Sweden: ME clinic and Masano Health digital rehab for ME/CFS

[mango]

Masano Health AB is a privately owned digital rehab company in Sweden. It's a quite new company, started in November-December 2020 according to information on their website.

They updated their website yesterday to add information about their digital rehab for ME/CFS:
https://www.masano.se/våra-program

They offer a 4-week individualised rehab supported by an interdiciplinary team with "a holistic perspective".

Together with the team and your contact person, a programme structure is created that suits you, your daily life, your energy and your goals, based on individual meetings and group activities.

Based on Pacing (Balance between activity and rest), you are for example given the opportunity to work on activity balance and activity windows individually and in groups with the occupational therapist, discuss strategies with the counsellor and your fellow patients, and our physiotherapist and nurse can contribute to an increased body awareness, and knowledge about lifestyle factors.

For us, it is obvious and important that we work in your everyday life, with concrete goals, measures and strategies that can facilitate your diagnosis.

ACT tools are often a good help when we work with strategies, goals and limitations. [...]

By assessing your mood, pain and fatigue on a daily basis during the programme, you will be able to monitor how you are affected, and what can help you further. [...]

If you would like to expand by working on your own activities (physical/social/activity/leisure) with us, we look forward to it. You will then decide on one or two of your own activities, which will be coached with the help of the team for a sustainable result over time and with specific goals in the physical, social, employment or leisure spheres, for example.

There is also the possibility to expand through individual programmes from the occupational therapist and/or physiotherapist or tasks from the counsellor and nurse.

In the summer of 2021, we have had the privilege of launching the first mixed diagnosis programmes [...] From September we will open an additional "End User Test" with full focus on ME/CFS and Post Covid.

Masano has received a lot of questions from pwME on social media (we're still waiting for answers). Lots of pwME have already expressed an interest in taking part, too.

 

[Trish]

That sounds quite a sales pitch - goals, goals, goals. Not a word about dealing with crashes, risks of setting goals and then failing to reach them etc. It all sounds like tell us what you want to be able to do and we'll see you get there if you stick with us. A real money spinner. Or am I too cynical?

 

[mango]

Think right from the start - Digital rehabilitation for patients with ME/CFS.

Masano Health will together with Region Västerbotten and Umeå University test rehab for ME/CFS with support by Vinnova during the autumn. The hope is that in parallel with this proof of concept open up digital interdisciplinary rehabilitation to other Regions.

During the summer preparatory work has taken place with end-users in a focus group with mixed diagnoses, which
generated very positive results and feedback, and we are planning a new focus group of patients with Post Covid as well as ME/CFS.

 

[Invisible Woman]

our physiotherapist and nurse can contribute to an increased body awareness,

Wait. I thought we had too much awareness.....

For us, it is obvious and important that we work in your everyday life, with concrete goals, measures and strategies that can facilitate your diagnosis.

Concrete goals for a fluctuating condition. What could possibly go wrong?

A real money spinner. Or am I too cynical?

Can you be too cynical and have ME for more than 5 minutes? And just think of all that lovely data they'll gather about you along the way! €€€!

 

[mango]

So, I've had a look at Masano's digital rehab program for ME/CFS now, as it is presented to potential participants in the 4-week pilot project (trial run? research study?) they are currently running.

They stress that it is heavily individualised.

There are two different levels available:

The basic option starts with a group meeting online to introduce the technical platform and course contents. Then there is an individual session and optional tests by a physiotherapist, an individual program by a physiotherapist, interactive movement sessions (30 minutes, 3 times a week + optional Q&A for each session), access to their online "school of knowledge with theory focused on lifestyle factors and diagnosis specific content", as well as access to pre-recorded sessions.

The full option focuses on individual sessions with occupational therapist and counsellor. More than one hour of work a day, Monday to Friday. Starts with two group meetings online to introduce the technical platform and course contents, then an individual session to plan the rehab based on anamnesis and PROM/PREMS, 3 individual sessions per week (on top of the group meetings), interactive movement sessions (30 minutes, 3 times a week + optional Q&A for each session), individual exercise programs by occupational therapist and physiotherapist and individual activities coached by the team, 2 theory/knowledge group meetings online a week (30-40 minutes), as well as team sessions and group sessions at the end of the course for evaluation, questionnaires etc.

 

[Trish]

That sounds like an awful lot of activity to add to whatever necessary life demands the participants are already doing. I thought the aim was pacing, which usually means needing to cut back.

 

[mango]

Vinnova: Tänk rätt från början etablering av ME/CFS rehabilitering på distans i Sverige
https://www.vinnova.se/p/tank-ratt-...av-mecfs-rehabilitering-pa-distans-i-sverige/

Think right from the start establishment of distance ME/CFS rehabilitation in Sweden

Coordinator: Region Västerbotten - Work and Behavioural Medicine Centre

Grant from Vinnova: 894 549 SEK

Project duration: June 2021 - June 2022
Status: Ongoing

Call: In the wake of the crisis 2021
Call for proposals: Transformation of an industry or social phenomenon in the wake of the pandemic

Aims and objectives
ME/CFS is a neurological disease characterised by prolonged fatigue with severe disabilities, with an estimated 10 000-40 000 people affected in Sweden. There is no clinic north of Stockholm. The northern part of Sweden covers half of the country, which is why a digitalised highly specialised rehabilitation is a highly topical solution. The aim is therefore to tailor and evaluate a digital rehabilitation option for the patient group with the aim of offering a more accessible, resource-efficient and equitable rehab.

Expected results and impacts
An evaluated solution for coherent digital rehab will increase access to healthcare for these patients and has the potential to improve rehabilitation and quality of life. A digital solution will also provide equal access for all across the country. A positive outcome of innovation implementation for ME/CFS of digital coherent rehabilitation can be a precursor for implementation in other patient groups in need of intensive rehabilitation programmes, such as rheumatics, Parkinson's patients etc.

Planned approach and implementation
A common vision and requirements specification will be developed as a basis for finalising the rehabilitation programme and content. This is followed by a joint referral process with the admission of 20 patients who undergo a 4-week specialised interdisciplinary rehabilitation period according to a personal rehabilitation plan and a further 5-month structured follow-up period. The rehabilitation is followed up according to a structured evaluation template containing PROMs and PREMs. The process is monitored by the region, rehabilitation service provider, patients and evaluators.

"Vinnova is Sweden’s innovation agency. We help to build Sweden's innovation capacity, contributing to sustainable growth. Our vision is that Sweden is an innovative force in a sustainable world."
https://www.vinnova.se/en/about-us/

 

[Invisible Woman]

Wow!

Maybe if I recover one day I might be well enough to give this a go?

On the other hand if I could consistently do that much I'd probably go looking for a part time job, earn a little cash.

 

[mango]

It seems like this digital rehab is in collaboration with/part of the ME clinic Region Västerbotten is planning to establish in Umeå. According to Masano, at least. I haven't been able to get an official confirmation from the Region yet.

(Discussion about the planned ME clinic can be found in the News from Scandinavia thread.)

Edited to add clickable link.

 

[chrisb]

How do these quacks start a team meeting?

Let us prey?

 

[mango]

According to a Region Västerbotten job listing for a psychologist, the planned ME clinic in Umeå will be at the Lifestyle Unit, which is part of the Occupational and Behavioural Medicine Centre. The original plan was the geriatrics unit, so this is an "interesting" change...

Psykolog till vår nya ME-mottagning (Myalgisk Encefalomyelit), Umeå
https://www.regionvasterbotten.se/jobb?itemid=b4031b0175b31db3d6a3a20d642bca77

Google Translate, English

Psychologist for our new ME (Myalgic Encephalomyelitis) clinic, Umeå

The ME clinic will be a unit under the Division of Life Medicine. Life Medicine is an innovation and research unit whose mission is to support and conduct innovation and development work and research in the field of health, work, environment and lifestyle with a focus on digital solutions and e-health.

Today, we are responsible for several EU and research projects in the field of lifestyle.

As a psychologist, you will also contribute to the development of practical patient-oriented work, including digitalised interventions and a web-based communication platform.

Part of the responsibilities will be to develop and evaluate web-based psychological measurements with a focus on statistical methods and validity.

Contacts and collaboration with external stakeholders such as employers, health centre providers and municipalities will occur. You will also be involved in initiating regional and national quality registers.

The position will also include participation in national and international projects at Livsmedicin.

I can't help noticing that the section Qualifications doesn't mention knowledge or experience of ME...

Here's some more info about the life medicin unit:

Region Västerbotten: Arbets- och Beteendemedicinskt Centrum Umeå: Livsmedicin
https://www.regionvasterbotten.se/o...h-beteendemedicinskt-centrum-umea/livsmedicin

Life Medicine

Life Medicine will support and conduct research, innovation and development in the field of occupational, environmental and lifestyle health, with a focus on digital solutions and e-health.

Life Medicine is part of the Centre for Occupational and Behavioural Medicine and acts as a bridge between the region, university, municipality and industry. We are a clinic with roots in clinical research. A major focus is on health support interventions for disease prevention. Therefore, we develop prevention and self-care through technology development and product validation in our test bed. In a testbed, ideas can be developed and tested on actual people in an innovative, real-world environment.

We have a multidisciplinary profile with expertise in public health, rehabilitation medicine, molecular biology, physiology, nursing, geriatrics, internal medicine, sports medicine and psychology.

Our focus areas are increasing physical activity, social connectedness, healthy lifestyles and identifying healthy factors for healthy ageing across the lifespan.

 

[Invisible Woman]

Our focus areas are increasing physical activity, social connectedness, healthy lifestyles and identifying healthy factors for healthy ageing across the lifespan.

[Bolding mine]

And there you have it. No ifs, buts, or caveats, whether it's appropriate or not that's the goal, increased physical activity.

 

[mango]

A blog article by @MittEremltage about the digital rehab project and some of its apparent problems. Definitely worth a read

Tänk rätt från början
https://mitteremitage.wordpress.com/2021/09/16/tank-ratt-fran-borjan/

Google Translate, English

[...] Excuse me. But WHAT on earth is this!!?! I feel sick just reading about it and I can't bear to think how I would feel about participating in a four week rehab at this level. I wonder what patients they intend to see really and what knowledge they have of ME? The target group for the ME clinic in Västerbotten has always been ME sufferers who are moderately or severely ill. I, as a severely ill person, would definitely not be able to cope with this intensity. Only that it should be 100% digital prevents me. They don't even seem to understand that some people can't handle video meetings?

I asked the following question in a facebook group for people with ME:

"Hypothetically (based on your overall experience of your illness), could you cope with video meeting activity individually and in groups for at least 1 hour a day Monday to Friday for 4 weeks? (And other organized activity on top of that.)"

After 24 hours, I had received 115 responses from people with varying degrees* of ME: 6 mildly ill, 65 moderately ill and 44 severely ill. All of them answered no to the question. The fact that no one with very severe ME responded is quite natural given the severe limitations they have, but it is also unlikely that they would answer yes to the question when even the mildly ill do not think they could cope with that level of activity.

Quite telling that not a single one felt that they would be able to participate in the way that is expected. In other words, I am not alone. [...]

 

[Midnattsol]

My latest long-ish crash in April was due to an intensive two week with digital lectures every day for 6-8 hours, and a one week home exam after that. I skipped some of the non-compulsory attendance and had thought to just not participate much in the compulsory lectures, but we had group work that had to be finished in the same session and it was extremely tiring.. Based on my fibit data it took ~eight weeks or so before my level of activity was back to what it was pre-course.

 

[mango]

Anna Nordström's (head of the Life Medicine unit) profile on ResearchGate:

https://www.researchgate.net/profile/Anna-Nordstroem

 

[Hoopoe]

These rehab approaches are designed to benefit the business offering them.

If you have the capacity to participate, you're better off using that energy for doing things that are actually fun and rewarding instead of wasting one half of it on things they only added so they could ask for money.

Chances are "interactive movement sessions" is also not the best physical activity to spend your energy on.

Instead consider nature or activities with friends. Best if done spontaneously, without fixed goals in mind, done for the pleasure of doing them.

 

[Trish]

"interactive movement sessions"

I hate to lower the tone, but that sounds like something best done in privacy with one's partner.

 

[mango]

Statement by RME Norr, the ME patient organisation in the Västerbotten region, posted by the chairman as a comment on a post on @MittEremltage's Facebook page:

The board of RME Norr had a meeting the other day where we discussed, among other things, this company's contribution to the ME pages. We decided that after trying to inform ourselves as best we can we give our position which is as follows:

This company is now running a marketing campaign in FB groups with ME connections for their distance rehabilitation. It is looking for ME sufferers to participate in their product development without compensation.

As far as we have been able to ascertain, the company completely lacks specialist expertise in the field of ME and what has emerged, on direct question and so far, they seem to apply rehabilitation models from other diseases. This includes, for example, exercise and exertion in various forms.

In addition, they seem to intend to carry out rehabilitation without prior detailed qualified individual diagnosis, which is not professional behaviour.

They seem to work in such a way that they propose general rehabilitation programmes and then expect patients to report the problems that arise i.e. when e.g. the patient is injured by PEM.

RME does not participate in marketing campaigns for individual companies and does not endorse the marketing in question or their rehabilitation programmes.

The extent to which individuals wish to participate free of charge in their product development with significant risk of harm, particularly PEM, is up to each individual.

On behalf of the Board of RME Norr, Björn Hedman, chairman

 

[mango]

There are other excellent comments on that Facebook post too, for example this one:

There must be a requirement for risk assessments in ME care and everything else related to ME sufferers.

Patients have the right to make informed decisions and in this case none of the responsibles seems to have understood the risks, and that is really bad indeed.

"Right from the start" should mean asking for help from ME sufferers who have been ill for a long time and have a wealth of experience of care, so that the design manages all those risks that we have learned to identify over time.

I don't want to have to see any more ME sufferers harmed by healthcare, they are suffering enough now. We deserve better than this.

 

[mango]

Someone asked the Swedish Ethical Review Authority about Masano’s digital rehab for ME/CFS project. They replied that they don’t have any record of any such research study in their database. They haven’t received an ethical approval application for this project.

So it seems the project is not a proper research study?