Germany: ME/CFS in Germany

Pyrrhus

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You may remember the 2017 petition started by Katarina Voss that received almost 20,000 signatures:
Petition to Recognize ME in Germany
https://forums.phoenixrising.me/threads/petition-to-recognize-me-in-germany.50599/

Well, a new petition from Jannik Mebus is circulating asking for research and better medical care for ME patients in Germany:
https://www.change.org/p/manfred-lu...schung-medizinische-versorgung?redirect=false

Unfortunately, the petition is not promoted by the main patient groups in Germany.

Here is an excerpt from the petition, translated by DeepL.com:
Unfortunately, there is no medical care for the approximately 240,000 people suffering from Myalgic Encephalomyelitis (ME) in Germany. The disease is also trivialized as Chronic Fatigue Syndrome (CFS) or as ME/CFS.

Although the disease has been recognized by the WHO (ICD-10 G93.3) since 1969, ME is still not taught in medical studies, so most doctors do not know it at all, and therefore cannot help or even recommend harmful therapies based on false information.

Currently, there is only a specialized contact point at the Charité Berlin, but due to the large number of patients, only patients from Berlin/Brandenburg can be diagnosed there! Important: they only diagnose, unfortunately the patient cannot expect a helpful therapy.

The contact point of Prof. Behrends at the Munich Clinic Schwabing is only responsible for young people.

That means: there are currently no contact points for most patients in Germany. The situation is therefore catastrophic for those affected, which also explains why many patients are wrongly diagnosed with burnout/depression, resulting in harmful therapy attempts that do not help the patient but allow the disease to progress.

The main symptom in ME is the so-called PENE (Postexertional neuroimmune exhaustion): This describes "the pathological inability to produce sufficient energy when needed with pronounced neuroimmunological symptoms".1
People with ME experience massive physical exhaustion, which cannot be eliminated by resting. Even the slightest physical or mental effort (e.g. brushing teeth, short conversation) leads to immediate or delayed (24-48h) exhaustion and intensification of all symptoms, e.g. chronic pain. Existing painkillers, even morphine, often do not help sufficiently.

About 25% (about 75,000 in Germany) of the patients (including children!) are so severely affected by the disease that they are unable to leave their homes or beds. This means that such cases sometimes require years of care, mostly until the end of their lives.

Especially severe cases are bedridden for 24 hours, even the slightest movement leads to PENE, they do not tolerate any light, noise or touch and sometimes even have to be fed artificially. They are no longer capable of any physical or mental activity.

In order for doctors not to harm ME patients, they must be correctly informed about ME. The "MYALGIC ENZEPHALOMYELITIS International Consensus Guideline for Physicians" (ME IC Guideline) developed by ME specialists is suitable for this purpose. It contains strict diagnostic criteria (the ICC) and information for physicians (e.g. which blood tests show abnormalities). It can be downloaded here free of charge: www.t1p.de/meicleitlinie

The ME IC guideline lists, among other things, diseases that can cause similar symptoms to ME and which must be excluded (differential diagnosis). In the case of primary psychiatric disorders, an ME diagnosis according to the IC guideline is excluded. This is very important so that the test persons are correctly selected in studies and not people with, for example, purely psychiatric illnesses, who are inadvertently mixed in with them, so that the study does not provide a helpful result for people with ME. However, this is also important so that false diagnoses are avoided.

The experts for care levels/pension insurance, etc. must also be properly informed so that the stigma is eliminated and those affected receive care appropriate to the severity of the disease. Due to the missing or wrong information it is currently very difficult for affected persons to obtain an aid such as a wheelchair.

Stays in hospital, e.g. for the clarification of other diseases, are at present in most cases connected with worsening of the disease condition, since the physicians/nurses are not informed about ME there and therefore e.g. do not consider the light and noise sensitivity of the patients.

Simple blood counts are usually completely inconspicuous in ME patients, which unfortunately often means that no further specific tests are performed.

The current guidelines of AWMF, Degam and DRV are unfortunately a source of suffering for ME patients. In order to really help patients, new guidelines for Myalgic Encephalomyelitis must be developed based on the 2011 International Consensus Criteria for ME and the 2012 ME IC Guideline.

Due to the extremely poor research and the complete lack of funding in Germany, there is not a single approved drug for the treatment of ME. Due to the lack of research funding, patients have recently had to collect donations for research themselves! Therefore, it is essential that funds are made available for independent biomedical research.
 

Pyrrhus

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More information from German politician Erich Irlstorfer (via Facebook 27 November)

So it looks like two of the main patient organizations "Deutsche Gesellschaft für ME/CFS" and "Fatigatio e.V." were involved in this effort!

Good News for ME/CFS

At yesterday's session of the Budget Committee of the German Bundestag, our funding application was presented in cooperation with Ms. Prof. Behrends, TU Munich, Ms. Prof. Scheibenbogen, and Charité Berlin, and was approved! A total of 900,000 euros will therefore go into the construction of a ME/CFS register and a biobank with the evaluation of data for affected parties. Both children and adolescents as well as adults and post-Covid19 patients will be included in these processes.

I would like to thank everyone who contributed here - especially the committed affected people, the relatives and the parents!
___
Josef Rief
Prof. Dr. Claudia Schmidtke
Jens Spahn
Sebastian Brehm
Sabine Weiss
Bundesministerium für Gesundheit
Charité - Universitätsmedizin Berlin
Deutsche Gesellschaft für ME/CFS
Fatigatio e.V.
 

Cinders66

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Well done on the petition. I’m a big fan of patient movement

two points
1) I’m interested in the prevalence stats which are lower than the ones used in the uk considering higher size of population but not so low, i was wondering how they were reached ?
2) the reason I personally don’t like PENE and prefer PEM is that it conveys that we are ill not tired. In the petition theres references to PENE, exhaustion, certain symptoms like pain but to me doesn’t convey that we are ill. For me ME was always about remaining ill after infection, not primary energy deficiency ( I appreciate ME is heterogeneous) although obviously part of the physical sickness symptoms of being ill are having an energy shut down.

I hope that it moves things forward in Germany. Funny how the main features - an Illness affecting quite large numbers, excluded from medical education, invisibilised and neglected seem universal. The key to unlocking us surely is to make us so visible we are an embarrassment to those who are failing their basic duty of care in caring for each citizen.
 

Pyrrhus

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There is a history of the different patient groups in Germany not agreeing on things.

Therefore, it was nice to see the following in a Facebook post from the German patient group "Lost Voices Stiftung":
Lost Voices Stiftung said:
On December 10., for the first time there was a discussion between the patient organizations Deutsche Gesellschaft für ME/CFS, Fatigatio e.V. e.V. Federal Association ME / CFS, Lost Voices Stiftung and #MillionsMissing Germany and Vertreter:innen of the Bundesministerium für Gesundheit , the Bundesministerium für Bildung und Forschung and the Federal Patient Officer.

The occasion was the open letter that the patient organizations jointly addressed to the ministries following the EU resolution on ME / CFS and the multiple requests to MPs for improved medical and social care for ME / CFS patients.

Ministries agreed that ME / CFS is an important condition and needs action. Likewise, through the EU resolution, the many activities of those affected and organizations, awareness about ME / CFS has increased significantly in politics. There was a common agreement that a significant improvement in the supply situation should be achieved as quickly as possible.
 
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Pyrrhus

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A good news piece today in a high-profile German magazine "Das Erste":
Covers both ME and Long Covid well.

Corona-Langzeitfolgen: Schwere Versorgungsmängel beim Chronischen Fatigue Syndrom
https://www1.wdr.de/daserste/monitor/sendungen/chronisches-fatigue-syndrom-100.html

Translation:
Corona long-term sequelae: Severe Care Deficiencies in Chronic Fatigue Syndrome.

Das Erste said:
Georg Restle:
“There are now studies that show that younger people in particular; who did not even have particularly strong symptoms, suffer from a secondary disease of COVID-19 that makes a normal life practically impossible for them. Some could even become permanent need for care. This disease is called chronic fatigue syndrome. Long underestimated in Germany and never really recognized. At the expense of hundreds of thousands who have felt abandoned for decades. Elke Brandstätter and Lisa Seemann. "

Lennart Lutz:
“Somehow, 5 years ago, I would have been asked that a quarter of a million people have a disease that doctors are not aware of and for which there is no care, I could not have imagined. I can't work at all. I also need help every day. That means my parents have to cook for me, pick up my son, and take me to the doctors. Yes, actually everything. "

Until a few years ago, Lennart Lutz was still in the middle of life. Studied, became a father. Suddenly it started, he had one infection after the other, flu even in summer. The symptoms remained permanent and he did not recover. It was a long way before his GP diagnosed him with ME / CFS - or Chronic Fatigue Syndrome. A complicated name for a disease that consists primarily of being unable to do anything - permanent, severe exhaustion.
 
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Pyrrhus

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...and another petition, this one from Suzanne Ritter.

ME/CFS CHRONISCHES ERSCHÖPFUNGSSYNDROM ANERKENNEN UND VERSORGUNGSHILFE LEISTEN!
https://www.openpetition.de/petitio...ndrom-anerkennen-und-versorgungshilfe-leisten

Translation:
RECOGNIZE ME/CFS CHRONIC FATIGUE SYNDROME AND PROVIDE CARE!

Suzanne Ritter said:
ME/CFS G 93.3 should finally be recognized as what has existed in the WHO since 1969. As a neuroimmunologic severe multisystem disease.

Reason

Because none of the ill people get the care and the recognition of this severe disease and have to struggle with disability or disability pension. Parents sick children and teenagers with offices and courts. It is reactive no matter which virus or infection was the trigger for it, importantly only that all ill carry physical exhaustion of it. Whether Covid, Sars, EBV or whatever. How are all without recognition and help of the health policy, this must urgently change!
 

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The Deutsche Gesellschaft für ME/CFS recently hosted a course on ME/cfs for almost 400 German-speaker doctors:

Online training on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) for healthcare professionals
https://www.mecfs.de/online-fortbildung-zu-me-cfs-fuer-medizinisches-fachpersonal/

Excerpt:
Deutsche Gesellschaft fuer ME/CFS said:
On February 10th, 2021, from 5 to 7 p.m., an online training event on the subject of myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS) took place. The scientific director was Prof. Dr. Carmen Scheibenbogen (Charité Berlin). The German Society for ME / CFS eV provided organizational support for the event. Almost 400 doctors and other members of the medical staff from Germany, Austria and Switzerland took part. Sebastian Musch, Chairman of the German Society for ME / CFS, hosted the event.
 

Pyrrhus

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On May 12, there was a great news segment by Germany's national public television broadcaster, including an interview with Dr. Carmen Scheibenbogen:

Chronically exhausted: ME/CFS Serious nervous system disease
https://www.zdf.de/verbraucher/voll...ndrom-als-post-covid-folgeerkrankung-100.html

Excerpt:
zdf.de said:
ME / CFS is a terrible ordeal for those affected, but is still fairly unexplored. But with the coronavirus, this disease is moving more into the public focus, because it can occur as a secondary disease with the post-COVID syndrome.

Not being able to, although you want to - no energy, for nothing. Even the smallest of errands is often like running a marathon. Many people who are suffering from ME / CFS can no longer go about their everyday life, no longer work, no longer pursue hobbies, no longer manage their household.
[...]
ME / CFS stands for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. According to estimates, up to 250,000 people are affected in Germany, including 40,000 children.

In addition to the absolute lack of strength, headaches and dizziness, difficulty concentrating, word-finding disorders and a general feeling of illness are side effects of the disease. In some cases so bad that those affected are dependent on a wheelchair or even bedridden.
 

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#MillionsMissing Germany has organized a postcard campaign. For international ME Awareness Day, pwME and allies will send postcards to the parliaments of the 16 federal states. The campaign is supported by all German patient organizations.

https://www.millionsmissing.de/mmdpostkartenaktion2021
Millions Missing Germany has posted the responses from some of the states:
https://www.facebook.com/mmissinggermany/photos/a.1849387475359332/2676224206008984/

To date, we have received feedback from 9 states (Berlin, Brandenburg, Hessia, Lower Saxony, North Rhine-Westphalia, Saxony, Saxony-Anhalt, Bavaria and Schleswig-Holstein).

Some states have converted our letter directly into a petition, others have considered petition entry and sent it to the Petitions Committee. The other countries have forwarded it to the responsible members of the respective health committees and the factions of the state days.

Some answers also mention the postcards that affected people have sent to their parliaments. Thus, the state parliament in North Rhine-Westphalia received about 180 postcards delivered to the health committee. Also in Saxony ′′numerous postcards′′ were received, here's an excerpt from the reply letter:

′′The explanations make a lot of impact and show what research gaps still exist despite the enormous medical progress in recent decades. In this respect, I personally welcome the fact that your initiative has addressed the national parliaments on the occasion of International ME/CFS Day to draw attention to the situation of those affected and to specific measures to improve the medical and social care of those suffering from ME/CFS." Dr. Matthias Rößler, President of the Parliament of Saxony.

[...]

Politics are starting to deal with ME/CFS. Here are just three examples:

June 4.: Unanimous acceptance of the FDP and CDU application in the Thuringian Parliament to prioritize the research and treatment of Long Covid and ME / CFS, among other things by the establishment of a Central German Research Centre.

June 7.: The Bundestag Health Committee addresses Long Covid and ME / CFS as a possible long-term consequence in a public hearing. Our current basic paper was before every member of the Health Committee. #MillionsMissing Germany followed the hearing on the live stream. The recording of the meeting can be accessed at http://bit.ly/bundestagMECFS

June 10.: Hearing at the Health Committee of the North Rhine-Westphalia Parliament on the topic ME / CFS ′′ Situation of patients with Myalgic encephalomyelitis / Chronic exhaustion syndrome in North Rhine-Westphalia ".
 

Pyrrhus

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New publication:

Medical Care Situation of People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Germany (Froehlich et al., 2021)
https://www.mdpi.com/1648-9144/57/7/646

Excerpt:
Background and Objective:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a severe illness with the hallmark symptom of Post-Exertional Malaise (PEM). Currently, no biomarkers or established diagnostic tests for ME/CFS exist. In Germany, it is estimated that over 300,000 people are affected by ME/CFS. Research from the United States and the UK shows that patients with ME/CFS are medically underserved, as they face barriers to medical care access and are dissatisfied with medical care. The first aim of the current research was to investigate whether patients with ME/CFS are medically underserved in Germany in terms of access to and satisfaction with medical care. Second, we aimed at providing a German-language version of the DePaul Symptom Questionnaire Short Form (DSQ-SF) as a tool for ME/CFS diagnostics and research in German-speaking countries.

Materials and Methods:
The current research conducted an online questionnaire study in Germany investigating the medical care situation of patients with ME/CFS. The questionnaire was completed by 499 participants who fulfilled the Canadian Consensus Criteria and reported PEM of 14 h or longer.

Results:
Participants frequently reported geographic and financial reasons for not using the available medical services. Furthermore, they reported low satisfaction with medical care by the physician they most frequently visited due to ME/CFS. The German version of the DSQ-SF showed good reliability, a one-factorial structure and construct validity, demonstrated by correlations with the SF-36 as a measure of functional status.

Conclusions:
Findings provide evidence that patients with ME/CFS in Germany are medically underserved. The German-language translation of the DSQ-SF provides a brief, reliable and valid instrument to assess ME/CFS symptoms to be used for research and clinical practice in German-speaking countries. Pathways to improve the medical care of patients with ME/CFS are discussed.
 

Pyrrhus

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More information from German politician Erich Irlstorfer (via Facebook 27 November)

So it looks like two of the main patient organizations "Deutsche Gesellschaft für ME/CFS" and "Fatigatio e.V." were involved in this effort!

German politician Erich Irlstorfer opens up about his struggle with Long COVID:


Long Covid: How a sick MP became active
https://www.tagesspiegel.de/politik...ankter-abgeordneter-aktiv-wurde/27496214.html

Excerpt:
Tagesspiegel said:
The CSU politician Erich Irlstorfer suffers from Long Covid. But he did not become passive. On the contrary: with an association he wants to help those affected.

January 3, 2021 changed a lot in the life of the CSU politician Erich Irlstorfer. On this day, the then 50-year-old was infected with Covid-19 while visiting his mother in a palliative care ward in Markt Wartenberg in Upper Bavaria - "despite the utmost precautionary measures", i.e. daily tests and regular protective clothing, as he emphasizes. Nine days later he was in the hospital with lung problems, a completely out of step blood pressure and a sharp drop in oxygen saturation. His mother had died of Covid-19 three days earlier. And the SARS-CoV-2 virus also hit the rest of the family: the woman, the 17-year-old daughter, the nine-year-old son.

Irlstorfer himself went to rehab for a few weeks , first as an outpatient, then as an inpatient. As before, the diabetic struggles against bouts of fatigue and concentration disorders. His antibody levels are just rising again. The immune system is also working at full speed in the others, so none of the family members can still be vaccinated.

Education and self-help
But all of this has not made the Freising member of the Bundestag and former AOK Bayern field representative into a passive person. On the contrary: Irlstorfer not only fights against his own illness, he also wants to help other sufferers. At the end of May he and 12 other colleagues founded an association called "ELIAS". The first name is an abbreviation, it stands for "Covid-19 sufferers and long-term injuries as well as their relatives for information, education and self-help".

In addition, the aim is to ensure that medical care for those affected is improved and that “cooperation between those affected, their relatives and doctors and scientists” is promoted, according to the statutes. First of all, it was “urgent” in Irlstorfer's constituency 214, ie the Upper Bavarian districts of Freising, Pfaffenhofen an der Ilm and Neuburg-Schrobenhausen. However, it was already heard at the founding meeting that the claim is more extensive. There are "thousands of people in Germany who are suffering from the long-term effects of Covid-19," emphasized the initiators. For them there is currently no approach to help "so that it becomes the way it was before". And the occurrence of fatigue syndrome (CFS / ME) is particularly problematic., from which around two percent of corona patients suffered...
 

Hajnalka

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