Acta Pædiatrica Editorial: Myalgic Encephalomyelitis (ME) in the Young. Time to Repent - by Ola D. Saugstad

Editorial in Acta Pædiatricia: Myalgic Encephalomyelitis (ME) in the Young. Time to Repent - Ola Didrik Saugstad

A reorientation of the understanding and attitude to ME patients occurs worldwide. ME patients, especially the worse cases, suffer enormously. Among them, the paediatric patients are most vulnerable, representing a special challenge due to the occurrence in the midst of somatic growth and emotional development. We are waiting for a biomarker of this disease, and some are in the pipeline. And even more, we are hoping for an effective treatment. Still, it is already now time for the medical profession as well as the whole society to repent, as these patients have previously often not been treated with the respect and care they need and deserve.

 

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Great article. Thanks for posting @Kalliope.

 

I hope we see more of that in the future. Even though this isn't "previously", it's presently and ongoing. Technically it's both but there has been so much confusion over the last few years (hell, decades even) that make it seem as if things have changed in any meaningful way. If only. It will be weird to eventually account for all of those, a promise of better things, always out of reach.

Good editorial. I hope it makes people see through the deliberate fog of confusion and start listening to the actual substance of what patients report, rather than the usual tone policing. It's so hard to make sense of things when the maximum confusion comes from those institutions in which trust is highest. But this message will continue to echo and take a life of its own.

I'm seeing an increase in references to the 2015 IOM report lately. It seems that its effects had a lag but are starting to grow on their own. Which makes the promised update all that more important, as it will only add to the evidence while removing more of the fiction that found its way in the non-fiction section.

One thing that is disappointing is that so far there has not been any such expression from anyone participating on the BPS side. I guess it's a career-ender but you would think that at least one person out of hundreds would feel a little remorse about taking part in this mindless charade, especially with all the cheating and obvious exaggeration of useless pseudoscience. Not entirely surprising, but very disappointing in the ability of medicine to show basic acknowledgement of its mistakes, still a long way to go to actually fix the system-wide failures that created and continue to enable it.

 

Saugstad was one of the people who wrote to Godlee about the Lightning process trial. http://www.virology.ws/2019/09/03/trial-by-error-calls-for-retraction-of-the-lp-study/

From what I can find online, he seems like a respected figure who has published important work in neonatology.

I found that he gave some talks for the Norwegian ME Association. Does anyone know more about him? Might he be someone interested in joining the forum?

 

Yes, he's been a wonderful voice for ME patients. His background is in neonatal care, but he's been involved with ME for decades and is one of few doctors who has visited many very severe ME patients in their homes in Norway. He has also been in several rounds in the media debating Wyller and others with a psychosocial approach as well as a strong voice against Lightning Process. He regards the situation for ME patients as a human rights issue.
He spoke at a MillionsMissing event both this year and last year and frequently gives talks about ME and research. He is part of the researcher team behind an ongoing genetic study at Oslo University Hospital, and at the advisory board at the Norwegian ME Association.. and I could go on

 

Myalgic Encephalomyelitis ‐ Time to repent, 2020, Speight

Paywall, https://onlinelibrary.wiley.com/doi/abs/10.1111/apa.15181
Sci hub, https://sci-hub.se/10.1111/apa.15181

 

This was very good. Thanks Nigel Speight!

Of even greater concern is when the paediatrician actually drives the proceedings. This is usually because he or she has been influenced by a new growth industry in UK paediatrics, which has resulted in a marked lowering of the threshold for considering a diagnosis of Munchausen Syndrome by Proxy (MSBP). As initially described, all paediatricians knew that MSBP was extremely rare. However, when the name was changed about 20 years ago (2) to Fabricated and Induced Illness (FII), there appears to have been a form of “mission creep”, whereby the diagnosis is considered in any mildly puzzling case, especially when the parents keep (understandably) asking for second opinions.

New terms have exacerbated these tendencies, such as “Medically Unexplained Symptoms” and “Perplexing Presentations”.