Protocol Development and Implementation of an Online Patient Education Program for Children and Adolescents With [ME/CFS]... 2024 Keicher et al

Full title: Development and Implementation of an Online Patient Education Program for Children and Adolescents With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Their Parents, Siblings, and School Personnel: Protocol for the Prospective BAYNET FOR ME/CFS Study

Abstract

Background:Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) presents significant challenges for affected children and adolescents, their social environment, and treating physicians, due to its profound impact on quality of life and the lack of causal therapeutic approaches. One crucial aspect of care that has been missing for these patients is comprehensive education for both them and their social circles.

Objective:This study protocol aims to outline the goals, study design, execution, and evaluation of the subproject within the BAYNET FOR ME/CFS project. The focus is on developing online education programs for children and adolescents with ME/CFS, as well as for their parents, siblings, and school staff. These programs are designed to improve independent disease management, increase knowledge, and promote interaction with other affected individuals.

Methods:In phase I, the group-based online education programs were developed by a multidisciplinary team based on the ModuS concept created by the Competence Network for Patient Education (KomPaS). These programs were then piloted and finalized. Phase II involved recruiting participants and implementing the finalized programs. Given the restricted physical and cognitive capacities of the affected individuals, the patient education programs were exclusively designed in a digital format to facilitate participation. In phase III, the programs will be evaluated for acceptance, completeness, and participant satisfaction. The qualitative assessment will focus on individual expectations and benefits derived from the training. Phase IV will further assess the programs in terms of improvements in disease knowledge, health-related quality of life, life satisfaction, and family burden.

Results:The programs were developed, piloted, and finalized during phase I, which ran from December 2022 to May 2023. The pilot phase, from March to May 2023, led to adaptations in the program concept. In total, 8 patients and their parents, 5 siblings, and 59 school staff participated in the piloting. Adjustments were made to the format, content, duration, and schedule to better meet the needs of the affected individuals and their social circles. In phase II, participant recruitment for the patient education program took place from January to July 2023. The study successfully recruited 24 young patients with ME/CFS and their parents, along with 8 siblings and 51 school staff. Two program blocks for patients and parents and 2-3 blocks for siblings and school staff commenced in May 2023 and were completed within the same year. Phase III began after phase II and involves the evaluation of the programs, with the process expected to conclude by the end of 2024. Phase IV, planned for 2025-2026, will involve the rollout of the program to 150 children and their caretakers. This phase will focus on evaluating disease knowledge, health-related quality of life, life satisfaction, and family burden, as well as include longitudinal assessments.

Conclusions:The data aim to support the development of a comprehensive, interprofessional care model for children and adolescents with ME/CFS.

Open access, https://www.researchprotocols.org/2024/1/e54679/

 

Given everything I know about ME/CFS, I'm trying to come up with a single problem that such an educational program solves, and I can't come up with anything. If you take all the problems people with ME face, from the most to the least significant, I can't think of a single one that is solved in any way by an educational program aimed at the patients.

An educational program aimed at MDs? Absolutely. A mandatory one with competent information would be transformational. For patients? When most patients understand all of this better than most of the people involved here, even though it looks somewhat decent? What in the hell?

Because this is basically like teaching young girls how to deal with constant harassment from young boys, without either considering teaching boys not to harass girls, or have any of the adults present in their environment involved. It's like taking a problem, medicine's denial and misleading misunderstanding of the illness, ignoring it entirely, and focusing on addressing the problems this creates, none of which solves the root cause problem. So you end up paying twice for worse results. As is tradition.

In the program content, I see the classic goal-setting, and it's really hard to understand how seemingly no one in medicine seems to grasp a concept so simple it can fit on a shirt: a healthy person has many goals, a sick person has only one. A child can understand this. Easily. Yet nearly the entire intellectual mass of the medical profession, although capable of repeating those words like they mean something, is utterly incapable of understanding them.

The "you do you" approach of modern health care is a literal cancer on all of us. It takes problems individuals cannot control and hands them out to us to deal with. Obviously handing people the tools to solve their own problems is a good idea, one I generally fully support, but this here is a rare exception where it doesn't apply.

The only reason we have to become 'experts' in managing our own condition, which we can't do because it's completely unrealistic, is because the experts have completely failed us, and this only acts to support and defend this systemic failure. This is not the way to solve the root cause problem, it entirely ignores it, and it basically acts to defend the systemic failure by ignoring the elephant that is responsible for smashing the whole room.

Not a damn clue to be found here. Pacing is not a technique or a treatment, and relaxation and breathing techniques are obviously neither treatments nor central to anything here. This is ridiculous. No wonder alternative medicine is so popular when professionals not only give up, but give up about having given up.

Seems like it's not acceptable or useful, despite the conclusion stating otherwise:

You can teach people undergoing a planned famine by an external force to cook and budget their groceries all you want, it has nothing to do with the problem. At all.

Like almost all research on chronic illness, it completely fails at this simple concept: the answer to the question is not always the solution to the problem. They keep trying to answer questions that have nothing to do with solving the problem, and never seem to wonder why they never make any progress solving the problem, because they have completely misrepresented the problem and ignore all the data showing them that nothing they do is useful at all.

 

In addition to that, although it's an extension of what I said, let's say you manage to get 150 kids and teach them things they already understand better than you. Now what? Next time they go back to their GP, or a specialist, who doesn't believe in ME/CFS and tells them this is nonsense and they need therapy and to do an exercise program or they will deteriorate. If you don't fix the problem of professionals being trained wrong and believing in weird nonsense, you now have three problems, where you used to have two, because the profession is incapable of dealing with the one. Because of freaking beliefs.

Great job showing all those kids that experts can be so ridiculously wrong that you can safely ignore what they say. But then why should they trust what the hear here? Basically no one knows anything and everyone makes stuff up all the time, even experts. Not a bad life lesson, but not the right way or place to have it.