Who said: Labeling patients with ME or CFS keeps them sick

I want to use this thread to collect studies suggesting that labeling patients with ME or CFS, makes them sicker (because it makes them think they have a real disease instead of psychosocial problems thay can overcome).

Thus far, I've found two:

Hamilton et al. 2005. The prognosis of different fatigue diagnostic labels: a longitudinal survey.
It reads: "There were important differences in outcome between the various fatigue labels, with ME having the worst prognosis and PVFS the best. This could be an adverse effect of the label ME itself."

Huibers et al. 2003. Fatigue, burnout, and chronic fatigue syndrome among employees on sick leave: do attributions make the difference?
It reads: "Fatigued employees might have a better prognosis than CFS patients because of a different labelling of fatigue complaints."

 

It is quite possible that that the criteria for CFS (and to a lesser extent ME) are not fit for purpose and do not adequately differentiate between CFS and other causes of fatigue meaning many cases of persistent fatigue, sleep issues and burnout are likely being mislabelled with CFS or ME therefore leading to poor outcomes.

 

Thanks for the info. We have a biopsychosocial fanatic in Sweden, Dr Jörgen Malmquist, who repeatedly has claimed that the name of the illness should be changed from "chronic fatigue syndrome" to "fatigue syndrome", because the term "chronic" suggests that nothing will improve and thus will make the prognosis worse. I never understood where he got this ridiculous idea, but your references here seem to be the answer.

The Oxford school has made tens of studies where psychotherapy has been used to modify the mindset of ME/CFS patients, and they have not been able to show any objective improvement. I have asked Dr Malmquist why he thinks that simply changing the name would do the trick, but, alas, never received an answer.

 

Based on my reading on the "other" forum I think there are some people who are diagnosed with ME/CFS by doctors who then don't monitor and treat their known health conditions as well as they should because they blame symptoms on the ME/CFS. I'm thinking specifically of hypothyroidism and nutrient deficiencies (because these are problems I have personal experience of), both of which can be treated - and in each case there is an optimal level of treatment that is often not aimed for, or maintained. There are often associated adrenal problems occurring alongside poorly treated hypothyroidism too.

Before S4ME existed I remember reading posts on the subject of the thyroid on PR where people had quoted their thyroid function test results or nutrient levels. And sometimes those results were (in my opinion) poor. And yet a doctor had said they were "normal" and the patient had accepted it. Other people answering the post would often say the same. Perhaps that person would feel better if their vitamin B12 was at the top of the range rather than near the bottom. Perhaps their iron and/or ferritin were close to the bottom of the range or even below it, and they would feel better with mid-range results. But the ME/CFS appears to trump everything in the minds of some sufferers, and those things which can be changed or improved are ignored. So yes - I think a diagnosis of ME/CFS can keep some people sick - or at least sicker than they need to be.

 

Sorry not feeling up to reading more than the abstracts at present. However I am suspicious of any study claiming an effect of naming because there are so many variables:
- at present we have no agreed objective measures of functioning or outcome
- with problems of definition can we be sure that the study did not include people with fundamentally different underlying conditions, can't remember the references, but upto 40% of people are misdisgnosed in relation to ME/CFS
- how do we know how comparisons of like with like are happening as there are no agreed objective tests for ME/CFS
- were the outcomes evaluated blind by assessors that did not know the diagnosis?
- were researcher beliefs controlled for?
- what motivates different diagnosticians to use different labels, how does this relate to any treatment or support subsequently available to patients
- if individual clinicians used more than one diagnosis, what factors were they using to to distinguish between patients
- did any naming effect show up on self reported outcomes or with objective outcomes, if just self reported people may feel obliged to report something consistent with the 'name' rather than their actual experience
- what form(s) of ME/CFS was included in the study: improving, stable, relapsing and remitting or deteriorating
- how severe were the patients included in the study
- clinicians' views may impact on both naming strategies and the make up their caseloads
[- how does cooccurring conditions relate to this]

It is very useful however collecting and evaluating these references.

Is there anywhere an attempt at an exhaustive bibliography in relation to ME/CFS? If not could we begin to think the best way of compliling/organising such a database?

 

I have not checked this out, but Vogt use this study to argue that believing it is physical make the prognoses worse
Cairns, R. & Hotopf, M. A systematic review describing the prognosis of chronic fatigue syndrome. Occupational Medicine 2005;55:20–31

Edit; and this
Barsky, AJ. The Iatrogenic Potential of the Physician’s Words. JAMA, 2017;318(24):2425-2426.

Edit again: and this to argue that mothers wrong focus on symptoms may make adolescents worse
Nijhof et al. Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial. Lancet. 2012 Apr 14;379(9824):1412-8

 

This may be a bit of a digression.

Have found a couple of sort of relevant studies in relation to Fibromyalgia, that give two very different approaches to understanding the impact of labelling. Unsurprisingly the one Wessely was involved in seems to be making a negative value judgement about people who end up with a Fibro diagnosis

Does the label “fibromyalgia” alter health status, function, and health service utilization? A prospective, within‐group comparison in a community cohort of adults with chronic widespread pain (2002) Kevin P. White, Warren R. Nielson, Manfred Harth, Truls Ostbye, Mark Speechley

https://onlinelibrary.wiley.com/doi/full/10.1002/art.10400

The impact of a diagnosis of fibromyalgia on health care resource use by primary care patients in the UK: An observational study based on clinical practice (2005) Gwenda Hughes, Carlos Martinez, Eric Myon, Charles Taïeb, Simon Wessely

https://onlinelibrary.wiley.com/doi/full/10.1002/art.21545

However, this much more general article on psychiatric diagnosis is perhaps more relevant to ME/CFS labelling and diagnosis, as it gives insight into the thinking of people wanting to do away with disgnoses all together. This seems very relevant to the MUS movement.

No more psychiatric labels: Why formal psychiatric diagnostic systems should be abolished (2014) Sami Timimi
https://www.sciencedirect.com/science/article/pii/S169726001400009X

[edited to correct formatting]

 

And this treasure:
http://www.simonwessely.com/Downloads/Publications/CFS/179.pdf
The act of diagnosis: pros and cons of labelling chronic fatigue syndrome
MARCUS J. H. HUIBERS AND SIMON WESSELY
Psychological Medicine, Page 1 of 8. (c) 2006 Cambridge University Press doi:10.1017/S0033291705006926

ABSTRACT
Background. One of the many controversies surrounding chronic fatigue syndrome (CFS) is the possible impact of the diagnostic label: is it disabling or enabling? In this paper, we discuss the pros and cons of labelling CFS.

Method. A narrative synthesis of the literature.

Results. Diagnosed CFS patients have a worse prognosis than fatigue syndrome patients without such a label. The ways in which CFS patients perceive themselves, label their symptoms and appraise stressors may perpetuate or exacerbate their symptoms, a process that involves psychological, psychosocial and cultural factors. Labels can also lead to conflicts with doctors who fear diagnosis might lead to worse outcomes. However, on the other hand, finding a label that fits one’s condition can provide meaning, emotional relief and recognition, whilst the denial of the diagnosis of CFS in those who have already reached their own conclusion can be very counter productive. The act of diagnosis therefore seems to be a trade-off between empowerment, illness validation and group support, contrasted with the risk of diagnosis as self-fulfilling prophecy of non-recovery.

Conclusions. The answer to the question of ‘to label or not to label’ may turn out to depend not on the label, but on what that label implies. It is acceptable and often beneficial to make diagnoses such as CFS, provided that this is the beginning, and not the end, of the therapeutic encounter.

 

Well, if that worked let's just rename cancer "the ouchies" and I guess that'll be that, problem solved, since nobody would ever die of "the ouchies", it would even be embarrassing to the cancer cells who would be shamed into behaving.

 

Can I suggest you tag this with who-said? It's what I've been using so that these types of posts are easy to find.

https://www.s4me.info/tags/who-said/

 

This happens in all complex chronic illness, and physicians do it, too. I have heard so many anecdotal reports that I know it's "a thing" but I am having trouble finding the right combination of search terms in pubmed or Google scholar to generate an article -- that is, if anyone has ever written about it being an issue for the clinician!

This also goes against the zeitgeist that chronic illness patients are "symptom-focused" and "catastrophizing" ... so maybe there aren't articles about patients doing this, either.

All the same, your reasoning is sound. I am as well as I am (!) in part because I double-check all my medical results, don't expect my doctor to know a hawk from a handsaw, do a lot of research, and consider (part of) my condition mutable and therefore part of THAT within my control.

There does seem to be a group that doesn't respond to many interventions, and I guess they'd feel like they're spending their time (and money?) for nothing, though. I get that.

 

I did start a Google doc for frequently-referenced facts and ideas. Anyone is welcome to contribute, use, and share!

https://docs.google.com/document/d/1okX0o62pWabIX8lG-Qdg_jXwq8roIhaKLytFRhdRjho/edit?usp=sharing

And

I think this should be a place where we put facts that we need to use often, and people can add those facts to MEpedia or anywhere else they like. MEpedia is a vast repository: I would personally find it valuable to have a more concise list of the facts we use/need over and over again.

 

And some 'disambiguation'-style input, like "people often say X" but in actuality "the reference really says Y".

 

Great info @JaimeS. These frequently used facts should also be a thread in advocacy, IMO.

 

In relation to MUS and to the make up of the new NICE Committee there was quite a lot of discussion here around [the literature expressing the belief that] that people with MUS should not be medically assessed because this reinforces their 'false' illness beliefs.

Is that relevant to this thread? It does seem to contain the idea that some labels are good and others are bad because of how the patients react to them.

An aside, there is the idea that in MUS patients should not be assessed as this reinforces their 'false' illness beliefs, but also there is quite a lot in the literature too on how to interact with patients such that they do not realise the clinician thinks they are lying and believes their symptoms are psychogenic.

Is it that not using medical assessments to avoid reinforcing the idea that and deliberately avoiding challenging the presumed 'false' illness beliefs (at least until you have got them into GET and PACE-type CBT) are intended to ensure minimum risks of challenges to the clinicians' false psychogenic illness beliefs?

[Added - There is also the idea that names such as 'functional neurological disorders' or 'somatoform' conditions are useful as they enable the diagnostician to intend one thing, ie a psychiatric diagnosis, while the patient understands something different, ie their physical symptoms have been validated.]

 

If as the BPS crew seem to believe the illness labels impact on people's actual condition, presumably they are also by implication saying the right labels would improve our health.

Should we change our labels according to the symptoms we are experiencing on any particular day in order to mitigate the symptoms of that day?

Should I stop describing the headaches, that leave me immobile in a darkened room and trigger vomitting, if I try to do anything as 'migraines' and call them 'bad hair' days instead? What new labels do you think we could use? What new labels could we use to treat other conditions such as motor neurone disease or CVA? Perhaps referring to amputees as having short arm or short leg syndrome would help mitigate their condition?

 

Asserting that labels matter without strong evidence just shows us what inherent biases they have...

 

https://www.s4me.info/threads/who-said-dont-bother-testing-patients.6532/