Pre-pandemic activity on an ME/CFS support forum is highly associated with later activity on a long COVID support forum ..., 2023, Meyerson, Hoyle

Pre-pandemic activity on a myalgic encephalomyelitis/chronic fatigue syndrome support forum is highly associated with later activity on a long COVID support forum for a variety of reasons: a mixed methods study.
William U Meyerson; Rick H Hoyle

Encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID share some clinical and social characteristics. We predicted that this would lead to an increased interaction between pre-pandemic members of a ME/CFS online support community and a long COVID community.

We performed a mixed-methods retrospective observational study of the Reddit activity of 7,544 users active on Reddit's long COVID forum. From among 1600 forums, pre-pandemic activity specifically on a ME/CFS forum is the top predictor of later participation on the long COVID forum versus an acute COVID support forum. In the qualitative portion, motives for this co-participation included seeking mutual support and dual identification with both conditions. Some of this effect may be explained by pre-existing ME/CFS possibly being a risk factor for long COVID and/or SARS-CoV-2 infection being a cause of ME/CFS relapse.

The high rate of ME/CFS patients seeking mutual support on a long COVID forum speaks to the long-suffering experience of these patients not feeling heard or respected, and the hope of some ME/CFS patients to gain legitimacy through the public's growing recognition of long COVID.

Link | PDF (Preprint: MedRxiv)

 

When I saw this, I was worried it would be a psychosomatic study making some disgusting claim like, "People with ME think they have long Covid because they're constantly worried about their health and think they're sick" but I was pleasantly surprised.

This study hits on all the major aspects of why someone with pre-pandemic ME would be active in long hauler subs: Hoping long Covid research will make people view ME/CFS as a legitimate disease, hoping a treatment for LC will work for ME, and sharing/getting advice for overlapping symptoms.

 

Not a great start for the authors.

 

I would not like to do data analysis of those reddit subforums. /cfs is a bit of a mess.

 

This went better than I expected after reading the title.

 

I was dreading what this would be about after reading the title but then it turned out to be a surprise.

 

Now published as Pre-pandemic activity on a myalgic encephalomyelitis/chronic fatigue syndrome support forum is highly associated with later activity on a long COVID support forum for a variety of reasons: A mixed methods study (2023, PLOS ONE)