The Online ME Living Room Groups are gatherings for people with ME/CFS. Started as meetings in the living room of founder Jochem Verdonk, the meetings now take place online. In May, the groups will be five years old. Reason for a look back and a look ahead.

“When I got ME, I needed contact with peers. I wanted to hear experiences from people with similar experiences,” Jochem says. “Unfortunately, the closest group was in Leiden. That was way too far for me.”

New group

This is how the idea arose to start an ME Living Room Group in Zeist, where Jochem lived at the time. Initially he did this together with another person, but he had to stop after a few months. “That was unfortunate. The interest was so great that we had just announced the start of a second group,” Jochem recalls. "I didn't want to cancel that, so I just continued with both groups."

Anniversary

Both ME Living Room Groups have been in existence for five years this year, and thus clearly meet a need. Some participants from the first hour are still participating. In the course of time people have stopped, and new participants have also joined.

Some statistics:

• There are currently 29 active participants.
• Over the past five years there were a total of 52 participants.
• The meetings are small: an average of 3 to 4 people at a time.
• A maximum of 8 people can participate per meeting.

Participants

Some participants participate every month, others only if their health and energy allow it. “It is precisely at these meetings that people should feel free to come or not, depending on their abilities,” explains Jochem. “New participants sometimes apologise for not being able to join every time. Then I try to reassure them: here we all have ME/CFS, so we understand.”

Theme

Each meeting has a theme. In recent years many themes have come up, from doctors to medicines, from acceptance to bereavement, from hobbies to intimacy. A report has been made of many meetings, which you can read at: https://www.jochemverdonk.nl/en/labels/me-livingroom-meeting (Not all reports have been translated yet, a complete overview can be found here: https://www.jochemverdonk.nl/labels/me-huiskamergroep)

The upcoming meetings are planned:

• Monday 2 / Wednesday 18 May: five-year anniversary & out and about within your limits
• Monday 6 / Wednesday 15 June: on holiday
• Monday 4 / Wednesday 20 July: hobbies

Both groups will continue in the summer, because many participants do not go on holiday.

Two groups

There are two Online ME Living Room Groups:

• One group every first Monday
• The other group every third Wednesday

Both groups meet online from14:00 to 15:00. You can sign up with Jochem: huiskamergroep@jochemverdonk.nl. After signing up you will receive the web address by email.

Want to know more?

Please find more information about the Online ME Living Room Groups at https://www.jochemverdonk.nl/en/living-room-group. Or mail to Jochem: huiskamergroep@jochemverdonk.nl.