Can a simple screening test distinguish between ME/CFS sufferers and patients with ME/CFS-like symptoms?, 2025, Habermann-Horstmeier (German)

https://link.springer.com/article/10.1007/s11553-025-01223-6

Can a simple screening test distinguish between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) sufferers and patients with ME/CFS-like symptoms?

Abstract

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe multisystem disease with a wide range of symptoms.

Many of its symptoms also occur in other diseases. ME/CFS is characterized by post-exertional malaise (PEM) and severe lack of strength and energy (fatigue).

The aim of this study was to determine whether it is possible to distinguish between patients with ME/CFS and patients with ME/CFS-like symptoms among patients who are convinced that they have ME/CFS.

As part of the APAV-ME/CFS survey, the data of 749 adults with a medical diagnosis of ME/CFS (DS1) were compared with those of 191 adult patients without a medical diagnosis who were convinced that they had ME/CFS (DS2).

The DS2 patients were divided into two subgroups using a DSQ‑SF- and DSQ‑PEM-based screening test (Canadian Consensus Criteria [CCC] fulfilled = DS3; CCC not fulfilled = DS4).

The descriptive evaluation was followed by a comparison of the different groups (Pearson χ2 test, ANOVA with t‑test; p = 0.05, in the case of multiple answers Bonferroni correction to p = 0.003). In all, 51.6% of the DS2 patients fulfilled the central CCC characteristics (PEM, fatigue).

DS3 and DS4 did not differ in terms of age, gender, duration of illness and other parameters.

However, there were clear differences here between DS1 and DS3 and DS1 and DS4.

DS1 and DS3 did not differ in terms of the frequency of typical ME/CFS symptoms, while there were significant differences between DS1 and DS4.

Non-ME/CFS patients can thus be distinguished from ME/CFS patients using a few simplified questions based on the DSQ-SF and the DSQ-PEM.

Since PEM and the specific form of fatigue are typical for ME/CFS, it is likely that the DS3 patients were suffering from ME/CFS.

Doctors in routine care and with little experience in ME/CFS diagnostics could easily confirm their suspected diagnosis of ME/CFS.

In addition, the screening instrument would be particularly suitable for diagnosing cognitively impaired patients due to its simplicity.

In a next step, however, it would have to be validated in comparison to a reliable diagnosis by experts using the CCC.

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Lassen sich mit einem einfachen, kurzen Screening-Test ME/CFS-Erkrankte (myalgische Enzephalomyelitis/chronisches Fatigue-Syndrom) von Patient:innen mit einer ME/CFS-ähnlichen Symptomatik unterscheiden?

• Originalarbeit
• Published: 03 April 2025

• (2025)
• Cite this article

Prävention und Gesundheitsförderung

• Lotte Habermann-Horstmeier MPH, MSc &
• Lukas M. Horstmeier

Zusammenfassung

Die Multisystemerkrankung ME/CFS (myalgische Enzephalomyelitis/chronisches Fatigue-Syndrom) ist eine schwere Multisystem-Erkrankung mit vielfältiger Symptomatik. Viele ihrer Symptome treten auch bei anderen Erkrankungen auf. Kennzeichnend für ME/CFS sind „post-exertional malaise“ (PEM) und hochgradige Kraft- und Energielosigkeit (Fatigue). Ziel dieser Studie war es zu ermitteln, ob es möglich ist, bei Patient:innen mit der Überzeugung, an ME/CFS erkrankt zu sein, ME/CFS-Erkrankte von Patient:innen mit ME/CFS-ähnlicher Symptomatik zu unterscheiden. Als Teil des APAV‑ME/CFS-Surveys wurden die Daten von 749 Erwachsenen mit ärztlicher ME/CFS-Diagnose (DS1) mit denen von 191 erwachsenen Erkrankten ohne ärztliche Diagnose verglichen, die überzeugt waren, an ME/CFS erkrankt zu sein (DS2). Die DS2-Patient:innen wurden anhand eines einfachen DSQ‑SF- und DSQ‑PEM-basierten Screening-Tests in 2 Untergruppen unterteilt (kanadische Konsensuskriterien [CCC] erfüllt = DS3; CCC nicht erfüllt = DS4). Auf die deskriptive Auswertung folgte ein Vergleich der verschiedenen Gruppen (Pearson χ2-Test, ANOVA mit t‑Test; p = 0,05, bei Mehrfachnennung Bonferroni-Korrektur auf p = 0,003). Insgesamt erfüllten 51,6 % der DS2-Proband:innen die zentralen CCC-Merkmale (PEM, Fatigue). DS3 und DS4 unterschieden sich nicht hinsichtlich Alter, Geschlecht, Erkrankungsdauer und anderer Parameter. Hier gab es jedoch deutliche Unterschiede zwischen DS1 und DS3 sowie zwischen DS1 und DS4. DS1 und DS3 unterschieden sich nicht hinsichtlich der Häufigkeit typischer ME/CFS-Symptome, während es hier signifikante Unterschiede zwischen DS1 und DS4 gab. Nicht-ME/CFS-Patient:innen lassen sich somit anhand weniger, an den DSQ-SF und den DSQ-PEM angelehnter, vereinfachter Fragen von ME/CFS-Patient:innen unterscheiden (DSQ‑SF = DePaul Symptom Questionnaire – Short Form; DSQ‑PEM = DePaul Symptom Questionnaire – Post-Exertional Malaise). Da PEM und die spezifische Form der Fatigue typisch für ME/CFS sind, ist es wahrscheinlich, dass die DS3-Patient:innen an ME/CFS erkrankt waren. Ärzt:innen in der Routineversorgung und mit wenig Erfahrung in der ME/CFS-Diagnostik könnten so leicht ihre Verdachtsdiagnose ME/CFS erhärten. Zudem würde sich das Screening-Instrument aufgrund seiner Einfachheit besonders für die Diagnostik bei kognitiv eingeschränkten Patient:innen eignen. In einem nächsten Schritt müsste es jedoch noch im Vergleich zu einer zuverlässigen Diagnosestellung durch Expert:innen anhand der CCC validiert werden.

 

Assuming that this was not built in to the probed selection it looks pretty good evidence for both groups having the same illness.

The rest of of the abstract seems just to be saying that if you use criteria you get the group the criteria select.

 

Even if one group did not experience PEM?

 

Yes, it suggests that there is an illness with this demographic that is not best picked out by standard questions about PEM.

When I say the same illness I am using that to mean there being a common process causing symptoms.

 

Thank you!

That was my next question!

Does that mean that you believe that whatever process is causing ME/CFS with PEM in one person might cause ME/CFS-like symptoms without PEM in someone else?

So PEM might only manifest under certain conditions, and is not required to produce the ME/CFS symptoms?

 

I fit that!

 

This is actually very interesting, and quite a significant sample size. A few points from a very, very quick skim: the sample was not only gathered from clinics but also via support groups & patient organisations and a "snowballing" approach from them:

which will obviously enrich the sample in favour of those who identify with the ME/CFS diagnosis and are familiar with its diagnostic concepts. And there was no attempt at confirmation with a clinical diagnosis:

It's also obviously a one-off survey with no longitudinal component (if one were to follow DS2/DS3 over time we would see whether DS3 followed the same trajectory).

The final point I'd make is that is that I'm uncertain that the DSQ PEM metrics are reliable based on the results they're producing in heterogeneous long COVID populations.

 

That is one possibility.

Another is that questionnaires about PEM are not very good at picking out PEM.

Edit:seems Nightsong said it first.

 

When I was first ill I was bey unsure about a diagnosis of ME/CFS partly because while I was struggling generally with ‘energy’ or ‘stamina’ I had a series of what felt like sharp ‘crashes’ rather than what I understood of as PEM. And I didn’t have sleep problems. Things changed but I’ve often wondered about it

 

Did they check whether all the confirmed ME/CFS diagnosed patients passed this test?

 

I suspect some of this goes back to an ongoing discussion I have seen on other parts of the forum: does delayed PEM have different biological characteristics than non-delayed PEM?

One of the things that I remember bringing up when I was briefly an intern in Leonard Jason's group is that the PEM questionnaire does not ask how soon after activity the "worsening of symptoms" starts.

From personal experience that I've described elsewhere on the forum, my experience of PEM changed dramatically before and after I started taking a stimulant.

On a stimulant, I would start to experience muscle pain, weakness, and exhaustion within an hour or so of starting activity. That would escalate into what felt like a full-body fever and last into the next day. This immediate response actually limits the total amount of overexertion I put myself through, since I am getting much faster feedback that I've reached my body's limits.

If I was really steadfast about resting over the next few days, took NSAIDs before starting activity and continued as long as I felt symptoms, and took beta-blockers at night to help with sleep quality, this immediate "PEM" usually wouldn't last for more than 1-2 days.

If I kept pushing it, then I could trigger PEM that was closer to what I experienced pre-stimulant.

Pre-stimulant PEM usually didn't start for at least 1-2 days after activity, and felt more like the "malaise" from a prolonged bad flu, though with less intense muscle pain/stiffness.

I am wondering if a proportion of pwLC are experiencing something closer to my post-stimulant PEM, though not identical. As @Nightsong notes in the linked discussion of the DSQ-PEM, some of the people in LC cohorts responded to exercise therapy, and that definitely would not help me.

 

So the important follow-up questions for the study are:

What are the temporal dynamics of PEM among the whole cohort? Are there distinct groups with immediate PEM, delayed PEM, or both?

If there is an immediate PEM-only group, how else are they distinct? Do they tend to be earlier in their illness course? Is this the subset that tends to respond to exercise therapy?

 

I had a really clear period in my illness where I always had the very distinct 24 hour gap from exercise (which made me feel great) to PEM start, but more recently it's been cloudier and more variable as I've got deeper into the illness and my fitness is worse, I'm less ultra-mild, my supplement and drug intake is more expansive, and my overall health is probably not as good.

I more often feel terrible during exercise these days which perhaps reduces the intensity of the delayed PEM because I stop. I still get PEM but often it's hard to pin it a specific event.

 

ME Research UK:


Yesterday, a study identifying concerning findings regarding diagnostic delays for people with ME/CFS was highlighted.

Following on from this, a study in Germany has identified that 51.6% of participants who experience ME/CFS symptoms but who did not (yet) have an ME/CFS diagnosis met the Canadian Consensus Criteria for the disease.

Read more about what the research team in Germany found here: https://tinyurl.com/344t4kty

 

As a by-the-by, I was looking for info on sarcoidosis (keep getting flares of weird skin inflammation), and found a list on the UK charity's site about how fatigue presents in the disease.

It's not identical to bullet point descriptions of PEM, but it's fairly close.




[Edited to add missing word]