NYT Article Long Covid Sufferers Are Struggling With Exercise

‘I Had Never Felt Worse’: Long Covid Sufferers Are Struggling With Exercise https://nyti.ms/3BgFF0E

Excerpt :

"As one of the many Americans suffering from long Covid, a condition characterized by new or lingering symptoms that can be felt for months after a coronavirus infection, Ms. Hollabaugh is not alone in experiencing setbacks with exercise. Natalie Lambert, a biostatistician and health data scientist at the Indiana University School of Medicine, has collected self-reported data from more than a million long Covid patients through a collaboration with Survivor Corps, a Facebook support group for Covid survivors. Patients frequently report that their doctors have advised them to exercise, she said — but many say that when they do, they feel worse afterward."
...
" In one small study published in January, for example, Dr. Systrom and his colleagues compared 10 long Covid patients who had trouble exercising with 10 people who had never tested positive for Covid-19, but who had unexplained shortness of breath after exercise. The researchers found that nobody in the study had abnormal chest CT scans, anemia or problems with lung or heart function, suggesting that organ injury wasn’t to blame for their symptoms. Yet when the long Covid patients exercised on a stationary bicycle, Dr. Systrom found that some veins and arteries were not working properly, preventing oxygen from being delivered efficiently to their muscles."

 

Edit: I'm brain fogged and forgot to comment.

I'd like to see if they use objective measurements to determine if it is time for patients to exercise.

 

Lot of MECFS folks commenting on this article including Cort. Don’t like how the NYT constantly uses verbiage like Long Covid is “strikingly similar” to ME/CFS but never says that in fact many/most LC patients have MECFS because they meet the diagnostic criteria.

 

https://twitter.com/user/status/1492500854120800256

 

Merged thread

https://www.nytimes.com/2022/02/12/well/move/long-covid-exercise.html

 

Above is taken from the NYT article. Does anyone know which ‘proper treatment and medications Systrom may be referring to?

 

I wondered about that too. My cynical thought was that anti-depressants and possibly CBT would probably end up being considered to be part of the "proper treatment and medications".

 

I think Systrom is interested in Mestinon and similar drugs. The general idea seems to be to first get the blood vessels and heart to behave better with medication and only then see if that makes you more exercise tolerant. IIRC there were some promising anecdotal reports followed by some preliminary or pilot(?) study results that were much more modest and since then things have been pretty quiet. Suspect that any positive effects would diminish even further in a decent sized trial as that seems to be the way things usually go. Would love to be wrong but not holding my breath.

 

I got "pay-walled" before I could read much of the article. It would be interesting to know if they discussed PEM, particularly delayed PEM. I believe they mentioned that "exercise made some patients worse," but I didn't see anything on when patients felt worse. Dr. Komaroff has said in the past that delayed PEM is something he has seen in no other illness (including major depression) than ME/CFS.

 

It mentions PEM but mentions it as a common long covid symptom and only later starts talking about ME/CFS as something similar. It doesn't mention that it is originally an ME/CFS symptom.

The article also talks about exercise intolerance in general (POTS, some people are too weak to exercise etc). It mentions that people can feel worse and suffer relapses after exertion but doesn't say how long afterwards.

So I think the article in general is good but I'm also not really satisfied with the fact that PEM is not properly explained. If I were just a typical reader without such health issues I would probably think this is general exercise intolerance.

 

Some links to Dr Systrom's work in the following threads including interviews:

https://www.s4me.info/threads/persi...rcise-testing-2021-singh-systrom-et-al.21821/

https://www.s4me.info/threads/event...-5th-2020-david-systrom-md.14987/#post-258393

https://www.s4me.info/threads/webin...nal-tuesday-jan-16-7-8pm-est.1917/#post-38064

 

Thank you. So do you think Systrom possibly over estimates the helpfulness of the medication he refers to in the NYT article? If I read that article without experiencing ME or long covid I would read it there are effective medications available which is not the case sadly.

 

I would take Systrom's research more seriously if he took a genuinely critical approach to the problem and didn't muddy the waters like this. There are no medications, so nobody should be hinting that there might be and that people might do well to pay to see doctors that might try them.

And why raise the issue of exercise at all? There is no evidence for exercise being useful in this context. Period. If people have got well enough to do exercise let them do what they want. There is no need for any programme. I see this again and again with physicians with an interest in exercise. Just like the physios they cannot stop themselves from recommending it at some point.

We need honesty in this game. Not marketing.

 

With general news articles like this, I try to focus on what I think are the main takeaways readers will get and whether they're ok. In this case, they are: 1) Exercise can be a big problem for long covid patients, and 2) There's an actual thing called PEM with some scientific data to back it up.

The rest is pretty much detail and nuance that the average reader will not absorb--like how exactly PEM is or should be defined, the exact relationship to CFS or ME or whichever, and so on. Not that those aren't important issues! Of course they are, and it would be great if every article were perfect. And frank inaccuracies should be corrected. But in general, this article puts out there in a high-profile venue that people should not buy the knee-jerk notion that "exercise is always good and more is always better" and that long covid patients need exercise because they're deconditioned. So that's a good thing.

 

If anyone ever gets offered Mestinon they should read up about it. I wouldn't like taking this : https://www.drugs.com/mtm/mestinon.html

I would love to know what happens to people if they take it while suffering from a bladder or bowel obstruction. I'm assuming that if the body can't excrete the drug then things get very nasty.

 

I agree with the @dave30th take here. This article is much more nuanced than the ones by Pam Belluck. Author seems much more interested in getting facts right. I think that she also gets that Long Covid with MECFS symptoms is MECFS, and not a “strikingly similar” novel disease. Plus she also follows Dave Tuller on Twitter—imagine that.

 

I don't know what Systrom thinks or knows. I'm not aware of any solid published data (check the threads @Ebb Tide linked above). It's possible Systrom has new unpublished data giving him confidence in making such pronouncements though even then he should express himself much more carefully, given their preliminary nature in such a case. Of course it's also possible he did in fact express himself much more carefully but that this didn't come through in the reporting.

Whatever the case, I agree the phrasing is unfortunate because desperate patients will cling to such pronouncements and exhaust and stress themselves chasing some treatment that isn't really available to them.

Overall it's not a bad article though.

 

Thanks Ravn. I agree with your points.

 

All good points but I did feel Systrom saying at the end there are medications available which then allows the person to exercise as, as Jonathan says, muddying the waters, as there are no accepted medications available. However, I take on board I will do a close reading when those not with our illnesses will probably just skim read. I just don’t want well people to think there is a readily available and effective treatment out there when this is not the case and we need support for more research funding so effective medical treatments may eventually be developed.