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

The US sociopolitical issues with masks and vaccines is unquestionably a mess but this is not about that. It's about how the medical community has been responding to post-infective illness for decades.

I had a post-infectious set of symptoms in 1975 that landed me in the hospital and was told to rest for 6 months. But by at least the mid to late 1980s, that clinical management approach after infection appears to have changed, with a heavy lift from the BPS school and their theories regarding ME. Yes, they readily accept that infections can initiate a postinfectious condition. But according to them, it's the symptom focusing, excessive rest and subsequent deconditioning that's perpetuating the condition. The infection clears quickly, its people's behaviors and attitudes that keep them ill.

While different in important ways, the institutional treatment of Lyme echoes a similar narrative - treat for 10 days and if the patient is still not better, Lyme disease is certainly not the problem.

Those narratives were advanced by powerful players and effectively precluded appropriate clinical care or any serious investigation of ME or Lyme as biomedical diseases. Yes, ME is a complex disease but it's not the lack of the needed technology since the 1980s that kept us from researching it. It's the stigma, the starved funding, the academic centers who refused to allow their staff to research the disease, and the utter neglect and dismissal by the medical community that kept anyone from asking the needed questions.

And that's the clinical narrative we went into the pandemic with. If you had a mild or moderate COVID infection, you'd be "recovered" in a few weeks. The very fact that virtually no one in the medical world warned about the risk of a longCOVID syndrome developing for so long shows how strong that "quick recovery after infection" narrative was.

And if COVID patients don't recover quickly? Even now, some longCOVID patients are being told their continuing symptoms are not the result of COVID but rather the result of stress and somatization and being overly preoccupied with their symptoms. They need to not let their illness control their life and need to exercise through the pain. A playbook straight out of the BPS school and echoes of the MUS/SSD/BDS/BDD/functional syndrome stew.

We were unprepared for longCOVID because the research and medical communities have consciously chosen for decades to ignore, dismiss, or starve post-infectious illness and instead focused on these simplistic theories and behavioral and attitudinal fixes for the cover and easy out they provided

 

From what I'm seeing, that is the norm. In fact, I would say the vast majority of Longhaulers are being fobbed off with "anxiety" and "depression".

In my 22 years of illness, I can count the number of truly compassionate, competent and honest medical professionals I have seen on one hand. The rest have been abusive, dismissive, and incompetent. I've been gaslit and had my symptoms mocked and trivialised. My former employer was told that I was a malingerer. My mother was even blamed for my illness by one quack (this was after he had tried to pin it on child abuse even after I told him I had never been abused or bullied).

When a specialist told me that they didn't know what causes ME/CFS but that he believed that I was seriously ill, I burst into tears in front of him.


ETA: It appears to me that while new doctors are being taught to hide their contempt for patients a little better, the problem still remains. I am in between GPs at the moment and saw my parents' younger GP a few times until it became clear that she believed ME/CFS was due to anxiety and personality flaws. Indeed, after talking to my father about this, it seems she believes that 'anxiety' is responsible for many illnesses.

New GPs here seem to be taught that the majority of their patients are simpletons and it is their principle role to rescue them from themselves (mainly through advice to consume less meat/salt/alcohol/etc, mindfulness and exercising more). I however, find it all very condescending and patronising. A good example of recent experiences is in this RACGP guide to managing ME/CFS patients. As you can see, it's not only condescending and based on bad science but extremely dishonest (eg, "CBT is used in cancer too").

 

Whatever the quibbles with particular points in the article, I think these US pieces mark a big difference in how journalists are viewing these issues. The articles have opened up the debate and are busting the notion that both ME/CFS and long Covid are just about deconditioning and anxiety/depression/PTSD. They have question the wisdom of these knee-jerk assumptions. Neurologist Alan Carson, big buddy of Jon Stone and the FND crowd, was pissed on twitter about the story and Levinovitz shut him down. That article painted PACE as essentially over, with no debate over it. Whether or not MUS is or is not completely relevant is a bit irrelevant to me. The concepts and challenges are out there. And the debate in UK is lagging behind because of the continuing influence of these people.

 

You have been busting the notion for a good while now @dave30th but in comparison I am not reading anything very new or nuanced in other pieces from any continent much. Bringing in mindbrain pseudo philosophy does not seem helpful to me. The real issue is the poor science.

I have worked alongside UK physicians with a BPS approach for decades and to be honest I think the picture of what most of them actually think and do in practice painted elsewhere is sometimes misinformed. If you get into the CBT-GET mill yes things are bad but most management of people who are still ill 6 months after a significant viral infection will recognise that it may take that long. I don't think any of my colleagues were taken by surprise by LongCovid - anymore than they would be by 'LongEBV'.

Maybe physicians in the US are less enlightened. Maybe social or financial pressures are different. It reminds me a bit of a well-known US 'ME expert' at a dinner organised by a benefactor saying he thought things in the UK were where the US was 20 years ago. From where I sat it looked the other way around, with Chris Ponting sitting on my left.

We have different perspectives. I don't think comparisons are all that helpful!

 

I get the impression that the UK is significantly worse than the US in terms of attitudes to ME/CFS patients - especially if they're unruly enough to point out problems with how they've been treated. Pretty much all of the worst people connected to ME/CFS are British imo.

I also don't think O'Leary's arguments are that strong and that if criticism of CBT/GET or work like PACE is presented being about a dispute over whether ME/CFS is 'biological' then this is likely to end up helping PACE amongst the people who have the most power over us.

 

I also get the impression that things are worse in the UK. There is a lot of pressure in the US to never take days off, a toxic cultural belief that every problem has a solution and every illness has a cure, weird lack of worker protection laws etc. but at least in the US the healthcare system doesn’t generally care enough about ME/CFS to have patients kidnapped by the state, separated from their families and forced into GET. In Europe being killed or made permanently worse by inpatient treatment is a regular occurrence.

 

The overall thrust of the article was the doctors need to have humility when they're spouting about diseases that are poorly understood--whether ME/CFS, long Covid, or MUS. That seems like a good message to convey. I am less concerned about assessing each aspect or quote as to whether or not I agree with it or find it pertinent or whatever. As a social scientist and communications person--not a research scientist--I find it refreshing that these issues are being discussed in a way that is sympathetic to patients' concerns and raising doubts about expert claims. Journalism isn't going to solve the science problem.

 

the criticism of PACE specifically was not presented in that way.

 

You might be right but I would be interested to see the data from the randomised population-based age, sex and ethnicity-matched study that you have done including 35 year old female Latinos in Illinois and older Chinese men in Liverpool!

I don't think any of us are in a position to make a statement like that to be honest.

If David says that journalists are just changing tune then presumably the situation in the US is pretty bad.
The best the NIH can do is the special study that has got nowhere it seems with Wallitt in charge.

I could go on but I think it is very easy to oversimplify the problem. As one can see from 5vforest's recent post 1425 in the science of craniocervical instability the situation in the US may be much worse in some respects. People are being recommended for life-altering surgery we have no reason to think they need.

 

One could unironically argue that the best healthcare system for ME is in countries that neglect treatment but do recognize ME and have a research program for it.

I'm not sure that such countries exist.

 

Sure, but if you are going to do that it is good not to spout about diseases quoting an 'ethicist' who provides bogus figures and does not really understand the issues (or the diseases). If you are going to say all these doctors are talking bullshit then in this are you need to do good background research - the way you do, David.

The problem with this sort of article is that it takes something that many readers would probably have accepted as a bona fide problem - people being ill for months after Covid - and casts it in the context of medical problems that doctors think are all in you head. So the reader has to decide whether they believe the journalist or conclude 'uh-oh, so LongCovid is probably one of those all in the head things if doctors think so (which we don't actually have formal evidence of). If the journalist quotes a world expert who turns out to be a philosopher nobody heard of then anyone with some connection to medicine is pretty likely to go for the uh-oh option.

I get what you are saying, David, but I think maybe you are being loyal where you need not be. You do this stuff brilliantly. You go beyond the catchy story and do your homework. You don't leave the average reader with a vague thought 'oh so LongCovid is something to do with all in the mind stuff maybe'.

 

Well, I can't exactly argue with what you say, and I don't disagree in particular with anyone's specific critiques of the story. If I were editing it, I would have had my own sets of questions and thoughts. But I think you understand my perspective a bit--as someone who has tried for years now to get mainstream editors to pay attention to these issues, with very little success. And to the extent these stories open the door and make more coverage of interest, that's good. For example, it makes my job easier in getting editors' attention. I've been getting some retrospective (retroactive??) respect from some colleagues in both journalism and public health who never really understood what I was doing with this project and why.

 

Yes, absolutely.

 

@alanlevinovitz going after Bret Weinstein on Twitter today. BW is one of the heroes of the “intellectual dark web” and BW was spouting-off some anti-vaccine/non-science based/contrarian nonsense re Covid. Glad that AL is doing this.