[...] online patient education program for children and young people with ME/CFS and their parents within the BAYNET FOR MECFS Study, 2025, Keicher+

forestglip

forestglip

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Evaluation of an online patient education program for children and young people with ME/CFS and their parents within the BAYNET FOR MECFS Study

Franca Keicher 1 , Julia Thomann 2 , Jana Erlenwein 2 , Mara Schottdorf 2 , Karolina Wiejaczka 1 , Nils Lennart Reiter 3 4 , Nadine Scholz-Schwärzler 5 , Barbara Vogel 6 , Silvia Stojanov 5 , Silvia Augustin 5 , Milica Saramandic 5 , Kristina Dettmer 7 , Stephanie Englbrecht 8 , Robert Jaeschke 9 , Linda Schanz 2 , Veronika Dodel 10 , Charlotte Zipper 10 , Nicole Schieweck 10 , Gundula Ernst 11 , Uta Behrends 5 , Juliane Spiegler 10

Background:
ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) poses challenges for affected children and young people (CYP) and their parents. There is often a lack of knowledge about the illness. Education programs can help address this by providing knowledge and supporting the independent management of the condition. For this reason, two online education programs - one for affected CYP and one for their parents - were developed, implemented, and evaluated in terms of acceptance, format, and benefits.

Methods:
24 CYP aged of up to 20 years with ME/CFS and their parents were recruited for this study. Of these 22 CYP with ME/CFS and 20 parents participated in the online education program. After development and conduction of the programs, six affected CYP were interviewed using written questions, which were answered via an audio device. Furthermore, 6 semi-structured interviews were obtained with parents. All parents also received an online questionnaire to evaluate the program. Data were analyzed using both quantitative and qualitative methods.

Results:
Both CYP and their parents expressed overall satisfaction with the program highlighting aspects such as knowledge acquisition or reinforcement and, importantly, the opportunity to connect with other affected CYP or their parents. The online format was also perceived very positively.

Discussion:
The online education program met the expectations and needs of both affected CYP and parents regarding content and format. It facilitated exchange and provided practical knowledge. In this format, the online program appears to be a valuable component of care for those affected.

Web | PubMed | PDF | Neuropediatrics | Open Access
 
This is the programme:

It was developed by physicians, psychologists, physios and OTs. All of the people you would not want to be involved. Two patient associations were also involved: Parent Initiative for Children and Adolescents with ME/CFS Munich e.V., Munich, Germany and German Association for ME/CFS e. V., Hamburg, Germany.

There were 12 sessions of 45 minutes each. I think that tells you enough about the programme - it has to have been filled with lots of babble.
 
The paper said:
There is often a lack of knowledge about the illness. Education programs can help address this by providing knowledge and supporting the independent management of the condition.
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It's not the patients who need education, it's the professionals. The idea of teaching things they don't understand to people who understand it better is completely ridiculous. Most of the rest has nothing to do with education, it's inflexible systems that punish sick people for being sick in a way they refuse to acknowledge, which has nothing to do with education.

I have no idea who this is for or what purpose they think it serves.
Both CYP and their parents expressed overall satisfaction with the program highlighting aspects such as knowledge acquisition or reinforcement and, importantly, the opportunity to connect with other affected CYP or their parents. The online format was also perceived very positively.
Click to expand...
Everything medical professionals do is graded on an extreme curve where simply showing up and acting nice gives them a passing grade, so this means absolutely nothing. People will always say they are satisfied unless it's actively harmful, and even then they will often try to emphasize the good parts simply because we know that cajoling professionals is necessary for them to not do harm.

At this point all this nonsense does is cast doubt on every single education outreach program ever put together. If useless junk can pass through this system, than every output from this system is at best suspicious.
 
It doesn't sound like this is horrible at all, at least not nearly as what I expected. I thought I was about to read a FITNET 2.0.

Sounds like they had support sessions together with other patients and some plain readable information, I can totally see how that can be helpful. Personally I really needed education about my disease when I first got ill, and it took 3 years for my parents to understand PEM. I think its a bit naive to say that we all intuitively just know how to handle our symptoms, especially in the first year.

I still don't fully understand what is included, and Obviously education is not going to cure anyone. Just saying maybe this can actually be helpful for some.
 
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