Open John Hopkins Long Covid Study (Survey; Open Worldwide)

I'm having trouble getting onto the survey site. The 'I'm not a robot' keeps throwing me out and the alternative isn't liking me either.
Will try again tomorrow......but if it's the site that has problems, please let me know.
 
I had no problems accessing the survey after completing the "I am not a robot" phase. Took me slightly longer than 30 mins.

Unfortunately, the survey is very bland. As such I don't expect it to be able to pick up anything of relevance. Better surveys had already been conducted by other organisations more than 3 years ago. It seems to be rather focused on psychiatric symptoms whilst neurocognitve symptoms or PEM receive little or no recognition at all. Similary exhaustion and fatigue seem to be automatically attributed to a lack of sleep, whilst the role of reinfection is not studied at all.

Still makes sense to participate for me simply because I hope John Hopkins receives a lot of responses and that could be fruitful sign.
 
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Yeah. I made sure to complain about the fact the survey felt like it was desgined for people who were just mildly disabled from Long Covid ie. having questions assuming I could still do some types of exertion.

I also made sure to complain about the fact PEM was not included. But I think it’s these kind of responses from us that might make the authors realise what they missed out on and mention it in the study:keep it in mind for next time around.
 
I'm having major problems getting onto the survey. After multiple attempts I seemed to have satisfied visual challenge but I never reached the survey. Will try a hard reset and then retry the survey when able.
 
I just completed the follow up and was a little disappointed.

Again, 0 mentions of PEM, (although for symptoms that “come and go” they did have “overexertion” as a possible cause you could tick) and a big focus on psychiatry.

The survey didn’t feel very disability informed, as someone with severe ME, many of the multiple choice questions didn’t have a suitable answer. Additionally many questions were made with the presumption I still had a somewhat “normal” life.

Then there was the depression questionnaire, which will obviously flag a lot of false positives, all you need to do is be a little sad about being disabled, and have normal Long COVID symptoms, like insomnia and lack of energy, for it to flag you up. Does anyone know if there is a depression questionnaire that takes into account ME/LC type presentations? It not, that would be a useful paper.

Then there was a sort of personality type survey which felt somewhat insulting. It seemed to be trying to test if Long COVID was something people who can’t deal with challenges and immediately give up, get. With questions like the following:
upload_2024-11-22_12-44-16.jpeg
This kind of personality questionaire would only work in a pre-infection longitudinal study, as becoming disabled will obviously impact your personality, and make you realise how your body might not be unstoppable after all.

Anyways, I think I’ll send them an email linking to this thread. Hopefully they’ll consider this when they analyse the results, and maybe even be willing to discuss with us :). (If you’re reading this, sorry we tend to focus on criticisms but we also really appreciate you studying our disease).
 
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"It is hard for me to snap back when something bad happens" is such a ludicrously badly worded question. It's hard to understand how professionals can be so bad at this stuff, especially when most random amateurs would not produce anything this ridiculous. For all the discussion over how so much garbage makes it to, and through, peer review, there is an even greater mass of complete garage that never gets vetted by anyone and infects everything. And that doesn't even consider all the stuff put out by clinics, in what is obviously no more than 15 minutes of minimal effort.
 
I got a reply from someone working on the study.

The depression questionnaire is the Patient Health Questionnaire-8 (PHQ-8) Which is has already been critiqued as ill-fitted for Long COVID and ME, and has been used in other problematic studies like:
* Depressive and anxiety symptoms in current, previous, and no history of ME/CFS: NHIS 2022 analysis 2024 Sirotiak et al
* Development of a Definition of Postacute Sequelae of SARS-CoV-2 Infection, 2023, Thaweethai et al.
* Psychological Distress, Persistent Physical Symptoms, and Perceived Recovery After COVID-19 Illness, 2021, Liyanage-Don et al

The personality type questionnaire that led to some problematic sounding questions is the Brief Resilience Scale (BRS).
2-Figure1-1.png


According to it’s creators “The BRS is a 6-item scale designed to measure resilience in its original meaning – as the ability to bounce back from stress.” I have concerns the results from this scale, will be used to claim LC patients have a mental illness since they are less resilient to stress, even though physical illness decreases resilience to stress too.

I was happy that the person working on the study said “Because we are using a cohort study design, we are not able to make claims about causation, only correlation.” I really hope these limitations are well acknowledged in the published paper(s) resulting from this survey.

I was also pleased to hear the survey includes pre-infection longitudinal data, which might lead to some interesting findings.
 
Asking about bouncing back from stress without specifying what sort of stress is ridiculous. The stress I think of could range from dropping a bowl of soup on the floor and having to use energy I don't have clearing it up, to someone close to me dying. The answers would be very different, and say nothing about my ME/CFS.

I find such questionnaires insulting and intrusive.
 
It looks like they’ve taken some of my concerns about the last follow up seriously. I just did this followup and there were no mental health surveys but they added the DSQ to screen for PEM (after I badgered them about not mentioning PEM at all).
The DSQ has a million problems but I’ll take it as a win that PEM is now on the team’s radar.

The survey still felt rather poorly designed as someone who is severe disabled though. Like there’s very little that assessed disability mostly just symptoms. And what does assess disability is mostly very vague, ie.
upload_2025-5-21_19-27-44.png
Click to expand...

I don’t have energy to email them again but I hope they add FUNCAP to the next followup.
 
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