News from Germany

[Jonathan Edwards]

Off-label use is use outside of the license that the drug has. In the UK formal approval for use of drugs for off-label indications would be via the commissioners. So either the ICBs or NHS England (for drugs used in specialised services). An example of the later would be the clinical commissioning policy for anakinra for HLH.

So this is essentially a budget decision rather than anything else.

Approval for rare diseases tends to be an exception because trials are not feasible.

But for more common things all these various levels of 'approval' make for both confusion and resentment.

 

[paywalw]

So this is essentially a budget decision rather than anything else.

Approval for rare diseases tends to be an exception because trials are not feasible.

But for more common things all these various levels of 'approval' make for both confusion and resentment.

It is about budgets, yes, because there is only a limited amount of money and the aim is to provide the maximum health benefit for the population for the money available. It would be nice to have more but that's a decision of the government unfortunately. But also the aim is to ensure that treatments are evidence based as much as possible, and also to ensure that all appropriate patients have access to the same care to prevent some getting worse care than others.

 

[Jonathan Edwards]

But also the aim is to ensure that treatments are evidence based as much as possible

Yes, but having a system that approves beyond evidence that is adequate for a formal indication runs the risk with conditions like ME/CFS of perpetuating the lack of evidence-gathering. One can argue that if a health system is sufficiently convinced that a drug should be approved for a condition when there is no reliable evidence it should commit itself to making sure that evidence is gathered as soon as possible. Either the softer evidence is enough to justify a proper trial or it is not enough to justify a formal budget approval.

The inclusion of agomelatin seems very strange. It has never even been discussed in UK working groups.

 

[Chandelier]

Unsichtbare Symptome durchsetzen: Ihre Frage an die Experten

Unsichtbare Symptome durchsetzen: Ihre Frage an die Experten

nord.vdk.de

The VdK is asking for your questions and experiences with invisible symptoms for an upcoming podcast:

Making invisible symptoms count

Anyone living with invisible symptoms knows the situation: their limitations are underestimated and not adequately taken into account in recognition proceedings. How can these impairments be convincingly documented? Where can people find experienced doctors and appropriate treatment options? And what can help them assert their social-law entitlements? The Social Association VdK Nord will address these questions in a video podcast produced in collaboration with the German Multiple Sclerosis Society (DMSG), Schleswig-Holstein, and the Hamburg regional group of Fatigatio e.V., the patient organization for people with ME/CFS.

What’s on your mind? Submit your questions for our video podcast using the form below by October 20. Experts in social law and neurology, along with representatives of patient organizations, will answer selected questions and share insights from their day-to-day work.

Please note: Individual advice cannot be provided in this format. Your name will not be mentioned in the podcast.

Spoiler: German Text

Unsichtbare Symptome durchsetzen​

Wer mit unsichtbaren Symptomen leben muss, kennt die Situation: Die Einschränkungen werden unterschätzt und in Anerkennungsverfahren nicht ausreichend berücksichtigt. Wie lassen sich die Beeinträchtigungen überzeugend darlegen? Wo findet man erfahrene Ärztinnen und Ärzte sowie geeignete Behandlungsmöglichkeiten? Und was hilft bei der Durchsetzung sozialrechtlicher Ansprüche? Darüber will der Sozialverband VdK Nord in einem Video-Podcast in Zusammenarbeit mit der Externer Linkeutschen Multiple Sklerose Gesellschaft (DMSG) Schleswig-Holstein und der Externer Link:Regionalgruppe Hamburg des Fatigatio e.V., der Patientenorganisation für Menschen mit ME/CFS, informieren.

Was beschäftigt Sie? Bringen Sie Ihre Fragen für unseren Video-Podcast bis zum 20. Oktober über das untenstehende Formular ein! Expertinnen und Experten aus Sozialrecht, Neurologie und Patientenorganisation beantworten im Video-Podcast ausgewählte Fragen und teilen ihre Erfahrungen aus der täglichen Praxis.

Bitte beachten Sie: Eine individuelle Beratung kann in diesem Rahmen nicht erfolgen. Ihr Name wird im Podcast nicht genannt.

 

[Chandelier]

From Bluesky:

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Mirja Nicolas @privilegienschreck.bsky.social

In this six-page article (dating back to August) on the so-called "pandemic review," there is exactly one—in numbers: 1 (!)—sentence on Long COVID. Not a single one on ME/CFS. And for some reason, people, nearly all of whom now know someone affected in their social environment, don't feel collectively mocked.

From a social-psychological standpoint, I find this absolutely surreal.
​

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Spoiler: German

In diesem 6-seitigen Artikel (bereits aus August) zur sog. „Pandemieaufarbeitung“ ist genau ein (in Zahlen: 1 (!)) Satz zu Long COVID. Kein einziger zu ME/CFS. Und aus irgendeinem Grund fühlen sich Menschen, die inzwischen fast alle Betroffene im sozialen Umfeld haben, nicht kollektiv verarscht.

Ich finde das sozialpsychologisch betrachtet schlichtweg abgefahren.

Pandemieaufarbeitung: Nächstes Mal besser reagieren – Deutsches Ärzteblatt

www.aerzteblatt.de

 

[Yann04]

VdK

As far as I understand this is one of the biggest associations for like vulnerable people in Germany. It’s a non-profit style thing so not government.

 

[Chandelier]

The German Association for Psychiatry, Psychotherapy and Psychosomatics (DGPPN) will hold a symposium at their upcoming congress in November called:
“Who Develops Post-COVID?”

Very good news: a symposium on ME/CFS by Schomerus et al. is met with rapidly increasing interest from German psych professionals.

From Bluesky:

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Ronja Büchner @buechnerronja.bsky.social​

​

In addition to the severe damage inflicted, I find the oversimplified 'pop psychology' proclaimed by proponents of psychosomatics—and the smugness with which they do so—to be utterly embarrassing.​

​

​

This alone should compel all principled professionals in the field of psychology and psychiatry to take a stand. This is an objective I intend to pursue.​

​

Regardless, the venue for our symposium at the #DGPPN [German Association for Psychiatry, Psychotherapy and Psychosomatics] is approximately six times larger this year than it was previously. Furthermore, it will almost certainly be broadcast to those not attending the congress, ensuring that our message will be heard.​

​

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Spoiler: German

Neben dem ganzen furchtbaren Schaden, finde ich das auch immer wieder so peinlich, was für eine vereinfachte Küchenpsychologie die Freund*innen der Psychosomatik in die Welt posaunen und sich dabei ganz oberschlau vorkommen.

Allein schon deswegen müssten ja eigentlich alle anständigen PSYCH-Personen auf die Barrikaden gehen. Ich werde daran arbeiten

Der Saal für unser Symposium bei der #DGPPN ist dieses Jahr jedenfalls ungefähr 6 mal so groß wie letztes Jahr und übertragen wird es (für zum Kongress abgemeldete Personen) ziemlich sicher auch, also wir werden schwer zu überhören sein.

 

[rvallee]

The arbitrary separation of pre-COVID ME/CFS suggests, as expected, a rigged political process that is not concerned with outcomes, and is simply running out the clock. Hopefully it can be influenced in some ways to salvage a part of it, but the process remains completely rigged against the patients and objective reality.

As is tradition. I hate this tradition.

 

[Chandelier]

From Bluesky.
Machine Translation:

Dt. Ges. für ME/CFS @dgmecfs.bsky.social

#MECFS – People affected by ME/CFS are often denied access to essential social benefits and support services, such as disability pensions (reduced earning capacity) or care grades. In these situations, social associations such as the VdK provide legal assistance. Their volunteer guides dedicate part of their free time to advising individuals on health-related and social law issues.

To equip its guides with the necessary expertise to support those living with ME/CFS, VdK Baden-Württemberg invited the German Society for ME/CFS to deliver an online presentation. This provided an opportunity to raise awareness about the condition and share essential tips for the individual counseling of affected persons.

We would like to thank VdK Baden-Württemberg for the invitation and the constructive exchange!

Link to the post: https://www.mecfs.de/vortrag-beim-vdk-bawue [Google Translate link.]