Invest in ME Research
Christmas Fund Appeal Advent Calendar

Removing Isolation - a Consequence of ME

Most of the effort from Invest in ME Research in recent years has been aimed at trying to get research into ME started based on a strategic view that looked at the long term.

The charity has looked at what needed to be created in order for a complete sea-change to take place in how ME is researched, treated and perceived.

So we embarked on initiating international conferences and research Colloquiums to attract and generate international collaboration in research.
We looked at medical students becoming aware of ME.
We wanted to attract young researchers into ME research.
We needed to build a foundation for biomedical research into ME.
We initiated a project to develop a Centre of Excellence for ME.
We initiated and facilitated the idea to form a European network of researchers.
We initiated and facilitated the idea to form European network of clinicians.

We now see many of these things taken on board elsewhere and the supporters of the charity have really made a difference.

However, we have also looked at other issues – the consequences of ME, along with our European ME Alliance partners.

One insidious consequence is isolation – affecting young and old patients.

Little had been done to tackle this.

In 2018 we wanted to change how young people may be affected by this.

A disease such as ME presents many challenges to a patient and to a family.

It can provide challenges also to schools when a child or young person is unable to continue full time education.

In such situations families can find themselves on the receiving end of the ignorance about ME that has pervaded our societies where social services and education authorities may use a one-size-fits-all attitude to treating families where the child must remain at home.

Children and youths with long-term illness such as ME do not need to be excluded from their friends’ activities and progress and schools have a responsibility not to ignore them – something which can lead to long term discrimination and more serious and longer term isolation.

At our IIMEC12 conference in London in June 2017 we invited a Norwegian company - No Isolation - to display new thinking on how to resolve some of the issues with this situation.

The Norwegian start up had developed a robot that helped children and youths with long-term illness to participate in the classroom on their own terms.

The robot, called AV1, acted as the student's eyes, ears and voice in the classroom on days where they cannot be physically present.

"The advantage in participating in class through a tablet is that they have full control over sound levels, light and movement.
In a normal classroom they do not have the option to control sensory inputs in this way.
Furthermore, they can participate exactly when they feel like it, taking into account that symptoms can fluctuate over the course of the illness, even from hour to hour"

We started a trial and the results were very good.
This trial would not only facilitated the re-connection of young ME patients to their schools.
It also recreated the social relationships.

We also felt that it educated other children, and their families, about the disease. It would additionally educate teachers and possibly social services.

If this trial did the above then it helped change lives.

Zoe had her experience highlighted in the media highlighted in this BBC News item

Makayla's story was highlighted in this article

While we continue to force change in research into ME we need to avoid losing sight of what we can do for young and old patients, for those of all levels of severity, for those who are newly diagnosed and for those who have endured this disease for decades - thinking outside the box using new technology.

We plan on more robots to be made available in the New Year for young people with ME.

Things don’t have to be the way they are – we can change things.

The charity does this in order to highlight and overcome a major consequence of becoming ill with ME.

In all of this we wanted to change things.

However, nothing would have happened had it not been for the courage of the two families who contributed most to this trial. After all they have been through it takes some guts to try something like this – so the real heroes are Makayla and Zoe.

The same issues that are faced by those with ME are also affecting other children with other conditions.

This petition is trying to change this - please consider signing it -
Demand no child with a serious illness is left without an education - #InvisibleChildren

and here is the video explaining more about Invisible Illness for children -

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