If there was a study to follow ex-COVID-19 patients what would we want to see recorded?

I note that there is this thread already kind of on this topic, Possibility of ME or PVFS after COVID-19, so I may well be duplicating a lot of discussion there, but I thought it would be worth having a thread to discuss this specific subject as there is already discussion in the wider world taking place for such post-COVID-19 studies.

To clarify, I don't think the plans are for ME specific studies (i.e. only looking for ME cases after COVID-19) but if they were, what would be the most useful information to be recorded?

The first thing that comes to my mind is activity pre- and post-COVID-19, to see if those people who go on to develop ME actually conform to the deconditioned idea or not. Potentially this might show that those less active actually are less likely to develop ME as they don't over-exert themselves as much, although there are a lot of possible confounding factors that could be involved.

Post any other ideas that you might have below.

 

I'd be interested to see when the viral symptoms disappear and if they keep coming back and under what circumstances. Then tests to see what is happening with their immune system. Is it exertion that leads to viral symptoms coming back and does rest lead to better outcomes.

My experience after a clear acute viral onset was that the initial symptoms kept coming back.

 

Of the people who might develop post covid ME -

Monitoring the difference between those who have a sudden vs more gradual onset. Is there a difference in symptoms and severity and if so why?

Identifying any shared symptom characteristics - so does the same infectious agent cause the same symptom profile in people without co morbidities (as co morbidities may affect symptom profile).

 

I'd like to see the makers of apps that are trying to track Covid-19 make good provision for recording non-typical new symptoms, and encourage people to keep on recording in detail until they are fully back to normal. That would pick up people who recover very slowly, and those who survive it but don't recover fully at all. It would be a self-selected group, of course, but there's still potentially information to be gleaned about the proportion who develop long-term consequences and an indication of what those are.

There's also a potential opportunity for people who're still reporting symptoms after, say, 12 weeks, to be approached for a more specialised data collection study.

 

How many of the severe cases develop post intensive care syndrome (= long term cognitive, physical and mental impairment).

And how to separate that from ME using clear criteria (PENE as the main symptom)

 

If it's for a long term follow up type study I'd like them to ask questions about cognitive functioning. They could ask people initially how much they read (for example) and to estimate their reading speed.

The testing needs to be different from the usual cognitive testing they do for say Alzheimer's. But I'm not at all clear what those tests would look like.

 

At what point do clinicians/patients realize people are describing PEM in at least some of those who do not fully recover? I am interested in this to see how language usage changes over time.

 

2 things I'd prioritize:

1. What explains the huge discrepancy in symptoms? Why do some people have no symptoms at all? What are the factors causing most of those symptoms? This is obviously more about basic research but we need a lot of that.
2. People who were healthy controls in ME studies but contracted COVID and did or did not develop symptoms: run them through the tests again and check if something changed. What is different between those who did and those who did not develop chronic symptoms or what temporary symptoms, especially neurological, did they experience?

 

There are a number of studies underway trying to use consumer wearables to predict onset of covid19 early. Can they be convinced to extend their studies to include predicting recovery, or failure thereof, too?

It should be easy for them to look at activity patterns before, during and after infection. Establishing if more rest provides some protection against PVFS and/or ME is an important question to answer, especially in combination with infection severity (mild-rest, mild-active, severe-rest, severe-(more)active).

Other links could also be looked at, e.g. does the degree to which sleep, respiratory rates and temperature (fever) are affected predict recovery?

Oura is giving 2000 of their rings to healthcare workers for the purpose. That could be interesting given how exposed health workers are to the virus.

https://www.statnews.com/2020/03/26/wearables-health-workers-coronavirus/

 

Dr Charles Shepherd said a day or two ago

I asked when were the severely affected who’ve been waiting decades for assistance going to be on the research agenda.

 

Last days there’s been a couple of warnings from ICU informing that some patients probably will experience long term consequences of covid-19. It addresses the need to study this more closely, and also the need of suitable rehabilitation for these patients. These concerns are especially connected to damaged lungs, as seen in SARS, MERS and now from patients out of Wuhan (3 months). Ok, I think many are familiar with this, and guess studying of damaged lungs in general will gain general important knowledge.

But If I had all resources in the world and were to design the perfect study in relation to
possible development of ME, I would monitor activity in a broad sense, like steps, “training”, cognitive work and all other relevant aspects. Then you would do regular examinations on a x? month basis. For how long? Ideally a long follow-up study for several years.

The aim would be to collect data, that in the end could tell something significant between a push-on approach among the ones “healthier” 3 months after the infection and the “sicker” patients, needing something close to a “total rest” approach for some time, and then slowly and gradually pacing themselves forward.

It would be of great value if such data could validate what many of us find reasonable and a valid hypothesis, - that it is essential for long-run prognosis to be careful in the initial phase. Unfortunately this seems to be something close to a death sin in many physicians competitive mind-set. It doesn't matter at all that patients know it by personal experience in numbers, when the only thing convincing in a culture obsessed with EBM to a extent close to vulgarism, is data. We need data! We need data to secure that patients in the future will have the best possible run when contacting medicine for advice, subsequently the best possible chance of getting better/recovered.

The midst and aftermath of covid-19 gives a perfect opportunity for solid research. Hopefully resources will be found? If so, it will hopefully also be of good for ME-patients.

 

I don't imagine anyone would want to volunteer for this for the sake of a study, but, were it possible to do spinal fluid studies on recovering patients, it might be interesting to see if any have mildly elevated protein levels and if that increases the odds of developing post-viral fatigue or ME/CFS. I know of at least one study where some* of the CFS patients had mildly elevated CSF protein, and none of the controls did.

[*actually about 1/4 of the patients.]


ETA: Another paper that found elevated protein levels (or cells) in about 30% of patients tested.

 

Still thinking aloud on the question of predicting recovery from covid-19.

1) We still don't know whether prolonged post-viral fatigue and ME are the same thing or not. They sure look similar as far as symptoms go but is the underlying pathology really the same? Is PVF an early form of ME or something different? Are PVF patients the ones who recover and the ME patients the ones who don't? So many questions, so few answers.

2) There've been a couple of cytokine studies hinting at differences between pwME with long and short illness duration. This was interpreted as different stages of the same illness (ME). But what if PVF is a different condition from ME? And the short duration cohort included a lot of PVF patients? And that that is the reason for the often contradictory cytokine results?

3) If PVF and ME are different things, both able to be triggered by a viral infection, could it be that some people 'only' have PVF - and eventually recover? That others have 'only' ME - and their illness remains much the same or gets worse? And that some have both for starters - and their (double) illness improves from severe to moderate when their PVF resolves but they still have ME? (More permutations could be possible.)

To test those ideas, a large number of covid-19 patients would have to have their cytokines tracked over several years. Do people who recover quickly, who recover within 3 years, and who haven't recovered even after 3 years have different cytokine profiles? Do these profiles match the ones found in the ME studies?

For that matter - but not covid-19 related - could the short-duration patients from those ME studies be recontacted to see if any recovered and if that recovery could have been predicted from their cytokine profile?

 

@Andy Are you in contact with Mike Snyder? He would be an obvious candidate to set up something involving wearables to track both covid-19 infection and recovery - or descent into ME - as discussed in several posts above.

 

Son in Law's Mum is in the Twin Studies group (Hmm, what relationship is she to me?!), so she asked people to join up to this on FB. OH and myself both doing it, and I sent it to the rest of the family on WhatsApp yesterday. Once you're signed up it only takes about a minute a day (if that long!) to fill it in. They are keen to get as many people as poss to sign up, even us oldies are useful to them.

 

No, I'm not, unfortunately.

 

Stanford announced his wearable study a few weeks ago (Note this is a list of all COVID-19 projects at Stanford - it is very impressive).
https://med.stanford.edu/covid19/research.html

Here is a recent tweet from Snyder about the study
https://twitter.com/user/status/1245911669202509825


He is also doing two other studies, one of which is a multi-omics study on COVID-19 patients, I assume much like they are trying to do for ME.