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Plan to post the following comment under the article. Feedback is appreciated. The results of this randomized trial are presented rather misleadingly. The authors (Gotaas et al.) have designed a new form of treatment for patients with ME/CFS which they call “interpersonal oriented cognitive...

Saugstad's response is disappointing as well.

Some highly problematic statements from Signe Agnes Flottrop: The study she discusses had a waiting list control group, was not blinded, and used subjective outcomes.

Thought this was interesting (from the google translation of the article):

Interesting article, thanks for posting. I was a bit surprised to see how (in)effective antidepressants are in this overview in figure 1

The 1994 paper by Altman that the authors refer to is also worth a read. it starts: Van Calster and colleagues comment on this paper, saying it "could have been written today, without changing a single word."

This seems to be the main result: Figure 2. (a) The Chalder Fatigue Scale (CFQ) and the (b) SF-36 physical functioning of all patients receiving 12 months of treatment before (pre) during (months 3-12) and 3 months after the treatment (month 15) is shown. The results do not look that...

I also would like to share my thoughts on the new announcements. First of all: I appreciate Hilda Bastian’s efforts to set this up and lead the independent advisory group as it probably a difficult position to be in. I think involving ME/CFS stakeholders and clinicians is a good idea that will...

I thought that in the cases of a well-adapted chronic infection the illness is significantly less severe than ME/CFS. And in cases where it gets as severe as ME/CFS it is usually a process that causes visible damage or makes patients progressively worse over time. EDIT: so the fact that ME/CFS...

For me, a characteristic feature of ME/CFS is that it can keep patients tremendously ill for decades without showing abnormalities in standard medical testing and, in many cases, without making patients progressively worse over time or causing some form of detectable degeneration in the brain...

Don't know. Would be useful if others could give some examples of illnesses caused by chronic viral infections. I keep thinking of STI's and hepatitis. Are there chronic illnesses caused by chronic viral infections that look like ME/CFS?

Sorry to hear that. I had the impression that those who get progressively worse form a subgroup and not the majority but it is difficult to say because we have little good data on prognosis.

Are there any good examples of chronic illnesses caused by chronic viral infections? I can only think of AIDS where patients eventually become sicker and sicker until they die (in case of no treatment). Although there are exceptions, for the majority of ME/CFS patients it doesn't seem the...

As usual, I received support from S4ME members who provided feedback and fact-checked before I submitted the comment. Many thanks, really appreciate the help!

I also submitted a letter to the editor. The submitted version is available here: https://www.researchgate.net/publication/351934191_A_high_drop-out_rate_of_cognitive_behavioural_therapy_for_chronic_fatigue_-_a_comment_on_Adamson_et_al I had hoped that by focusing on specific questions, the...

We have written a short blog post about the long-term follow-up findings of the GETSET trial and its implications. After years of waiting, the long-term follow-up results of the GETSET study have finally been published. The control group that received no intervention did just as well as the...

There was a big Q-fever outbreak in the Netherlands and a Giardiasis outbreak in Norway which were investigated. In both cases there was an increased incidence of ME/CFS or ME/CFS-like symptoms.

There are some additional references in the 2018 S4ME thread: https://www.s4me.info/threads/who-said-80-of-me-is-post-infectious.7320/#post-130742

Not really a large or representative sample, but I think the paper by Chu includes some data and a discussion on this: Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - PubMed (nih.gov)

It would be interesting to have feedback from other patient communities. If you know anyone in other patient communities feel free to ask them their view or opinion. We try to read up on each illness that we write about but it's soo much material that we probably cannot grasp all the complexities.