• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Petition to recognize ME in Germany

Spotted this on Facebook, have copied the text below from this post on Facebook - https://www.facebook.com/katharina.voss.31/posts/783093891843614

ETA: Anybody can sign this petition, it's not just limited to German residents.

Dear fellow patients,

May is just around the corner. May is the ME awareness month. German ME patients urgently need international support for our petition which is addressed to German Health minister, science minister and healthcare provider. Let`s get 5000 signatures!

Please sign and share our petition. Thank you very much for your support!

https://www.change.org/p/hermann-gr%C3%B6he-bundesminister-…

Here you can read Regina Clos` translation of the relevant part of our petition:

Petition to recognize ME in Germany

ME or "CFS" patients ask for:

o RECOGNITION OF THE WHO CODE G93.3
o FUNDING OF BIOMEDICAL RESEARCH ON ME ( "CFS")
o NO MORE DISCRIMINATION BY OUR HEALTH SYSTEM

Myalgic Encephalomyelitis? - Never heard!

Myalgic Encephalomyelitis (ME) is the most common and the most devastating disease your doctor has never heard about. Many doctors believe that this disease exists only in the minds of the patients. However, already in 1969 the WHO classified ME as an organic disease under the diagnostic code G93.3.

In Germany, ME is being played down and incorrectly labelled as "Chronic Fatigue Syndrome". These names are the result of an unprecedented campaign of trivializing and psycho-pathologizing ME, which began shortly after the WHO classified ME as an organic disease.

In particular, we call for:

• An official acknowledgement of BMG (Federal Department for Health), the G-BA (determines the benefits catalogue of the Statutory Health Insurance), the Bundesärztekammer (German Medical Association), the GKV (Statutory Health Insurance), the MDS (medical advisory service of the German association of statutory health insurance funds), the AWMF (committee of the scientific medical expert associations) and the DRV (German federal pension fund) to classify ME (and "CFS") under the key G93.3 as determined by the WHO.

• An official acknowledgement of all the institutions listed above to bring into line their future actions with regard to the disease ME or "CFS" with Article 2 (2) and Article 3 (2 u. 3) of the Basic Law of the Federal Republic of Germany [Article 2 (2) "Every person shall have the right to life and physical integrity. ... ". Article 3 (2) "Men and women shall have equal rights. The state shall promote the actual implementation of equal rights for women and men and take steps to eliminate disadvantages that now exist." Article 3 (3) "No person shall be disfavoured because of disability."].

• The deletion of all references to "CFS" and ME in the AWMF guideline on p 3 without substitution.

• A new version of a guideline of the AWMF for Myalgic encephalomyelitis based on the International Consensus Criteria of 2011 and the International Consensus primer of 2012.

• The deletion of the chapter "Chronic Fatigue Syndrome (CFS)" and all references to "CFS" and ME in other chapters including the deletion of patient letters from DEGAM guideline no. 2 "tiredness" without substitution.

• A new version of a medical guideline on Myalgic Encephalomyelitis based on the International Consensus Criteria of 2011, and the International Consensus primers 2012.

• The development of patient letters based on the International Consensus Criteria of 2011 and the International Consensus primers 2012.

• Forwarding of information (new guidelines and patient information, see above) to all doctor’s offices for general medicine, internal medicine, neurology, infectious diseases, immunology, allergology, rheumatology, cardiology, haematology, endocrinology, environmental medicine, sports medicine, physiotherapy, osteopathy, psychiatric and otolaryngology.

• Information and education campaigns on the disease for doctors, hospitals, emergency rooms, rehabilitation clinics, public health offices, school boards, social services departments, health insurances, pension insurances, disability insurances, medical consultants, job centers and the social association VdK.

• Medical Training on Myalgic Encephalomyelitis based on international biomedical research.

• The establishment of the subject in the curricula of medical schools.

• The deletion of all references to "CFS" and ME and G.93.3 from the DRV "Guidelines for the sociomedical assessment of people with mental disorders" without substitution.

• A nationwide awareness campaign on ME based on the International Consensus Criteria of 2011 and the International Consensus primers 2012 (print and digital media).

• The withdrawal of the deficiently researched RKI report "Erkenntnisstand zum Chronic Fatigue Syndrome (CFS)"

• The establishment of a research budget for biomedical research into ME. The size of the budget should be equivalent to diseases of comparable prevalence and comparable level of disability (eg MS).

We ask for your signature !
https://www.change.org/p/hermann-gröhe-bundesminister-für-gesundheit-bmg-wir-wollen-unser-leben-zurück
 
Last edited: