Elke Hausmann

@drelke

German, English, Spanish Sociology, Medicine, General Practice

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Elke Hausmann@drelke· 21h

#LongCovid #ME

Aber zurück zum Problemaufriss: Seit einiger Zeit sind Erfahrungsberichte von Menschen, die angeben, von ME/CFS genesen zu sein, in Medien und sozialen Netzwerken und teilweise sogar in wissenschaftlichen Case Reports sehr präsent. Nun könnte man meinen: „Schön, das macht Hoffnung und jede Erfahrung hat ihre Berechtigung, schließlich glauben wir allen Betroffenen." Aber ganz so einfach ist das gerade dann nicht, wenn Heilsversprechen, kommerzielle Therapien oder Therapien, die sich bereits in anderen Erfahrungsberichten oder gar Studien als schädlich erwiesen haben, ins Spiel kommen.
Oder wenn sich schlichtweg Erfahrungsberichte von Genesenen und Krankgebliebenen vermeintlich „gegenüberstehen".

Elke Hausmann@drelke· 1d

#LongCovid #ME

Hier wird #Psychologisierung weiterhin reproduziert. ME/CFS muss dafür nicht als „psychisch" bezeichnet werden. Psychische und verhaltensbezogene Beobachtungen erhalten mehr Erklärungsgewicht als ihre Prüfung zulässt; Veränderungserwartungen führen wiederholt zur Person zurück, die an Überzeugung, Haltung oder Technik arbeitet.
Mit dem Kontextwechsel verändert sich der Geltungsanspruch. Aus einer sozial- und kulturwissenschaftlichen Analyse werden nämlich Aussagen mit klinischer und Public-Health-Relevanz. Damit betrifft die Deutung auch, welche Interventionen, Forschung und Ressourcen als erforderlich gelten.

Elke Hausmann@drelke· 1d

7/7

While for many physical diseases that we understand better, the recognition that doctors are treating people and not just bodies is a positive one for the patients at the receiving end of that treatment, it seems that looking at Long Covid or ME through the same lens somehow skips over that phase where we are actually trying to understand the underlying disease processes - and we end up with the situation where it becomes all about the individual person and their illness experience, like with EM, while sidelining (even if not completely ignoring) the ultimate physical causes and consequences.

Elke Hausmann@drelke· 1d

6/7

If you take the history of the dismissal of ME by the medical establishment (in the past, and very much ongoing, including with Long Covid) seriously, you must not just acknowledge that the reason was and is widespread psychologisation of the people sick with those conditions, but what you should push for is parity of recognition of these physical diseases with other physical diseases, which includes treating them the same (calling for doing research into the biomedical mechanisms and the development of disease-modifying treatments).

Elke Hausmann@drelke· 1d

5/7

EM says, the graded exercise therapy stuff is so harmful for some people, but other people have found it to be helpful'. She goes on to say that it is understandable that people who have experienced that harm want to protect others, ,and so it's caused a rejection of those who have recovered through lots of different methods! (EM at 38 minutes).
I am not, rejecting others who have recovered through different methods', I'm arguing that 1. if you benefited from GET, you didn't have PEM, so we're not talking about the same problem, and we need to be very clear what we are talking about, and 2. I'm saying to give these , different methods' a causal role in people's recovery (especially when it is not clear the recovery from what exactly we are are talking about) is completely unproven - there are lots of other reasons why people might recover, and it may have absolutely nothing to do with anything they did or didn't

Elke Hausmann@drelke· 1d

4/7

The book is a distraction from what we need to focus on - furthering our understand of the diseases underlying, complex chronic disease' and push for treatments that will actually make a difference to our lives.
David Tuller has recently written about how in a study of CFS recovery narratives (presented as providing evidence for how to recover), the, longstanding hegemony of the recovery narrative in the ME/CFS field' is being edited out, instead presenting the view that, the medical establishment has a deep-rooted investment in presenting ME/CFS as an incurable biomedical disorder and is therefore seeking to squelch the message that recovery is possible through so-called
"mind-body" approaches' (https://. virology.ws/2026/08/11/trial-by-error-cfs-recovery-findings-might-be-suppressed-says-report/). That's the context in which a book like this one, and comments like ,biomedicine dismisses the reality of what long COVID is and what it does' (EM at 22 minutes) are being received.

Elke Hausmann@drelke· 1d

3/7

There is something about the way ‚complexity' as in, complex chronic illness' is invoked here that is deeply troubling - where does this complexity reside? Is there really something about the diseases we currently describe as Long Covid, ME, POTS, MCAS, that makes them inherently more, complex' than better understood diseases like cancer, Parkinson's disease, or MS? Or do we simply not understand them as well yet in this moment in time (considering that EM is giving a historical account', you'd think that this might have been considered).
Somehow it is suggested that any one individual with, complex chronic illness' is just that, with an entirely individual illness experience from which we cannot derive any generalities about the underlying disease(s).
But think about it - this individual illness experience will be just as different for two people with prostate cancer - and now imagine one of those people has Parkinson's disease as well and the other MS. Of course each one of their experience of prostate cancer will be very different. Why don't we call that, complex chronic disease' as well?

Elke Hausmann@drelke· 1d

2/7

You cannot write (and in this interview enthusiastically repeat) the story of a woman with Long Covid who took herself away to a Mexican beach to heal and subsequently recovered, and then say people should not read this as suggesting that going to a beach will make you recover from Long Covid - when you are invoking thresholds theory' that enmeshes psychological and social factors with biological ones in the generation of chronic illness, the flipside of which is that addressing psychological and social factors may cure biological disease.

Elke Hausmann@drelke· 1d

This is not an ‚attack‘ - these are some of my thoughts after listening to this interview (on the basis of having read the book!) because I really feel that there is still no understanding of the issues some of us have with the book. #LongCovid #ME 1/7

The repeated suggestion by the interviewer that people who have criticised the book have either not read it or based their criticism on one-liners' taken out of context is a way of deflecting from the substance of the criticism.
As is saying that this criticism is only performative: ‚people trying to generate their own power and legitimacy' (EM at 30 min).
You cannot write a book about invisible illness' and then say that it is about everything apart from severe Long Covid and severe ME. People will take lessons from this for ALL invisible illness, including, chronic fatigue syndrome' (under which ME is often subsumed) which is the invisible illness per se in the public's mind.

Elke Hausmann@drelke· 2d

#LongCovid #ME

It is really important to talk about inequality in healthcare/social care/society, and EM stresses that we need to talk about what
can be achieved in , complex chronic illness' if individuals are able to throw lots of money at it - yes, you might have a better illness experience', you might even get access to some medications that might help with some symptoms, but the point is that as long as we don't have any curative or significant disease-modifying medical treatment, we will all remain sick, rich or poor.

Elke Hausmann@drelke· 3d

It worked a treat!

A colander projecting multiple images of the solar eclipse crescent onto a sheet of white paper

Elke Hausmann@drelke· 5d

#LomgCovid #ME

Despite George Davey Smith not once referring to myalgic encephalomyelitis / chronic fatigue syndrome
(ME/CFS) in his book chapter, the evident parallels between peptic ulcer and ME/CFS, and the lack of efficacy of psychological treatments for both of these diseases, were not lost on one of the book chapter commentators, Professor Simon Wessely (Institute of Psychiatry, King's College London). Prof Wessely commented "That was a powerful and uncomfortable paper" before continuing that "There will undoubtedly be many people, including, for example, those who one might call 'CFS activists', who would have loved every word you were saying."
The first comment reveals how Wessely is discomfited by Davey Smith saying that the BPS model is not aetiologically important.
Wessely's last comment admits two further matters.
First, that Davey Smith's discussion of bias, especially in observational studies, closely follows the logical arguments often made by BPS model dissenters.
Second, it implies that anyone disagreeing with Wessely's view of the BPS model's aetiological relevance should immediately be discredited as an
'activist', a needlessly pejorative term. The implicit exception is Davey Smith, due to his status as a distinguished Professor of Clinical Epidemiology.
Wessely's tactic was to shift focus from possible valid objections and onto whether the critic has status, leaving the main issue open.

Elke Hausmann@drelke· 5d

#LongCovid #ME

A big problem with the argument is that recovery narratives are just that—narratives. They are stories
people tell—to others and to themselves-about their "recovery," whatever that word means to them. These accounts can be analyzed collectively as cultural and social and public health phenomena. That doesn't mean they are free from bias or reflect what truly happened, for any number of reasons. For example, saying you feel better because you have retrained your amygdala, as some mind-body programs posit, does not mean
you have retrained your amygdala. Listening to patients does not mean believing everything they say is literally true.

Pretty much everyone I have interviewed with
ME/CFS or any variation has told me they firmly believed they would recover, and-especially during the early years-experimented with all sorts of interventions they heard or read about, no matter how off-the-wall they sounded. After failed attempts at CBT and GET, many sought solutions
"outside a medical framework" and developed
"self-determination in the face of adversity." Many even pursued "mind-body knowledge" and zealously engaged with mind-body programs.
They just didn't get better. In many cases, they got worse. They do not need to be told again that they would get better if only they did x, y and z.
Treatments for medical conditions should be backed by medical evidence. The Recovery Report provides an interesting account of story-making around the variable construct of "recovery." But it
does not provide actionable information for developing clinical guidelines or public health policy.

Elke Hausmann@drelke· 6d

Correct me if I’m wrong, but doesn’t this mean that the association between pre-existing T2D and higher risk of Long Covid has not definitely been shown by this study, but new-onset T2D after Covid infection has - so not necessarily bidirectional? #LongCovid

while the association with T2D did not surpass Bonferroni correction. However, T2D incidence increased after March 2020 beyond expected trends (p=1.84x10-80). Individuals in the highest PRS quantile for severe COVID-19 had increased odds of T2D (OR=1.19).
Conclusion: The findings support bidirectional associations between COVID-19 and NCDs, including T2D. Pre-existing T2D was associated with increased odds of Long COVID, while the pandemic period showed increasing trends in T2D incidence.

Elke Hausmann@drelke· 6d

This is obviously a study about the CURRENT healthcare workforce - I’m still missing a study that gives us some numbers as to how many healthcare workers have had to LEAVE the workforce due to #LongCovid

NHS
RACE & HEALTH OBSERVATORY
REACH-OUT:
Caring for the healthcare workforce post-
COVID-19
A longitudinal mixed-methods study of post-COVID-19 outcomes in healthcare workers from diverse ethnicities
4th report (final)
August 2026
University of Leicester
The University of Nottingham
#UCL
UNIVERSITY OF LEICESTER
UK-REACH

Elke Hausmann@drelke· 6d

How many patients with #LongCovid or #ME does this apply to, just here in the UK?

One challenge for healthcare systems is that administrative disengagement may remain largely invisible until significant deterioration has already occurred. A patient who quietly fails to re-register following deduction from a practice list may not immediately trigger concern within either the outgoing or receiving organisation, particularly where there are no active monitoring systems identifying interrupted prescribing or loss of contact. This creates an important distinction between clinical deterioration and
administrative disappearance. Healthcare systems are often designed to respond once a patient re-presents but may be less effective at recognising when continuity has been lost. There may be a prolonged period during which vulnerable patients are no longer meaningfully connected to healthcare services while remaining
invisible organisationally.

Elke Hausmann@drelke· 7d

‚Strukturelle Kompetenz‘ ist etwas, was auch vielen Gutachtern für #LongCovid und #ME fehlt, neben der Unfähigkeit, angemessen zwischen körperlichen und psychischen Beschwerden zu unterscheiden…

Die Notwendigkeit, „strukturelle Kompetenz" unter Fachkräften zu fördern, wird betont. Diese Kompetenz würde es ermöglichen, soziale, wirtschaftliche und politische Bedingungen als Einflussfaktoren für psychische Gesundheit anzuerkennen und zu adressieren. Ein wichtiger Ansatz wäre die stärkere Integration multidisziplinärer Teams und die Reflexion der eigenen Arbeitsbedingungen der Therapeuten, um das Spannungsverhältnis zwischen Individuum und Gesellschaft in therapeutischen Kontexten besser zu vermitteln und umfassendere Heilungsprozesse zu unterstützen.

Elke Hausmann@drelke· 7d

#LongCovid #ME

Well this is interesting. In Germany, there have been cases where court-appointed experts (from internal medicine, psychiatry, neurology) have successfully been sued for psychologising and downplaying the physical symptoms preventing Long Covid and ME patients from being able to work (not knowing enough about those conditions), with the consequence that their public or private income protection insurance did not pay out, and now the experts' liability insurance has to take over those costs and pay out!

Elke Hausmann@drelke· 7d

So self-reported outcomes are more meaningful when the functional disability is ,undetectable by standard objective investigations' - why? Doesn’t it have the same problems with people reporting improvements when they are told to expect them, placebo etc??

All these secondary outcomes were patient-reported, which is particularly meaningful in a population whose profound functional disability is frequently undetectable by standard objective investigations such as pulmonary function or exercise tests. Adherence was high, with 96% of scheduled sessions attended. Further, no serious adverse events occurred, which is a critical safety signal. Importantly, 39% of intervention participants were unable to progress their exercise prescription through one or more FITT (frequency, intensity, time and type) principles due to symptom burden.
These findings underscore both the feasibility and the challenges of tele-rehabilitation in a predominantly non-hospitalised cohort with persistent symptoms including PESE/PEM.

Elke Hausmann@drelke· 7d

You know how you get severe PEM? If you don’t respect mild PEM and keep pushing through! PEM is PEM is PEM!!

Clinicians must therefore use the DSQ-PEM not as a definitive diagnostic tool, but as a starting point for clinical dialogue. A best-practice proposal for long COVID exercise training recommends stratifying prescriptions by PEM severity (none versus mild/moderate versus severe) using PEM screening (assessed by a clinical interview combined with the DSQ-PEM) [17]. The proposal also recommends shifting the focus toward pacing/energy management when more severe PEM is prevalent.

Elke Hausmann@drelke· 7d

Recommended Sunday reading! ‚Learning is a strange and discomfiting experience; it's a struggle and a frustration, and epiphanies are rare. It is not always pleasure in its easiest sense.‘ #AI www.theguardian.com/books/ng-int...

There are many young people who are furious at the influx of AI slop and tech chaos into their lives, who have asked me over the last year, how do we resist? I tell them that I think, for the young, knowledge and imagination are together the first site of resistance. And that by reading books (and talking about what they have loved reading so that it becomes a community, rather than purely private, act) they can begin their fight.
I talk a great deal about reading for pleasure;
I've written elsewhere about the necessity of pleasure in the classroom, and why it is not an optional extra but the hallmark of true education. We must find ways to show children that reading gives you access to an inexhaustible source of delight. But I worry, too, that we are limiting the meaning of the word pleasure. Learning is a strange and discomfiting experience; it's a struggle and a frustration, and epiphanies are rare. It is not always pleasure in its easiest sense.

So I think we also need to talk to young people about reading to outrun and outfight injustice. Reading to get faster, swifter and tougher; to develop powers of scrutiny and criticism and huge creative imagination.
Reading human work to insist that we are human. Reading for liberation and emancipation; reading for intellectual freedom, and to have the strength to fight in the arenas of the mind, because when we let a computer think for us, we put a gun to the head of civilisation.
There are dark days ahead. If we are to fight against those with untold financial wealth, we will need untold intellectual wealth. We will need tough-minded people; people with stamina, a huge range of knowledge, and an ability to see wide and far enough to understand in real time what is being done to us. Reading for pleasure and delight are vital - but alongside that and even more urgently: reading for power.

Elke Hausmann@drelke· 7d

#LongCovid #ME www.bbc.co.uk/news/article...

That would have been such an opportunity to mention other reasons why people become intolerant of alcohol:
Long Covid or ME!
And talking about GLP-1 drugs: they are increasingly being studied and used off-label for Long Covid and ME, because their powerful anti-inflammatory and metabolic effects may target shared pathways like systemic inflammation and neuroinflammation.

Elke Hausmann@drelke· 9d

#LongCovid #ME

Both our government and many members of the public simply do not believe that there are as many disabled people in the UK as there are, despite the fact we have also been marking five years of failing to mitigate infections with a disabling novel virus, whose appearance coincides with the sudden rise in chronic physical and mental health conditions in our population.
Rather than admit that the rise in people unable to work due to sickness may be a direct result of unchecked spread of the pandemic, our leaders would rather perpetuate the idea that a large number of the people currently claiming disability benefits are not disabled at all, merely 'overdiagnosed' - either confused or out and out taking it.

There is no world in which retusing us appropriate care
is in any way helptul or can plausibly reduce actual experiential illness, rather than statistical diagnosed illness. The longer a condition goes untreated, unmanaged, the more it is likely to worsen and develop comorbities. What actually 'promotes chronicity, in the negative sense it is meant in the original quote, is delayed diagnosis, misdiagnosis, undiagnosis and the lack of appropriate and timely care they create. We cannot ignore chronic illness into wellness, we cannot ignore it into non-existence.

Elke Hausmann@drelke· 9d

A lovely piece of writing - thank you! There is no ‚social contagion‘. The pure relief of finally meeting someone who shares your experience jumps off the page. So important! #LongCovid #ME