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

Dear parents, relatives and affected persons,

we are a small group of people who have been struggling with increasing exhaustion, various aches and pains, and failure symptoms for a long time. We have found that "pushing the envelope" - that is, trying to "pull yourself together" to push harder - usually actually makes the situation worse.

We are now joined by those who have developed identical symptoms following Covid 19 disease.

Our main concern is information and exchange, since we feel denigrated as “hypochondriacs" or "malingerers" by a large part of society, but also by the vast majority of medical professionals.

For many years, "psychosomatic" has been at the top of our list for the election of the unword of the year. We are of the opinion that this is a way for the medical profession and the health and pension insurance funds to shirk their responsibility, instead of carrying out a complete diagnosis and then fighting with us for meaningful treatment with the providers.
Depression is gladly diagnosed and declared to be the cause of the physical limitations, although the serological laboratory values are a sure indication that it is the other way around.

Urgently needed helpers and caregivers are not awarded by the carriers, because many physicians do not find the necessary diagnosis code, or it does not exist apparently intentionally, because "hypochondriacs" and "malingerers" are not allowed to get any support.

We think our bitterness is quite justified. Many of us live in social but also financial poverty, because we lack the strength for contacts and also the strength to represent and demand our rights from the authorities.

Since we all have only limited resources, we cannot yet say when and how a group meeting can take place.

We very much hope that relatives of those affected can support us here and Long Lyme (persistent Lyme disease) and Long Covid patients are also expressly welcome to exchange information in the new self-help group to be founded.

Do you also feel left alone, not understood, not accepted? Are you increasingly isolated and suffering from this steadily worsening life situation? Then please feel free to contact us.
For the time being, please contact the IKOS office in Jena. The staff will forward your request so that we can get in touch with you. Or you can contact Stefan directly, but please register an appointment via SMS at 0152 26858581.

At https://www.mecfs.de/und https://lebenszeit-cfs.de/ and other websites for people who have suffered from a covid infection (post covid) or other infections, have ME/CFS and are now permanently exhausted, you can find information about what activities are undertaken by associations.

Stefan and Christine