We about us

WE from “we demand research” are seriously ill people who have made it their goal to support research funding projects and the treatment of #MEcfs.

Sibylle_IMG_5205
Sibylle Dahrendorf, initiator and organizer of we-demand-research

Personal Statement:

 

We are ME/CFS sufferers who are mostly bedridden and no longer able to leave the house. We are trying with the last bit of strength to use social networks to draw attention to this devastating disease, which has been ignored by the state. Most of us don’t have medical care. When the pandemic began almost 2 years ago, we had been in a painful lockdown for years. As it became more and more popular that a large number of those affected by Covid infection suffer from long-term consequences and are also developing the full picture of MEcfs, we had only one hope in this tragedy: research and treatment. Unfortunately that didn’t happen.

 

Mrs. PD Dr. Dr. Bettina Hohberger would like to change that. When the first Long-Covid patients with symptoms identical to those with MEcfs were successfully treated with the BC007 drug from Berlin Cures in Erlangen, it was clear to us: We also need a therapy study for MEcfs with BC007.

 

That is why we support this call as best we can get out of our beds, and WE are wholeheartedly grateful to Alexander Graef and his association Brückeverbindet e.V. for doing this for us. 

Profiles of Affected People
 
  • Sibylle Dahrendorf, 57, former filmmaker, ill since 2014/15, nursing care case since 2017, ME / cfs diagnosis in 2018, Small Fibre Neuropathy (SFN),  POTS and MCAS, tied to the house, no medical care, bad symptoms. Living and vegetating while lying down 24/7.
  • Faraz Fallahi, 39, former team leader software development, fell ill in 2018, severity 10/10, care level 4 (application for 5), bedridden 24/7, no med. Care, comorbidity: small fiber neuropathy.
  • Ilko-Sascha Kowalczuk, 54, historian, publicist, fell ill with ME / cfs in 2014, significant changes in everyday life, but no need for care.
  • paused_me, 32, lawyer, ill since 2013, complete care case since 2018, artificially fed via PEG system since 2019, completely bedridden, inadequate medical care, care by family and fiancé. Life can no longer be called such. No help.
  • Cornelia N., 34, educationalist, M.A., formerly lifeguard, started 10.2013 after infection, unable to work since 2016 & mostly bedridden, severity severe, 24/7 severe symptoms, severe crashes, NO med. care regarding ME/cfs.
  • Dr. Ute M., 41, has been ill for 4 years, bedridden for 2 years, 3 children, previously managing director of a medium-sized company.
  • Dirk V., 43, Life completely destroyed in all areas by ME/CFS since 2013; Bell-Scale 20-30, Trend worsening; predominantly bed- and apartment-bound, not recognized as severely disabled
  • Ingo Miethner, 35 years old, 18 years ME / CFS, unable to work, daily struggle with the body, no help, no recognition, no prospect of improvement or healing.
  • Manuel K., 30, has been ill since 2019 (EBV reactivation), has not been able to study since 2020 and is unable to work, care by parents and partner, tied to the house. Future prospects do not exist. A life in ruins with no prospect of healing.
  • Friederike G., 46 years old, sick since 2011, PG 4, GdB 100 AG, H, B, care by 80 year old parents, no medical care, bedridden and bound to the home for 3 years, lost work, lost apartment.
  • Thomas Heinzmann, 56 years old, sick since 1989, without med. Care. Incapacitated for over 4.5 years.
  • Karin Brauchli, 34, sick with ME since 2015 due to gastrointestinal infection, care level 5, with this disease nobody feels responsible for you, other viruses can also destroy lives.
  • Jannik Mebus, 29, studied software engineering, ME since 2012, progressive course, severe pain, PG2, GdB 80, electric wheelchair, mostly space-bound & lying, no ME spec. med. Care, care by mother, brother René (26) died of ME in 2020.
  • Lukas Neroni, 24 years old, from Baden-Württemberg, ill since 2012, care level pending, no medical care, only med. Cannabis for pain at your own expense.
  • Sandra Menth, 45 years old, sick since 9/2014, care level 4, seriously ill with ME/cfs, bedridden 24/7, autoantibodies ß2-adrenergic positive, no communication possible.
  • Petra, 49, from NL, fell ill at the age of 2, total collapse in 2016, no real medical support until 2018, only slight symptom relief, insurance doctors do not believe 2 sons.
  • Celine Ritter, 18, at the beginning of 11 years, seriously ill in 2014, now PG3, only grade 40, schooled until the end of 7th grade, 22-23h bedridden, all additional illnesses, MCS, EBV, zoster, CMV, EDS, diag. G93.3, 2017.
  • Markus E, 48, ill since 2015, married 2 children, woman does everything, in the past: athlete, head of pre-development, severe disability refused, limited disability pension, Bell scale 20-30.
  • Nicole K., 50, severely affected since 2019. Care case PG3, bedridden 24/7, without life, no ME/cfs specific medical care/treatment.
  • Peer A., ​​31, sick since the beginning of 2018 (after EBV infection), 2 small children at home, have about 3 hours of activity a day, have barely been able to go out since summer 2021, my greatest wish is to accompany my children as they grow up
  • Dr. Julian B., 30, ME/CFS since 2020, completely bedbound sind 2021, care level 5, medical care/home visits by physician, care by wife, son born 2021
  • Philipp S., 30, had to stop studying, ill since 2014, diagnosis ME/CFS u& POTS from Charité, Family cares him, gets no help, daily survival daily struggle for survival with pain and much more
  • Noah Nsaka, 15, fell ill with ME in 2012, level of care 3, level of disability 80, without medical care
  • Gabriel Nsaka, 14, fell ill with ME in 2013, level of care 3, level of disability 80, without medical care
  • Birgit Nsaka, 50, fell ill with ME in 1992, level of care 3, level of disability 70, without medical care

The list of profiles is not equivalent to the people who work in the organization.

We thank you on behalf of all concerned for your support.

Donating is NOT possible anymore!

The non-profit association Brückeverbindet e.V. collects the donations for this project on a specially set up account. Your donation goes 100% to the research project of the UNI-Erlangen to include ME/CFS sufferers in the study with the promising drug BC007.

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