How often is ME/CFS diagnosed in people who don't have it?

This recent study of about 30,000 people reported incredibly high rates of people reporting having been diagnosed with CFS in the US:
The Physical and Mental Health of Post-9/11 Female and Male Veterans: Findings from the Comparative Health Assessment, 2025, Dursa et al
forestglip said:
Female nondeployed: 4.6% (3.6–5.7)
Female deployed: 6.9% (6.0–7.8)

Male nondeployed: 2.0% (1.3–2.7)
Male deployed: 4.6% (4.1–5.2)
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If we believe that about 0.4% of the population actually has ME/CFS and that there is no reason for the prevalence to be higher in the US than in other countries where the 0.4% prevalence has been reported, then the rate of misdiagnosis in the US is very high. That's true even if we assume that there was a lot of bias in who answered the survey in this study and take the denominator to be the number of people who were asked the question.

(I haven't double checked all this, so please go to the source before using anywhere.)
 
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Jonathan Edwards said:
They don't turn to the criteria in practice, and shouldn't. Doctors should not be interested in yes or no pigeonhole medicine. They should be aware of probabilities and possibilities all the time and make judgements on management based on uncertainties.
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That makes sense. But how does the ICD-system fit into this whole thing then? Is it just a construct for another purpose?
 
Sasha said:
No personal stories, please! :) I'm looking for research findings on what percentage of people diagnosed with ME/CFS probably don't actually have it.

Do we know?
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I think what would be most useful is figuring out what percentage of people that meet ME/CFS criteria are later discovered to have another condition. In the NIH study at least a few of the dozen or so patients that made it through to the final screening were found to have other medical issues. If those people found treatment for their other issue and recovered, they probably didn't also have ME/CFS.

The question about what % of people diagnosed with ME/CFS actually meet the criteria is less important to me as that is just a question of how competent the doctors are.
 
Sasha said:
Can we even say that we have evidence that it happens? If you wanted to say this in a paper, could you back it up?
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Yes, I worked as a physician for 35 years without ever diagnosing ME/CFS and I now realise I should have done. Physician colleagues at my seminar insisted that ME/CFS does not exist.

As to diagnosing without fitting criteria, I am less sure but the US paper indicated that was the case. (Sorry I forget the citation.)

If I wanted to say it in a paper I would just say it anyway but refer to the US paper if I could find it!
 
Jonathan Edwards said:
Yes, I worked as a physician for 35 years without ever diagnosing ME/CFS and I now realise I should have done.

As to diagnosing without fitting criteria, I am less sure but the US paper indicated that was the case. (Sorry I forget the citation.)

If I wanted to say it in a paper I would just say it anyway but refer to the US paper if I could find it!
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:thumbup:

Jonathan Edwards said:
Physician colleagues at my seminar insisted that ME/CFS does not exist.
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That's weird. On what basis? Did you have the impression it was all/most of your colleagues at the seminar?
 
Sasha said:
Can we even say that we have evidence that it happens? If you wanted to say this in a paper, could you back it up?
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I think there has been a paper or two reflecting diagnosis numbers in certain areas and the prevalence was much higher in certain areas than others, presumably largely because there were certain doctors or clinics that were "overdiagnosing" (of course there's also patients that travel wide and far to see certain doctors and clinics but that's a different thing) whilst in other areas nobody was diagnosing.
 
In "Epidemiological characteristics of chronic fatigue syndrome/myalgic encephalomyelitis in Australian patients" (Clin. Epidemiol. 2016;8:97-107), 535 patients who had been diagnosed by a primary care physician were assessed; of these:
30.28% met Fukuda criteria. A further 31.96% met both Fukuda criteria and International Consensus Criteria. There were 14.58% reporting chronic fatigue but did not meet criteria for CFS/ME and 23.18% were considered noncases due to exclusionary conditions.
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Additionally, some information can be gleaned from the number of patients excluded from various trials for not meeting inclusion criteria: I don't recall seeing a paper where this data has been collected systematically but just one brief example: in PACE, 3158 referred-in patients were screened for eligibility, of which 1698 did not meet the primary eligibility criteria & 1011 did not meet their primary (Oxford) diagnostic criteria.
 
Hutan said:
This recent study of about 30,000 people reported incredibly high rates of people reporting having been diagnosed with CFS in the US:
The Physical and Mental Health of Post-9/11 Female and Male Veterans: Findings from the Comparative Health Assessment, 2025, Dursa et al


If we believe that about 0.4% of the population actually has ME/CFS and that there is no reason for the prevalence to be higher in the US than in other countries where the 0.4% prevalence has been reported, then the rate of misdiagnosis in the US is very high. That's true even if we assume that there was a lot of bias in who answered the survey in this study and take the denominator to be the number of people who were asked the question.

(I haven't double checked all this, so please go to the source before using anywhere.)
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was the nondeployed still veterans though, just not deployed to x, y, z? or were they civilians?

I guess the other thing I'd be interested in is that given the availability of healthcare is linked to wealth then there may be the possibility that the health assessment itself was seen as an incentive by certain parts of the population, including those who might have ongoing illness which for whatever reason had not been gotten to the bottom of?
 
Eddie said:
I think what would be most useful is figuring out what percentage of people that meet ME/CFS criteria are later discovered to have another condition. In the NIH study at least a few of the dozen or so patients that made it through to the final screening were found to have other medical issues. If those people found treatment for their other issue and recovered, they probably didn't also have ME/CFS.

The question about what % of people diagnosed with ME/CFS actually meet the criteria is less important to me as that is just a question of how competent the doctors are.
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Agree. And for this reason I think complete exclusion of personal stories misses the point here, some inside context helps interpret things and what is important. What is powerful is being able to where relevant utilise the experience of a large number of patients who have been on that front line to contextualise where the potential for error is.

I know I assumed I was so ill with certain things that I had something else (plus the old cfs description did not fit) it was only when around 2017/18 PEM etc and the CDC description came about that weirdly it started to become close to what I had (from markers over the years as well as symptoms). Now I'm so ill and have so many years of trial and error I may well also have something else but most of those wouldn't explain how debilitated I am, or would have either finished me off or had some obvious flag like a green nose appearing by now.

I think even when we have it ourselves and meet others with it we all have been made to live in such a precarious world that we have had to often hide things differently, plus even if we have the same thing and are affected in the same way can have quite different patterns going on. eg if someone gets PEM 12 or 36hrs later that means it reverses their sleep vs someone who has a different timescale for PEM and different situation, maybe slightly different symptoms in a different way. Even from here it seems obvious there are different groupings, whether that turns out to be 'types' or not.

Without any of us feeling safe to start being really in-depth with anyone I don't think even we are in a position to get a sense of who does or doesn't have a misdiagnosis until we've known them a long time and those I have generally very much do have ME/CFS. It is just some turned out to also get something else significant on top. In that situation in the UK, if I had another significant diagnosis then I would be doing all I could do disappear ME/CFS from my record even where I still had it because if you need to deal with the healthcare system it would be the safe thing to do given to too many it acts as a red flag to a bull.

On the other hand we do need that data on how many ended up with additional diagnoses because it needs to be on a list of differentials or comorbidities to keep an eye on that could be actually ameliorated. But sadly I think once we get certain labels many of us are less likely than those without it to get things looked into with an open mind so such diagnoses might be lower.
 
Catching up with this thread again, and this MERUK page references two UK studies in which only about half of GP-referred 'ME/CFS' patients had their diagnosis confirmed in specialist centres:


In the first – originally published in 2010 in the Journal of the Royal College of Physicians Edinburgh (1) – researchers examined the records of every patient referred by local GPs to the Newcastle CFS/ME Clinical Service. The key finding was that 103 (40%) of referrals were eventually diagnosed with other conditions which could explain the concatenation of symptoms. The main alternative diagnoses in these patients were fatigue associated with a chronic disease (47% of all alternative diagnoses); a primary sleep disorder (20%); psychological/psychiatric illnesses (15%, most commonly, depression, anxiety and post-traumatic stress disorder); and cardiovascular disorders (4%).

The second, recently published report examined the prevalence of alternative diagnoses in patients referred by GPs to the specialist clinic at St Bartholomew’s Hospital, London (2). Its major finding was that a diagnosis of “CFS” was eventually confirmed in only 54% of patients. Of the rest, 53 patients (21%) were given alternative medical diagnoses (most commonly primary sleep disorders, endocrine disorders, nutritional disorders and pain disorders), while 54 patients (22%) received alternative psychiatric diagnoses (most commonly a depressive illness or anxiety disorder).

These reports provide clear, formal evidence that almost half of patients referred from primary care with a diagnosis of ME/CFS actually have something else wrong with them – a fact that is not discovered until they are lucky enough to be seen at a specialist clinic. This seems like misdiagnosis on a grand scale.
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This seems like good evidence of widespread misdiagnosis to me, at least in the UK, unless I'm missing something?
 
It's not clear from your summaries whether the people referred already had an ME/CFS diagnosis from their GP, and were being referred for treatment, in which case they were misdiagnoses. Or whether they were referred because the GP hadn't established a diagnosis, and was referring them for diagnostic assessment, in which case they were not so much misdiagnoses as awaiting diagnosis.
 
Trish said:
It's not clear from your summaries whether the people referred already had an ME/CFS diagnosis from their GP, and were being referred for treatment, in which case they were misdiagnoses. Or whether they were referred because the GP hadn't established a diagnosis, and was referring them for diagnostic assessment, in which case they were not so much misdiagnoses as awaiting diagnosis.
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That's an excellent question! I can't find anything in the Newcastle paper that would allow that kind of distinction (haven't had time to look at the other) but I wonder if it would be standard practice for GPs to make a referral to a specialist clinic if they were in doubt of the diagnosis (of any condition, let alone ME/CFS).

@Jonathan Edwards, does that happen?

Bit of a shocker that some of the supposed PwME actually had diabetes. You'd think that would be obvious.
 
Sasha said:
I wonder if it would be standard practice for GPs to make a referral to a specialist clinic if they were in doubt of the diagnosis (of any condition, let alone ME/CFS).
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That always used to be the main point of specialist clinics - to see what the diagnosis actually was! The idea that you can only refer patients who definitely have a diagnosis to the clinic with that name is crazy - although it is probably NHS policy snowlike som many crazy things.
 
Sasha said:
These reports provide clear, formal evidence that almost half of patients referred from primary care with a diagnosis of ME/CFS actually have something else wrong with them – a fact that is not discovered until they are lucky enough to be seen at a specialist clinic. This seems like misdiagnosis on a grand scale.
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Many English specialist ME/CFS services are therapist lead and do not undertake diagnosis, which means if these referrals already had an inappropriate ME/CFS diagnosis they would have been treated inappropriately (though there is also the potential side issue as to how appropriate their intervention is for those with an accurate ME/CFS diagnosis).

However some such services do require a consultant diagnosis before accepting a referral.

[added in the coloured words to clarify previous ambiguity ]
 
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Jonathan Edwards said:
That always used to be the main point of specialist clinics - to see what the diagnosis actually was! The idea that you can only refer patients who definitely have a diagnosis to the clinic with that name is crazy - although it is probably NHS policy snowlike som many crazy things.
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And that's a massive problems with the current "specialist clinics" for ME/CFS. Many of them can't or won't even order a simple blood test . A patient with probable or possible ME/CFS gets discarded into a therapist led service without anyone else ever being present. There needs to be a place where these people can go, where a "specialist" is present and where there is some form of ongoing monitoring and the possibility to see an appropriate person, especially in situations where new medical problems arise, which definitely occurs in ME/CFS as it does elsewhere, rather than a pure service of discarding these people.
 
JemPD said:
The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same - PubMed

Alternative diagnoses to chronic fatigue syndrome in referrals to a specialist service: service evaluation survey - PubMed

Havent checked either of them for reliability etc (lol not that i'd be best person to do that anyway), but the Newton study was cited a lot IIRC
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One problem here is that the 13% unexplained (I think referred to also as "idiopathic" by the NCU team) will fall under the category of "Unexplained multiple physical symptoms" and that is a direct ticket to BPS since the RCPsuych "explains" that MUPS is not unexplained and of various unknown causes incl biophysical but is BPS. So there you go , out of the caring arms of Newcastle into the waste bin of BPS.
Beyond that ME/CFS is describable according to criteria but is it "explained" is it not also idiopathic? Furthermore is a differential an excluder? CAn you have e.g MR=E and sarcoid? And again if PEM is the decider has everyone agreed on how PEM is described and/or ascertained?
 
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