By David Tuller, DrPH
Now here’s a paper called “The Effects of Messaging on Expectations and Understanding of Long COVID: An Online Randomised Trial,” from researchers at the UK’s Health Security Agency. Two of the nine authors, including the senior author who conceived the study, are also affiliated with a National Institute for Health Research unit that partners with a King’s College London team led by Professor Sir Simon Wessely.
This paper is a pre-print, posted before peer review–so we have no idea what will happen once it undergoes more scrutiny. But the research appears designed to reinforce the notion that psychological and emotional responses to public discussion and framing of post-Covid-19 symptoms could account for much of what patients report about their own condition.
Academics Keith Geraghty and Jonas Kunst have already commented on it, here and here.
The researchers posit that “the extent to which people experience Long COVID symptoms” could be affected by factors like “the extent to which the likely prognosis is communicated to be uncertain,” and “the definition of Long COVID (i.e., whether the symptoms are described as ongoing COVID-19 recovery or redefined as a new syndrome e.g., Long COVID.” (In the study, long Covid is defined as symptoms lasting more than four weeks after Covid-19 that cannot be explained by an alternative diagnosis.)
It is a truism that public discussion of an emerging syndrome whose parameters remain unclear will create some confusion and likely lead to increased concerns about possible illness, whether warranted in a given case or not. But it is quite a leap from acknowledging that reality to assuming that the long Covid phenomenon is itself largely an epidemic of coronavirus-related distress and anxiety expressing itself through somatic complaints.
For the study, a representative sample of 1100 members of the UK public filled out online questionnaires. All participants were presented with the hypothetical scenario of receiving a positive coronavirus test result. Half were then provided with information about prolonged symptoms defined as “ongoing COVID-19 recovery” while the other half received similar information but with the symptoms defined as “Long COVID.” In addition, the information offered to half the participants (a different half!) emphasized uncertainty surrounding these prolonged symptoms, and information provided to the other half did not.
Then the participants were asked questions about their expectations of hypothetical prolonged symptoms. Not surprisingly, those who received information about “ongoing COVID-19 recovery” reported more optimistic expectations for such symptoms than those in the other group. Similarly, those who received information that did not emphasize the uncertainty surrounding the symptoms also had more positive expectations.
As the researchers write:
“We found a main effect of illness description: individuals reported longer symptom duration and less illness coherence when the illness was described as Long COVID (compared to ongoing COVID-19 recovery). There was a main effect of illness uncertainty: when uncertainty was emphasised, participants reported longer expected symptom duration, less treatment control, and less illness coherence than when uncertainty was not emphasized.”
(People, this is not surprising. If you cast information in a more positive or negative light, people will have more positive or negative predictions, accordingly.)
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Should uncertainty be downplayed?
So based on speculative answers about imaginary symptoms following hypothetical tests, the researchers recommend that the term “ongoing COVID-19 recovery” rather than “Long COVID” should be used “where possible.” They also conclude that information provided to patients should downplay the degree to which so much about the condition remains uncertain.
Where to begin?
The introduction of the paper sets the stage by mostly focusing on research involving associations between illness expectations and illness outcomes. The researchers appear to be implying or presuming that these associations are causal in one direction–in other words, that negative expectations lead to poor outcomes. But it is equally if not more plausible that in many instances people’s experiences of illness influence their outcome expectations–in other words, that causality goes the other way.
Take this statement, for example: “Defining a new syndrome is likely to increase strength of illness identity, which has been associated with poorer quality of life.” (For those keeping track of these things, the reference for this sentence is a Moss-Morris paper about chronic fatigue syndrome.) The implication is that adopting such an illness identity and joining support groups, for example, will somehow lead patients to report poorer quality of life. But it should be expected that patients with worse symptoms, and therefore likely a poorer quality of life, would be more inclined to adopt a stronger illness identity and join patient support groups in the first place than those with milder symptoms.
In any event, studies of people who already have illnesses and therefore have actual lived experiences on which to base expectations about the future is one thing. This is a study in which participants are being asked to imagine they have an illness and then to characterize symptoms they haven’t. experienced based on information they’ve been given. It’s like fantasy sports. (To be fair, the researchers mention the hypothetical aspect as a key limitation.)
Most people, but not all, recover fully from viral illnesses, even if it can take a while. Hopefully, in the end, most people experiencing prolonged symptoms after Covid-19 will find that with time they get better. But so far, many of these patients remain seriously disabled and have not experienced “recovery.” Moreover, their doctors cannot reliably assure them they will fully recover, and if so when it will happen.
Long Covid, post-acute sequelae of SARS-CoV-2, and the other current names are generally descriptive. In contrast, “ongoing COVID-19 recovery” feels like a propaganda ploy to convince patients that we know more than we do about their prognosis. In the real world, if not in papers based wholly on hypotheticals, most people want to recover, whether or not their condition is called ” ongoing COVID-19 recovery” or “Long COVID.”
As for emphasizing or not emphasizing uncertainty–What does that even mean? The long-term outlooks for those who remain plagued by symptoms is unknown. Treatment approaches are hit-and-miss. Unfortunately for patients, doctors, and everyone involved, there is still a huge amount of uncertainty. This is an indisputable fact regarding the current state of medical knowledge.
What is the alternative to presenting patients with the truth about the many things we don’t know about the situation? How, in this context, do you “not emphasize” uncertainty about symptoms? What “certainty” would these researchers like to present to patients instead?
It sounds to me like these researchers are either in the hyper-optimistic/fantasy-land “covid is just a cold” camp or they lack imagination and simply can’t conceive that a serious illness could have serious health repercussions. Perhaps they earnestly believe that what doesn’t kill us makes us stronger? It would be nice to know which of these, if any, explains this nonsense.
David writes:
“In the real world, if not in papers based wholly on hypotheticals, most people want to recover, whether or not their condition is called “ongoing COVID-19 recovery†or “Long COVID.â€
But I doubt that they appreciate that most people want to recover. I strongly suspect that they inhabit an ‘us and them’ unreal world where they think that they are the enlightened positive thinkers with the right attitude and the rest of the world is made up of whining negativists who are quite happy to play the victim and milk it for all it’s worth.
There’s a word for people like that, but it escapes me right now.
No, no mate, can’t use “ongoing COVID-19 recovery†it doesn’t fit on the page. Doesn’t the gut tell the brain what to do?
“from researchers at the UK’s Health Security Agency”
This approach is hardly securing the health of the (UK) nation, is it? Without any meaningful biomedical treatments, the chronically sick are currently being left to get sicker and sicker and, unsurprisingly, they lose their ability to function and work. Often, their mental health will take a dive too. Instead of there being any attempt to improve the situation or prevent their conditions from worsening, they’re abandoned by the NHS and told to think positively. “Just find a corner of your house where you can sit and be mindful”, that sort of thing. All the previous investment in their education, training and wellbeing goes to waste. And from what I see, it is an appalling level of waste. Apart from being morally bereft, it makes absolutely no economic sense.
This presumption, from the BPS cabal, that patient’s preconceptions will alter their medical reality has suffused ME literature (admittedly ‘literature’ is probably a kindness, ‘utter garbage’ might suit better) for a very long while.
On seeing a well known BPS neurologist (obviously I was unaware of his predilections at the time, otherwise I wouldn’t have bothered) almost 20 years ago, I was told that in advance of being admitted to his ‘CFS ward’ (thankfully something which never happened because my parsimonious LHB refused funding and I later became aware of quite how potentially harmful that might have been) I was told by him that “I won’t tell you what drugs we’re going to use on you because you’ll go away and read up about all the side effects and pretend you have them”! And I have witnesses to that.
Clearly those unfortunate enough to develop Long Covid (which seems to be the name preferred by the community so lets go with that, although it’s interesting that the BPS are already trying to re-frame and re-name as they did with ME…note to pwLC: resist that with every fibre of your being) are now open to the manipulations of the loony KCL BPS brigade. It was obviously going to happen, but they’re bloody quick off the blocks aren’t they? I suppose it’s easy to be speedy when you have pro-forma junk science to fall back on. Bit of Tippex and that dusty old ‘CFS’ (whatever ‘CFS’ is) rubbish can be given a new life. Oh and lets remember that the quality of ‘work’ from this stable was deemed of ‘low’ or ‘very low’ quality by NICE. Says it all.
As CT says, they insist on living in their fantasy world. And they continue to attribute perverse motivations to people who do not recover. They never posit the converse hypothesis about expectations: that people fully expect to recover, yet, sometimes they do not recover. That’s us and Long COVIDers. When I had my final trigger of pneumonia I fully expected to recover from that. When it turned into what was diagnosed as CFS, I fully expected to recover from that. Little did I know! Yet here I am, 21 years and many positive expectations later, worse than ever. I still have trouble identifying myself as an ‘ill’ person. No doubt they’d dream up something perverse to explain my condition too!
Shouldn’t they call it “ongoingness” because focusing on any name of a disease will make the person think that they are ill and they therefore won’t recover, and the word ‘recovery’ in itself implies that there’s a disease to recover from, so that should be out too. While we’re about it, let’s cancel all disease names and all support charities because if people think they need support in any form then they’re never going to recover. No more charity ribbons either because they just perpetuate the idea of disease and a need for support. That’s all far too negative.
So instead, let’s say that we’re all (suffering fromX) in a state of (✔) “ongoingness”, yes, that’ll do, that implies longevity with no negative associations.
Thank you for a much-needed comment on this this paper. Money talks. Invalidating people’s symptoms and suffering will make it much easier to deny them the healthcare benefits they are entitled to. In Norway the state is already saving millions of Dollars on denying me-sufferers their benefits and I see the same attempts on illegitimating long haulers conditions.
My “Ongoing Epstein-Barr virus Recovery” will enter its 30th year in June.
We should remember this paper is most likely about helping insurance companies deny long covid ill health claims and helping the the NHS buy cheap evidence based treatment to avoid supporting long covid properly. We all know it’s not really a study but simply marketing. It’s a shame the NIHR can’t help patients.
The U.K. Department for Work, Pensions and Eugenics will be pleased to see that their their colleagues at the UKHSA Behavioural Science and Insights Unit are continuing the good work, by providing them with the basis for a new excuse to disallow legitimate disability benefit claims.