Thread by @AnilvanderZee

1) An interesting study, but an important limitation is the lack of data for post-exertional malaise and brain fog. The authors use the fact that these symptoms were not yet seen as related to Covid-19 at the beginning of the pandemic, and that this only became apparent at

https://twitter.com/EricTopol/status/1555320217827307520

2) a later stage, as an excuse that these symptoms were not included.

I thought this was an a bit of an odd statement. Both Tim Olde Hartman d Judith Rosmalen were members of the Dutch Health Council for "#MECFS" for 2 years, which was published in 2018. Post-exertional malaise

3) was added as a mandatory symptom for the diagnosis. Cognitive dysfunction as optional. For the ME Ramsay criteria, PEM has been a mandatory symptom since the '50s.

In addition, we know that in previous coronavirus outbreaks, people met the "CFS" criteria or had symptoms

4) that matched it. I consider not adding PEM and brainfog from the start of the pandemic therefore as an important missed opportunity.

lnkd.in/dC-CM58K

Unfortunately, it is not entirely surprising since there was little to no attention for PEM from MUS/PPS science dep.

5) Both scientists are also proponents of CBT for "#CFS" where little or no consideration was been given to PEM.

Here at the Grip on Complaints project where Professor Judith Rosmalen was project leader of, a description of "#CFS" was given & indicated that it is also called ME

6) without mentioning PEM. In 2018, this was still online a few months after the publication of the Dutch Health Council.

drive.google.com/file/d/1dBhpaX…

It is also suggested in this "informational video" that you could cure #longEBV with CBT (with a graded activity component). This

7) was at a time where the CDC had already removed its recommendations for CBT and GET from their website because of the lack of evidence & that because of the PEM it could make patients more ill. The Dutch Health Council was also much more reserved with their conclusions about

8)CBT. That paradigm shift has continued with the Belgian Superior Health Council & NICE guidelines who have also downgraded their recommendations for this form of CBT.
drive.google.com/file/d/10ScUks…

So clearly PEM was not taken into account for a long time. It is a pity to see

9) this partly reflected in this study. It is of course commendable that they mention it at all. Despite the fact that this study is interesting, I think they've missed an important opportunity to give us a clearer understanding of these symptoms in relation to #longCOVID and

10) other post-acute infectious diseases. Even if the questionnaire was initially designed for the acute illness, PEM and brainfog should've definitely have been included from the get go…