Medical invalidation is associated w/ structural barriers in postacute immune mediated syndromes based on patient perspectives in Germany, 2026, Saad

[Chandelier]

Medical invalidation is associated with structural barriers in postacute immune mediated syndromes based on patient perspectives in Germany

Spoiler: Authors

Saad, Jad; Hensen, Jens; Bergelt, Corinna; Lerch, Seraina Petra

Abstract
Post-acute immune-mediated syndromes (PAIMS), including Long COVID/Post-COVID (LC/PC), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and post-acute COVID-19 vaccination syndrome (PACVS), are characterized by persistent, multisystemic symptoms and significant healthcare challenges.
A key issue is medical invalidation, defined as the dismissal or delegitimization of patients’ reports of symptoms.

This cross-sectional online study, conducted in Germany between October and December 2025 ( N = 577), examined healthcare experiences, access barriers, and perceived invalidation.
Although healthcare utilization was high, 87% of participants reported difficulties accessing appropriate treatment.
Major barriers included lack of available therapies (60%) or not being taken seriously (26%).
Perceived invalidation by medical personnel was moderate across all groups (LC: M = 2.80; ME/CFS: M = 2.99; PACVS: M = 3.03) and did not differ significantly (Welch-F(2, 190.50) = 2.87, p = 0.059) between groups.
Invalidation occurred not only within healthcare settings but was particularly pronounced in interactions with authorities and workplaces.
Social media and online communities served as important sources of information and support, especially among individuals with ME/CFS.

Overall, the findings reveal substantial structural barriers in the care of PAIMS and highlight the need for improved clinical education, better care coordination, and stronger institutional recognition of these conditions.

Web | DOI | PDF | Scientific Reports | Open Access

 

[Jonathan Edwards]

Overall, the findings reveal substantial structural barriers in the care of PAIMS

Don't they just reflect the absence of any treatment to offer?
How do we know that the 'invalidation' wasn't just an honest admission that there is no treatment to be had? That happens all the time to doctors.

 

[NelliePledge]

PAIMS yeah right another acronym that’ll help

 

[Chandelier]

Don't they just reflect the absence of any treatment to offer?

Slightly off-topic, but I still have to think back to the interview psychotherapist Bettina Grande gave in DER SPIEGEL.

Machine translated excerpt:

---

Grande: …​

Most of the people I support are bedridden.​

This can be accompanied by such extreme sensitivity to stimuli that they have to spend all their time in a dark, quiet room.​

Many suffer from severe, constant pain.​

To make matters worse, most of those affected do not receive medical care: only about ten percent of my patients have access to medical care.​

In such an extreme situation, even psychologically stable people reach their limits — and that is where I can provide support as a psychotherapist.​

​

SPIEGEL: Ninety percent of your patients with ME/CFS have neither a general practitioner nor a specialist?​

We are talking about people with a severe, chronic illness who need medical care.​

​

Grande: This catastrophe of inadequate medical care takes up a great deal of space in my conversations.​

For example, when I speak to a patient in a video consultation and know that, in a few minutes, I will have to leave them alone, without medical care, suffering from excruciating pain in their dark room.​

At the same time, we both know that there are medications that could at least help relieve their pain, and possibly others that could alleviate their symptoms overall.​

But they do not receive them because they do not have a doctor, or because their doctor’s practice says they have to come to the practice, which they are unable to do.​

I consider it a grave injustice that these people are being left to fend for themselves and are consequently forced to endure what they do.​

---

The relevant questions from this study‘s questionnaire :

Category 4: The Healthcare Situation from Your Perspective

1. Have you sought medical help due to Long/Post-COVID or ME/CFS symptoms, or due to medically confirmed vaccine-related injuries?
o No
o Yes
2. Have you sought other forms of help due to Long/Post-COVID or ME/CFS symptoms, or due to medically confirmed vaccine-related injuries?
o No
o Yes, the following: ____________________________________________
3. Is your treatment currently being supervised by a doctor?
o Yes
o No
4. Were all of your symptoms taken into account when your treatment plan was developed?
o Yes
o No
If no, which ones were not? _____

5. Have you experienced any obstacles to receiving care for your long/post-COVID, ME/CFS, or vaccine-related health issues?
o Yes
o No
If yes, which ones?_____

6. Have you experienced any medical gaslighting i.e. where someone has blamed your symptoms on psychological factors such as anxiety?
o Yes
o No
o I would prefer not to answer this question
7. Please fill in or check the answer that applies to you.
Scale: Agree (1) – 2 – 3 – 4 – Disagree (5)

o I feel that my symptoms are taken seriously.
o My views are taken into account in decisions regarding my further medical care.
o I am encouraged to actively participate in my treatment plan
o I am satisfied with the scope of the examinations performed.
o I am satisfied with the initiation of therapeutic measures (e.g., respiratory therapy, physical therapy, rehabilitation).
o I am made aware of self-help resources.
o My primary care physician takes on the responsibility of organizing my overall treatment
o I am satisfied with the exchange of information among the treating physicians.
o I am satisfied with the level of expertise of the treating physicians.
8. Is there anything else you would like to tell us about your treatment that has not been discussed so far?

The following questions were asked repeatedly for different contexts like spouses, HCPs, work, etc.:

[X] finds it odd that I can do much more on some days than on other days
o thinks I should be tougher.
o takes me seriously.
o gives me unhelpful advice.
o understands the consequences of my health problems or illness.
o makes me feel like I’m exaggerator.
o thinks I can work more than I do.
o gives me the chance to talk about what is on my mind.

 

[rvallee]

I don't understand the fake ignorance that this is all intentional and systemic. It's frankly at the level of "gambling? in this establishment?!" Invalidation is the entire approach here, no one is fooled by this pretending otherwise.