the intended beneficiaries of this guideline have to be all those people for whom the doctor asks 'is this ME/CFS'.
Right, but if we keep defining ME/CFS in terms of unexplained chronic fatigue (which has a prevalence that is much larger than that of ME/CFS) then doctors will be asking that questions on occasions when it is not appropriate. I thought the intent of the NICE guideline was to provide doctors with information when and where they should consider ME/CFS. So I think it's important it makes a clear distinction between ME/CFS and idiopathic chronic fatigue (ICF).
we don't actually know whether the prognosis or appropriate management is different for any subgroup of people with chronic fatiguing illness.
I recently wrote a
short letter that summarized the reported differences between ME/CFS and patients with idiopathic chronic fatigue:
... 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.
[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.