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

[ah86445]

In Austria and Switzerland, a lot of doctors don’t seem to work by outright diagnosis, but more by saying you probably have X. And then treating you as if you have X.

As an Australian, I have also found this to be my personal experience too. It’s been a very vague and confusing journey.

 

[bobbler]

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?

I don’t think cfs or me/cfs diagnosis can be done by second-hand looking through records. No wonder we have some of those groupings suggested - eg the anxiety group or the fatigue from other illnesses or primary sleep disorder.

no goid me/cfs specialist would not be checking carefully with questions that relate to PEM and overdoing things regarding eg sleep or ‘feeling wired’ but we all know the biases and bucketing of those who aren’t forensic and just describe anything that might seem like anxiety to them as that.

it seems almost like this study is demonstrating the opposite- how important having a specialist biomedical doctor familiar with me/cfs doing the diagnoses is , with descriptions for GPs focusing on the overall and the idiosyncrasies of the illness (relating to PEM and the huge differences in energy and illness on days after exertion vs after rest) as much as lists of things the old days might have used like fatigue - ie the pattern.

and how risky using paper notes which could have taken more specific descriptions from a patient and summarised merely as ‘fatigue’ and then doubling that possibility if someone did good notes but the reader then does that

do we know for example whether the other chronic illnesses listed are ones the GP already knew of and were treating well, or ones they hadn’t looked into because the cfs 2007 guidelines allowed cfs to be used as a way of not doing so by using it as a pseudo label of hypochondria?

 

[Sasha]

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:

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.

I'm now wondering whether, as per @Jonathan Edwards, getting booted out of a clinical trial before it starts doesn't mean that you don't have ME/CFS but means that the research criteria used in trials are tighter than is appropriate in real life.

 

[Jonathan Edwards]

In Austria and Switzerland, a lot of doctors don’t seem to work by outright diagnosis, but more by saying you probably have X. And then treating you as if you have X. I guess it’s a way to save time for them?

Treating on probability is an integral part of good medicine because in a good proportion of cases probability is allow scan ever expect ascertain. The general public think that illness must fall neatly into diagnostic categories. It doesn't and we should not expect it. to because a lot of illness comes about through lots of factors coming together in different combinations and we do not have diagnoses for every combination.

Treating on the basis of probability when you could be more certain if you did more tests is not a good idea, and it is a huge problem primary care, but it does not mean that treating on the basis of probability is necessarily a bad idea.

 

[richie]

Treating on probability is an integral part of good medicine because in a good proportion of cases probability is allow scan ever expect ascertain. The general public think that illness must fall neatly into diagnostic categories. It doesn't and we should not expect it. to because a lot of illness comes about through lots of factors coming together in different combinations and we do not have diagnoses for every combination.

Treating on the basis of probability when you could be more certain if you did more tests is not a good idea, and it is a huge problem primary care, but it does not mean that treating on the basis of probability is necessarily a bad idea.

Preconceptions play a major role in what Drs have deemed probable. Getting the right tests can change the doctor's view of what is probable. 90's "medical" view of me a worthless congenital layabout "confirmed" by routine bloods. 00's it was fear of walkies and lack thereof. Now I have data which do not confer certainty but give me a far better chance of a reasoned hearing. I agree re. the challenge of neat categorisation and my test results have in fact only confirmed this opinion.

I appreciate the problems this poses in primary care.