The invisible burden of chronic fatigue in the community - a narrative review (2019), Fatt et al

I don't understand why they're talking about "conversion" of chronic fatigue into CFS. The demarcation is purely diagnostic - whether there is another medical condition that is presumed to cause the symptoms or the symptoms have lasted more than 6 months, to meet the CFS criteria.

The "substantial overlap" is due to the fact that symptom questionnaires themselves are quite vague and non-specific and none have been tested for these specific patient groups in terms of understandability, relevance, acceptability by patients - instead they are just designed by people who have not experience the illness, given to a few groups of patients and basic statistics performed. It is a fundamental mistake to assume that because a set of items has a high internal consistency (when tested with a potentially non-homogenous patient group) that it is of high quality - that inconsistency may be due to a common set of behavioural biases and may actually have lower specificity than another set of items that has a lower internal consistency. Likewise, when principal component analyses are performed, it is of utmost importance that those principal components are actually meaningful factors to patients, otherwise the results of such analyses just reflect the biases of the researchers which went into the selection of items in the first place.

It is true that there is a lack of longitudinal studies for both CFS and CF states, especially "comprehensive, longitudinal assessments extending beyond self-reported symptoms" but the assumption that there is a "conversion" to CFS is just bizarre.

 

I think this "conversion" is from the BPS view that there is an original viral infection but then deconditioning sets in. When we then develop a fear of exercising because of being wimps and thinking "it will hurt" we get in a vicious downward cycle to CFS.

Workwell tested patients with MS and they weren't worse on the next day. People with other diseases may feel bad after exercise, a healthy person can feel bad after unaccustomed exercise, but what we have is different. Any statement otherwise just shows they haven't read the literature properly.

 

Conversion disorder. They avoid saying it but that's largely the mechanism. Hence conversion therapy to convert unhelpful illness beliefs.

Usually proponents of this nonsense avoid saying the quiet part loud but this one slipped by.

 

I've submitted the following comment to the publication by Flatt et al., but unfortunately it has not been accepted. I'm posting it here since I have done some study on reported differences between ME/CFS and chronic fatigue. I hope that the references will be useful.

 

ME/CFS is leaving the fatigue spectrum

Abstract: Contrary to the conclusion by Flatt et al. [1] research has indicated several differences between patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and patients suffering from idiopathic chronic fatigue (ICF). ME/CFS patients have a lower employment rate, more functional impairments, and a worse prognosis than patients with ICF. ME/CFS patients are more likely to attribute their illness to a physical cause and more frequently report post-exertional malaise than ICF-patients. In recent diagnostic criteria, post-exertional malaise has substituted fatigue as the hallmark symptom of ME/CFS. Consequently, ME/CFS should no longer be seen as an extremity on the fatigue continuum.

Keywords: myalgic encephalomyelitis/chronic fatigue syndrome, idiopathic chronic fatigue, post-exertional malaise, fatigue continuum, differentiation.

Commentary

I would like to contest the conclusion by Flatt et al. [1] that few differences exist between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and idiopathic chronic fatigue (ICF). The prevalence of idiopathic chronic fatigue is estimated to be several orders of magnitude larger than that of ME/CFS. [2] Consequently, only a small minority of patients with idiopathic chronic fatigue can be said to suffer from ME/CFS. [3] Patients with ME/CFS are generally more impaired than ICF patients. They have lower physical function [4,5] more bodily pain [4,6], more neurocognitive difficulties, [6,7] lower employment rates [8] and a worse prognosis [9] than ICF patients. Patients with ME/CFS are also more likely to attribute their illness to a physical cause [10,11] and more frequently report an acute infectious onset compared to patients with ICF. [5]

The lack of further differences between idiopathic chronic fatigue and ME/CFS could be seen as a critique of standard case-definitions of ME/CFS. [12, 13] These focus on fatigue and do not require the presence of other characteristic symptoms such as post-exertional malaise. Several studies have found post-exertional malaise to be a prime factor in discriminating ME/CFS from ICF. [14-16] Worsening of fatigue with physical exertion, and feeling worse for 24 hours or more after exercise are predictive of a poor prognosis. [17] In recent diagnostic criteria, post-exertional malaise has substituted fatigue as the hallmark symptom of ME/CFS. [18,19] Consequently, ME/CFS should no longer be seen as an extremity on the fatigue continuum.

Flatt et al. [1] rightly highlight the debilitating nature of chronic fatigue, which has been overlooked by the clinical and scientific community. The confusion between ME/CFS and idiopathic chronic fatigue might have played a decisive role in this neglect. Most research on chronic fatigue has focused on ME/CFS, which might have provided a too narrow scope to this problem [20]. Conversely, the emphasis on fatigue in the study of ME/CFS has thus far been unproductive. [21] Greater differentiation between these two conditions could further research in both of them.


References

[1] Fatt SJ, Cvejic E, Lloyd AR, Vollmer-Conna U, Beilharz JE. The Invisible Burden of Chronic Fatigue in the Community: a Narrative Review. Curr Rheumatol Rep. 2019 Feb 11;21(2):5.

[2] Steele L, Dobbins JG, Fukuda K, Reyes M, Randall B, Koppelman M, et al. The epidemiology of chronic fatigue in San Francisco. Am J Med. 1998 Sep 28;105(3A):83S-90S.

[3] Buchwald D, Umali P, Umali J, Kith P, Pearlman T, Komaroff AL. Chronic fatigue and the chronic fatigue syndrome: prevalence in a Pacific Northwest health care system. Ann Intern Med. 1995 Jul 15;123(2):81-8.

[4] Buchwald D, Pearlman T, Umali J, Schmaling K, Katon W. Functional status in patients with chronic fatigue syndrome, other fatiguing illnesses, and healthy individuals. Am J Med. 1996 Oct;101(4):364-70.

[5] Evengård B, Jonzon E, Sandberg A, Theorell T, Lindh G. Differences between patients with chronic fatigue syndrome and with chronic fatigue at an infectious disease clinic in Stockholm, Sweden. Psychiatry Clin Neurosci. 2003 Aug;57(4):361-8.

[6] Hickie I, Davenport T, Vernon SD, Nisenbaum R, Reeves WC, Hadzi-Pavlovic D. Are chronic fatigue and chronic fatigue syndrome valid clinical entities across countries and health-care settings? Aust N Z J Psychiatry. 2009 Jan;43(1):25-35.

[7] Jason LA, Porter N, Hunnell J, Brown A, Rademaker A, Richman JA. A natural history study of chronic fatigue syndrome. Rehabil Psychol. 2011 Feb;56(1):32-42.

[8] L Darbishire, L Ridsdale, and P T Seed Distinguishing patients with chronic fatigue from those with chronic fatigue syndrome: a diagnostic study in UK primary care. Br J Gen Pract. 2003 Jun; 53(491): 441–445.

[9] Bombardier CH, Buchwald D. Outcome and prognosis of patients with chronic fatigue vs chronic fatigue syndrome. Arch Intern Med. 1995 Oct 23;155(19):2105-10.

[10] Lane TJ, Manu P, Matthews DA. Depression and somatization in the chronic fatigue syndrome. Am J Med. 1991 Oct;91(4):335-44.

[11] De Gucht V, Garcia FK, den Engelsman M, Maes S. Differences in Physical and Psychosocial Characteristics Between CFS and Fatigued Non-CFS Patients, a Case-Control Study. Int J Behav Med. 2016 Oct;23(5):589-94.

[12] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med. 1994 Dec 15;121(12):953-9.

[13] Sharpe MC, Archard LC, Banatvala JE, Borysiewicz LK, Clare AW, David A, et al. A report--chronic fatigue syndrome: guidelines for research. J R Soc Med. 1991 Feb;84(2):118-21.

[14] Jason AJ, Taylor RR. Applying Cluster Analysis to Define a Typology of Chronic Fatigue Syndrome in a Medically-Evaluated, Random Community Sample. Psychol Health. 2002;17(3):323-337.

[15] Maes M, Twisk FN, Johnson C. Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Chronic Fatigue (CF) are distinguished accurately: results of supervised learning techniques applied on clinical and inflammatory data. Psychiatry Res. 2012 Dec 30;200(2-3):754-60.

[16] Wessely S, Chalder T, Hirsch S, Wallace P, Wright D. Psychological symptoms, somatic symptoms, and psychiatric disorder in chronic fatigue and chronic fatigue syndrome: a prospective study in the primary care setting. Am J Psychiatry. 1996 Aug;153(8):1050-9.

[17] Taylor RR, Jason LA, Curie CJ. Prognosis of chronic fatigue in a community-based sample. Psychosom Med. 2002 Mar-Apr;64(2):319-27.

[18] Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. Beyond myalgic encephalomyelitis/ chronic fatigue syndrome: Redefining an Illness. The National Academies Press. 2015.

[19] Carruthers BM, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, Lerner AM, et al. Myalgic encephalomyelitis/ chronic fatigue syndrome: clinical working case definition, diagnostic and treatment protocols. J Chronic Fatigue Syndr 2003;11:7–115.

[20] Newton JL, Mabillard H, Scott A, Hoad A, Spickett G. The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same. J R Coll Physicians Edinb. 2010 Dec;40(4):304-7.7

[21] Twisk FN, Arnoldus RJ. Comment and reply on: ME is a distinct diagnostic entity, not part of a chronic fatigue spectrum. Expert Opin Med Diagn. 2013 Jul;7(4):413-5.

 

Lloyd et al have posted a response

https://link.springer.com/epdf/10.1007/s11926-019-0824-y

 

"Does it matter if we use proper terms in scientific research, especially ones fraught with controversy for decades?" is one hell of an odd argument to make. We're not in the abstract here, talking about whether Pluto is a planet or not. This has real-life harmful consequences that have been documented for decades by now. And they actually manage to describe the terms incorrectly while arguing about being topic experts who should not be questioned.

Imagine a bird expert arguing that bats are basically a type of bird and being puzzled at why people are telling them to unglue their heads out of their ass, or maybe let people who know what they are doing take over. Who the hell gave these idiots a medical degree, let alone a medical license? Completely clueless.

 

https://twitter.com/user/status/1126486757476831232

 

I’ve summarised the review here
https://meaustralia.net/2019/05/16/...or-more-biopsychosocial-research-into-me-cfs/

*edited with correct link

Bit behind the times as John Whiting was going to do it but he must be too busy. Hope he’s ok.

Looking through this thread, think I’ll amend to include the responses!

 

Thanks for the right link @Sly Saint