What percentage of doctors think ME/CFS is psychosomatic?

[Sasha]

We know that the various 'it's not a disease' models (BPS, MUS, predictive coding, etc. etc. etc.) of ME/CFS have been prevalent but do we know how prevalent? And do we know how/whether that has been changing over time, with the PACE scandal, lots of doctors getting Long Covid, etc.?

Can we go beyond anecdote and call on any survey literature?

 

[Sean]

A useful data set could be the current roll-out of FND clinics in the UK. How many, how much funding they are getting, how loud the advertising for it is, etc.

Then compare and contrast to that for ME/CFS post-NICE 2021.

 

[Sasha]

A useful data set could be the current roll-out of FND clinics in the UK. How many, how much funding they are getting, how loud the advertising for it is, etc.

Then compare and contrast to that for ME/CFS post-NICE 2021.

I'm not sure that would reflect the percentage of doctors who hold to that model. I find it weird that this is something that impacts the lives of PwME so much, but we walk into every new clinical encounter with no idea of the likelihood that we're dealing with a doctor who isn't facing reality.

With all the endless surveys that PwME are subject to, you'd think that someone would be trying to get this info out of doctors - although I imagine it would be very difficult to get responses, given their workload and higher priorities.

 

[BrightCandle]

One way to go about estimating it is to get a percentage and a count from individuals. For example mine would be 99% with 108 HCWers. Given enough such estimates you could get a view how prevalent it appears to be.

The other one is the Isle of Sky paper on prevalence in the UK, they found about 90% of GPs offices had no patients with ME diagnosed and only 3 in total that seemed to be at the peak, the data in there would get you to an estimate in the 80-90% range.

 

[Sasha]

One way to go about estimating it is to get a percentage and a count from individuals. For example mine would be 99% with 108 HCWers. Given enough such estimates you could get a view how prevalent it appears to be.

I'm sorry you've had such a horrible experience! But I'm not sure that most of us would know. For the most part, I have no clue what my doctors think because we simply don't discuss my ME. In over 40 years, encountering many, many healthcare professionals, not one doctor has ever said to me that they thought my condition was psychosomatic, but I have no idea how many are sitting there silently thinking it but dodging the issue.

The other one is the Isle of Sky paper on prevalence in the UK, they found about 90% of GPs offices had no patients with ME diagnosed and only 3 in total that seemed to be at the peak, the data in there would get you to an estimate in the 80-90% range.

I think that only tells us about estimated prevalence, not about the theory that doctors hold about the condition that they're diagnosing.

 

[Yann04]

Out of my personal experience with doctors, not including those I specifically chose because of knowledge of ME. Sample is about half split between Swiss and Austrian doctors. n=9.

Believes it’s psychosomatic (ie. mostly psychological factors): 2 (~20%)
Believes is a mix of psychological and physical factors: 1 (~10%)
Doesn’t believe it exists, believes it’s an “alternative medicine” diagnosis (à la Adrenal Fatigue): 4 (~45%)
Believes it’s a biomedical illness: 2 (~20%)

 

[Sasha]

I'm so sorry that PwME are encountering these attitudes so often! The question is, though, is there any survey data?

 

[Nightsong]

I'm so sorry that PwME are encountering these attitudes so often! The question is, though, is there any survey data?

I was curious, too, so started taking a look through the literature:

I think the most recent British survey was just three years ago (Hng 2021) - 44 questionnaires from "a group of hospital doctors attending a training event":

Few knew how to diagnose it and most lacked confidence in managing it. None of the respondents who had had teaching or prior experience of ME considered it a purely physical illness. Overall, 82% of participants believed ME was at least in part psychological. Most participants responded correctly to a series of propositions about the general epidemiology and chronicity of ME.

There was little knowledge of definitions of ME, diagnosis, or of clinical manifestations. Understanding about appropriate management was very deficient. Similarly, there was little appreciation of the impact of the disease on daily living or quality of life. Where some doctors expressed confidence diagnosing or managing ME, this was misplaced as they were incorrect on the nature of ME, its diagnostic criteria and its treatment.

There are few recent papers, it seems. Going back further, in 2005 Bowen et al surveyed 1054 GPs:

811 GPs (77%) returned the questionnaire. 48% of GPs did not feel confident with making a diagnosis of CFS/ME and 41% did not feel confident in treatment. 72% of GPs accepted CFS/ME as a recognisable clinical entity and those GPs had significantly more positive attitudes.

Brimmer et al reported on attitudes in two larger U.S. based survey samples in 2010. At first glance looks very slightly more promising in the US?

Historic papers that I came across but haven't looked at:

* Asbring et al - semi-structured interviews with 26 physicians (Sweden, 2003)
* Raine et al - random sample of 46 GPs in England from 2004
* Thomas et al - a 2005 study - of 120 surveys sent to Welsh GPs only half believed CFS exists
* Ho-Yen - a 1991 study - of 178 replies 71% accepted the existence of CFS, 7% did not and 22% undecided.

 

[Kiristar]

Maybe I've been unlucky but, excluding my actual private ME specialist, I can't actually think of any Dr I've met who *doesn't* think it psychosomatic, although only 2 have openly said so to my face, the rest are very furtive and avoid discussing it.
Because it's never discussed, I guess I am assuming that those who believe it's biomedical would make an effort to let me know rather than display stigmatising behaviour.
One of those 2 suggested a psychiatric inpatient stay as a treatment saying it would "get results".
But at least those two were open and I knew where I stood.
Its gotten so distressing I now have my husband interact with my GP on my behalf.

 

[Sasha]

I think the most recent British survey was just three years ago (Hng 2021) - 44 questionnaires from "a group of hospital doctors attending a training event":

Wow, that is a depressing result. (

It would be interesting to interview doctors who have developed ME-style Long Covid to really go into some depth about why doctors find it so easy to believe this stuff, because presumably most of them did, before they got sick.

 

[Yann04]

It would be interesting to interview doctors who have developed ME-style Long Covid to really go into some depth about why doctors find it so easy to believe this stuff, because presumably most of them did, before they got sick.

The way I see it medicine is not a science. It’s a heirarchical culture formed around interpretions on how to apply a science “huaman biology”. In medical training, students are not taught critical thinking or how to slow down and think about things, they are taught how to follow protocols and guidelines, extsensive memorisation, how to make split second decisions, etc.

At the end of the day, medicine is based around a culture of conformity and a heirachy, cohesion is very much valued, to the point we commonly see people reject sound scientific evidence in favour of conforming the culture’s majority opinion. We very much saw it with BPS, when a few very powerful people at the top of the medical heirarchy completely convinced most practitioners ME is psychsomatic. There’s a reason established norms stick around for decades in the medical system, long after scientific evidence has wholly disproven them.

 

[Jonathan Edwards]

I think the Hng piece is fairly realistic. The great majority of physicians I know do not really have ME/CFS on their radar. Nearly all have never heard of the PACE trial.

For older physicians I am not sure that asking if they believe anything about ME/CFS in a questionnaire is likely to produce a truthful answer.

 

[Sasha]

I think the Hng piece is fairly realistic. The great majority of physicians I know do not really have ME/CFS on their radar. Nearly all have never heard of the PACE trial.

But it it's not on their radar, how are they managing to hold on to the belief that it's at least partly psychosomatic when faced with patients who don't have any obvious psychological dysfunction? And are getting severely disabled after a viral illness, which surely screams 'biomedical', not 'psychosomatic'?

Do PwME not understand the doctors' point of view because there really are some psychosomatic conditions that doctors see that we don't?

For older physicians I am not sure that asking if they believe anything about ME/CFS in a questionnaire is likely to produce a truthful answer.

What do you think about interviewing doctors with Long Covid ME/CFS about their thinking?

It seems to me that individual PwME faced with a doctor in a consultation, and our charities and campaign groups, both have a need to persuade doctors away from this psychosomatic model but we don't understand why they hold it or what would shift them out of their position. I haven't been impressed by what the charities have done thus far - as you've pointed out before, they've been too keen to push weak biological findings.

 

[Braganca]

In Ireland, I don’t feel that many doctors believe it is psychosomatic — maybe other Irish residents will disagree with me. They just think we’re sick with something they don’t understand or can treat. Some of the consultants I’ve seen know it’s debilitating even if they don’t know much or anything about the disease, although they don’t understand how extremely debilitating it is.