https://www.tandfonline.com/doi/full/10.1080/21641846.2021.1922140 Leonard A. Jason, Mohammed F. Islam, Karl Conroy, Joseph Cotler, Chelsea Torres, Mady Johnson & Brianna Mabie Received 21 Apr 2021, Accepted 22 Apr 2021, Published online: 05 May 2021 Introduction Our objective was to determine which symptoms among long-hauler COVID-19 patients change over time, and how their symptoms compare to another chronic illness group. Methods 278 long-haulers completed two symptom questionnaires at one time point, with one recounting experiences during the first two weeks of their illness, an average of 21.7 weeks prior. We used a comparison group of 502 patients diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Participants completed a standardized symptom questionnaire and a list of additional CDC COVID-19 symptoms. Results Over time, the long-haulers reported an overall reduction of most symptoms including unrefreshing sleep and post-exertional malaise, but an intensification of neurocognitive symptoms. When compared to ME/CFS, the COVID-19 sample was initially more symptomatic for the immune and orthostatic domains but over time, the long-haulers evidenced significantly less severe symptoms than those with ME/CFS, except in the orthostatic domain. Among the COVID-19 long haulers, several neurocognitive symptoms got worse over time, whereas improvements occurred in most other areas. Conclusions These types of differential patterns of symptoms over time might contribute to helping better understand the pathophysiology of those reporting prolonged illness following COVID-19.
Without being able to read the full article, I believe this is evidence in support of the idea that long-haul is not me/cfs, only a subset of it may be. A good portion of longhaulers are reporting gradual improvement, even up to a year plus. This will produce a divergent narrative as well. In this study the average long-hauler was at 5 months post-infection. This is my concern with me/cfs research groups shifting resources to long-haulers, because they are very possibly more heterogenous than even our traditional me/cfs cohorts despite a singular causal feature. I wonder if Nath's remit at the NIH, a hard fought gain, is now completely to study anything and everything post-covid. Many cases of me/cfs don't even have that initial infectious feature. It may also be true that long-haulers report improvements as they come to term with their symptoms, if they are in the first period of their illness and the me/cfs controls have been sick for much longer. Here is the crazy thing, Jason has 500+ me/cfs controls, so I assume the data must be before covid.
My impression is that those ME groups, research or otherwise, who are looking to accommodate or investigate Long Covid patients are aware that not all, and possibly only a minority, will go on to develop ME. And I think that this period of time could be hugely valuable to pwME, as the potential is there to look at Long Covid patients early in their illness and find out how many, if any, do develop ME, and whether there is any difference that can be recorded between those who do and those who don't.
DePaul Newsroom Press Release: Study: 'Brain fog' persists among COVID-19 long-haulers quote: Comparing long-haul COVID-19 with another chronic illness could help researchers uncover root causes of long-term illness and inform their approach to care, Jason said. Many other symptoms of long-haul COVID-19 do appear to improve over time, which diverges from the experience of most with ME/CFS.
I don't understand this - people with long covid at 22 weeks fill out surveys of their symptoms at onset at and at 22 weeks. And it's found that, on average, there has been some improvement. Their experience is compared with people with ME/CFS - who, by definition have had their illness for 6 months, and mostly a lot more. This isn't a like for like comparison. Of course lots of the Long Covid people get better, as do most people with other post-viral syndromes. Given that part of the definition of ME/CFS is that you haven't got better in the first 6 months, surely you need to be comparing people who have been sick for the same lengths of time?
In addition to the points that Hutan makes above, I find this a disappointing description of PEM, especially coming from someone who has developed a tool defining PEM. "The most severe symptom for COVID-19 long-haulers and ME/CFS patients alike was post-exertional malaise, which includes feeling physically and mentally drained or heavy."
I agree. Having said that, studies do often show that patients self-report improvements from baseline, in the first few years. https://pubmed.ncbi.nlm.nih.gov/15699087/
That is exactly as expected. Also follows roughly the same curve as the mono study. So the conclusion is weird, it seems to consider PVFS and ME to be entirely distinct and unrelated, rather than a change in terminology past an arbitrary point. By definition ME is made up of those who did not recover past that point. I don't know if it's because there is so must thirst out there to keep them as fully separate entity, with ME being a distinct psychological thingy, and language has avoid any kind of lèse-majesté to this belief system, but that there is still complete confusion over the progression of recovery from infections at this point, a full year into Long Covid, is getting way past annoying. There has been zero progress for the whole year, no more clarity, no more understanding, the past still barely exists, as does all the evidence.
I've found an article about this study that gives a few more details (since we cannot read the full study). https://www.sciencealert.com/covid-long-haulers-are-experiencing-brain-fog-similar-to-me-cfs The interesting bits of information: "On the other hand, five symptoms got worse: trouble forming words, trouble focusing, absent-mindedness, sensitivity to alcohol, and loss of hair." (Btw, loss of hair seems to be quite common for them, at least I see a lot of people asking about this in the LC groups.) And this confirms our suspicions: "However, this initial comparison between ME/CFS and long COVID is somewhat limited. Most people in the ME/CFS group had been ill for over two years, while long haulers in the study had been experiencing persistent symptoms for only a few months."
I agree. It's a pity because he has a ready-made cohort of people who got ME/CFS following another infection (EBV). He could have compared changes over time in both groups.
I don't have access to the full paper, but the convenience samples that Leonard Jason has used have tended to be people who are ill, on average, many years with a low employment rate. I have taken part myself in some of the surveys (I am housebound for decades). It's not that surprising that such cohorts aren't improving.
