Elke Hausmann
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drelke.bsky.social
Elke Hausmann
@drelke.bsky.social
340 followers 390 following 990 posts
German, English, Spanish
Sociology, Medicine, General Practice
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drelke.bsky.social
Ich kann zwar nicht einschätzen, ob das genug Geld ist, um das hinzukriegen, aber alleine, dass unser Leid anerkannt wird, dass man da was machen will, dass ich wieder hoffen darf, dass vielleicht, vielleicht in 10 Jahren diese Hölle vorbei sein könnte - das ist BIG!

#LongCovid
#ME
Heilung soll bis Mitte der 2030er-Jahre möglich sein In einem Eckpunktepapier der Koalition, das dem Spiegel vorliegt, bezeichnen der frühere Gesundheitsminister Karl Lauterbach (SPD) und der CDU-Abgeordnete Stephan Albani die Erkrankungen als "eine der größten gesundheitspolitischen Herausforderungen des 21. Jahrhunderts" '. In Deutschland seien mehr als 1,5 Millionen Menschen betroffen, vor allem durch die vielen Fälle nach der Coronapandemie. Nach Angaben von Lauterbach sind für 2026 im Bundeshaushalt 15 Millionen Euro für die Erforschung der Krankheiten vorgesehen. "Von 2027 bis 2036 geben wir jedes Jahr 50 Millionen Euro aus", zitiert der Spiegel Lauterbach. Damit könne Deutschland zum Vorreiter im Kampf gegen Long Covid und ME/CFS werden, sagt er. Das Ziel müsse sein, die Diagnose und Behandlung der Erkrankungen so weit zu erforschen, dass sie bis spätestens Mitte der Dreißigerjahre geheilt werden können.
November 14, 2025 at 8:32 AM
drelke.bsky.social
#LongCovid
"I want other people to realise that this actually is quite life changing and it's quite serious, I couldn't be independent now whereas before I was a very independent person," said Ms Lunt Davies. In a recent open letter to health secretary Wes Streeting, Long Covid SOS called for the government to "get [the] Long Covid crisis on the health agenda" and fund further research.
November 13, 2025 at 4:47 PM
drelke.bsky.social
Hier wird im Prinzip endlich mal klar gesagt, dass zwischen Long COVID mit und ohne PEM unterschieden werden muss. Das ist doch positiv.

Jetzt muss ‚nur’ noch klar gesagt werden, dass bei Long COVID mit PEM/ME eine Reha mit Physiotherapie kontraindiziert IST!
Es ist hervorzuheben, dass die bisherige Evidenz zu rehabilitati-ven Interventionen ausschließlich Long-COVID-Patienten ohne eine manifeste Diagnose einer myalgischen Enzephalomyelitis/ Chronic-Fatigue-Syndrom (ME/CFS) einschließt. Für Patienten mit diagnostizierter ME/CFS gelten andere Empfehlungen, da bei dieser Subgruppe rehabilitative Ansätze, insbesondere körperliches Training, kontraindiziert sein können [18]. Die Interpretation der positiven Reha-Effekte muss daher auf Patienten ohne ME/CFS sowie mit leichten bis mittelschweren Long-COVID-Symptomen begrenzt bleiben.
November 13, 2025 at 6:51 AM
drelke.bsky.social
The growth in support for the Greens and Zohran Mamdani's recent mayoral victory in New York suggests voters are beginning to question the idea that positive change is unattainable. Policies that are dismissed by the establishment as radical and unworkable, from rent controls to nationalised energy (both of which the majority of Britons support), are seen by much of the public as mainstream and logical. That's the thing about the narrative that Britain is falling apart. There are indeed many problems facing the country. But rather than immigrants and disabled people, the culprit is a social and economic structure that needs transforming. Most voters don't need convincing the system is broken - they need inspiration that it can be fixed. The ideas dismissed as "undeliverable" are the very ones we most require.
November 12, 2025 at 7:06 PM
drelke.bsky.social
‚But when the unproven theory can‘t deliver on the claims, then what?‘

#ME
Perhaps part of why psychologically-based rationales for disease can be widely accepted is because the harm this can do is underappreciated. Miller et al argued that their narrative inspires hope, and people with severe ME/CFS deserve that. But when the unproven theory can't deliver on the claims, what then? In a study Miller et al cited, researchers found that being told the disease was psychosomatic was the most common reason for suicidal thoughts for people with ME/CFS. [9] It's not the first study to suggest that being told they are effectively to blame for not recovering is a contributing factor to the increased risk of suicidality in people with ME/CFS. [10] A critical part of hope for people suffering illness is being able to trust that the medical community will work objectively to find better treatments and ways to support them, rather than promote unproven theories. People with ME/CFS deserve better than being told that their minds can overcome what's the matter with their bodies - if only they try hard enough, for long enough.
November 9, 2025 at 6:30 AM
drelke.bsky.social
More thoughts on PEM.

#LongCovid
#ME
More thoughts on PEM. We could know more about it, if we had studied it better by now. But we know enough to inform people of it existence. PEM is not a straightforward symptom. Mild PEM is much less obvious than severe PEM. Education about PEM is just a first step. Knowing that something like that exists (it's not just in your mind, you're not going crazy) equips you to recognise it, or discount it. Or, if it's not obvious in your case, to at least proceed with caution with going all out in the gym again after an infection when you're still not feeling quite right. Or make an informed decision as to whether physical rehab is a good idea for you. Or look closely at what triggers you most - the physical, mental or emotional exertion, because that will help you to do pacing better, which is inherently difficult to do well.
November 8, 2025 at 8:38 AM
drelke.bsky.social
#LongCovid
#ME
I feel for anyone who lives with a history of childhood trauma and is then on top of that struck by an illness like ME, and has to encounter professionals who can't tell one from the other. There are plenty of ME patients with no history of trauma. Long COVID has shown that it can it affect the most well adjusted people with no trauma in their past. You would have hoped that this would have changed the narrative, but no. It just reinforced the narrative by suggesting that in those people, there must be deeply hidden trauma that the patient is not even aware of that is arising from the psyche and becoming visible through this physical illness. People who would be perfectly healthy now if the COVID pandemic had never happened. This just shows the absurdity of this line of reasoning.
November 8, 2025 at 7:54 AM
drelke.bsky.social
#LongCovid
This is really interesting reading for someone who does not tend towards hypochondria, but suffers from Long Covid with PEM. It has made me realise even more how let down we all are by not having the difference between Long Covid with and without PEM spelled out, in the form of a major public health information campaign. Without it, people without PEM end up thinking that they have to act as if they did have it (with the resultant negative effects of de-conditioning, also if you are someone managing a mental health condition by remaining active, you are risking a worsening through inactivity), while some of us who do have PEM struggle to recognise it and act accordingly. This is the major fault line - PEM or not PEM. This is the one area where education would be really helpful for everybody, whether you have it or not.
November 7, 2025 at 7:25 PM
drelke.bsky.social
#LongCovid
Why is it so difficult to write that the most important thing you need to be aware of if you have Long Covid is PEM (plenty of good explanations of what that involves out there). If you have PEM, physical rehabilitation is contraindicated. It is pretty straightforward. If you have Long Covid without PEM, you may benefit from from slowly getting more active again - after a good few weeks of recovery from the acute infection. Journalists, do your work. It's not that hard.
November 6, 2025 at 4:47 PM
drelke.bsky.social
4/4
But this is a new era: you can't reach an accommodation with an ICE agent when he's kneeling on your neck. Climate chaos does not come with a moderate option. An oligarch is not interested in your pitiful attempts to strike a deal. To see the logical endpoint of the new left's embrace of money, look no further than Peter Mandelson. Famous for being "intensely relaxed" about people getting filthy rich, he became especially relaxed in the company of the filthy rich, such as money man and child sex trafficker Jeffrey Epstein - and is now discovering anew the meaning of "disgraced".
November 6, 2025 at 7:02 AM
drelke.bsky.social
3/4
In his fine new book The Great Global Transformation, the former World Bank economist Branko Milanovic describes how our political and economic order is now coming to an end. China and the global south now account for more of the world economy than the US, Japan, Europe and the many others put together that he terms the "capitalist core"; at the same time, capitalism is being redefined. The elites who prospered under the regimes shaped by Reagan and Thatcher are now redefining their nations into narrower, meaner, harsher societies, ditching the old commitments to multiculturalism and equality for women. They are forcing upon the rest of us capitalism without secure contracts, unions or even the HR department.
November 6, 2025 at 7:02 AM
drelke.bsky.social
2/4
The centre-left should be taking on the extreme right and acting as the anti-Trump. Instead, as Fintan O'Toole writes in the latest New York Review of Books, it is playing at being not-Trump. Or: not-Farage, not-Weidel, not-Le Pen. In the UK, Starmer's pitch is basically: we'll adopt the language and the flags, but deploy them with greater civility. As a response to this moment, it is morally contemptible and politically myopic.
November 6, 2025 at 7:01 AM
drelke.bsky.social
1/4

www.theguardian.com/commentisfre...
Still, the chief reason Mamdani has aroused such keen interest is because he is the first leftwinger to show that politicians can not only face down Trumpism, they can beat him. That is the defining task of our era, as New York's new mayor knows. Amid the thank-yous of last night's victory speech, he declared: "If anyone can show a nation betrayed by Donald Trump how to defeat him, it is the city that gave rise to him."
November 6, 2025 at 7:01 AM
drelke.bsky.social
I tried to ‚recover at work‘.

I failed.

I really didn’t want to feel like a failure, so I hung on in there for longer than I probably should have, had my health been my only concern.

#LongCovid
Many people with ME/CFS or Long Covid are too unwell to engage in any form of employment. The idea that work can always be retained with the right support fails to recognise the reality for those with severe or very fluctuating symptoms. Post-exertional malaise (a hallmark symptom of ME/CFS) can be triggered by even minor cognitive or physical activity; this is not a population that can be expected to "recover at work." While the Keep Britain Working report does acknowledge fluctuating conditions, its core message emphasises retaining people in employment and reducing health-related inactivity. For people with disabling energy impairment, this risks fuelling a narrative of non-compliance rather than unmet health need.
November 5, 2025 at 6:33 PM
drelke.bsky.social
Try @longcovidadvoc.com
Long Covid Advocacy • Follows you @longcovidadvoc.com 16.2K followers 5.3K following 1.7K posts A non-profit social enterprise dedicated to people with Long Covid + ME. Shifting the paradigm one step at a time... * Home to the #pedanticzebra book club. www.longcovidadvoc.com longcovidadvoc.shop Followed by Chronic Illness Humor, George Monbiot and 152 others es Media Videos Feeds Starter Packs Lists Long Covid & ME Researchers Starter pack by @longcovidadvoc.com This is a starter pack to collate those involved in scientific Long Covid & ME research. Clean Air Starter Pack Starter pack by @longcovidadvoc.com This is a starter pack of people advocating for Clean Air & Ventilation, especially in the context that #CovidlsAirborne Long Covid Advocacy's Starter Starter pack by @longcovidadvoc.com U Our general mix starter pack to help you find others in the
November 5, 2025 at 12:11 PM
drelke.bsky.social
Remember, Covid is airborne - and we know thanks to this woman.

#LongCovid

www.theguardian.com/australia-ne...
When the World Health Organization announced - incorrectly, as became apparent later - in March 2020 that the Covid-19 virus was not airborne, Prof Lidia Morawska knew she had to do something. A renowned expert in air quality and health, Morawska, of the Queensland University of Technology, began contacting international colleagues. She eventually gathered 239 scientists globally to highlight the risk of airborne transmission of Sars-CoV-2. The public pressure eventually prompted the WHO and other authorities to update their public health guidelines.
November 4, 2025 at 9:24 AM
drelke.bsky.social
Vor 4 Jahren war er noch im Yorkshire Sculpture Park - oder gibt‘s da mehrere von??
Skulptur des gleichen sitzenden Mannes mit Aktentasche auf dem Schoß, aber im Grünen, mit Gras und Bäumen
November 4, 2025 at 9:19 AM
drelke.bsky.social
#LongCovid
,Despite her struggles, Anita is continuing to challenge herself by walking 140 miles (225km) by the end of December in aid of the Long Covid Kids charity! This is a worry. The article suggests features of PEM. If there's one thing l've learned living with PEM, it's that you can't set yourself activity goals, certainly not to be completed in a particular time frame, because you will inevitably end up pushing yourself too much at some point to reach them. And the consequences of that are dire, definitely in the short term, and potentially for the long term.
November 3, 2025 at 4:53 PM
drelke.bsky.social
www.bbc.co.uk/news/article...
,As a regular beachgoer I went down to hear both sides of the argument that has split a community. Split a community? Rather, rich owners are preventing other local residents from accessing the foreshore, on the basis of ,complex property rights'. We are so used to be able to have access to the sea in the UK, that we forget that this right, like so many rights, has been fought for and needs to continue to be defended.
November 1, 2025 at 5:45 AM
drelke.bsky.social
Thank you.

#LongCovid
Platforming a recovery story for a treatment that's widely criticized for its lack of scientific plausibility and propensity to exploit Long COVID patients is irresponsible. It risks increasing stigma by suggesting that Long COVID could be cured through positive thinking and brain retraining, rather than acknowledging the complexity of the condition. The segment is patronizing to people living with Long COVID who are trying to manage their symptoms while the condition remains underfunded, public Long COVID clinics are closing, and private providers promote potentially dangerous treatments on the basis of low-quality studies. The reporting presents a simple solution for Long COVID and neglects to mention the strategies that could prevent infection - including improving indoor air quality, masking and vaccines to reduce SARS-CoV-2 transmission. People with Long COVID deserve responsible, science-based coverage.
November 1, 2025 at 5:13 AM
drelke.bsky.social
‚Ein Virus, das mehr kann als gedacht‘.

Wäre schön, wenn sich das endlich mal rumspricht 🙄

#LongCovid
Ein Virus, das mehr kann als gedacht Noch ist offen, in welchem Ausmaß dieser Infektionsweg zu schweren Krankheitsverläufen beiträgt und ob er bei neuen Virusvarianten eine ähnliche Rolle spielt. Die Ergebnisse verdeutlichen jedoch, dass SARS-CoV-2 weit mehr ist als ein Atemwegsvirus - es ist ein komplexer Immunmodulator, der zentrale Abwehrzellen selbst zum Ziel macht.
October 31, 2025 at 4:19 PM
drelke.bsky.social
#LongCovid
#ME

2/2
And the same issue is likely affecting long COVID research as well, Todd Davenport, PT, DPT, PhD, professor and chair of the Department of Physical Therapy at the University of the Pacific, Stockton, California, told Medscape Medical News. "The observation of ME in long COVID has brought renewed importance to the need to use specific case definition criteria in intervention studies. My preliminary work with students has identified a similar trend in long COVID exercise studies as Wormgoor has found in ME/CFS. The mixing of participants who may and may not respond normally to physical loading is probably also now confounding results in long COVID literature."
October 31, 2025 at 1:59 PM
drelke.bsky.social
Thank you!

#LongCovid
#ME

1/2
Of the 17 trials meeting inclusion criteria, three used "CFS" definitions that didn't include PEM at all, 13 used criteria in which PEM was an optional criterion, and only one used a definition that required PEM, although there was no mention of PEM in that paper. Most used subjective outcome measures such as fatigue scales or physical function surveys, while objective measures were "rare and inconsistent," she said. While some of the studies found positive short-term improvements, results were generally inconsistent. Moreover, Wormgoor pointed out that most of the studies reflected several other sources of bias, such as inadequate reporting of adverse events, treatment compliance, or dropout rates. Moreover, study participants generally had mild diseases because those more severely affected would not be able to participate. And none of the studies assessed PEM. "Many of the applied instruments were not designed to capture PEM at all...still, the evidence is presented as relevant for ME," she noted.
October 31, 2025 at 1:58 PM
drelke.bsky.social
From the critical review of Gabor Mate‘s work on trauma and illness by Nick Haslam
A theory that starts with the assumption that 'trauma can lead to physical illness' risks sliding very quickly into assuming that 'physical illness is a sign of trauma'. theory that starts with the argument that 'the cause is outside of you' (for example, trauma caused by others, or by circumstances) becomes a problem the individual is responsible for solving. Physical illness itself can function as both 'proof' and a reproach: if you're ill then you must have trauma and you clearly haven't 'dealt with' it properly.
October 30, 2025 at 1:36 PM
drelke.bsky.social
#LongCovid
#ME
While there is an argument for not conflating Long Covid with PEM and ME, as soon as PEM is mentioned, it HAS to be put in context that PEM is the hallmark symptom of ME - which is defined not on the basis of a cause, but describing a collection of symptoms. Not all Long Covid patients with PEM fit the Canadian Consensus Criteria for ME, and we might find eventually that ME is essentially an umbrella term for different conditions, that present similarly but are not the same, of which Long Covid with PEM may be one. But you can't talk about Long Covid with PEM without mentioning ME.
October 30, 2025 at 4:53 AM