CFS/ME an ideal facade for Munchausen syndrome by proxy?—“It can be so exhausting just to relax …”, 2025, Melfsen & Lucas (German)

https://link.springer.com/article/10.1007/s00112-024-02113-5

CFS/ME als ideale Fassade für das Münchhausen-by-Proxy-Syndrom? – „Auch Ausruhen kann anstrengend sein …“
CFS/ME an ideal facade for Munchausen syndrome by proxy?—“It can be so exhausting just to relax …”


Abstract
We present the case of 9‑year-old Mara who suffered from progressive physical weakness and severe cachexia as well as sensitivity to light and noise, headaches and concentration difficulties. Social contacts had been limited to close family members for months. Mara lived withdrawn in a room shielded from stimuli. Her mother had shown similar symptoms, which like Mara’s at the beginning, had been classified as chronic fatigue syndrome/myalgic encephalitis (CFS/ME).

Mara’s symptoms showed an acute decline after admission to our psychosomatic ward and separation from her mother. An organic cause as well as anorexia nervosa was ruled out. A detailed medical and psychosocial history as well as physical and psychological examination were followed by the systematic observation of Mara’s patterns of interaction and communication with family members, peers and staff. A synopsis of symptoms and signs finally led us to the diagnosis of Munchausen syndrome by proxy (FDIA) enabling a successful physical and gradual emotional rehabilitation of Mara supported by psychotherapy.

===
Zusammenfassung

Vorgestellt wird die 9‑jährige Mara mit progressiver körperlicher Schwäche bei Kachexie, Licht- und Lärmempfindlichkeit, Kopfschmerzen und Konzentrationsstörungen sowie seit Monaten auf die Kernfamilie reduzierten sozialen Kontakten. Mara lebte in einem reizabgeschirmten Raum. Die Mutter hatte eine vergleichbare Symptomatik, die – wie anfangs die von Mara – als Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) eingeordnet worden war.

Der akute Rückgang der Symptomatik bei Aufnahme auf unsere psychosomatische Station mit Trennung von der Mutter sowie die detaillierte (Beziehungs‑)Anamnese und Einordnung der auffälligen Interaktions- und Verhaltensmuster führten nach dem Ausschluss einer organischen Ursache zur Diagnose Münchhausen-by-Proxy-Syndrom (MbpS) und ermöglichten es, Mara erfolgreich zu behandeln.

• Kasuistiken
• Open access
• Published: 31 January 2025

 

I have so far just looked at the abstract but my thought is that this cannot be Munchausen by proxy - at least as defined by Wikipedia. MBP involves a parent manipulating evidence or depriving a child care to make a healthy child appear sick. It seems that the child here was sick.

 

It’s infuriating to see the same oversimplification repeated again and again, and used in unethical ways…

“We couldn’t find anything wrong therefore there is nothing wrong…”

Well I can’t find a hint of humbleness in the face of limited evidence…

 

@Jonathan Edwards
Edit to add: the following paragraph is my interpretation of the authors’ opinion.

It seems like she might have been sick from supplements, and Mara «acted» sick because her mother needed her to for her own mental health.

@Adrian declining symptoms is a good thing.

From the paper (AI-translated):
Both were taking the same nutritional supplements and medication. (Mother and child?)

Mara's CFS/ME diagnosis was made by a doctor who had never seen or examined Mara, but who confirmed this to us.

The pediatric diagnostics had largely already been carried out in advance on a somatic ward of the Clinic for Children and Adolescent Medicine and could not confirm the suspicion of CFS/ME.

The overdose of natural remedies and nutritional supplements that are not approved for Mara's age group could have contributed to the symptoms. As part of the therapy without medication or other medical measures, the patient showed increasing appetite and enjoyment of age-appropriate activities with peers.

The mother built up an extensive support system and tended to devalue professionals, combined with the experience of self-esteem-boosting exclusivity and attention as a supposed "expert" for CFS/ME

The father, who was himself emotionally burdened, cared for Mara according to the mother's instructions. The mother-daughter relationship seemed to promote illness, with the mother needing the daughter's closeness and dependence for her own stability [ 4 ]. Mara intuitively sensed her mother's neediness and stress and tried to support her emotionally. Mara held her mother in her arms when she came into her daughter's room to cuddle for hours. Instead of the age-appropriate development of independence and autonomy, Mara regressed and became more dependent, and she eventually believed that she was physically ill

The acute reduction in symptoms when the child is separated from the perpetrators is one criterion for our diagnosis of Munchausen-by-proxy syndrome (MbpS). This disorder involves the faking, causing or exaggerating of the child's symptoms by other people, usually parents [ 2 ]. The reduction in symptoms occurred from the day of inpatient admission and continued gradually over the period of inpatient treatment.

 

This part is a bit off, though:
Many questions remain unanswered in this case. One of them concerns the validity of the diagnosis CFS/ME: Given its currently low validity, does it lead to its use as mimicry in the context of artificial disorders?

I don’t understand why they go after ME/CFS. The child’s doctor gave her the diagnosis without seeing her. They should go after the doctor that enabled this to happen.

 

Completely agree.

That being said, the evaluation didn’t support an ME/CFS diagnosis (according to the paper).

 

I think it is unlikely that a child would become withdrawn, underweight and sensitive to stimuli from eating too many supplements.

It sounds from the story that very likely 'Mara' had ME/CFS. The authors claim that she did not fit the diagnosis but they describe her as if she has it. If she didn't have it, it is unclear what was wrong with her.

This is not MBP to my mind but I think it raises important questions about what effects interpersonal relations might have on a child with ME/CFS, including in terms of prolonging the period of disability.

The authors' analysis fails to shed any light and merely confirms their prior pigeon-hole thinking. But the case may nevertheless be instructive.

 

@Jonathan Edwards
«According to information obtained retrospectively and from follow-up treatment providers, the course of the disease showed a further normalization of her psychological and physical development after 6 months, with a BMI-P6 and a complete regression of previous CFS/ME-like symptoms. Mara had settled in well in the residential group and made friends. However, she continued to avoid dealing with the traumatic experiences. Contact with her mother remained blocked.»

Would a child be able to go from bedridden to this functioning in 6 months, without a severe crash?

Furthermore, the mother had diagnosed herself (edit: I’m not sure about this anymore - the translation might have influenced the wording. However, a bioenergetic health index isn’t a valid tool for diagnosing ME/CFS):
«The mother reported that Mara was suspected of having a mitochondrial disease. The mother had been diagnosed with this disease herself using a bioenergetic health index and it had been caused by traumatic stress.»

I’m not saying that this must have been MBP, and my opinion is that the authors are very dismissive about ME/CFS. But I struggle to make sense of the whole picture.

 

Even if it's unlikely caused by the supplements, I wish they would have listed everything she was taking including dosages.

 

In ME/CFS nothing seems proof way beyond your reasonable doubt. And now you diagnose by abstract?
I know I'm projecting my bad experiences with specialists on you. I apologize for doing that. You are one of the good guys now.
But sometimes you can still sound so much like "them".

Can someone please put in an english translation of the paper?

 

Is Mara a pseudonym?

I find the whole paper to bit very heavy on personal information? How did they get the parties involve to consent? Can a child meaningfully consent to this?

 

Yes.
No idea about consent.

 

There is nothing we know about ME/CFS that says not. Children do recover. How fast that can be I don't know but 6 months does not seem that quick. And we aren't really in a position to say what is possible since we don't understand ME/CFS at all.

That would not be so unusual for a mother and daughter with ME/CFS from what I gather from forums. Suspicion of mitochondrial disease is common.

Which is maybe not surprising since we have nothing to steer by with ME/CFS?

 

I am not assuming any diagnosis here, or even that we think we have the diagnostic categories right. I am simply saying that from the little information we are given ME/CFS looks the most usual problem to present like this. And I don't see on what grounds the authors say it is wrong - there aren't any grounds I can think of much. And I am interested to hear what others think because I think this story may be instructive.

In what way do I sound like one of them? We hear of families with two ME/CFS members like this pretty often. They get treated like this. Some of the children improve significantly or even get pretty much back to normal. As to what is going on here there are huge questions but I think we should take the story of events at face value unless we have good reason not to.

 

No. At least in the UK I'm pretty sure that obtaining consent from a ten year old in this context is not legally valid.

I think there are very real concerns about that. Even with a pseudonym cases like this may be recognisable by schoolfriends' families and others later in life.

 

I don’t have anything more to add here. I’m mostly confused by this paper..

They give no proof for their opinions, and they are very dismissive.

 

I would forget their opinions and attitudes and focus on the story. It is a story very similar to that given by members here who are confident in their own ME/CFS diagnosis.

 

Should we maybe not discuss it further on the forum? Could speculation here be damaging?