Article in Vice: The Medical System Should Have Been Prepared for Long COVID

I disagree that long-COVID is not MUS. MUS is whatever illness psych folks decide to try to claim and they absolutely would like to claim long-haulers, and are actively trying to do so.

On the other point, about whether to discuss these issues through the lens of ME or MUS, I don’t think it really matters which space you draw the lesson from. The reality is that the medical community has a deeply ingrained willingness to dismiss patients as irrational, untrustworthy, and otherwise not credible and there are systemic pressures that reinforce that behavior and compound the negative effects on patient care and the patient experience.

Several years ago, my cousin died from colon cancer after her doctors repeatedly, over many months, dismissed symptoms she was having as the product of anxiety. It might seem silly to say that she died of medicine’s willingness to accept MUS and psychology’s willingness to push it, and I would agree, but her death certainly springs from the same place as all the mistreatment we all here have received over the years. If framing these issues using MUS gives people a single label that lets them wrap their mind around that base phenomenon, I’m not too troubled by it.

I thought this article was great.

 

I absolutely agree but my main point was that I don't think this has much to do with being 'unprepared for LongCovid'.
I would now be struggling with inoperable prostate cancer for the same reason as your cousin if I had not been lucky enough to be able to seek out knowledgeable medical colleagues.

 

The hostile responses from people who strongly believe in this BPS stuff is mostly made up of thought-terminating clichés and other arguments of no substance about things that weren't actually said.

I'm kidding it isn't mostly made up of this it's entirely made up of this. Zero argument of substance to be found, only nitpicky whines that miss the point so thoroughly they pretty much reinforce it, that no one can tell the difference and as such confident assertions of those processes are simply invalid, the medical equivalent of God works in mysterious ways (followed by a smoke bomb, obviously).

 

I’m not sure I understand your perspective. Are you making a point about the framing of MUS in regard to “long-haulers” or suggesting that medical dismissiveness of post-infectious illness has not made us unprepared for this particular wave of post-infectious illness?

If the latter, this has been going on for so long that I can’t see how the medical community would not have more understanding than they do now had they behaved differently. If that wouldn’t have yielded some ability to prevent, predict, or treat, surely it would at least have resulted in better guidance to pace and less belittling.

 

Trial By Error: Another Excellent Read on Long Covid, ME/CFS and Medically Unexplained Symptoms

In a post earlier this week, I noted some differences in the tenor of the debate over Long Covid in the US and UK. Yesterday, another excellent and in-depth piece on the issues appeared on the domestic front, this time in VICE. The author, Alan Levinovitz, is associate professor of religious studies at James Madison University in Virginia. (School motto, according to Wikipedia: “Knowledge is Liberty.”) Besides religion, Levinovitz writes on a lot of other interesting topics, like science and belief systems and how they intersect. Last year, he published Natural: How Faith in Nature’s Goodness Leads to Harmful Fads, Unjust Laws and Flawed Science. (It’s a good book.)

When the VICE article–“The Medical System Should Have Been Prepared for Long COVID”–popped up on my screen, it had slipped my mind that Levinovitz had contacted me some months ago. I still don’t recall our conversation in great detail, except that he seemed smart and engaged and appeared to be taking ME/CFS and the possible links to Long Covid seriously.

Well, I’m really glad I talked with him. He’s done his research. January’s New York Times Magazine article and other recent pieces explored some of the complicated overlaps between ME/CFS and Long Covid. Now Levinovitz has taken the matter a step further, asking why we don’t know more about post-viral illness in general. His answer, in part, is the long-standing neglect of ME/CFS. This is not news to those involved in the issue. But it is gratifying that a sharp outside observer has weighed the available information and come to the same conclusion.

https://www.virology.ws/2021/03/20/...id-me-cfs-and-medically-unexplained-symptoms/

 

I am not sure that the medical community would have more understanding they had behaved differently. I think it is more that if they had more understanding they might have behaved differently. But we don't have any understanding of ME much. I agree that the medical profession should not have accepted the old wives' tales wrapped in clever-sounding words that is the BPS approach. But I don't thinkI agree that the BPS people prevented an understanding. They were always quite keen on biomedical studies. Wessely looked at genetics and others looked at metabolism. They even got hung upon hypermobility.

The technology needed to understand rheumatoid appeared in the late 80s and early 90s. If technology available now could show what is going on in ME I think someone would have stumbled on it just by chance by now. I think the problem is that the abnormal process is something we currently do not know how to detect.

But my main point is that I think issues are being muddled together. We were in fact prepared for LongCovid - or post-epidemic illness in general. The appropriate management was to prevent disease spread, which we could have done if we had followed standard public health measures.

I am also not sure that the better guidance and less belittling is necessarily is clear an issue as the press and twitter might make it. I strongly suspect, from various tweets, that patients are clamouring for treatment, and in fact clamouring for rehab and physio. If they are being told just to let time pass and not tone unduly worried about not being better yet that may be entirely fair. Over the years my experience has been that physio departments are there because people like going to them.

I can just imagine being a GP trying to deal with someone four months after Covid feeling desperate because they are still ill and wanting all sorts of tests and treatment. It might well true that they are unduly anxious.

My impression is that everything is being turned into a human rights issue, like all the articles in the Guardian everything these days, when in fact it may be much more complicated and less black and white.

Everybody seems to be shouting - why aren't people getting treatment? when the reality is that ME has shown us that solar we do not have themes to devise such treatment. It is not that people are complaining about being sent to the wrong treatment by and large (apart from a few, some of whom, like Garner, then do an about turn).

The answer maybe ought to be that doctors more often should say 'I don't know' andI think they should but a significant proportion of people regard such doctors as useless and just ask to see one that says they do know.

 

My main problem with long covid and ME/CFS advocacy these days is that much of it revolves around clamouring for more allocation of resources and supposed lack of access to healthcare services. But staying as far away as possible from the medical system may be a good thing in this instance. There is no treatment and when it comes to research funding they don’t even know where to look. And when private funding occasionally comes along you typically see millions wasted on insane projects that make no sense. It’s a very simplistic way of thinking that tries to reduce every problem to inequality. In fact being broke has probably saved many people from accessing some of the more harmful treatments out there like long term IV antibiotics and neck surgery.

 

Thread in response to feedback:
https://twitter.com/user/status/1372920466122366977

The whole thread can be read here: https://threadreaderapp.com/thread/1372920465010876416.html



Separate thread:
https://twitter.com/user/status/1373009236029009928

Whole thread can be read here: https://threadreaderapp.com/thread/1373009236029009928.html

 

https://twitter.com/user/status/1372921360410939392

 

I see. Thank you for sharing. I do now recall some of this having been discussed in previous threads. We have some profound differences in how we view things.

On the issue of how medical staff treat “long-haulers,” I think it’s pretty dismissive of patients to suggest the medical community is merely suggesting that patients wait to see whether they improve. There are a few issues to unpack here.

The first is that, assuming for a moment there are no treatments that can help “long-haulers,” people disabled by COVID-19 need financial support while they wait to see whether they will recover. If doctors aren’t engaging in their medical care, they aren’t getting the testing they need to apply for disability. In that case, how do they live and what happens to them when a year or two of waiting yields no improvement?

Second, still granting that there are no treatments that can help, there is considerable variability in what it means for a doctor to advise a patient to wait. The first doctors I saw all basically told me to ignore my symptoms and live my life as if I weren’t sick. The first EDS and ME specialists I saw told me to rest and sleep more, but keep working and keep exercising, albeit with a heart rate monitor. No one advised me to pace as aggressively as I should have, as ME patients now advise newly diagnosed to rest. There are wide differences in outcomes depending on what different doctors mean by “waiting.” I got sicker with early guidance, stabilized with expert guidance, and potentially lost the ability to recover in those early years because few emphasized how aggressively I might need to pace.

Third, there are treatments that can be delivered now that can improve patient quality of life. My wife is a “long-hauler” and developed severe POTS overnight. She used to dance lindy hop and blues a couple nights a week in Manhattan; now, her heart rate increases 50 bpm when she gets up from the sofa and she can black out and crumple to the floor if she stands up for too long. She was able to get a tilt table test and advice on how to manage POTS with drugs, increased fluid intake, and compression stockings has improved her symptoms. There are of course other treatments for symptoms and co-morbidities.

Lastly, though, it would be amazing if the medical community were as benevolent as you suggest. In my experience a good portion of doctors, maybe 30-40% will straight up belittle you, refuse to treat you, or swear up and down that your symptoms can’t be happening, can’t be that severe, or aren’t related to X event and are effectively not their problem. 50-60% will either not engage in your care in any meaningful way, leaving you with the clear awareness that they want you to go away, or will write referrals to other specialists, but take no interest in helping you manage your care. It is a very small fraction of providers that are supportive and empathic, and a smaller number who will engage in the management of your care, even as relates to more basic symptomatic treatment. Granted, this is my experience in ME, but from what my wife is seeing on the “long-hauler” forums and from what we have heard from friends who have been affected, the reaction “long-haulers” are getting tracks with how ME patients have been treated.

The medical community is not benignly suggesting patients wait and see. When they are not belittling and abusing patients, they are abandoning them to financial ruin, deterioration, and a possible lifetime of illness. If the medical community acknowledged patients’ complaints, managed their symptoms in even the most basic way, and helped patients understand what to expect, you would not see the reaction you’re seeing in the media.

 

A large portion of the healthy population have very unrealistic ideas about modern medical capabilities. Perhaps it has something to do with soap opera style medical tv dramas where very sick and/or dying patients almost always seem to miraculously recover or survive?

 

OK. I feel quite strongly that doctors should not be using tests simply to satisfy box ticking for financial reasons when the tests do not actually mean anything. There are no tests here that mean anything far as I am aware. We need a system that recognises and supports illnesses with no tests-of which there are many.

Yes, we are agreed that PWME are being given wrong advice based on unsubstantiated theories. But I am not at all sure that we can assume this is happening for people with LongCovid or that it has much to do with MUS.

So why haven't the physicians whose these treatments done proper trials? This seems have nothing to do with MUS.It is about 'biomedical' physicians not having backed up their management with gathering proper evidence.

I don't see this sort of blanket accusation as being of help to anyone. Most doctors I know try to do the best they can. They may be misinformed but much of that misinformation reflects attitudes that exist much more widely in society than just in the medical profession. Yes there are problems for PWME but I still don't really see a connection to the MUS concept and being unprepared for LongCovid.

Levinovitz clearly sees that there are deeper layers that he may have missed. That is encouraging but I think he could have researched a bit more carefully from the start.

 

I agree it would be appropriate to not underestimate the influence that pop culture has in the form of medical dramas or even the the most ridiculous fluff zine pieces that one can read while sitting in a doctors office.

And even the dramas that strive for a high degree of verisimilitude fall prey to bringing miracles and god into the narrative when faced with the most difficult medical moments. Rather than just acknowledging there is a space where we come up against the unknown.

 

Are you implying that the medical community should not be concerned with whether patients are able to get the documentation of disability that disability systems require, acknowledging the fact that patients live in the world of “is,” not the world of “should be”?

Secondly, you seem to imply testing and treatment have no value whatsoever in ME. Am I correct in this reading? Does this also extend to “long-haulers?” If this is the case, at what point should doctors decide that the symptoms patients are presenting are an illness that no longer demands any investigation? Who gets to decide that a patient asking for a test is being “unduly anxious”? And how, in the real world, does that not lead to the type of misdiagnosis and under diagnosis that killed my cousin and could have killed you?

I think my wording was unclear. I personally think that there are no effective treatments for the disease, but that symptomatic treatment has some value, even if the benefits are subtle and consequently difficult to measure compared to the magnitude of benefits you would traditionally expect from treatments addressing core pathologies.

So I am clear. You feel diagnosis of POTS by tilt table test shouldn’t be done? You also feel treatment should not be done?

I can’t personally speak to the evidence base for POTS, as I don’t follow these things like I used to, and I’m not sure we could agree on what constitutes an evidence base given our differing perspectives, but I will say that I think that treatments of more marginal impact can have value even when that value is difficult to quantify, particularly in diseases for which there are no recognized treatments. There are many treatments for co-morbidities that are generally accepted as being helpful in ME. It may be that these treatments have no impact and are of no value and that just being treated kindly and being given “something” helps people, but it may also be that, in a disease without treatments addressing core pathologies, treatments addressing symptoms have an impact that is so small it is difficult to measure, even though that small impact is large enough to matter to the people that benefit from it. It strikes me as excessively dogmatic to be certain either way.

Are you implying that doctors belittling patients is not a significant problem? I specifically relayed a rough estimate of the medical folk that have treated me variously in an overtly aggressive and dismissive way. Patients with a variety of different poorly understood diseases are saying this happens with shocking frequency. Is the response that you haven’t seen it especially relevant?

 

If "biopsychosocial" hadn't become so utterly meaningless at this point, this would actually be a moment in which it might prove useful. What we have here is:

A biological disease, COVID-19, which has all sorts of biological post-infectious sequelae including long-term recovery and/or ME/CFS,

Psychological problems in which

1): some clinicians--none of whom have gone into medicine so they tell patients "I don't know what's wrong with you and can't help you"--find their impotence in treating post-COVID conditions (and conditions like ME/CFS) so unpleasant that they project their frustration outward onto patients, while

2): many patients find the situation of no available treatment intolerable and continue hunting for a clinician who will do something, eventually finding someone who will, at best, waste their money (I know I did for the first several years),

and several social problems, namely,

1): patients are desperate because they are too ill to work or care for themselves and their children. Here in the US there is the added Kafka-esque horror of losing your health insurance if you lose your job because you're too sick to work. Almost nobody in any country that I'm aware of has access to short-term disability insurance for an extended convalescence. When I was becoming increasingly disabled, my primary care provider kept pleading with me to take time off graduate school to recover--which she was absolutely correct about. However, my response was always "how would I support myself? I need to be a full time grad student to keep my teaching position and I can't think of any job that would accommodate my limitations as much as my current job." The problem at this point was not a medical one but a political economy one.

2.): while I've had some real asshole clinicians over the years, as well as some truly stellar ones, most are simply muddling along as best they can in a really really shitty system in which they simply cannot do their jobs. In my last clinic, my primary care provider was required to see 22 patients a day (and on the day we had that conversation, he actually saw 23!). Patients have been turned into the candy on the assembly line in that old I Love Lucy episode, with clinicians having about as much success in managing as Lucy did with the candy. Thus, it makes perfect sense to me that when faced with a condition like ME/CFS or Long-COVID, clinicians are going to simply shrug and move on to the next exam room where there is probably going to be a patient they can help. Very frustrating when your life is falling apart, but seen from their perspective, I get it.

3.): As has been mentioned by several posts up-thread, we live in a culture that woefully overstates the ability of medicine to treat the tens of thousands of things that can go wrong in a human body. Medical dramas especially exacerbate this. In some ways, medicine is a bit of a victim of its own success in that it has made some tremendous advances but there is still so much we don't know and can't do anything about.

4.): As has also been mentioned many times on this forum, our society has lost the concept of extended convalescence as well as has fallen into a binary way of looking at illness in which you either die or immediately recover. Medics believe this lie too.

I can see both @Jonathan Edwards points as well as @Mfairma (and Levinowitz's). Because there are no treatments for post-infectious malaise syndromes (for lack of a better term as "fatigue" is problematic), there wasn't really much for medicine to prepare for on a biological/treatment perspective.

But there are clearly social, political, and cultural ways we might have been prepared had there not been long-term denial that such post-infectious problems exist which medicine itself has actively perpetuated. It's true that the main reason ME/CFS has not been sorted out is that it's a bit like searching for the proverbially needle in a haystack. Even if ME/CFS had been treated sympathetically and given tons of money for research, we might likely still be where ALS is or Alzheimer's Disease. Yet it was not treated sympathetically nor given much research funding, guaranteeing there would be no scientific serendipity when a generation of would-be researchers were told to avoid ME/CFS if they wanted any sort of career.

On top of that, the mixed signals clinicians have been given over the years about the nature of this condition, along with the strong emphasis on GET and CBT as treatments have meant that clinicians now are not just unable to help but are actively making Long-COVID patients worse.

Obviously we here at the forum saw Long-COVID coming as such a thread was started on January 21st, has had almost 4000 replies, and over 200k views!

While I share some of the concerns about Levinowitz's piece--and his necessarily-long adjunct twitter thread explaining why melding psychological explanations for biological phenomena is problematic demonstrates a real weakness with the piece as is--his broad point that there is a real blindspot with regard to post-infectious illness both within medicine and in society as a whole is a very valid one.

 

You make some good points @Michelle, but is this actually the case?
Post-infectious illness is totally recognised by the BPS people. They will quote Dubbo at you happily. Post-infectious illness was a well established fact when I was a student in 1970 and remained so throughout my career. Physicians have always found it convenient to talk of post-viral illness. It allows them not to have to start doing tests for a while.

There is certainly a problem for the longer term issue of ME, which many do not believe in, but the LongCovid problem currently being faced pretty much entirely falls within the frame of post-viral illness that doctors do recognise - and especially the BPS enthusiasts in fact. My main BPS enthusiast colleague would have happily accepted that LongCovid was like post-EBV malaise - in fact revelled in talking about it.

It may be that some younger physicians have failed to take on board the concept of long term convalescence after major illness which was such prominent features health care fifty years ago. Society (what you read in the papers) may have forgotten, certainly. Levinovitz has sort of got the message about ME but I can't see that has much to do with being 'unprepared for post-infective illness' - except in the sociopolitical context, which I can see is dire in the US.

 

Not just the physicians but also the general public who are so used to there being a drug 'cure' for almost every ailment available by an easily acquired prescription or even over the counter.
While channel hopping I recently found Twice around the Daffodils, a film made in 1962.
This is a review on IMDB

 

Ron Davis described ME as the last, great, medical mystery of the 20th century.

Instead of being treated as a mystery disease that should be researched and treated it was ignored and trivialised. If it had been treated like HIV or polio or almost any other disease there would be more answers now for longcovid.

Progress in medicine made large epidemics a thing of the past (though that did not last!) so it was easy for the long term consequences of epidemics to be forgotten and smaller epidemics to be swept under the carpet. Medicine was happy to let the BPS neofreudians claim complex, little, understood diseases for there own domain as it fit social prejudices and cost less money.

The confusion wrought by bringing everything together as hysteria has made any biomedical research much harder. The first step in finding the cause of any disease is to look at symptoms but teasing them out now is almost impossible. Having fatigue, a symptom of most diseases, as the primary focus has only added to the confusion and yet it is not even an important issue. Cure the fatigue in MS, RA, lupus, whatever, would make life easier for patients, but would not touch the underlying disease and it is exactly the same in ME and probably longcovid as well.

It is shocking to me to see how other diseases are seen. I lie in bed and look out at the sun, well you all know what our life is like, but I have had 3 hospital appointments and am waiting for a CT scan for a problem with my ears yet we can't even get put onto a priority list for a covid vaccine.