2019 Petition to Ministry of Health Germany

J

Jupiter

Established Member
Hi everyone, greetings from Germany

the situation here in Germany is still pretty bad, even some MPs are now familiar or at least involved with ME/CFS organisations.
The following petition still needs more signatures so we can make more pressure to the Health Ministry.... its all in german but it covers the basic issues like more funding, clinical care....

On the right you have to enter your first name, second name and E-mail then press the red button -> "Petition unterschreiben"

Hope we get some more signatures !!!

Thanks

https://www.change.org/p/jens-spahn-bundesminister-für-gesundheit-bmg-wir-wollen-unser-leben-zurück
 
Jupiter said:
Hi everyone, greetings from Germany

the situation here in Germany is still pretty bad, even some MPs are now familiar or at least involved with ME/CFS organisations.
The following petition still needs more signatures so we can make more pressure to the Health Ministry.... its all in german but it covers the basic issues like more funding, clinical care....

On the right you have to enter your first name, second name and E-mail then press the red button -> "Petition unterschreiben"

Hope we get some more signatures !!!

Thanks

https://www.change.org/p/jens-spahn-bundesminister-für-gesundheit-bmg-wir-wollen-unser-leben-zurück
Click to expand...

I will share it with friends and contacts in Germany, can non Germans sign too?
 
Is anyone able to provide a translation into English for the text of the petition? Obviously I could do a Google translation but something checked by a fluent speaker of German would be appreciated.
 
The petition is by Katharina Voss, and if I remember correctly it has been running for a while. 12.773 signatures is really good, but obviously more is needed (I think 50.000 for an evaluation by the petition committee?).

The petition is addressed to Jens Spahn the German Health Minister.

Here's my take on a translation (just a selection because there is a lot of text):

"ME or "CFS" patients demand:

RECOGNITION OF THE WHO CODE G93.3
FUNDING FOR THE BIOMEDICAL RESEARCH OF ME ("CFS")
STOP THE DISCRIMINATION THROUGH OUR HEALTH SYSTEM

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

In Germany, ME is also trivialized and incorrectly referred to as "chronic tiredness syndrome", "chronic exhaustion syndrome" or "chronic fatigue syndrome" ("CFS"). These names are the result of an unprecedented trivialization and psychopathologization campaign that began shortly after the WHO classification. (If you want to know more about the disease and whom you can meet, please scroll down.)

What we demand in detail:

An official commitment of the BMG (= Health Ministry), the G-BA (= committee that decides what treatments are part of state health insurance and that ensures quality), the BÄK (federal asscociation of doctors), the GKV (Association of Statutory Health Insurance - represents the interests of health insurance), the MDS (medical service for statutory health insurance, i.e. gives consulting; part of this is the MDK), the AWMF (organization that publishes guidelines) and the DRV (in UK: DWP, German Department for Pensions) to a WHO-compliant classification of ME (and "CFS") under the key G93.3 [Remark: These are central German institutions of the Health system]

An official commitment of the BMG, the G-BA, the BÄK, the GKV, the MDS, the AWMF, the BMBF and the DRV, that their future action in relation to the disease ME or "CFS" will be according to Article 2 (2) and Article 3 (2 & 3) of the Constitution [Article 2 (2)] "Everyone has the right to life and physical integrity. ... ". Article 3 (2) "Men and women are equal. The state promotes the effective implementation of equal rights for women and men and works to eliminate existing disadvantages." Article 3 (3)" ... No one shall be disadvantaged because of his or her disability. "]

The replacement of all references to "CFS" and ME in the AWMF guideline S 3 without substitution [guideline "functional bodily symptoms" - ME/CFS is equaled with Neurasthenia/BDD, and CBT/GET are treatments, the concept of "unhelpful/false illness beliefs"]

A new AWMF guideline on Myalgic Encephalomyelitis based on the 2011 International Consensus Criteria and the International Consensus Primer of 2012

The cancellation of the chapter "Chronic Fatigue Syndrome (CFS)" and all references to "CFS" and ME in the remaining chapters including deletion of the patient letters from the DEGAM guideline Nr. 2 "Tiredness"

A revised medical guideline on myalgic encephalomyelitis based on the International Consensus Criteria of 2011 and the International Consensus Primer of 2012

The preparation of patient letters based on the International Consensus Criteria of 2011 and the International Consensus Primer of 2012

Sending of information material (new guidelines and patient information, see above) to general medical, internal, neurological, infectiological, immunological, allergological, rheumatological, cardiological, hematological, endocrinological, environmental medicine, sports medicine, physiotherapy, osteopathic, psychiatric and ENT practices

Information and education campaigns on the disease for doctors, hospitals, emergency rooms, rehabilitation clinics, health departments, school offices, youth welfare offices, social services, health insurers, pension insurers, occupational disability insurers, appraisers, job centers, VdK

Medical training on the topic of myalgic encephalomyelitis based on international biomedical research results

The anchoring of the topic in the curricula of the medical faculties

The replacement of all references to "CFS" and ME and G.93.3 from the DRV "Guidelines for the Socio-Medical Assessment of People with Mental Disorders" [see above - CFS is Neurasthenia]

A Nationwide Education Campaign on the basis of the 2011 ICC and International Consensus Primer of 2012 (print and digital media)

The withdrawal of the poorly researched RKI report "State of Chronic Fatigue Syndrome (CFS)" [really poor]

The establishment of a research budget for the biomedical research of ME. The amount of the budget should correspond to comparable prevalence and comparable degree of disability (tough MS)."
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My personal remark: Although there may be weaknesses, the petition addresses all problems that we have in Germany.
 
Thank you, @Inara for providing a translation of the petition's basic demands and explaining the German abbreviations and terms. I would not have been able to do this ATM.

One of the most annoying effects of having ME for me is not being able to participate properly in discussions, at least most of the time.

This also is the case with advocacy work. I appreciate all people dedicating their time and energy to advocacy work for ME and wish I could participate more (I contributed more in the past when I was only mildly affected).

I am not able to explain my criticism of the German petition at the moment, just thought it would be good to know at least the complete (indeed, very long) text of the petition and the linked material before promoting it. (And despite many valid and important points I'm concerned that this petition won't contribute to taking ME, pwME and their carers seriously).

I couldn't watch the two videos linked in the second paragraph (introductory text to the petition), but had a quick glance at the second video.



It contains an interview with Judy Mikovits. I didn't watch further, so I don't kno how the video portrays her research on retrovirals. The starter of the petition seems to approve this research, though.

Some background about the starter of the petition: (scroll down for English version)

http://meversuscfs.blogspot.com/search/label/Time for Truth – Zurück im Leben dank HIV-Medikament / Back to Life Due to an HIV Drug



So, here are the other parts of the petition, translated by deepl: ( https://www.deepl.com/translator )
(see following post)
 
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So, here are the other parts of the petition, translated by deepl: ( https://www.deepl.com/translator )

With your signature, please help to improve the catastrophic situation of ME or "CFS" patients in Germany. More and more people are affected by this cruel disease, and in recent years children and adolescents have also been increasingly affected. Many of them are forced to live an inhumane existence in darkened rooms, cut off from the outside world and completely helpless. What is to become of these children when their parents are no longer able to care for them? What is to become of the many young people who cannot finish their schooling, have not completed their education and are seriously ill?

We must finally put an end to the trivialization, psychopathologization and denial of a disease that mainly affects women! Women with diseases of unknown aetiology are currently being discriminated against by our health system. We must take a firm stand against this.

People with ME urgently need effective therapies and adequate medical care to be able to participate in life again. The economic damage caused by withholding research and therapies from ME patients is immense. As the disease spreads, something must urgently be done. It can affect anyone - including you!

Please sign!
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INFORMATION ABOUT ME
What is ME?

ME occurs sporadically as well as in epidemics and clusters. It is a chronic and incurable multisystemic disease that is virally triggered in 80% of cases. The cause of the disease is still in the dark. More than 80 years after the first documented epidemic outbreak of the disease, patients are still waiting for greater research efforts and effective therapy.

The core symptom of the disease is not fatigue, as is often claimed. The core symptom is a pathological exhaustion of the musculature with the consequence of a neuroimmune deterioration of the condition after exercise. Depending on the severity of the disease, the scarce energy resources can be completely exhausted by half a working day, a short walk, light housework or even just eating, turning in bed or speaking a single word. Those who exceed the often very narrow limits of resilience must expect a temporary or even permanent deterioration of their condition. Accordingly, activation therapies or even physical training have a harmful effect. Further symptoms concern neurological, immunological, cognitive, sensory and autonomous areas. Many ME patients suffer from pronounced pain symptoms.

Thousands of studies have proven the biomedical anomalies of ME patients. Some of them are listed e.g. here or here or also here.

Course of the disease

The disease can be cyclic, relapsing or progressive. The severity of the disease varies. Those affected can be mild, moderate, severe, very severe or even life-threatening. In mild patients the activity is reduced by approx. 50%. As a rule, they can still work, go to school or study, but cannot participate in leisure activities. These patients are often afflicted by infections and therefore have many days of absence. Moderately affected people usually have to give up their jobs, are severely restricted in their mobility and need many breaks to cope with everyday life. The quality of life of moderately ill patients is far below that of older patients with chronic heart failure and lung transplant patients. Moderately affected people are also seriously ill.

Mild and moderately ill ME patients showed such poor oxygen uptake (VO2 max) under stress that almost half of them would be considered moderately to severely disabled according to the guidelines of the American Medical Association.

Those seriously affected - about 10% to 25% of the patients - are bedridden most of the day and rarely able to leave the house. They need a wheelchair for longer distances and have massive cognitive problems. Seriously ill people - approx. 1-2% - are completely bedridden, unable to take the simplest personal hygiene measures and unable to eat and drink independently. Extremely severe forms of the disease can lead to seizures, paralysis, spasticity, incontinence and life-threatening complications.

Can you die of ME?
The disease can also be fatal. A prominent example is Brynmor John, a British Member of Parliament with ME, who suddenly collapsed and died on 13 December 1988 when he left the gym of the House of Commons after being advised to exercise to get back in shape. Another known death is that of Sophia Mirza. Some deaths are also on this list.

Most often the cause of death is progressive degeneration of the terminal organs, especially heart failure, pancreatic failure or kidney failure. Deadly cancers also occur in a remarkably high number of ME patients. The death age of ME patients with cancer is more than 20 years below the average death age of other cancer patients. In heart failure, the average age at death of ME patients is almost 25 years lower. As with all serious chronic diseases, the suicide rate is also increased.

According to a study that analysed the causes of death of deceased ME patients, both suicide and heart failure are at the top of the list with 20% each, cancer with 19% and complications caused by ME (such as life-threatening infections, drug intolerances, etc.) with 11%. The average age at death of ME patients is considerably lower than that of the general population.

How many people fall ill?
According to estimates by the Federal Ministry of Health, there are about 300,000 "CFS" patients in Germany. That is far more than HIV-infected people. According to conservative estimates, there would still be 200,000 people suffering from CFS, as many as those suffering from multiple sclerosis. Myalgic encephalomyelitis has developed from a disease that in 1959 was "numerically not important at the national level" to one of the "most common chronic diseases of young and medieval adults" in western industrial nations.*

* Johnson, Hillary Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, S. 203, Penguin Books 1997.
Translated with www.DeepL.com/Translator
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Who falls ill?
The disease can affect anyone. It affects all ethnic groups and people of all socio-economic strata, as well as all age groups, including children. According to a large Norwegian study, people between 10 and 19 years of age and between 30 and 39 years of age are the most affected. According to a British study, 51% of pupils with long absences suffer from ME.

Women suffer from ME two to four times as often as men. The reasons discussed for the higher prevalence rate among women are their lower blood volume and reduced mass of blood cells, and the weakening of Th1 immunity by the female sex hormone estrogen. These factors seem to favour the development of ME.

What is the medical care for ME patients like?
Because the disease is trivialized, psychopathologized or even denied, the patients do not receive adequate medical care. Only a few patients are correctly diagnosed, as there are hardly any doctors who are familiar with the clinical picture. Many bedridden seriously ill patients who are no longer mobile lack the urgently needed general practitioner care. Patients who are still able to call on medical help are usually met by practitioners who, out of ignorance, give them psychiatric false treatment such as activation. Meaningful therapeutic measures to alleviate symptoms are unknown to most physicians. Effective treatments that would lead to remission or even healing are still not available.

Many ME patients have to endure a quality of life for years or decades that is comparable to that of AIDS and cancer patients in the final stages - without adequate medical care.

What are the evidence-based therapy recommendations for ME?
The German Society of General Medicine (DEGAM) considers myalgic encephalomyelitis or "chronic fatigue syndrome", as it calls it, to be a disorder of well-being or behaviour contrary to the WHO classification. Accordingly, in DEGAM guideline no. 2 "Fatigue", which also contains the treatment guidelines for "CFS" patients, only general health tips for activating the patients are given, which are based on psychiatric treatment recommendations. The poorly researched report of the Robert Koch Institute on "CFS" contains the same recommendations. The same applies to the S 3 guideline of the Working Group of the Scientific Medical Societies, which classifies "CFS" and "ME" as "non-specific, functional and somatoform body complaints".

These psychiatric recommendations are mainly based on the so-called PACE trial, a British study that declared cognitive behavioural therapy (CBT) and graded exercise therapy (GET) promising. However, such therapies are potentially harmful for ME patients, as various studies have shown.

But even without knowledge of these studies, it is obvious that an organic disease, the core symptom of which is pathological exhaustibility of the musculature with the consequence of a neuroimmune deterioration of condition after exercise, can neither be treated with activation nor with denial of the conviction of suffering from an organic disease. One would not think of treating other organic diseases such as cancer or AIDS primarily and exclusively with activation and/or cognitive behavioural therapy!

Why the data of the PACE trial have come under international criticism and why the authors of the study refuse to anonymize their! data, you can read here, here and here as well as here, here, here and here and here.

What about research in Germany?
In Germany, ME and "CFS" are psychopathologized contrary to the legally binding classification of the WHO and the 5th Social Code. The biomedical anomalies of the disease are denied, an organic cause of the disease is not even considered. The medical guidelines of DEGAM and AWMF, the guidelines of DRV as well as statements of medicaDisadvantage and discrimination of chronically ill womenl chambers and health insurers document that Germany lags decades behind the international research standards for ME.

The results of the international ME research are hardly taken note of in Germany and do not flow into the medical basic and advanced training. Germany itself has not yet spent any public funds on ME research.

One reason why our German health system either denies ME or "CFS", trivialises it or declares it a mental illness may be the high costs involved in researching the disease and developing effective treatment. But the economic damage resulting from this ignorance is immense.

Translated with www.DeepL.com/Translator
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Part II
How high is the economic damage estimated?
No figures are available for Germany. An American study calculated the total annual cost of lost productivity - not including the cost of medical treatment - at 9.1 billion dollars. At the time the study was conducted, this was more than the final profit of Waldmart, the largest company in the world at the time.

Another 2008 study, which included direct and indirect costs, came to the vertiginous sum of nearly $24 billion that "ME/CFS" costs American society each year. If this is converted to the estimated prevalence figures for Germany, our annual loss would be between five and nine billion euros.

Effectively treated ME patients, who would recover and be reintegrated into the production process, would generate the costs for medical research and treatment within a very short time and could also contribute significantly to the increase in the gross national product.
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Social isolation
The majority of the patients live in social isolation. Seriously ill people often vegetate for decades without adequate medical care, abandoned by helpless, overburdened and uninformed doctors, suspected or mocked by experts, frequently excluded from the social systems and often even abandoned by friends and relatives. Often too ill to leave home or bed, to receive visitors or even just to make a phone call, these people become lonely and gradually disappear from the scene.

But even those who would still be able to maintain contacts are often put on the social sidelines. The trivialisation of terms such as "chronic fatigue syndrome" or "fatigue syndrome" makes a not insignificant contribution to this. They suggest that these are not symptoms with a disease value, but only sensitivities that healthy people also experience. Social acceptance is correspondingly low. Those affected are often socially ostracized and labelled as lazy, hypochondriac, hysterical, behavioural, mentally ill, crazy and as social parasites and simulators. The helpfulness of the few remaining friends often decreases noticeably when they realize that the patient's condition does not improve and that ME is actually a chronic disease with no chance of recovery.

However, many ME patients are largely excluded from social participation, to which disabled people have a legal claim, due to their special neurological symptoms. An Australian study impressively documented the social isolation of those affected. Danish researchers examined the quality of life of "ME/CFS" patients and compared it with that of patients suffering from 20 other serious illnesses. ME/CFS" patients had by far the lowest average quality of life. Even patients with chronic kidney failure, stroke and cancer had a higher quality of life. An American study came to the same conclusion 20 years ago. The situation of the patients has therefore not improved in the slightest since then.
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Financial misery
The majority of the patients are in financial difficulties. Most of them are unable to work due to illness, they depend on the financial support of their family or partner, or they live on a reduced earning capacity pension or basic security. Private medical consultations, expensive laboratory diagnostics, treatments with high-quality dietary supplements or other therapy attempts have often swallowed up all the savings. Once the last financial resources have been used up, the patients can no longer afford visits to the mostly privately practicing specialists and must also do without urgently needed food supplements and organic food.

The housing situation of many sick people is precarious. They need a low-noise, low-emission and low-pollutant environment. A removal is however usually neither financially nor strength-wise to be stemmed.

Diseases of unclear aetiology offer social security institutions the greatest possible savings potential. As long as the Federal Joint Committee has not recognised a service (e.g. a laboratory service or a treatment method), it is not financed by the statutory health insurance funds. If the service and treatment method do not correspond to the "generally recognised state of medical knowledge", the costs are charged to the patient. If the ME patient refuses to take part in certain rehabilitation measures, such as step-by-step increased activity training (GET), which promises therapeutic benefits according to the current standards of quality assurance, but in reality harms the patient, he or she may be denied retirement or social benefits may be reduced or even withdrawn.

ME or "CFS" is probably one of the few diseases - if not the only one - where patients are offered rehabilitation instead of medical treatment. As a rule, however, rehab must be preceded by medical therapy. Exactly this is withheld from ME patients by our health system.

The DRV classifies ME or "CFS" as a psychiatric disease. As a result, DRV patients are assessed by psychiatrists - even though they suffer from a disease whose biomedical anomalies most psychiatrists do not understand at all.

Many disability insurances also include a so-called "psycho-clause" according to which the insurer does not have to provide benefits in the event of mental illness of the insured. In this way, pensions are saved and ME patients are driven into poverty.

Translated with www.DeepL.com/Translator
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Part III
Disadvantage and discrimination of chronically ill women
ME meets men, women and children. But most of the sick are women. If women who suffer from a chronic disease of unknown origin are denied biomedical research into their disease and the development of drug therapies, there is a clear case of discrimination.

If doctors, reviewers and authorities do not take women's physical complaints seriously and deny them their disease value, we are dealing with discrimination. Those who label people who suffer from an organically classified disease as hysterical or hypochondriac, behavioural or simulant and social parasite, and who do not adequately examine and treat them medically, are guilty of discrimination and stigmatisation.
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(edit: former version contained wrong paragraph -- now fixed)
Also those who declare patients mentally ill, even though they suffer from an organic disease, are stigmatizing them. Because psychopathologization is not based on scientific findings that would be linked to the development of effective therapies. It is by no means operated for the benefit of the patient, but serves solely to reduce the costs of health and pension funds. Anyone who trivialises chronic fatigue or exhaustion and does not take note of the core symptoms of the disease contributes to the stigmatisation of the sick. The term "Chronic Fatigue Syndrome" or "CFS" is also stigmatizing because the name suggests proximity to psychiatric diseases and encourages confusion with them.

In the meantime, there are clear indications that the number of patients is steadily increasing. It is mainly younger women who suffer from ME. Women who are still in the middle of their studies or training or who are just starting their careers. Or women who have already started a promising career. Women who want to have children or are already in the middle of family planning. The disease is destroying the plans of all these women and is wiping out potential service providers in society.

In Germany, we have an efficient health system that is the envy of people from many nations. The discrimination of chronically ill, disabled women, however, does great harm to the reputation of our health system. The same applies to the discrimination and stigmatisation of a large group of seriously ill people, regardless of gender, age, education or income. Do not forget: the disease can affect anyone! That is why you, the politicians and the representatives of our health care system should join us in standing up for us ME patients.

Please sign!

Translated with www.DeepL.com/Translator
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Translated with www.DeepL.com/Translator
 
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Only have energy left for one comment:

I think the argument that labeling ME as a mental or psychiatric illness stigmatizes pwME is a bad one. It's true that mental/ psychiatric illnesses are still being stigmatized. This can IMO only be addressed by rejecting the stigma. To use the argument that the stigma is unjust for pwME does mentally ill people an injustice. What I think all patients and medical professionals have to object to is that a medical (including psychiatric/ mental illness) diagnosis per se can be a stigma, regardless which type of diagnosis it is. But what we have to fight against with regard to ME is to be given a wrong diagnosis because it is wrong, not because it's a psychiatric diagnosis.

(Back to having a forum break :ill: )

[edited for clarity]
 
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MSEsperanza said:
The starter of the petition seems to approve this research, though.
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She does.

As I said, I think there are weaknesses. I don't agree with everything and I could critisize and call for changes. But I think the action is more important than being absolutely correct (in a scientifically sense) - we don't have much action in Germany. The demands are reasonable. The petition doesn't demand that ME be accepted to be a retroviral disease. I wouldn't have signed that. I can overlook imperfections in cases such as these. Sometimes we have to take what is offered - or make it better. And honestly, I can't. So taken everything together it's ok. Could be better, but could be worse too.

I simply didn't have the energy to translate everything. It already was pretty much. :) Maybe someone else has the strength to do it.

Edit: Oh thank you @MSEsperanza! :)
 
MSEsperanza said:
I think the argument that labeling ME as a mental or psychiatric illness stigmatizes pwME is a bad one.
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For me, the center of the petition was around discrimination. I realize that everybody may read out something differently.

Fact is ME is psychopathologized in Germany - see Henningsen at the 4th Columbia Psychosomatic Conference last year who said that CFS is a cultural phenomenom that is rare in Germany. See all the guidelines. See the replies to letters. And so on. I also thought about the choice of "psychopathologizing campaign", which might be difficult. Having Osler's Web in mind and the regular media campaigns, the latest one not long ago, "campaign" is correct. Considering who's leading that campaign and what the consequences are, I can agree with "psychopathologizing". One could discuss about the PR effectiveness of such words..But one shouldn't forget the bigger picture. If shortcomings and bigger picture have an OK balance, I can overlook the shortcomings. This is everybody's own decision.

I agree that the stigma that goes with a psychiatric diagnosis needs to disappear. There are people who work on that, sadly without success. (Seems like the stigma wants to be kept...) But it is also (scientifically) incorrect to state as a fact that ME is psychiatric. And in Germany, that's how it is. For German politics ME IS psychosomatic. And for German politics, that comes with stigma AND false treatments.

We mustn't fall into the trap that is laid by the "PACErs" - we have every right to say things clearly. We experience mistreatment, discrimination and a lot of harm. Most pwME get no disability help or fight like crazy for it, with the known consequences. We shouldn't be too fearful to say this, but be more confident.
Just my personal opinion.

Edit:
MSEsperanza said:
But what we have to fight against with regard to ME is to be given a wrong diagnosis because it is wrong, not because it's a psychiatric diagnosis.
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I agree that needs to be made clearer. Sometimes I think that is so clear for pwME, that if they say "ME is not psychiatric" they actually say "we know it is biomedical" so "ME is psychiatric" is thought of as simply incorrect, not in the sense of "I don't want a psychiatric label" (which, considering the stigma problem, would be quite reasonable).
 
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