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Does It Matter What You Call It? Lay Beliefs for Overcoming CFS, ME, and PVFS

Dolphin

Senior Member
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17,567
Does It Matter What You Call It? Lay Beliefs for Overcoming Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, and Post-Viral Fatigue Syndrome

Ethical Human Psychology and Psychiatry, Volume 18, Number 2, 2016, pp. 150-162(13)


Abstract:

The study reported here examines variation in beliefs about how best to overcome a health complaint when it is nominally designated in one of 3 different ways, namely, as chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), or as post-viral fatigue syndrome (PVFS).

In a repeated measures design, the participant sample (n = 140) was presented with an adapted version of Knapp and Karabenick's (1985) questionnaire which asks respondents to rate the degree to which single-item coping strategies would be most useful for overcoming each of the 3 designated complaints.

Factor analysis of the coping items produces 3 groups of items as belief components: "self-reliance," "seeking help," and "external control."

The chronic fatigue syndrome appellation invoked significantly higher scores on the self-reliance factor and on external control than did the other two diagnostic labels.

However, seeking help was considered to be the most important strategy for overcoming all three of the designated incarnations of the condition.

In conclusion, "chronic fatigue syndrome" is the linguistic construction that bestows the most beneficial outlook for assisting individuals to overcome this complaint.

Thereby, the use of this descriptor in current medical nomenclatures arguably is well placed.

Keywords: CHRONIC FATIGUE; LAY BELIEFS; MYALGIC ENCEPHALOMYELITIS; POST-VIRAL

Document Type: Research Article

DOI: https://doi.org/10.1891/1559-4343.18.2.150

Publication date: 01 August 2016
 

Dolphin

Senior Member
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17,567
In a similar vein, a longitudinal study by Hamilton, Gallagher, Thomas, and White (2005) followed 18,122 patients diagnosed with either CFS, ME, PVFS, or fibromyalgia. Patients diagnosed with ME had a significantly worse prognosis compared to the other conditions. The authors comment that the diagnostic label itself appears to alter patient beliefs about prognosis, along with suggesting a poorer degree of treatability, thereby resulting in less use of health care services.
Other interpretations are possible of this data i.e. that the names didn't have any causal effect and simply that different types of patients may end up with different labels.
 

Dolphin

Senior Member
Messages
17,567
This is where they are coming from.

However I don't accept that overcoming CFS/ME/PVFS is like overcoming obesity for example which is much more amenable to factors an individual can control and adjust.

Attitudes and beliefs about the propensity to overcome an illness and how they may be related to factors such as self-reliance and seeking help have been studied by Furnham and McDermott (1994). They examined the lay beliefs of 122 participants regarding the efficacy of strategies for coping with common health and well-being problems, namely, obesity, marital problems, insomnia, stuttering, and drug addiction. A factor analysis of the belief statements revealed three components: self-reliance, seeking help, and internal–external control. Self-reliance as a strategy for overcoming health complaints was found to be most salient for drug addiction and obesity, whereas seeking help was found to be most salient for overcoming drug addiction, stuttering, and insomnia. Belief in external control was not considered important for overcoming any of these complaints. A meta-analysis by Furnham and Hayward (1997) found a similar landscape of belief factors such as inner control, social consequences, understanding, receiving help, and fate. Inner control and understanding were seen as highly promising factors for recovery. Across the studies reviewed, they observed a consistent theme that being self-reliant and understanding of a problem is integral to taking an active role in managing one’s own condition. Likewise, seeking help, being compliant, perceived control, and being acceptant of the condition is viewed as beneficial to recovery.
 
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Dolphin

Senior Member
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17,567
Procedure

Respondents were asked to consider the three labels and for each to rate on a scale from 0 to 9 the importance of the 24 strategies, from not important at all to extremely important, the former indicating an ineffective strategy and the latter a most effective one for overcoming the problem as defined.
 

Dolphin

Senior Member
Messages
17,567
The third factor is called external locus of control. However I think it is a mixed bag and not sure how much I would read into it at a group level.

12. How much a person stays away from situations that make the problem worse

16. How intelligent the person is

17. How much a person believes in God

19. Whether there is something wrong with the person’s brain or nervous system
Fortunately we are also given the data for the individual questions.
 
Messages
13,774
I hate this sort of stuff.

Poorly conducted studies to try to justify manipulating other human beings to try to make their beliefs more 'helpful'.

They do also tend to ignore the fact that encouraging the view those with CFS have greater control over their health can have costs as well as benefits.

I'd just been pm'd about an old White lecture I'd done a partial transcript of which was like this.

And they also said at that conference [to define criteria], emphatically, that it is 'organic' (what does that word mean), incurable, neurological disease, okay. Now they may be right, they may be wrong, but what message does this give our patients? Now here is the latest edition, that you've seen outside, of ME Essential. Now there are two levels to understand this picture: one, brave attempts of a woman to cope with a severe, disabling, incurable disease. Trying to live a normal life despite being ill. But what message does that give our patients, when we say to them 'you have an incurable neurological disease'? Is it a more useful a message for our patients to say that, or to say 'Graded Exercise Therapy is a safe and effective treatment if it's done properly'? Because the two statements cannot, at this moment, be joined together.


And here's the evidence. A study again from GPRD of the effect of a doctor saying 'you've got ME' to patients compared to saying you've got 'CFS'. What we found was those labelled ME their illness lasted longer than those labelled having CFS.Those ME patients have more consultations both in general and specifically for fatigue with their general practitioner, in spite of the fact that before diagnosis, because this was a longitudinal study, there was no difference in CFS and ME, in consultation rates for fatigue or for general consultation rates - suggesting that the diagnostic labels we use had meaning not just for us, but for our patients, particularly when they look on the internet for what ME and CFS means. We have to be very cautious in using these labels without adequate explanation for what they really mean, and how we're going to help our patients.

So I'm going to conclude, to keep John happy:

CFS/ME exists. No doubt in my mind. It's hard to define. I would commend to you the broad based definitions rather than the ones with lots of symptoms. Both heterogeneity and comorbidity should be addressed. Both in treatment and when looking at aetiology.And it's very important that we are clear of what we mean when we give a diagnosis to our patients. Thank you very much for listening.

I think this is the video:
 
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JaimeS

Senior Member
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3,408
Location
Silicon Valley, CA
Other interpretations are possible of this data i.e. that the names didn't have any causal effect and simply that different types of patients may end up with different labels.

What a 'duh' moment. ME/CFS criteria is more stringent than Fukuda CFS. How they were diagnosed obviously affects how serious their condition is.

....reading the paper, they go on to say that the more implicitly biomedical 'ME' may well be the reason behind people with "ME" taking it more seriously:

Wojcik et al. (2011) commenting on Hamilton et al. (2005) accredit these findings to the biological connotations of the ME nomenclature which implicitly excludes the psychosocial basis of interventions such as cognitive behavioral therapy or graded exercise.

You've got to appreciate a study that draws the conclusion that people with CFS are convinced that belief in a higher power has a significant impact on whether or not they'll recover, but people with post-viral fatigue don't.

I kid you not:

17. How much a person believes in God 2.19a 2.06b 1.76ab 4.47 .02

First value: CFS
Second value: ME
Third value: post-viral fatigue
(Last value is p value).

Actually, this might be explained by the fact that people presume post-viral fatigue will go away regardless. CFS is chronic, and therefore requires some more divine intervention?

....they actually seem a bit befuddled about the way it all fell out. CFS patients are more likely to agree that they can shift their illness with determination, and ALSO more likely to say that they need lots of help and support (and that it's due to stuff happening in the brain, genetics, and god -- 'external' loci).

Their befuddlement about the way this didn't quite seem to work is a breath of fresh air in comparison to the old hands at BPS. One can only hope they are aware that this isn't a tenable hypothesis.

Their analysis of the old research wasn't bad, though.

-J
 
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15,786
Full text at http://sci-hub.cc/10.1891/1559-4343.18.2.150

This is very weird. They're asking random people (not ME patients) about their perceptions of a disease based on what the name is, and concluding that a less serious name should be used because random people think it sounds like something that's easier to control.

It's all based on the premise that a disease that sounds easier control must be easier to control and even "overcome". On that premise, we should go back to calling MS hysterical paralysis :confused:
 

Snow Leopard

Hibernating
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Location
South Australia
Full text at http://sci-hub.cc/10.1891/1559-4343.18.2.150

This is very weird. They're asking random people (not ME patients) about their perceptions of a disease based on what the name is, and concluding that a less serious name should be used because random people think it sounds like something that's easier to control.

The authors views aside, it shows that there is strong bias amongst the lay public about whether self-reliance (willpower etc) is beneficial for overcoming the illness. In that sense it is useful.

So far there has not been any prospective randomised trials testing whether there is any practical effect of choosing different names, hence any discussion of benefit or harm right now is purely speculative.
 
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3,263
This article actually empirically confirms what we've always suspected: referring to our illness as chronic fatigue syndrome trivialises it in the minds of healthy people - nothing a little willpower can't overcome!

Actually, a lot of the stuff is sort of self-contradictory. You have to be self-reliant, yet at the same time compliant to overcome CFS!
 

RogerBlack

Senior Member
Messages
902
What a 'duh' moment. ME/CFS criteria is more stringent than Fukuda CFS. How they were diagnosed obviously affects how serious their condition is.
J

While this may not be wholly false, In the UK, and as I understand the USA at least, this is not true.

Clinicians do not discriminate between CFS/ME/SEID, and simply use the name most common at the time.

At the very least, this would introduce the confounding factors of diagnosis stratification by age.
However, if this is a a survey of random people, as I understand it is, the number of people who can cite the Fuduka criteria would be precisely zero.

'What do you call it' seems to actually matter.
I've been contemplating how to explain it better, and have come to the conclusion that Myalgic Enchephalomyelitis is probably about the best, because it's 'sciency'.
Few people will understand it, it sounds a bit like 'multiple sclerosis', and the educated ones might pick up 'enchephalo' and feel good about themselves.

On the other hand, If you tell them 'chronic fatigue syndrome', the immediate thought is not 'Oh, he's got some wierd disease, but 'I get tired too'.'
 
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JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
While this may not be wholly false, In the UK, and as I understand the USA at least, this is not true.

Clinicians do not discriminate between CFS/ME/SEID, and simply use the name most common at the time.

At this time, studies show that people who meet CCC criteria are on average sicker than those who meet Fukuda alone.

In the US you are almost guaranteed to be diagnosed with "CFS".

If you end up being diagnosed with "ME/CFS" instead, you are much, much sicker than the average "CFS" patient. You were so sick that the physician could not imagine diagnosing you with "fatigue" and went searching to find "ME/CFS". Or the patient did!

I've been contemplating how to explain it better, and have come to the conclusion that Myalgic Enchephalomyelitis is probably about the best, because it's 'sciency'.

The study here quotes Jason's study that found that physicians-in-training were most likely to have the impression that this was a serious illness overall. I'm simplifying a bit, you should read the original; it's cited here.

Jaime
 

me/cfs 27931

Guest
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1,294
Just to muddy the "Does It Matter What You Call It?" waters, a little anecdote (and apologies for all the acronyms)....

I was diagnosed using SEID criteria. My primary care doctor wanted to give an ME diagnosis. However, my HMO (Kaiser Permanente) only allows a CFS diagnosis.

So, it doesn't matter how sick you are or what criteria was used: you get a CFS diagnosis.

CFS is it. There is no available diagnostic code in the computer system for ME, ME/CFS, or SEID. My doctor can enter ME as his diagnosis, but the computer system just auto-changes it back to CFS.
 

Jenny TipsforME

Senior Member
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1,184
Location
Bristol
They do also tend to ignore the fact that encouraging the view those with CFS have greater control over their health can have costs as well as benefits.

concluding that a less serious name should be used because random people think it sounds like something that's easier to control.

This article actually empirically confirms what we've always suspected: referring to our illness as chronic fatigue syndrome trivialises it in the minds of healthy people - nothing a little willpower can't overcome!

Actually, a lot of the stuff is sort of self-contradictory. You have to be self-reliant, yet at the same time compliant to overcome CFS!

It's funny how often we make completely different conclusions from the researchers. Yes CFS SOUNDS controllable. To an extent this is an illusion. An actual false illness belief. Pacing helps. Supplements help. But there's a lot of (bad) luck involved for the time being at least.

Confirms that CFS is bad for advocacy. But I worry that if we just stop using it, the people who really need community won't know we likely have the same thing.
 

Dolphin

Senior Member
Messages
17,567
First value: CFS
Second value: ME
Third value: post-viral fatigue syndrome
(Last value is p value).

Questions that show people would be blamed most for not overcoming the illness if it was called CFS (not all statistically significant)

1. How hard a person tries
4.56
4.14
4.11
.05

2. How much willpower (inner strength) a person has
5.30a
5.07
4.70a
.01

14. How much self-control the person has
4.81
4.41
4.53
.15

22. How much the person really wants to get better
6.64
6.21
6.22
.03


23. Whether the person really wants to get better
5.89
5.84
5.44
.06


24. How much courage a person has to change his or her life style
6.24ab
5.64b
5.45a
.001



Procedure

Respondents were asked to consider the three labels and for each to rate on a scale from 0 to 9 the importance of the 24 strategies, from not important at all to extremely important, the former indicating an ineffective strategy and the latter a most effective one for overcoming the problem as defined.
 
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Dolphin

Senior Member
Messages
17,567
According to Afari et al. (2000), twins who used avoidant coping strategies were more likely to have CFS and suffer worse for this than twins who used problem-focused coping strategies.
This makes it sound like the so-called avoidant coping strategies caused the CFS. This was not a prospective study: the coping strategies were measured after the people were already ill: we don't know whether there were any differences before the people got ill.
 
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Dolphin

Senior Member
Messages
17,567
Furthermore, Edwards et al. (2001) found that belief in a psychological cause of CFS, a strong illness identity, belief in severe consequences of the illness, and little perceived control is associated with higher levels of anxiety and depression. Thereby, the perception of CFS/ME/PVFS as externally caused cannot be simplistically aligned with maladaptive coping.

Edwards, R., Suresh, R., Lynch, S., Clarkson, P., & Stanley, P. (2001). Illness perceptions and mood in chronic fatigue syndrome. Journal of Psychosomatic Research, 50(2), 65–68.
I don't recall the study. I found the first one interesting. If there was a causal relationship, this would mean that encouraging patients to believe there was a psychological cause of CFS would cause higher levels of anxiety and depression, something mental health professionals and and indeed everyone should be trying to avoid.

However there may not be a causal relationship.