On my travels through Europe I am reminded of the incredible work done by national organizations and local support groups on so many levels, and how important these groups are for patients and parents in those countries. Most European countries have one or several big and smaller support groups, with members ranging from a few hundred to a few thousand. Not only have those groups done a great job in organizing all the conferences I have been invited to but they are extremely important for the local ME/CFS community. Today I would like to share some of the advantages of belonging to such groups and the things that stood out to me when talking to patients and organizers in Europe.
First off, for patients it is important to feel a sense of belonging, of being part of a global community, especially since I feel that social isolation and credibility are one of the major problems for patients and their families. When members attend the meetings or are connected online, they are among people who understand their illness and the implications of it on so many levels. In addition, these groups are a great source of information and help. All of us know the feeling of not knowing whom to turn to for help and not being understood. In these support groups, patients share a lot of useful information and for those that are too sick to attend, they can join the discussion online or by phone.
Support groups give support on so many levels: clinically valid information on the disease itself; names of supportive medical practitioners in the area; validation (being believed, being heard); emotional, practical and social support. Most groups organize interesting events, invite specialists, have monthly gatherings, share information by monthly brochures and are on social media.
The sense of belonging that these groups provide can therefore be very valuable for the ME/CFS community, and we are so grateful for it. Many patients are not only socially isolated, having lost friends and been alienated from family, but many are also physically alone, with no partner or children. Belonging to a social network or community is extremely important for every human being – it helps us to thrive. So please join me in expressing OMF’s gratitude to the wonderful community organizations that provide much-needed hope and support to patients, parents, scientists, and doctors worldwide!
With hope for all,