By David Tuller, DrPH
*This is a crowdfunding month at UC Berkeley for my Trial by Error project. If you appreciate my work and would like to help support it, here’s the link for the November campaign.
Time magazine recently published an opinion piece that calls for an end to biomedical research for long Covid—based, it seems, on what the authors view as the ME/CFS precedent. The title: “How to End the Futile Blame Game Over Failed Long COVID Research.” Although research still has “a vital role” to play, they argue, it needs to be “a different kind” that “no longer focuses on biomarkers and mechanisms” because such studies “are sure to provide ‘promising’ but false leads and divert resources.” (The piece was adapted from a recent article that was published by STAT.)
The authors are Steven Phillips, vice president for science and strategy at the COVID Collaborative, a TK, and a fellow of the American College of Epidemiology, and Michelle A. Williams, a professor of epidemiology at Harvard’s T.H. Chan School of Public Health. They are major players, and they should know better than this. In a prescient essay two years ago on the emerging health burden of long Covid two years in the New England Journal of Medicine, they called for “a formidable, well-funded domestic and international research agenda to identify causes, mechanisms, and ultimately means for prevention and treatment of long Covid.” Now they’ve apparently changed their minds, although the piece does not really explain or even mention this reversal.
Part of their current argument against biomedical research rides on the major deficiencies that have plagued the much-ballyhooed RECOVER initiative from the U.S. National Institutes of Health, as revealed in recent journalism investigations. From the authors’ perspective, the solution to these identified roadblocks is not to re-double efforts to get things right but to abandon the search for biomedical answers altogether.
I was struck that Phillips and Williams seem to be highlighting the parallels between long Covid and ME/CFS as if this were a major insight; they call it “a unifying hypothesis.” These connections have been discussed since the start of the pandemic, and were well-known when the authors wrote their 2021 piece. It is also not a secret that many long Covid patients qualify for and receive ME/CFS diagnoses. So it is unclear why they are touting this notion as if it might be revelatory news.
Beyond that, the parallels they draw between ME/CFS and long Covid research are the wrong ones. The main argument for their suggestion that biomedical research into long Covid should be dropped seems to be that decades of ME/CFS research has not yet managed to crack that puzzle. As they write: “The established track-record of ME/CFS research exploring cause and pathogenesis has been singularly unproductive. By analogy, the current research directed at finding diagnostic and mechanistic clues to Long COVID is a resource-intensive, lengthy uncharted process. In the ME/CFS paradigm it will produce further leads for more biomedical research, but with a low ultimate likelihood of helping patients.”
The authors do not point out that, for decades, federal agencies have devoted only paltry amounts to biomedical research for ME/CFS. They also fail to mention the disproportionate investment in research on psycho-behavioral interventions, like the discredited PACE trial and related studies, as well as the pathetic results from this body of research. Instead, they insist that biomedical research into long Covid is probably going to prove to be a useless endeavor. As they write: “Why is this research unlikely to be productive? Because either there is nothing to find, or currently available tools are insufficient to detect and validate mechanisms behind the myriad of symptoms.”
The authors provide no real evidence to support their assertion that there might be “nothing to find”—or at least, if there is something, that it cannot be identified with current technology. The latter sounds like this: “Gee, this is hard, let’s stop looking.” I have not previously heard this sort of defeatist view advanced as a reason to abandon biomedical research involving other complicated illnesses.
In basing their argument about long Covid on the experience of ME/CFS, the authors ignore a key difference. A major challenge with ME/CFS research has always been that patients are generally not diagnosed till years after the onset of illness—and years after any acute infection that might have triggered it. In the case of long Covid, the investigations start with a clear link between a specific virus and subsequent prolonged medical complaints. That offers an expanded range of possibilities to ascertain exactly what mechanisms might be driving the range of disabling symptoms—post-exertional malaise, brain fog, orthostatic intolerance, etc.
What remains unclear from this account is the authors’ theory of the case. Are they suggesting these are psychosomatic symptoms—what would previously have been lumped into the category of “medically unexplained symptoms” or what would now often be called “functional”? Do the authors believe these conditions are largely driven by depression, anxiety, and related mood states rather than pathophysiological sequelae of an acute coronavirus infection? Is that what they also believe about ME/CFS? If so, they should say so directly–or at least provide some insight into their thinking about the matter.
Instead of biomedical research, here’s what they’re calling for: “Focus should be on health services research and on measures that directly impact the welfare of Long COVID sufferers: prevention, improved prognosis, access to empathetic care and quality of life issues.” No one can reasonably disagree with the need for such investigations. But if you don’t find out what’s causing the symptoms, how do you improve prognosis or know what kind of care (empathetic or not) is appropriate? How do you “impact the welfare” of long Covid patients if you give up the search for what’s going wrong with them?
In the disinformation campaign denying and trivializing Long Covid, to which long time participants of the disinformation campaign denying and trivializing ME/”CFS” seemed to pivot almost in unison in summer 2022, the talking point (which was and is a lie) “NIH has spent 5 billion dollars trying to find a physical cause of Long Covid, and failed, so there isn’t one, and we should stop trying” started appearing circa December 2022 in the words of various journalists who were amplifying (I think unknowingly) that disinformation campaign.
I can’t find that phrase any more. Perhaps editors removed it after the fact, upon reflection. It was a lie.
This Time op-ed echoes that talking point, and I consider it part of the disinformation campaign. Because it appears in a general circulation magazine, my belief is that the authors were guided to this viewpoint by helpful sources, rather than knowingly being agents of the special interest behind the respective disinformation campaigns, which “cui bono?” suggests is payers of disability income.
Note my back of the envelope estimate that the cumulative lifetime disability exposure accumulated over the last 30 years for ME/CFS is about 5 million people in Europe and the western hemisphere, at perhaps US$1 million each, for a total of US$5 trillion, which is the GDP of a mid size country. For Long Covid, another 5 million disabled people, accumulated over the last 3.5 years, another US$5 trillion. The payers of disability income, even the national programs, cannot remotely pay these sums, even over time. Disinformation campaigns are much, much cheaper.
My letter to Time, which will never be published
https://medium.com/@FStevenChalmers/response-to-time-ideas-long-covid-op-ed-c8311206ac33
I found this article quite disturbing. Are these authors ignorant of the history of ME/CFS and of the appalling medical neglect and harms that ME/CFS sufferers have had to endure? I’d contend that ME/CFS patients have suffered for decades from a lack of good biomedical research because psychosomatic/’functional’ research has hogged the bulk of the meagre research funding and the definition of ME/CFS employed has been so broad that links to a biomedical cause were never likely to be made. I agree with David that a lot is unclear in this article but the authors’ suggestion sounds like bunkum to me and I think raises concerns around discrimination, particularly in relation to their proposed social science interventions for the groups that they’ve identified as being at risk. But when did women and those other identified groups ever deserve good biomedical research into their medical conditions?
It looks to me like these authors would favour scaling down or abandoning biomedical research into Long Covid when it’s barely got off the ground because they’re concerned about getting value for the money that’s being spent. I’d suggest that they might want to look across the pond and contemplate what on earth has gone wrong in the UK and with its economy such that a sizeable percentage of the population are now economically inactive due to health problems. They might then perhaps consider that there could be link between the poor health of this section of the UK public, (and its inability to work), and the approach that UK medicine appears to have had towards unexplained illness – dismissing biomedical causes and the search for such causes and instead putting health service and research funding into areas that these authors would now perhaps turn to. Can they really expect a different outcome if the US chooses to follow down a similar path?
No less than 4 people in my close family have been/are unable to work productively due to the functional/psychosomatic/MUS construct since no effective biomedical treatments have been found or offered for the problems that they have. (To my mind, the biopsychosocial model is completely failing, not only from a biological perspective but from a psychosocial one too. Both a lack of biomedical research and medical neglect/inflicted harm are forcing people out of work and into psychosocial hardship, but doctors don’t seem to care if their patients can no longer work. Falling out of employment is no longer considered a failure of medicine because the BPS model allows doctors to blame their patients for their predicament for not engaging well enough with the psychosocial ‘treatments’ that have been prescribed and that the medics have such faith in.) Is our family any different to the rest of the UK population? I doubt it. I suspect that every family is at risk/is suffering in some way from these sorts of arguments and from the failing BPS approach.
Long Covid research needs to avoid all the pitfalls that ME/CFS research has historically suffered. It needs to be founded on solid scientific principles of rigorous classification of symptoms and signs combined with the use of narrow definitions to separate research cohorts. Inclusion may sound nice and kind and fluffy but it serves nobody well. Sufferers will be best served by researchers who use narrow definitions, even if they can’t participate in particular research because the definition excludes them. I’m not sure to what extent this has happened in relation to Long Covid so far but I think it is imperative if advances are to be made. It’s clear that the virus can affect many systems and organs so there will obviously be an awful lot of unpicking to do and answers aren’t likely to come quickly. I’m shocked that these authors would consider throwing in the biomedical towel after such a short space of time.
So basically they’re advocating for a “post-science” society in which it’s determined that everything that’s discoverable has been discovered, and there is no use for science or scientists any more.
This is a link to an unpublished article I wrote several years ago, about a TIME article published January, 1970, coincidentally with the publication of the McEvedy and Beard BMJ articles purporting to prove that ME/CFS was ‘mass hysteria. TIME are at it again. Hoping the link works!!
Mass Hysteria.
A Critique of the TIME article of January, 1970 which, without naming the illness or referring to the journal articles which were its source, rubbished medical research into ME. How could we find out who facilitated the passing of the information from the journal articles and the way TIME handled it? The same process has just recurred, 53 years later.
‘The epidemic that struck the staff of London’s old Royal Free Hospital in 1955 was explosive. Within two weeks, the number leaped from five victims to more than 100. The hospital had to be closed to new patients on July 25, and it stayed shut until October. More than 300 cases were recorded, two-thirds of them severe enough to require hospital treatment. Virtually all of the physical symptoms fitted the concept of an infectious disease: headache, sore throat, malaise, dizziness, nausea and vomiting, diarrhea. Since the Royal Free’s expert microbiologists could find no bacteria to blame, they concluded that the cause of the outbreak was an even smaller and more elusive germ, an unidentified virus.
Not so, say two psychiatrists who have combed the voluminous records of the Royal Free outbreak and more than a dozen like it that have been reported recently. In fact, they suggest in the British Medical Journal, the outbreak was a classic case of mass hysteria. It falls into the same category as the dancing manias of Germany in the Middle Ages or the Neapolitans’ tarantella.
Laboratory Logic. Why did it take so long for the diagnosis to be made? Mainly because in the ’50s no one expected to see such behavior in developed countries, least of all among sophisticated personnel in a great medical center. In an age of scientific medicine, it seemed much more logical to send specimens to the laboratory and put them under the microscope.
The Royal Free’s doctors had good reason for beginning with a strictly medical approach. Some of the victims’ symptoms included loss of feeling in the extremities and severe muscle weakness. In a few cases with paralysis, poliomyelitis was suspected—reasonably enough, since there was an outbreak of polio in the area. The eventual consensus was that some form of encephalitis had struck.
Still, Drs. Colin P. McEvedy and Alfred Beard suggest that the Royal Free doctors were wrong in concentrating on their tongue depressors and throat swabs and ignoring the emotional factors. For one thing, none of the victims died or even had a high fever, a most unlikely finding in an infectious epidemic. The known presence of polio in the area, say the psychiatrists, had made the hospital population fearful. After that, “anxiety must have been self-propagating and mass hysteria the major factor at work.”
No Slur. What virtually clinches their explanation, they feel, is the distribution of the malady within the hospital. Among 600 men, only five cases were rated as severe, for an attack rate of 0.8%, whereas among 1,760 women there were 193, or 11%. Most of the victims were nurses under 30. This fits the pattern of similar epidemics, including one at Los Angeles County Hospital in which 78% of the victims were nurses. Other outbreaks have been in girls’ schools and a school for midwives.
“The diagnosis of hysteria in its epidemic form is not a slur on either the individuals or the institution involved,” say McEvedy and Beard. “Whereas it is true that sporadic cases of hysterical disability often have disordered personalities, the hysterical reaction is part of everyone’s potential and can be elicited in any individual by the right set of circumstances. A mass hysterical reaction shows not that the population is psychologically abnormal but merely that it is socially segregated and consists predominantly of young females.”
The first thing to note about this article is that it does not appear in a part of the publication which deals with health, or medical research. The heading is ‘Behavior” The article is not about myalgic encephalomyelitis, or any of the other labels assigned to this illness by the doctors who reported on these outbreaks. It declares itself in the title to be about ‘mass hysteria’, and does not offer the reader any other options for labelling this illness. Nor is it about the question whether it may be a physical illness, that has already been answered.
The list of symptoms does not refer to what Ramsay regarded as the definitive symptom, the ‘muscle fatiguability’ which required an excessively long period for recovery, nor did it mention the swollen and sore lymph glands which, along with the sore throats, were indicators of an immune system response which, unlike the neurological responses which McEvedy reported on, could not be simulated. It is also not immediately obvious how ‘hysteria’ could produce ‘vomiting and diarrhoea’, and those were not symptoms which were particularly emphasised in the patient notes on which the ‘mass hysteria’ construction was based.
The paper by McEvedy and Beard which examines the Royal Free outbreak was the work submitted by McEvedy for his Oxford PhD. Beard was his supervisor. McEvedy had previously gained his Masters for a paper on two outbreaks of ‘mass hysteria’ in girl’s schools, which one of the headmistress’s involved later described as ‘a mild gastroenteritis, lasting a day or two’. (She was reported to have been ‘still angry, ten years later’ about McEvedy’s account.) However, mentioning these two symptoms in the TIMES article links back to his earlier paper, however reliable that may have been, creating the building blocks of his ‘mass hysteria’ hypothesis.
The article continues: ‘The known presence of polio in the area, say the psychiatrists, had made the hospital population fearful. After that, “anxiety must have been self-propagating and mass hysteria the major factor at work.”‘ According to Ramsay, what had occurred in the area was a few isolated cases of the illness which he believed had formed ‘the nidus of infection’ which then became epidemic in the hospital. What none of those who ascribe these outbreaks among hospital staff to fear of polio take into account is that polio had been epidemic in the Western world for years, that it did not tend to be contagious to hospital staff, and that staff were used to dealing with it. If ‘mass hysteria’ among hospital staff due to fear of polio was a genuine phenomenon, it would have been occurring in hospitals all over these countries on an ongoing basis for as long as polio had been around. The relative rarity of the reported outbreaks to which McEvedy and Beard refer makes this an extremely improbable diagnosis.
TIMES readers were also unlikely to have consulted the table of similarities in McEvedy’s article between the symptoms of the Royal Free patients and the schoolgirls he studied, in which one dissimilarity was the symptom of ‘anxiety”. The girls suffered anxiety, the Royal Free patients scored relatively low. The ‘must have been’ is an assumption unjustified by their own research.
This is followed by a reference to the hospital’s ‘expert microbiologists’, who, failing to find a bacterial cause, started looking for ‘an even smaller and more elusive germ, an unidentified virus’. While this phrase does identify the writer as ignorant of the fact that a virus is not a germ, the whole sentence has the effect of almost infantilising the ‘expert microbiologists’ ..who couldn’t find what they were looking for, so started looking for ‘something smaller’. It is perfectly scientifically credible to look for viral factors in the absence of an identified bacteriological factor, but this subtle use of language suggests otherwise.
We then have the ‘not so’ assertion, which has been arrived by two psychiatrists who have combed the ‘voluminous notes’ (but not examined any patients) at the Royal Free hospital, and those of,other outbreaks reported around that time. The effect of the word ‘voluminous’ in this context is two-edged. The subtext is both that the notes may have been ‘voluminous’ because of efforts to defend the assertion that this was a physical illness; and that the researchers were very thorough in their study of great swathes of material.
According to Malcolm Ramsay’s account, McEvedy came to,the Royal Free Hospital for one day only, declined an invitation to examine some of the patients (who were in the hospital, still sick, fifteen years after first becoming ill), spent a few hours in the records department, and left. Whether a few hours is long enough for careful study of ‘voluminous’ notes is one question. Another question is ‘which notes?’ Ramsay writes that of the 292 patients who were in the 1955 outbreak, he only kept detailed records of the 200 of whom he was certain were suffering a physical illness. Of the other 92, because he felt they may have ‘succumbed to panic at seeing so many of their friends falling ill’, he did not keep such detailed records. He goes on to say that the notes of these patients ‘provided ample material for McEvedy’s hypothesis of ‘mass hysteria’. Although McEvedy stated in his article that patients had been selected on the basis of severity, quotations from two indicate that the possibility of a psychiatric element had been recorded in the notes at the time of the epidemic. This indicates that these were samples from the 92 whom Ramsay had already eliminated from his own researches. If, as Ramsay hints, McEvedy used only the notes of patients Ramsay had already eliminated on psychiatric grounds, then two things must follow: The first is that there was no disagreement between McEvedy and Ramsay about the fact that these patients were suffering from hysteria. The second is that in the case of the Royal Free epidemic, McEvedy had not studied the notes of anyone who Ramsay judged to be suffering from ME.
Be that as it may, it seems that the study of these voluminous notes leads inexorably to the conclusion that this outbreak is ‘in the same category’ as ‘the dancing manias of the Middle Ages, or the Neapolitans ‘tarantella’. This certainly gives colour to the ‘mass hysteria’ label, quite a vivid association for the reader. Whether or not it is possible to be confident in diagnosing illnesses which took place in the Middle Ages, it is possible to compare these reports as against the behaviour of people who have ME. As far as I am aware, symptoms described in accounts of outbreaks have not included reports of patients frantically throwing themselves about. But for purposes of shaping the reader’s responses to any subsequent reports about this illness, the association serves very well, if the desired response is skepticism and disbelief.
Then there is the defence of ‘laboratory logic’. The fact that investigations were undertaken because symptoms that were possible to confirm by investigation, and impossible to simulate justified investigation is not mentioned. No, these were only undertaken because this ‘behaviour’ was not expected in the 20th century, ‘least of all among the sophisticated personnel of a major medical centre.’ Indeed. However, in the concluding paragraphs, the clinching argument for the ‘mass hysteria’ label is that this illness predominates among females. Suddenly trained nurses working in a modern hospital have ceased to be ‘sophisticated personnel”, and have become ‘socially segregated’ ‘young females’, equated with uneducated schoolgirls in a cloistered environment, in whom ‘hysteria’ is assumed to be prevalent.
The gender issue is neatly elided in the paragraph which begins ‘No slur’. (It is kind of the authors to clarify that the predominance of this illness among females under 30 is ‘no slur’. Is there some. recognition that it might be a slur? On whom? Patients? Men who succumb? Women under 30?)
Passing swiftly over the ratio implied by the existence of the illness in 600 men as against 1,760 women (about 1:3, a ratio common in autoimmune disorders), the greater disproportion between between percentages of reported severity (0.8% as against 11%) is used to strengthen the argument that this complaint can be explained entirely by its prevalence among young women. This leaves unexplained its occurrence in any men at all, let alone professional men over 30, in co-educational schools, or army barracks. But, despite the authors insistence that no slur is intended, it does put all patients at risk of the general cultural response to the label ‘hysterical woman. Perhaps the ‘no slur’ was always intended to be ironic?
The term ‘behaviour’ itself is layered with meanings and connotations which work in favour of the ‘mass hysteria’ theme. It is worth noting that in this issue of TIME magazine, read by millions across the English-speaking world, this article was included in a section not about ‘health’, or ‘recent developments in research’ but ‘Behaviour’. Un-named and unacknowledged as an illness,
Myalgic Encephalomyelitis is just ‘behaviour’. Good behaviour, bad behaviour, we can and should control our behaviour, we should behave as good children, good students, good workers, good parents, good people. We will be judged by our behaviour, because we choose our behaviour, we are responsible for our behaviour. When Parsons introduced the term ‘sickness behaviour’ , he points out that when such behaviour is judged to be an authentic manifestation of a genuine illness, the ‘sick role’ confers both benefits and responsibilities. The sick person is excused from certain responsibilities, but is expected to be a ‘good patient’, following the doctor’s instructions, cooperating with treatment.
It is also pointed out somewhere (possibly on a list headed ‘the obvious’) that ‘sickness behaviour’ is caused by sickness and our body’s inmate mechanisms to help us get better. Tiredness is a signal that we need to rest, pain is a signal that we have a serious problem we need to do something about, and that that something usually involves holding still. When we are sick, lying down, keeping warm, stopping eating are all ways for us to conserve energy so that our immune system and whatever else our body does to heal can get on with its job. It is a survival mechanism, not consciously chosen behaviour.
And it is evident, in most illnesses, that rest is essential for recovery, and that demanding that very ill people ‘keep active’ is going to be counterproductive. Broken legs do not heal if walked on; people who are in the acute stage of pneumonia do not benefit from exercise. Telling such people to give up their ‘illness behaviour’ is not going to resolve their health issue.
It must be acknowledged that when medicine had little else to offer for the effective treatment of infectious illnesses, lengthy periods of bed rest were prescribed which more recently were seen to be counterproductive. Women were typically expected to stay in bed for six weeks after childbirth (at least middle class women who could afford help). This was found to delay recovery, as muscles weakened and there was a risk of thrombosis. The advent of antibiotics encouraged an attitude of ‘take the tablets and carry on’, an attitude relentlessly reinforced by TV ads for over-the- counter products to relieve the symptoms of colds, flu, allergies, and so on. We live in a culture dominated by the idea that the sick and disabled must ‘fight’ their situation. If they fail to do so, they must be simply out to get the benefits provided by government welfare programs and medical insurers, and this must be resisted.
It is also true that exercise has been found to be beneficial in many situations in which previously, inactivity would have been advised. We are increasingly reminded of all the health benefits of exercise, as almost daily some new report tells us how our death can be forestalled by jogging, swimming, cycling, walking, or even going up and down the stairs. The mood of depressed people is improved by exercise, so the benefits extend to mental health as well.
People who have recovered from heart attacks, other serious illnesses, or painful injuries may need to be persuaded that they no longer need to avoid the normal exertions of living. But note ‘recovered’. People who are depressed don’t want to do anything, they are sunk in apathy which gets mislabelled as tiredness. These are the ones who will truly benefit from encouragement and persuasion to exercise. If they continue ‘sickness behaviour’ because of anxieties which are no longer appropriate, they wilt benefit from being persuaded to change their beliefs and become more active. Those who are doing the persuading have a professional and moral responsibility to make sure that their ‘recovery’ is complete enough so that they will not suffer harm through inappropriate encouragement into activity. Exercise is not without its dangers – when a popular and loved celebrity dies from a drug overdose, we are all reminded of the dangers of drug abuse, but when one drops dead in the gym or after a run, do we hear similar warnings? It seems that exercise is the drug that can be prescribed without a list of potential side effects, or provisos as to appropriate use.
When ‘sickness behaviour’ seems to be caused by unrealistic fears, addressing the fears is an appropriate course of action. When ‘sickness behaviour’ is judged to be engaged in for purposes of gaining the advantages accruing to genuinely ill patients, then society responds with moral indignation and practical penalties. The ‘genuinely ill’ are relieved of normal economic and domestic activities, and are personally cared for, either in their.home or by agencies provided for the purpose. This is paid for by the ill person him/herself, by their family members, by medical insurers or by the state. Those doing the caring and the paying have an investment in knowing whether or not the illness behaviour to which they are responding is due to illness or being enacted on some other basis. If the ill person believes he/she is ill, but is not, the ‘sickness behaviour’ is re- categorised as a ‘mental illness’, which still invokes some sympathy, but is seen to require a form of treatment addressing the ‘false illness beliefs’ and changing the (inappropriate) behaviour. If, on the other hand, the supposedly sick person is suspected of deliberately and illicitly seeking the privileges of the sick role, judgment is very harsh. Sufferers from an illness convincingly portrayed as either a mental illness or just (bad) behaviour are at the receiving end of these self-righteous and punitive attitudes, as well as their practical effects. The ‘secondary gains’ conferred by this combination of a debilitating and painful illness and the social attitudes generated around it too often include loss of both income and relationships.
The publication of McEvedy and Beard’s two articles in the BMJ will have had some effect within the medical profession. The immediate and enduring impact of the TIMES article is to create a widespread and powerful public perception which discredits the sufferers of this illness, the doctors who believe them and the researchers who continue to seek medical explanations.