Predictors of chronic fatigue in adolescents six months after acute Epstein-Barr virus infection: a prospective cohort study,2018,Pedersen et al

I've put this in Research Unrelated to ME/CFS for the time being as the authors seem to do lot of flip-flopping between Chronic Fatigue and Chronic Fatigue Syndrome, it could be that it should be in Psychosocial Research.

Open access at https://www.sciencedirect.com/science/article/pii/S0889159118306251?via=ihub

 

Prof. Wyller as principal investigator with his BPS approach is usually a red flag. He is currently doing a trial on music therapy as treatment for CFS and wants to research Lightning Process as treatment as well. But he is highly respected within the establishment and has a lot of influence, particularly when it comes to children/adolescents and ME.

 

A couple of interesting bits

 

Can someone explain why the Chalder Fatigue scale is synonymous with any study of this type?
Does it have relevance?

 

Yeah, they give the impression throughout the study that their results also apply to ME/CFS, because results for this subgroup were similar. Only at the end is it noted that:

"As relatively few individuals in the EBV infected group adhered to case definitions of CFS at 6 months follow-up, a multiple logistic regression analysis featuring CFS caseness as dependent variable was not statistically feasible." ​

Also important to take into account:

"the final multiple regression models only explained about one third of the variance in six months fatigue, suggesting that non-charted variables – ranging from genetic markers to family dynamics – might have important impact, and calling for cautious interpretation of the results."
​

 

A big newspaper, Aftenposten, has an article today about this study.

Aftenposten: 22 unge med kyssesyke er fulgt tett: De som er sårbare, får oftere ME
(200 adolescents with mononucleosis have been followed closely: Those who are vulnerable, more often develop ME

The article is paywalled, so here's a translation of parts of the article.

After the researchers had followed 200 patients over 6 months, they found that nearly half, 91 of the adolescents, were particularly tired.
27 fulfilled the formal criteria for ME/CFS (Fukuda and Canadian criteria)
De other 67 were suffering from fatigue and other symptoms, but did not fulfil the formal criteria for a diagnosis

The participants were tested for over 140 factors for vulnerability. They were asked about biological, psychological and social circumstances which might explain why some develop long term fatigue or ME.

- We found that symptoms of anxiety were twice as strong with those patients that developed most fatigue six months later, compared with those who were least fatigued. Those who were most fatigued, reported twice as much pain at the start of the infection, compared with those least fatigued, according to Wyller.

When it comes to vulnerability, Wyller means anything from how the immune system and hormone system reacts, to the patient's thoughts and feelings.

- Genetic dispositions and sad or harrowing experiences earlier in life are also possible factors of vulnerability. There are reasons to believe that also genes play a role for who develops fatigue/ME after mononucleosis.

Professor Kristian Sommerfelt says the study is thorough, but an explorative study. It doesn't prove in itself reasons for different degrees of fatigue after mononucleosis. He has some objections to the study, amongst other that everything that got registered happened after the patients had gotten sick.

- An important finding is that the degree of the infection, the mononucleosis, seems to have very little to say regarding who later develops fatigue or gets ME. What's important, is how bothered you feel. Worrying and how much worried you are, may play a role. Long term fatigue and ME is not only about the body, or only about "the soul", but a union where both thoughts, feelings and the immune system - and probably also several other factors we still don't know about - play a role, Wyller concludes. He strongly oppose the categorisation of ME as either psychiatric or bodily. - This kind of separation is old fashioned and should not be used. ME is a complex condition - both psychiatric and bodily. Our study confirms this, Wyller says.

Professor Kristian Sommerfelt says - There are a lot we don't understand here. A measurement of worry at illness debut had connection with fatigue six months later. The authors of the study interpreted this as worrying can increase fatigue later. Another and just as reasonable explanation is that those with more explicit illness were more worried because they were more ill, and thus more fatigued. He emphasises that the study discusses levels of fatigue after mononucleosis, not prevalence of ME, who were only 27 of the 91 with fatigue.

 

The article also tells the story of a young man who got mononucleosis when he was 18, was diagnosed with ME and recovered after a year of illness with Lightning Process. He believes one of the reasons he got fatigued after the illness, is that he is particularly sensitive. He believes a lot who gets severe fatigue are Highly Sensitive Persons.

 

What bullsh*t. Thank you for reporting @Kalliope

 

The main authour, Maria Pedersen, would be the same Maria Pedersen from this thread, defending her thesis today - february 28.

"defending the thesis Chronic “Chronic Fatigue and Chronic Fatigue Syndrome Following acute Epstein-Barr Virus Infection in Adolescents”"

https://www.s4me.info/threads/public-defence-maria-pedersen-–-pediatrics-norway-feb-28-2019.8273/#post-145794

 

I wonder how she'll fare against a probing critical thinker like Chalder.

 

How long until we see a trial on exorcism? I'm almost surprised no one tried that yet.

 

So the authors have recognized this possiblity but prefer to emphasise

If pain severity, functional impairment and negative emotions (anxiety) are all correlated with poorer outcome then it seems plausible that it is severity of the acute phase that is the predictor and anxiety just correlates with being more severe, which sounds like a natural response.

 

Looks like he's another of the Recovery Norge anecdotes Vogt has been collecting to try to manipulate media coverage with:



edit: I just googled his name and this came up - is this a coaching company?

https://www.purehelp.no/m/company/details/me-cfccoachingphilipgudimstroem/919542071

 

Yes, that's a coaching company. Good detective work, @Esther12 ! The article mentioned he wanted to "help" other ME-patients.

 

It's also worth noting that Dr. Ramsay listed "emotional lability" (mood swings) as a feature of ME.

Emotional lability is also a symptom listed in the Canadian Consensus Criteria.

The International Consensus Primer says:

I'm somewhat embarrassed to say that this happened to me in my early 20's when I was hospitalized for tests about a month after onset. When the doctor arrived, I started to cry (which was totally out of character for me). When he asked why I was crying, I just put up my hands, indicating "I have no idea." The flip side was later feeling extraordinarily amused (practically "giddy") while watching comic monologues on late night talks shows. I was totally aware that my reaction was oddly intense and out of proportion, but I couldn't explain it.

I suspect that some kind of inflammation had affected my limbic system (my doctor suspected a kind of mild encephalitis from the severe infection that apparently triggered my onset). For me, this was only a feature of the first month or so following onset. The crying episode was a singular event.

 

Sort of feels as if his desire to make money from other patients should have been reported.

 

it doesn't seem that more has been done with the company besides registering it. but he seems to be part of the "patient" organisation Recovery Norge (for patients who has recovered from ME by their own efforts) and quite a few of the members have financial interests/spouses with financial interest in Lightning Process. Fishy.

 

Ditto. I had uncontrollable weeping episodes right at the beginning, but these quickly passed.

 

Do viral load and other blood work they did actually indicate the severity of infectous mononucleosis?

Did they document how long the patients suffered from acute IM?

I have no idea but I guess that documenting high temperature, measuring the number and size of swollen lymph nodes and the size of spleen and liver repeatedly over time would assess the severity of the acute illness and delay in recovering better than e.g. viral load?

(I remember that I still had a slightly enlarged spleen and liver a couple of months after my blood work showed no signs of an active infection anymore.)

(Edited to add second quote.)