeds up recovery from them, then there are benefits to the employer and society in general.

 

[Hutan]

*Assumptions of psychosomaticisation
Some people contend that post-infection syndromes are simply hysteria, where normal sensations such as fatigue following an illness are amplified by fear, secondary gains and deconditioning from a lack of activity during the illness until there is a down-ward spiral of inactivity and increased symptomology. The widespread occurrence of post-infection syndromes following a range of infections and in all cultures; the lack of evidence for deconditioning being a significant factor in symptomology, including the fact that highly active people can develop post-infection syndromes within two weeks of a mild infection; and findings of biological abnormalities in people with post-infection syndromes make these ideas very unlikely to be true. Importantly, there is a lack of evidence for treatments addressing 'false-illness beliefs' or lack of fitness having any impact on recovery rates from post-infection syndromes.

In contrast to the lack of evidence for the post-infection syndromes being psychosomatic illnesses, there is demonstrable harm caused by this assumption. People suffering from an abrupt decrease in their ability to work and take care of themselves and their family suffer when the medical profession and society in general suggests that they could recover if they just became more active and thought more positively. They and their families are denied emotional support and the financial and practical help that might make it easier for them to recover, or at least adjust well to a new reality. The psychosomatic assumption has delayed good quality research into the biological underpinnings of post-infection syndromes, so that, as the world faces the reality of millions of people affected from the aftermath of Covid-19 infections, there are no useful medical solutions to offer.

Many people suffering from Long Covid qualify for a diagnosis of ME/CFS, an umbrella term for post-infection syndromes where there is an exacerbation of symptoms following activity (post-exertional malaise). The treatments proposed by those supporting a psychosomatic etiology involve gradually increasing activity levels. As noted, there is no good evidence that these treatments change rates of recovery. While trials investigating these treatments have been very poor at collecting data on harm, there is overwhelming anecdotal evidence that they cause deterioration. As a result virtually all patient charities and influential health agencies such as NICE and CDC have removed treatments based on a psychosomatic foundation from ME/CFS treatment guidance.

Given the lack of evidence for post-infection syndromes being psychosomatic, the lack of evidence for treatment approaches based on psychosomatic theory being useful, and the obvious and substantial harm that would result from telling people that they can cure themselves by changing their behaviour when they cannot, it is not ethical to allow assumptions of psychosomaticism to be applied when making policy for the management of post-infection syndromes or when providing care to people with post-infection syndromes.

 

[SNT Gatchaman]

including the fact that highly active people can develop post-infection syndromes within two weeks of a mild infection

Or indeed following asymptomatic infection, as seems to have been the case for me.

 

[Hutan]

* Specific action to counter stigma and increase support
Most societies are reverting to something approaching normal life while the current pandemic continues. This is a tacit acceptance of deaths, severe acute illness, vaccine-related side effects and the post-infection conditions as necessary collateral damage. Equity requires that there should be support for the people and their families who have suffered harm.

People with post-infection conditions, specifically ME/CFS, have been stigmatised as hypochondriacs, attention-seekers and malingerers, as people who are unable to cope with the stresses of modern life and have chosen to opt out, as perfectionists, as lazy people and people who are difficult to deal with. The stigma of ME/CFS greatly compounds the difficulty of the disease. Many of these people do have skills they could contribute to society, even while ill, if the stigma of the condition was removed.

A significant percentage of people with ME/CFS following epidemics are medical personnel, the very people needed to help keep the health system functioning during a period of immense pressure. Poor treatment of health professionals disabled while serving during an epidemic may make their colleagues reluctant to put themselves in harm's way.

There is a need for specific action to counter the stigma and to provide support so that people with ME/CFS can remain part of society, contributing as they are able. This action could involve educating medical professionals and the wider society, updating guidelines, changing rules around access to benefits and allowing for part-time work, tele-working and flexible approaches to returns to work.

 

[Adrian]

There are considerations related to post-infection consequences that might change vaccination priorities. Of course, once a pandemic gets to a stage where most people will get the disease and the vaccination is simply to reduce illness severity, a question is, does the vaccination decrease the risk of post-infection syndromes in any subsequent infection?

This raises a question around ethics and genetics. If, for example, a GWAS study shows certain gene SNPs lead to susceptibility to ME (or post viral fatigue) then should people with those genes be prioritized and if this is the case would a gene database and mass testing be necessary (I don't think it would). Of course in covid cases vaccination doesn't prevent disease (although may reduce likelihoods) and reduces severity. But if severity isn't the trigger for post viral illness then what other actions should be taken. (I think with long covid there are some people with damage due to severity). This brings a question around understanding the relationships between vaccination and the likelihood of long covid and I think some research did show reduced chance.

The alternate scenarios are less about vaccination but just warning some people to be more careful and for increased shielding.

 

[Peter T]

With ME we see a recovery rate of around 6% and presumably similar figures are anticipated for those with Long Covid that meet the the criteria for an ME diagnosis, however patients are repeatedly told they will get better in a matter of months or a few years.

Whether it is well intentioned or not, or whether the person saying this is misinformed or not, it is irresponsible to give people unrealistic expectations of recovery. How many people get worse as a result pushing for recovery, how many people suffer financially from unrealistically seeking the magic, but very often expensive, cure, how many people fail to plan their lives appropriately to allow for ongoing health issues or deterioration/relapses?

 

[Peter T]

One issue that has come up recently is assisted suicide and ME/Long Covid. The issue is of itself ethically complex, but this is added to by people seeking assisted suicide not because they can not envisage achieving an adequate of life with ME/Long Covid, but rather they can not afford an adequate quality of life in current insurance/pension/benefit regimes.

 

[Hutan]

With ME we see a recovery rate of around 6% and presumably similar figures are anticipated for those with Long Covid that meet the the criteria for an ME diagnosis, however patients are repeatedly told they will get better in a matter of months or a few years.

If the prospective studies we have (Dubbo, Jason's mononucleosis study) are any guide, odds are in favour of recovery at the 4 month mark when NICE's diagnostic criteria allows diagnosis, and at 6 months when some other criteria allow diagnosis. I think it is right to generally be positive about chances of recovery in the first two years while acknowledging that some people will not recover, and that as you approach and pass the two year mark, prospects for recovery become very small. I think it's important we recognise the potential for natural recovery early in the illness, so people like Paul Garner, and others touting cures, aren't able to claim miracles.

Whether it is well intentioned or not, or whether the person saying this is misinformed or not, it is irresponsible to give people unrealistic expectations of recovery.

Yes, you are right, providing realistic expectations is a necessary aspect of transparency that allows people to plan appropriate responses to the illness.

How many people get worse as a result pushing for recovery, how many people suffer financially from unrealistically seeking the magic, but very often expensive, cure,

Pretty much everyone, at least temporarily, I expect. I think that's another aspect of transparency: governments need to ensure people diagnosed with ME/CFS have clear information about how PEM works. I think the issue about the proliferation of unevidenced cures, and the vulnerability of people with ME/CFS to spending a lot of money and effort on them is part of transparency too, in that governments should be clear that there is no cure, and treatments at best only improve symptoms.

I think there is also another point, that governments should not allow public health systems to offer unevidenced treatments for post-infection syndromes (or anything) outside of well-run trials and has a role to play in countering mis-information about treatments offered privately*. How big a role in the latter, I'm not sure, although I think I tend to think quite a big role, in that no one offering a cure or treatment for a health conditions should be allowed to make claims of efficacy that are not based on good quality evidence.

*Edit to add - like this sort of misinformation
Lightning Process - discussion thread

 

[Hutan]

One issue that has come up recently is assisted suicide and ME/Long Covid. The issue is of itself ethically complex, but this is added to by people seeking assisted suicide not because they can not envisage achieving an adequate of life with ME/Long Covid, but rather they can not afford an adequate quality of life in current insurance/pension/benefit regimes.

Do you have any links to where this is documented Peter?* So perhaps my second point above needs to have a wider scope and consider what safety nets are in place for people with ME/CFS and whether they are treated equitably compared to people with other equally disabling conditions. And assessment of disability needs to acknowledge the problems created by a fluctuating illness.

This issue is of course a whole lot worse in countries where there is no social welfare safety net. There is more scope for people with ME/CFS to feel that they are a burden on their family, and indeed for families to regard the person with ME/CFS in this way. Governments should be planning suitable facilities for respite and residential care for people with post-covid ME/CFS.

*Edit - I note the letter in the Lancet, linked here Long Covid in the media and social media 2022

 

[Peter T]

Do you have any links to where this is documented Peter?* So perhaps my second point above needs to have a wider scope and consider what safety nets are in place for people with ME/CFS and whether they are treated equitably compared to people with other equally disabling conditions. And assessment of disability needs to acknowledge the problems created by a fluctuating illness.

This issue is of course a whole lot worse in countries where there is no social welfare safety net. There is more scope for people with ME/CFS to feel that they are a burden on their family, and indeed for families to regard the person with ME/CFS in this way. Governments should be planning suitable facilities for respite and residential care for people with post-covid ME/CFS.

*Edit - I note the letter in the Lancet, linked here Long Covid in the media and social media 2022

There was a thread here, just a few weeks ago, triggered by a Canadian news article on an individual with Long Covid(?) investigating assisted suicide on the grounds that current financial support/care provision meant it was impossible to achieve a sustainable/adequate quality of life, rather than this being necessarily inherent in their underlying condition.

I just tried to find it, but unfortunately I really struggle cognitively to locate what has been previously posted, both in relation to the organisational structure and to the search facility. I will try further but if anyone more cognitively able could step in here that would be most welcome.

[added - going through the list of threads I am following I have found the article see Toronto woman facing financial loss of long COVID begins process for medically assisted death https://www.cp24.com/news/toronto-w...rocess-for-medically-assisted-death-1.5982576 , which was discussed from the bottom of p.6 of our thread https://www.s4me.info/threads/news-from-canada.18994/page-6 See also Op-ed: ODSP rates are killing people in Ontario https://nowtoronto.com/news/op-ed-odsp-rates-are-killing-people-in-ontario cited by @Mij in comment #122 of the same thread.]

 

[ukxmrv]

*Insurance treatment of post-infection syndromes
I'm writing this in the context of New Zealand Accident Compensation scheme, where people who suffer an accident don't have to sue in order to get support. There is a government managed insurance scheme so that everyone suffering an accident causing a specific impairment is supposed to get similar treatment and a good standard care.

Geoffrey Palmer seems to have written a lot on the NZ system and how unfair it is. Also about how it was originally designed to be implemented to cover long term disabled or ill.

I've seen comments from people living in NZ who got Covid whilst abroad at a work conference and have been accepted into the scheme. The majority won't of course because they cannot prove that their illness was caught at work.

There was a NZ member of one of the early internet groups who had a long running battle with ACC to try and get them over her ME. I'll try and find it.

 

[Mij]

With ME we see a recovery rate of around 6% and presumably similar figures are anticipated for those with Long Covid that meet the the criteria for an ME diagnosis, however patients are repeatedly told they will get better in a matter of months or a few years.

Whether it is well intentioned or not, or whether the person saying this is misinformed or not, it is irresponsible to give people unrealistic expectations of recovery. How many people get worse as a result pushing for recovery, how many people suffer financially from unrealistically seeking the magic, but very often expensive, cure, how many people fail to plan their lives appropriately to allow for ongoing health issues or deterioration/relapses?

Patients are repeatedly told that they will recover by sending them to Post Covid Rehabilitation and RECOVERY programs.