News from Germany
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Lisan_Al_Ghaib_87
Established Member
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TL/DR: Very Long Chain Acyl CoA Dehydrogenase Deficiency caused my CFS for 23 years. It messed up my mitochondrial function. Side note, also had an active EBV infection which caused POTs. I'm now "cured"
This reminds me a story posted on r/cfs some years ago.Paywalled.
Sie nimmt wieder am Leben teil: Ärztin mit ME/CFS macht Hoffnung
Eine Ärztin erkrankt nach einer Corona-Infektion so schwer an ME/CFS, dass sie nicht mehr allein essen und zur Toilette gehen kann. Doch dann entdeckt sie nach und nach, was ihr hilft. Nun will sie anderen Betroffenen Mut machen.www.faz.net
I‘m lacking the energy to summarize it properly. Here’s a short AI translated excerpt:
TL/DR: Very Long Chain Acyl CoA Dehydrogenase Deficiency caused my CFS for 23 years. It messed up my mitochondrial function. Side note, also had an active EBV infection which caused POTs. I'm now "cured"
Chandelier
Senior Member (Voting Rights)
Το
This reminds me a story posted on r/cfs some years ago.
TL/DR: Very Long Chain Acyl CoA Dehydrogenase Deficiency caused my CFS for 23 years. It messed up my mitochondrial function. Side note, also had an active EBV infection which caused POTs. I'm now "cured"
Yann04
Senior Member (Voting Rights)
Amazing. I’ve boosted the swiss ones. Don’t have energy to venture into the others. There’s also one in Vienna but idk if its been posted on reddit.
There's a copy of the FAZ article above on archive.org
It's a good and very interesting article and it's very important to understand the current understanding of ME/CFS in Germany to properly assess it. Thanks for posting.
There's absolutely no talk of full remission. The patient is again able to participate partially in family life. That's all. She will be able to travel to Holland to attend her child's wedding. She can see her grandchildren sometimes.
She can't go back to work.
What she's saying: she was severe and with a strict pacing and a special exercise technique called 30 seconds rule and below her exertion threshold and some changes in her nutrition she managed to become "a lot" better again. Like, she's a moderate now.
She has a very important point for new German severe patients. She says that patients shouldn't give up hope that they could improve somewhat again and gain a lot of life quality back. She's worried about the many assisted suicides among young adults especially who are severe but not for a long time at the moment in Germany and who think there's no chance for them to get better anymore.
My specialist was telling me exactly the same thing when I saw him for the first time. Over the years improvement is possible but there's no guarantee.
Her most important demand: Early diagnosis and information about pacing for the patients.
It's a good and very interesting article and it's very important to understand the current understanding of ME/CFS in Germany to properly assess it. Thanks for posting.
There's absolutely no talk of full remission. The patient is again able to participate partially in family life. That's all. She will be able to travel to Holland to attend her child's wedding. She can see her grandchildren sometimes.
She can't go back to work.
What she's saying: she was severe and with a strict pacing and a special exercise technique called 30 seconds rule and below her exertion threshold and some changes in her nutrition she managed to become "a lot" better again. Like, she's a moderate now.
She has a very important point for new German severe patients. She says that patients shouldn't give up hope that they could improve somewhat again and gain a lot of life quality back. She's worried about the many assisted suicides among young adults especially who are severe but not for a long time at the moment in Germany and who think there's no chance for them to get better anymore.
My specialist was telling me exactly the same thing when I saw him for the first time. Over the years improvement is possible but there's no guarantee.
Her most important demand: Early diagnosis and information about pacing for the patients.
Last edited:
Weil wir Englisch lieben!
Deutsches Ärzteblatt doesn't have a paywall. But you need to register with an email address. Thank you for posting the article! It's very interesting and it's also very good that some psychiatrists and psychologists are actively advocating to stop offering psychotherapy as a cure to patients.
Sounds interesting, but unfortunately behind a paywall.
Translation:
I was able to find the session details with some additional infos from the congress‘ website. Professor Schomerus seems involved as well:
Bettina Grande has been very active for many years. My impression was that she was more affected from working against the harmful denial and misinterpretation of ME as psychosomatic as I was as a patient. It's nice to see that she is now also working at Charité.
From what I have observed over the years Fatigatio does a lot of really good stuff. I think here someone just went off on a tangent – as it can happen to all of us.
Chronische Müdigkeit
Chronische Müdigkeit (Fatigue) ist ein häufiges Symptom, das verschiedene Ursachen haben oder Folge von psychischen sowie körperlichen Erkrankungen und deren Behandlungen sein kann.
www.usz.ch
Under the above link the Zurich University Hospital presents updated information on ME/CFS. Their understanding is somatic, at the same it is a psychiatrist, Sarah Schiebler, who is the head of the consultation offer but the department of internal medicine is apparently involved too.
They are at the moment looking for patients who are interested to participate in a study where Acceptance Commitment Therapy and an approach of "Breaks in Daily Activities" are offered in a group setting to learn to manage ME/CFS when at the same time blood and saliva samples are collected and severity of symptoms is being followed.
Group therapy sessions are weekly and last 90 minutes. Is is not clear whether the training is offered online or in person and what exactly they are looking at in lab tests is not being clearly communicated.
Erhebung der Effektivität von psychologischen Interventionen bei dem chronischen Müdigkeitssyndrom
Die Forschung zum Thema Schlafstörungen und chronischer Müdigkeit befasst sich schwergewichtig mit Untersuchungen zu Insomnien, Schlaf-Wach-Rhythmusstörungen bei körperlichen Erkrankungen sowie chronischen Müdigkeitssyndromen und dem Einfluss von verschiedenen psychologischen Therapieverfahren...
www.usz.ch
Comment: To have Sarah Schiebler as a ME/CFS specialist is a kind of a two edged sword. At the one hand it is great because it is one more specialist who diagnoses ME/CFS in Zurich. On the other hand they continue to use "Chronisches Müdigkeitssyndrom" extenesively even though that was exactly the concept to psychiatrise the syndrome.
Also, they are looking at two outcomes: One is life quality the other is somatic symptoms and they want to understand whether psychotherapy can help not only with life quality when living with a chronic illness but also whether psychotherapy can help with symptom reduction.
And we all know that this can lead to more pressure on patients to get physically better with psychotherapy.
They will follow up the patients for six months or one year.
Utsikt
Senior Member (Voting Rights)
Are they actually saying «learn to manage ME/CFS», and just that?
If they are looking at symptom improvements, it’s probably a treatment, and not just a management strategy.
What is the ACT supposed to be directed at? Are you accepting that you’re sick, or are you accepting that you get symptoms when doing too much, and that’s fine?
The findings of the CFS_CARE study:
NO improvement following rehabilitation specifically designed for people with ME.
A 44% deterioration.
As rehabilitation is often a mandatory requirement for disability benefits in Germany, all people with ME in Germany should be aware of this and make use of it!
There were several protests all over Germany, and more are planned leading up to May 12th.
"We make visible those that no one else sees": ME/CFS sufferers demand better care at last.
www.merkur.de
Munich – Sick people who can barely get out of bed want to become visible: Why patients and relatives now want to lie down on the streets and what urgently needs to change in the care system.
...
With an unusual form of protest – collectively lying down in public squares – those affected by ME/CFS and their families are drawing attention to the dramatic situation of people with the condition. Actions are planned in several Bavarian cities around International Day of Awareness on May 12th.
...
The #LiegendDemo initiative is organizing nationwide rallies to raise awareness about the serious illness ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Demonstrations are planned for Saturday, May 9th, in Munich, Nuremberg , Augsburg , Regensburg , and Würzburg. Another event is scheduled for May 16th in Schweinfurt.
"We make visible those that no one else sees": ME/CFS sufferers demand better care at last.
„Wir machen die sichtbar, die sonst niemand sieht“: ME/CFS-Betroffene fordern endlich bessere Versorgung
Über 600.000 ME/CFS-Erkrankte in Deutschland. In Bayern protestieren Betroffene und Angehörige mit Liegedemos für bessere Versorgung.
www.merkur.de
Munich – Sick people who can barely get out of bed want to become visible: Why patients and relatives now want to lie down on the streets and what urgently needs to change in the care system.
...
With an unusual form of protest – collectively lying down in public squares – those affected by ME/CFS and their families are drawing attention to the dramatic situation of people with the condition. Actions are planned in several Bavarian cities around International Day of Awareness on May 12th.
...
The #LiegendDemo initiative is organizing nationwide rallies to raise awareness about the serious illness ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Demonstrations are planned for Saturday, May 9th, in Munich, Nuremberg , Augsburg , Regensburg , and Würzburg. Another event is scheduled for May 16th in Schweinfurt.
Chandelier
Senior Member (Voting Rights)
Biologisches Altern: »Wir können mit einer Blutprobe das Alter Ihres Gehirns bestimmen«
Jeder fünfte Mensch hat ein Organ, das schneller altert als der Rest seines Körpers. Es ist ein Frühwarnsignal, sagt der Altersforscher Tony Wyss-Coray.
www.zeit.de
I wonder how very severe pwME would test compared to other bedridden populations of patients.
Krankheiten: Protest im Liegen: ME/CFS-Betroffene wollen sichtbar werden
Hier finden Sie Informationen zu dem Thema „Krankheiten“. Lesen Sie jetzt „Protest im Liegen: ME/CFS-Betroffene wollen sichtbar werden“.
www.zeit.de
dpa / Die Zeit coverage of ME/CFS awareness day in Germany.
Chandelier
Senior Member (Voting Rights)
Streit um Long Covid: „Nicht mit psychischen Störungen zu verwechseln“
Zwei Medizin-Fachgesellschaften warnen vor einer Bagatellisierung von Long Covid. Ihre Gegner: Neurologen, die psychogene Ursachen für die häufigen Langzeitfolgen der Corona-Infektionen verantwortlich machen wollen.
www.faz.net
Oscar220
Established Member
Archived version here.PaywalledStreit um Long Covid: „Nicht mit psychischen Störungen zu verwechseln“
Zwei Medizin-Fachgesellschaften warnen vor einer Bagatellisierung von Long Covid. Ihre Gegner: Neurologen, die psychogene Ursachen für die häufigen Langzeitfolgen der Corona-Infektionen verantwortlich machen wollen.