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

[SNT Gatchaman]

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)

 

[SNT Gatchaman]

This study of publicly available data was determined by the Duke University Health System Institutional Review Board to not require IRB approval, with protocol number Pro00110871. The collection and analysis of data complied with the terms and conditions of Reddit data. We made no attempt to identify users nor did we purposefully recover deleted information. Per Reddit’s privacy policy, informed consent was not required for this analysis of publicly available data: “By using the Services, you are directing us to share this information publicly and freely (11).”

One property shared by r/cfs and r/covidlonghaulers is that the users active on these forums are interested in discussing health, including stigmatized illness, on social media. Does this explain why the users on these forums overlap? To address this question, we curated a list of support forums for other suitable illnesses to determine if these were similarly enriched among cases compared to controls

We found that compared to other included support forums, r/cfs is a clear outlier in terms of enrichment among cases versus controls

Within the mutual support category, a commonly expressed sentiment was the hope among ME/CFS-identified users that as long COVID becomes better recognized, that ME/CFS too, in light of some similarities with long COVID, will finally receive the attention and respect it deserved.

The first major type of users on both forums are those with pre-existing ME/CFS symptoms whose symptoms relapsed or progressed after developing COVID-19.

The second major type of user active on both forums identifies with ME/CFS but not long COVID and are active on the long COVID forum to seek and offer support with patients suffering from a condition with some clinical and social similarities to their own.

The high rate of ME/CFS patients seeking mutual support on a long COVID forum speaks to the longsuffering experience of these patients not feeling heard or respected in some segments of society and the medical community.

 

[SNT Gatchaman]

The initial case definition was the set of Reddit users with at least one post (submission or comment) on r/covidlonghaulers by April 22, 2022 and at least one post to Reddit prior to 2020. The quantitative portion of the analysis made use of two control groups. The initial “COVID+” control group was the set of Reddit users with at least one available post on the subreddit r/COVID19positive and at least one post on Reddit prior to 2020 and who were not active on r/covidlonghaulers during the study period. A second “random” control group was a random sampling of Reddit users with at least one available post after 2020 and at least one before 2020. In all groups, subjects were excluded if flagged as suspected bots

 

[RedFox]

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.

 

[NelliePledge]

I guess it’s good to have it in a paper that pwME were motivated by altruism to support pwLC.

 

[Andy]

Encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Not a great start for the authors.

 

[InitialConditions]

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

 

[Solstice]

This went better than I expected after reading the title.

 

[Sid]

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

 

[SNT Gatchaman]

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)