Fatigatio e.V.

The Fatigatio is a German patient organization. It was founded in 1993 and is located in Berlin. The Association has over 2600 members. Fatigatio e.V. is an equal partner in cooperation with other national ME/CFS organizations and strives to represent national and international interests in Europe (e.g. EMEA).

Aims

Fatigatio e.V. stands up for ME/CFS sufferers and their relatives and wants to make all relevant parties aware of their illness. Fatigatio e.V. wants to achieve that

- ME/CFS is recognized nationwide as an organic disease (G 93.3)

- a nationwide infrastructure of clinics, general practitioners and nurses is offered

- ME/CFS-specialized acute hospitals and rehabilitation clinics are established

- at least one counseling center is provided in hospitals and clinics in each federal state - politicians recognize the urgent need for action and provide funding for research

- politicians set the course for the social security coverage of sufferers

- health insurance companies include all costs associated with the disease in their benefit catalogs

- until effective medication is available, off-label drugs and therapies as well as dietary supplements to correct metabolic disorders are also covered by health insurance companies

- pharmaceutical and medical research specifically addresses the clinical picture and publishes results

- doctors are familiarized with the clinical picture and possible diagnostic and therapeutic approaches as part of their training and receive continuous further training in this area

- information for employers, schools, universities and training providers on the clinical picture and its effects on the performance of those affected is created, regularly updated and communicated

Controversy

• When an alliance of all German patient groups protested the guideline "tiredness" (which includes a chapter on ME/CFS and recommends GET and CBT) in 2011, Fatigatio publicly quit the alliance and opposed its criticism of the guideline.
• During the latest revision process of the guideline "tiredness" in 2018, the then Fatigatio chairwoman wrote to the guideline commission (see page 94 in the linked guideline report), claiming, among other things, that ME/CFS was rare, patients should be activated and made derogatory comments about the "CFS scene". This statement was published in the official guideline report. When members and the patient community criticized it, Fatigatio claimed it was a "private letter" and asked the guideline commission to delete it from the report. Afterwards Fatigatio published a letter by a lawyer on its website to threaten critics with legal action and a letter by a psychiatrist to defend the remark, that bedridden people with ME should be activated.
• While all other German patient groups cooperated, Fatigatio was the only organization that didn't participate in the German #MillionsMissing protests 2018 and 2019.
• Fatigatio used the term "Chronisches Erschöpfungssyndrom" (chronic exhaustion syndrome) in its name "Bundesverband Chronisches Erschöpfungssyndrom CFS/CFIDS/ME" (federal alliance chronic exhaustion syndrome). Patients critizise the use of the trivialising and unofficial term "exhaustion syndrome". Also that the Fatigatio uses the terms CFS and CFS/ME instead of ME or ME/CFS is criticized. Nowadays the association bears the name "Fatigatio e.V. - Bundesverband ME/CFS". The association's website states: "The name ME/CFS is derived from the combination of two internationally used terms: ME for myalgic encephalomyelitis, CFS for chronic fatigue syndrome. They describe the clinical picture much more accurately than the German "Chronisches Müdigkeitssyndrom" or "Chronisches Erschöpfungssyndrom", terms that do not come close to doing justice to the severity of the clinical picture."
• Older Media articles with the Fatigatio report on tiredness, psychological problems, thinking positive and staying active. In an article from 2016, the then former chairwoman proposed as solution how to practice pacing.

Events

Fatigatio e.V. organizes a yearly conference.

Interviews and articles

• "Mit chronischer Erschöpfung leben"
• "Wenn Schlaf keine Erholung bringt"
• "Chronisches Erschöpfungssyndrom: Wenn man immer müde ist"

Online presence

• Website
• Facebook
• Twitter
• YouTube
• Instagram

See also

• Deutsche Gesellschaft für ME/CFS
• Lost Voices Stiftung
• #MillionsMissing Deutschland

Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) - Chronic Fatigue and Immune Dysfunction Syndrome is another term for Chronic Fatigue Syndrome, but one which emphasizes the immunological aspects of the disease. Popular in the 1990s, this term has apparently fallen into disuse.