News from Germany

More than 2000 comments on the piece. A lot of patients etc. chiming in. Good to see.

 

Considerable visibility as noted by Solstice. Plenty of patients, family members and a couple of medics responding very positively in the YouTube comments (360,000 views, 2500 comments currently). Two auto-translated medical comments I noticed —

I am a family doctor and often feel helpless. The colleagues often tell the patients so much nonsense and present them as simulating hypochondriacs. You can do so little proven helpful, it is with each patient an individual try what helps and does good. The evidence is simple, except for a few things, pacing, avoiding crashes still so deficient. Rehabilitation can hardly be recommended for the reasons mentioned, but the payers push for it for a long period of time. Just like with physiotherapy, presentation to specialists, the medical principle of not to harm at first, is unfortunately often not followed and the patients suffer. Thank you for this post.

As an internist, I find it frightening when a professor of neurology explains symptoms as the cause or even the diagnosis of a disease. Where did he study medicine and why is he allowed to teach?

 

This article just appeared in my news feed ("Post-COVID Syndrome: Government-funded drug study gets underway"):

https://aktuelles.uni-frankfurt.de/...e-government-funded-drug-study-gets-underway/

It relates to a trial of vidofludimus, which is a dihydroorotate dehydrogenase inhibitor previously trialled in MS & which has also apparently been trialled in acute SARS-CoV-2 cases.

 

Cases of Long Covid still growing, German health minister says

(Has some references to ME/CFS)

https://www.yahoo.com/news/cases-long-covid-still-growing-151626706.html

 

So, yesterday a public roundtable was held, lead by health minister Lauterbach, discussing Long Covid and the publication of a list of off-label medications that MDs can consider prescribing. There was some mention of ME/CFS, but one controversial decision so far is that non-COVID ME/CFS, or non-COVID any chronic illness really, is excluded. Since LC is typically defined saying a validated test is not necessary, given the general clusterfuck state of things, I don't know how they'd discriminate beyond pre/post 2020. Which would still allow some non-COVID chronic illness. Bit of a mess.

Article covering the gist: https://www.aerzteblatt.de/nachrich...tierten-Behandlung-von-Long-COVID-vorgestellt, which includes some discussion of ME/CFS: "The round table also pointed out clear deficits in the care of patients with long COVID and similar illnesses or ME/CFS, despite all the progress". Not sure what "all the progress" means here. There's been exactly zero progress because it's held back by a medical profession that simply refuses to budge from its traditional myths.

The document listing the medications and describing their use: https://www.bfarm.de/SharedDocs/Dow...l/Zulassung/ZulRelThemen/therapie-kompass.pdf.

The list, fortunately no knowledge of German needed to know what they are:

• Antidepressiva (Amitriptylin, Bupropion, Doxepin, Duloxetin, Mirtazapin, Sertralin, Vortioxetin)
• Aripiprazol
• Betablocker
• Glukokortikoide
• Ivabradin
• Metformin
• Midodrin
• Naltrexon
• Nirmatrelvir / Ritonavir
• Pyridostigmin
• Statine

Which I guess does reflect the state of the art right now. Which is frankly pathetic, but no results without effort preference.

 

Making Long Covid measurable: New Max Planck Center opens
https://www.br.de/nachrichten/wisse...en-neues-max-planck-zentrum-eroeffnet,UOXB90O

Close to the university hospital and therefore close to the patient: The new Max Planck Center in Erlangen is intended to facilitate the exchange between basic research and medicine. The new building has now been opened, where research into long Covid is also being carried out.
...
The blood samples collected since 2021 are currently being analyzed. However, there are no initial results yet. "If everything goes well, we will know in six months whether we have a chance of seeing differences between long-Covid patients and healthy subjects."

 

This is Martin Kräter's work, initially at the Max Planck Institute for the Physics of Light. One of our comments from 2022 —

Prior to publication, some of this data has been presented at the UniteToFight conference in May 2024.

https://www.youtube.com/watch?v=Eds4MQk9ba0

 

Deutsche Gesellschaft für ME/CFS have published an open letter. Below is an automatic translation of their Facebook post describing it.

"Open letter to cashier medical associations demands adequate care for ME/CFS patients in accordance with the G-BA's long-COVID policy

The in-patient organizations Initiative LiegendDemo and DG ME/CFS, supported by Lost Voices Stiftung and ME Hilfe initiate an open letter to the cash register associations.

Organizations see some hurdles in implementing the G-BA’s Long COV-RL as the current care structures for the care of ME/CFS patients do not meet the necessary requirements.

Therefore, the organizations are asking the registrar associations:
- To educate the general and specialist doctors in relation to all patient groups.
- To offer field-wide training designed by ME/CFS experts.
- To ensure that severely restricted ME/CFS patients* or complex illnesses receive the intended home visits or telemedical services.
- To advocate for specialized outpatient contact points for all patients with ME/CFS.
- Negotiate with the health insurance for adequate compensation.
- To ensure that all ME/CFS affected, regardless of the cause of their disease, are taken into account within the framework of the "Long COVID off-label-use" list of medicines commissioned by the BMG.

Go to the open letter here: www.mecfs.de/kv-brief"

Original text in German

Facebook post, https://www.facebook.com/dg.mecfs/p...B4V5QhQVnYroRLSWJs4QxCiMUFaFfJenedvxwXuvRQbAl

 

Christian Zacharias, a German pwME, has published a book titled "Everything is psychosomatic".

Because, somehow, this is one of the most controversial things out there, he couldn't find a publisher willing to market it. Shows how insane the situation is, that this issue is systematically ignored by editors and publishers, who often publish works on issues that are technically much more controversial, but this is a whole-of-society controversy, and that makes it taboo, unlike events contained in a small community or elsewhere around the world.

 

"Lying down" demonstration in front of the German Ministry of Research today:

Edit: another photo, good turnout.

 

article is from April 2024
https://www.riffreporter.de/de/wiss...ldiagnosen-long-covid-fatigue-immunadsorption

ME/CFS: Leading neurologist criticizes numerous misdiagnoses of multisystem disease

 

A weird mixture of reasonably sensible statements and misleading ones.
Interesting that they seem to be doing a decent (hopefully) trial of immunoadsorption.
I wouldn't be able to justify offering it to patients but if it gives us a result it will be useful to others at least.

We haven't had much comment from British neurologists on what they think. Maybe in Germany neurologists like to haveME/CFS under them to boost their clientele whereas in the UK private neurology is a pretty limited game.

 

"Prof. Dr. H. Prüß is the director of the Department of Experimental Neurology at the Berlin Charité, a neuroscientist at the German Center for Neurodegenerative Diseases (DZNE) in Berlin, and spokesperson for the Neuroimmunology Commission of the German Society of Neurology (DGN). His research focuses on the mechanisms by which autoantibodies trigger neuropsychiatric diseases. He is currently supporting the DGN in putting together a team of authors who will develop the first guideline on fatigue (chronic exhaustion) and ME/CFS." Google Translate

 

Whew, that is one confused individual who is adding as much clarity to the issue as throwing mud helps make water crystal clear. Basically rehashing all the tropes while lamenting wistfully about how, sometimes, maybe there is something but, who knows?

For sure he really wants to make sure that people think it's psychological and that psychology is important and that it should be foremost considered psychosomatic and that there is a lot of confusion about how it's sometimes misinterpreted as psychological, but is likely so in most cases and also have people considered that it's psychological and behavioral and possibly psychobehavioral?

Reminds of me young earth creationists, who may have the odd fact correct but only to make an argument about how, you know, the earth is just very young and evidence is conflicted and so on.

It would definitely be preferable if this person was not involved in anything having to do with us. Or say anything about the issue ever again. Now that is crystal clear. No wonder we never see any progress. These people have no clue what they're talking about but want to get involved somehow.

 

Some videos, probably only viewable on Xitter:

 

The German government has approved a €15M research program, funding 7 projects and a research network. Looks not so bad, although rather small, but all biomedical.

https://www.gesundheitsforschung-bmbf.de/de/pathomechanismen-von-me-cfs-18010.php

Thread with a summary of the projects: