Development of an app for registration and intervention for pwME

Midnattsol

Midnattsol

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Norske Kvinner's Sanitetsforening/Norwegian Women's Public Health Association has received funding to develop a new app for pwME. The app will provide coping strategies/exercises adapted to the patient group, in addition to a tracker for activity and symptoms.

Google translated project description:
Project Description said:
Background
CFS / ME is a state of exhaustion, characterized by unexplained symptoms and significantly reduced function and quality of life. There is no medical treatment for CFS / ME. The prognoses are uncertain, the course of the disease lasts for several years and it is challenging for patients to maintain a good quality of life along the way. Exercise-triggered symptoms after minimal exertion are most characteristic of CFS / ME. It is unpredictable, very uncomfortable and stressful and needs measures based on this. We will design and develop a focused, digital solution aimed at core challenges at CFS / ME.

Objective
The goal is to design and develop a tailored intervention and a digital solution that both registers daily activities / symptoms and offers coping strategies adapted to CFS / ME patients. The project will create an app for smartphones that is tailored, accessible and can be offered to anyone with CFS / ME

Target group
Patients diagnosed with chronic fatigue syndrome / myalgic encephalopathy (CFS / ME) from 18 years and up.

Number of people in the target group
1000

Description of implementation
Unpredictable, stressful and exertional triggered symptom exacerbations are most characteristic of CFSME. Understanding and getting this under control is an important matter. We will design and develop an easily accessible, digital intervention that is experience- and research-based and based on patients' specific disease challenges in everyday life. The solution will be an app for smartphones, based on patients' needs. To achieve this, there will be active collaboration along the way with patients and healthcare professionals. The content of the intervention will also include topics that have been useful and effective for other patient groups. The Department of Digital Health Research will carry out the project. They have already developed and tested stress and pain management apps with promising results. These will be further developed and adapted to CFS / ME challenges. In addition to exercises, the new app will also provide the opportunity for daily registrations of activity, stress and symptoms, which then become the basis for suggestions for strategies / exercises for the individual. The app will contain 6-8 modules with information and guided exercises through both text and sound. Collaboration with users takes place in workshops / interviews repeatedly in the development of content and of the design of the app.
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The project description can be found here: https://dam.no/prosjekter/utvikling-av-applikasjon-for-registrering-og-intervensjon-ved-cfs-me/
 
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I have to say I am dubious about this. Symptom tracker apps already exists, and I don't see how they can provide any type of useful exercise tips (it doesn't say what type of exercises they are thinking about, but evein breathing exercises can trigger PEM so...)

Added: Another thing I'm dubious of is the evidence that similar type of apps have shown promise for ie pain and stress relief and that knowledge from those apps can be applied here. I have a feeling they will all likely contain very similar type information about sleep hygiene and such.
 
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Trish said:
Why on earth do they think people made sicker by exercise need to be prescribed exercises. It makes no sense.
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Since they don't say what they mean by exercises, it's difficult to know what this will be. The Norwegian word used "øvelser" encompass breathing exercises, practice mindfulness etc. in addition to full on exercise. But this can also cause PEM for some, and the target group is "all CFS/ME patients".

And continuing in that line - all patients are not in need of a symptom tracker, many of us have been ill for years and know our triggers. A digital coping app will not help when part of what doesn't work in day to day life are things outside one's own control.
 
The project leader is a psychologist at the Norwegian Competence Center for CFS/ME. They have a biopsychosocial approach to ME, and promote exercise, therapy and even LP.
What a pity!

The Norwegian Women's Public Health's Association does important work, has money to fund research, and is currently focusing on under-researched illnesses with women as majority/main part of the patient groups.

I guess as "ME-outsiders" they have no reason not to trust a public, national competence center and will probably listen more to them than the patients themselves.

It's so frustrating to see research funds go to waste and that when this association finally gets involved with ME, they start with the wrong end of the stick.
 
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