Covid-long hauler and people suffering ME/CFS and their relatives

Region: Jena

We are a support group for people affected by post-infectious or persistent disease. People affected by Long-/Post-Covid, Post-Vac, Post-Borreliosis, Post-Sepsis, Post-Malaria, Post... whatever, are very welcome.

Regardless of the cause of a reaction/damage to the body, which has been known for decades as ME/CFS, among other things, the result is a massively performance-reduced patient whose multiple persistent (continuing) or slightly varying complaints can be treated with current remedies.
cannot/can hardly be alleviated/healed with the current means of statutory health insurance medicine. Many sufferers report helpless doctors who explain the limits of their own abilities with "psychosomatic causes" or "hypochondria" or whose hands are tied due to a lack of funding for diagnostics and therapy despite their high level of commitment.

Other sufferers report that, in addition to physical limitations, their economic existence is also threatened or families break up. Lay people have no explanation for the massive reduction in performance and there are no tangible explanations from the medical profession or stigmatization is even supported.

All those affected have very little energy at their disposal, so they cannot afford to waste it on topics that do not serve the solution/relief.

The exchange is therefore objective and relates to personal experiences or the experiences of relatives.

Tips and links should refer to studies and publications that directly or indirectly serve to improve the health and social situation of those affected and their relatives.

The exchange of conspiracy myths is not prohibited in the sense of freedom of opinion, but should take place outside the group meetings in a private setting if possible.

If the group is supported by relatives or other voluntary helpers in the future, speakers from social institutions and associations will be invited to provide information about the social support options already available.

The group is affiliated with organizations/groups such as https://nichtgenesenkids.org/ but acts independently according to local requirements.

Group meetings

The main purpose of the meetings is to enable contact and exchange between those affected and their relatives and to network.

Please note! The scope of the meetings is currently still limited, as so far all the people involved are affected themselves.

The support of relatives of those affected or socially committed fellow citizens would stabilize the offer and ensure that the group meetings can take place.

The group meetings take place every first Friday of the month at 2 p.m. in room 1 of the IKOS.

  • Group room 1 is accessible by wheelchair via an automatic door and an elevator.
  • Parking is available in the surrounding residential area.
  • The A4 Jena exit is within sight.
  • The streetcar stop is behind the ZAR, so it is also easy to reach.

Contact

IKOS Mrs Bettina Brenning AWO Zentrum Lobeda, Kastanienstraße 11 07747 Jena

Phone: +493641 8741160

long-X-Jena@web.de