Dude
Senior Member (Voting Rights)
Inebilizumab and tafasitamab work differently to dara. Otherwise, you could have argued after rituximab as well that autoimmunity wasn’t involved. But JE knows more about this than I do.
News from Germany
- Thread starter TiredSam
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- germany me/cfs news regional thread
Jonathan Edwards
Senior Member (Voting Rights)
If you believe that you may as well believe anything. People think such experiments are somehow definitive but they are fraught with artefacts and as far as I know very rarely prove valid. What would ME symptoms in a mouse be like - looking a bit poorly? If I was a mouse and was injected with human Ig I might well feel a bit poorly.
Nope. Remember, I am a world authority on the pathogenesis and treatment of autoimmunity.
Yes, but that applies to all the members here as well.
The bottom line is whether or not claims about research results are reasonable. It sounds doubtful to me.
Dude
Senior Member (Voting Rights)
If you believe that you may as well believe anything. People think such experiments are somehow definitive but they are fraught with artefacts and as far as I know very rarely prove valid. What would ME symptoms in a mouse be like - looking a bit poorly? If I was a mouse and was injected with human Ig I might well feel a bit poorly.
Nope. Remember, I am a world authority on the pathogenesis and treatment of autoimmunity.
Yes, but that applies to all the members here as well.
The bottom line is whether or not claims about research results are reasonable. It sounds doubtful to me.
Yea but feeling poorly and not passing a standarized test with Pain sensitivity, heat sensitivity, activity levels, motor function are a bit diffrent pair of shoes.
Scheibenbogen said that the gold standard for autoimmunity is transferring patients IgG into mice. She should know it as she is also playing in the World Authority League herself
Edit: She probably didn’t put it exactly that way because it would be too unscientific, but she meant that it was the gold standard.
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Jonathan Edwards
Senior Member (Voting Rights)
Not really, those are all ways of testing for feeling poorly.
Remember that for every experiment claiming to show disease passively transferred by human IgG there are probably 20-50 such experiments done that showed nothing and so were never published. And it is all too easy to collect animal data the way you would like it to be - I used to do animal studies in the 1980s. Believe me, cherry-picking comes with a handy pneumatic lift in the animal house.
To be credible studies of that sort need to show consistent dose response effects and all the other details you want to see before you take biological phenomemon seriously. If the observation is reliable why are there not large labs using Ig transfer as a standardised disease model? My guess is because it isn't quite as simple as it sounds.
Er? Based on what? what the Twitterati say? Nobody in ME/CFS research has hit the main science circuit yet as far as I know. The current circuit is a goldfish bowl on its own.
Thankfully that’s one thing she does too. In the interview she said that „some even die from ME/CFS“. It’s only the first or second time she’s said that in public. She’s become more clear about how disabling it is in the last couple years. That it is very common, she mentions in almost every single interview too.
But I agree with you, such statements are not great for us- even if I love Prof. Scheibenbogen tremendously.
She said recently that they (I think she meant She and her team) submitted many proposals for the first Funding Guideline from the National Decade. The Deadline was on September 2nd for the drafts (there will be 2 rounds). I‘m quite curious what they submitted.
Jonathan Edwards
Senior Member (Voting Rights)
This is quite a dangerous statement to make. Some people die of starvation or suicide as a consequence of ME/CFS but stories about people dying of ME/CFS have probably contributed to others dying by ensuring that nobody has any idea what they are doing when a patient needs help.
It isn't very common. It is relatively common in comparison to rare diseases like Fabry's disease, but pretty uncommon in comparison to things like cancer or diabetes or stroke.
I disagree. She also mentioned that in PAIS Care Berlin, they are taking care of the severe and very severe patients. General practitioners who are participating in PAIS Care can get help for their (very) severe patients. It seems to be a challenge but at Charité they have a newly established hospital room for them if they need diagnostic tests or things like feeding tubes etc. they get there via „Liegendtransport“ and Tavor.
For me personally (severe, unable to tolerate car rides) this resulted in a good hospital stay at university hospital tuebingen, where I was transported to sedated and all the diagnostic tests and procedures where done sedated too.
It helped too that they knew that my neighbor with very severe ME/CFS died of ME/CFS a couple of weeks earlier.
And with „very common“ - I worded that poorly- she usually mentions the numbers for Germany provided by risklayer and ME/CFS research foundation. ~600.000 people.
Jonathan Edwards
Senior Member (Voting Rights)
I don't doubt that the focus may have produced better care and am happy that at least some people are getting support. But I think 'died of ME/CFS' is easily misinterpreted. In the current context, people die of poor care, not ME/CFS. One person was judged 'going to die from their ME/CFS anyway' and was not kept alive. That has to be avoided at all costs.
But do you think this is due to an "ME/CFS can be deadly"-narrative and not more because of a "there's nothing we can do"-approach in general?
I mean as far as I know people die of complications from parkinsons and at least in people <80 I don't think they just let people die.
Also I wonder if this is also a kind of misunderstanding that people who aren't trained in medicine, like Lisa and me, maybe would claim that people die of e.g. parkinson's; where in fact, people never die from the disease per se but from occuring complications.
A trained Dr. and scientist like Dr. Scheibenbogen of course should be exact with things like that.
Just to clarify I didn't choose the example of parkinson's because I think it's an optimal comparison but simply because it's the first illness that comes to my mind where people can die from 'complications' but not from the disease itself.
Jonathan Edwards
Senior Member (Voting Rights)
The issue is mostly shrouded in broken communication and second-hand information but there are a few instances where verbatim statements make it look as if there is a real danger here. The 'multisystem disease' folklore leads to people behaving in ways that have almost certainly hastened death at times.
There is no need to over-egg ME/CFS. The reality is bad enough.
What would be the correct terminology?
Coma isn't deadly. Neither is locked-in syndrome or quadriplegia. People with those conditions will die unless supported, in pretty much the same as way as with ME/CFS. Deaths from ME/CFS are more in that category than in dying from cancer. There must be other frames of reference, though. People don't die of AIDS, they die of infections brought about by the immune system being wiped out by HIV. Similarly it was a big thing that most people didn't "die of COVID", but rather of respiratory failure (for which COVID was the cause).
It seems impossible to label properly, though, since I don't see how it can be appropriately described without making it clear that those deaths are preventable, and as such all deaths can only be a product of wilful negligence and/or denial of care.
But there still has to be an honest and accurate description for this. It shouldn't be so controversial, no reasonable person would deny that someone in a coma being left to die means the coma was instrumental for the deaths, but clearly it is since there is no way to say it accurately without making it clear that there are millions of what at best could be termed manslaughter, although given how much premeditation there is in the stated intent, it's really because governments are all in favor of it that it can't be discussed honestly.
Jonathan Edwards
Senior Member (Voting Rights)
It is not to do with correct terminology. It is to do with the way people oversell things without appreciating the way individual human lives can get trampled on by their desire to sound clever. The reasons why things go wrong are complicated and to do with the muddled way people interact in real life. Yes, there is huge injustice. Yes, people are suffering intolerably for year on year. But 'first do no harm' is not just for doctors. Embroidering scientific realities is not harmless, whether you are a scientist, a physician, or a member of an advocacy group.
Chandelier
Senior Member (Voting Rights)
OCR and machine translation of a photo on social media:
The symposium will be moderated by Member of Parliament Kathrin Anders, health policy spokesperson for the Green parliamentary group in the Hessian State Parliament.
SYMPOSIUM ON ME/CFS AND LONG COVID
Thursday, 10 September | 4:00 p.m. | Hessian State ParliamentAgenda
| Time | Programme |
|---|---|
| 4:00 p.m. to 4:15 p.m. | Welcome address by the Chair of the Parliamentary Group – Mathias Wagner, Member of the Hessian State Parliament (MdL) Welcome and introduction to the subject – Kathrin Anders, Member of the Hessian State Parliament (MdL) |
| 4:15 p.m. to 4:45 p.m. | Early, binding and structured involvement of people affected Fatigatio e.V. – Federal Association for ME/CFS – Dr Claudia Ebel Nichtgenesenkids e.V. – Katharina Dietz-Michalski |
| 4:45 p.m. to 5:00 p.m. | Specialized care for children and adolescents PEDNET-LC Comprehensive Care Center Kassel – Dr Nina Kollmar |
| 5:00 p.m. to 5:15 p.m. | Break |
| 5:15 p.m. to 5:45 p.m. | Specialized care for adults – Post-COVID outpatient clinics Post-COVID Outpatient Clinic, University Hospital Frankfurt – Prof. Dr Maria Vehreschild Post-COVID Outpatient Clinic & Care for ME/CFS Patients at UKGM – Prof. Dr Bernhard Schieffer, Dr Elisabeth Schieffer |
| 5:45 p.m. to 6:00 p.m. | Interdisciplinary knowledge transfer & networking on post-viral syndromes Austrian National Reference Centre for Post-Viral Syndromes – Prof. Dr Kathryn Hoffmann |
| 6:00 p.m. to 7:00 p.m. | Break with networking and buffet |
| 7:00 p.m. to 8:00 p.m. | Panel discussion: Recommendations for action for state-level policymakers Hesse State Medical Association – Dr Peter Zürner BARMER Health Insurance, Hesse – Martin Till Medical Service of Hesse – Dr Patrick Schunda German Pension Insurance Hesse – Prof. Dr Ulf Seifart Association of Statutory Health Insurance Physicians in Hesse – Dr Harald Herholz Fatigatio e.V. – Federal Association for ME/CFS – Dr Claudia Ebel[/B][/B][/B][/B][/B] |
The symposium will be moderated by Member of Parliament Kathrin Anders, health policy spokesperson for the Green parliamentary group in the Hessian State Parliament.
Chandelier
Senior Member (Voting Rights)
Author of the article on Bluesky.
Machine translation:
Machine translation:
Nina Weber
@ninaweber.bsky.social
While researching assisted suicide among people with #MECFS, I was in contact with a woman who had cared for a young patient and who also spoke about medical gaslighting.
The caregiver said: “Several times, doctors implied that I was taking such good care of her that it was no wonder she wasn’t getting out of bed. No 20-year-old wants to be fed cold soup or have someone change her diapers.”
The young woman died a few weeks after our conversation.
There still needs to be a way to say it. If "died of ME/CFS" is incorrect, there has to be a correct way to say it that accounts for those factors, is accurate and respects the level and severity of the tragedies.
Because from what I see here, my impression is that Scheibenbogen might prefer to say "died of ME/CFS" simply because saying the truth is too incendiary. Justly so, but it's pretty much an accusation of social murder and/or criminal negligence that implicates all levels of governments, the health care systems and the medical associations. Which is entirely accurate, but as I remarked recently, there is an element of conformity/collegiality that makes it forbidden to say the simple truth. We can, and I don't hesitate, but physicians can't say it without being punished.
It's not just those who died directly from it. It's tens of millions of lives so broken they may as well have been killed just the same. I look at my own "life", and unless things change rather quickly, it's such heavy suffering and misery that I would genuinely prefer to have never existed at all. The bad has completely overwhelmed the good, and I had a very good life until it all went to flames. I might not have died of this illness, but it's just the same, in a similar way as banishing millions of people into solitary confinement is evil. The toll here is staggering, and entirely intentional. All the complexities and ambiguities don't change anything to that, aside from the victors writing their own history making it seem so.
There is a simple way to say it, otherwise "died of ME/CFS" is the closest that makes sense and does not lead to heavy censure.
Utsikt
Senior Member (Voting Rights)
In medicine, died of implies that the disease interfered with the autonomous processes in the body that keeps it alive.
In other context, died of might be correct. But we can’t let that cause misunderstandings that could cause even more deaths. You and JE are talking of two completely different things.
Chandelier
Senior Member (Voting Rights)
Machine translation:
“It’s as if she were lying in a coffin”: Daughter Nele (22) has ME/CFS
Nele (22) has been bedridden since May due to her ME/CFS. Her mother, Doreen Schmidt, cares for her around the clock, pushing herself to the point of exhaustion. She is now planning a specialized shared living arrangement for people affected by the disease.
Chandelier
Senior Member (Voting Rights)
Nachfrage nach Rechtsberatung beim Sozialverband VdK steigt
Bei abgelehnten Anträgen von der Renten und Krankenversicherung Widerspruch einzulegen ist mühsam und fühlt sich für viele aussichtslos an. Der Sozialverband VdK bietet seit vielen Jahren eine Rechtsberatung an – und die wird immer beliebter. Deshalb will der VdK sein Angebot auch weiter ausbauen.
www.sr.de
Demand for Legal Advice from the VdK Social Association on the Rise
Sascha Peter has multiple sclerosis and suffers from severe sleep disorders as a result. However, his application for rehabilitation was summarily rejected on the grounds that it was not medically necessary.
Nearly One-Quarter Increase in Legal Consultations
His case is one of nearly 5,000 cases in which the social law advisory service of the VdK Social Association provided support in 2025. According to the VdK, more than half of these proceedings were successful, as in Sascha Peter’s case. Last year, the social association says it secured more than five million euros in back payments and pension entitlements.
The demand for legal advice has increased by almost a quarter since 2020. “We are noticing that the waiting times for consultation appointments with us are getting longer and longer,” says Peter Springborn, Managing Director of the VdK’s state office.
Additional Advice Center Planned
The organization now intends to take measures to counter this trend. Around the turn of the year, it is hoped that an additional office can be opened.
“At the moment, we have six social advisory centers distributed across the entire Saarland. A seventh, virtual center will be added,” Springborn says.
The virtual advice center is scheduled to offer additional telephone consultations with specialists starting in January. Video consultations are also expected to be introduced in the foreseeable future.