Let the patient revolution with ME and CFS.
8 October 2013
Surmount the impasse around ME and CFS by using a diagnosis based
upon objective assessment of symptoms and biomarkers in research.
This contribution responses to the challenge posed by Richards and colleagues
1, in which they advocate a key role in fixing the shortcomings in healthcare.
There is a lot of controversy surrounding the etiology of and therapies for
Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) 2.
It is time to move forward and to leave the controversy behind us.
For that reason some reasonable requests are put forward by patients for years:
- clinical diagnosis should be based upon an objective assessment of
characteristic symptoms, e.g. the workload and oxygen uptake at ventilatory
threshold and at exhaustion at a second cardiopulmonary exercise test 24 hours
after a first exercise test 3 to objectify post-exertional "malaise";
- a distinction between patients with post-exertional "malaise" (and other
symptoms), to be assessed objectively, and patients with chronic fatigue without
post-exertional malaise is essential for research and clinical practice, e.g. to
end the debate with respect to the claim that cognitive behavorial therapy (CBT)
and graded exercise therapy (GET) is an effective and safe therapy for ME, CFS
and chronic fatigue patients 4;
- an objective assessment of symptoms, e.g. cognitive impairment 5 and
orthostatic intolerance/postural orthostatic tachycardia syndrome, should be
utilized to define clinical ME and CFS patient subgroups in research;
- biomarkers, e.g. gene expression and cytokine levels after exercise 6, T cell
and NK cell dysfunction 7, a decline in workload and oxygen uptake at the
anaerobic threshold at a second exercise test 24 hours later 3, should be used
to define biological subgroups of ME and CFS in research.
- ME and CFS patients should be monitored before, during and after therapies
using objective measures for the clinical status of patients.
The often used diagnostic criteria for chronic fatigue (syndrome) 9 select an
heterogeneous population, have hampered scientific and clinical progress in the
last decades and frustrated many patients, clinicians and researchers.
As Fiona Godlee notes in her editorial 8, to make a clear distinction between
patients with post-exertional malaise ("ME"): a delayed, long-lasting increase
of cognitive deficits, overwhelming, permanent, and intense "fatigue", pain etc.
after a minor exertion, and patients with chronic fatigue (syndrome) 9 without
post-exertional malaise, is a clear and reasonable request 10.
For that reason the consensus criteria for ME 11 should be validated, adapted
and/or refined, and used in research and clinical practice to serve both ME and
In order to finally make progress and to resolve the ME and CFS debate at last,
it is crucial to listen to sensible requests of patients.
1. Richards T, Montori VM, Godlee F, Lapsley P, Paul D. Let the patient revolution begin. BMJ 2013;346:f2614. doi: 10.1136/bmj.f2614.
2. Holgate ST, Komaroff AL, Mangan D, Wessely S. Chronic fatigue syndrome: understanding a complex illness. Nat Rev Neurosci 2011;12:539-544. doi: 10.1038/nrn3087.
3. Snell CR, Stevens SR, Davenport TE, VanNess JM. Discriminative validity of metabolic and workload measurements to identify individuals with chronic fatigue syndrome. Phys Ther 2013. doi: 10.2522/ptj.20110368.
4. White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet 2011;377:823-836. doi: 10.1016/S0140-6736(11)60096-2.
5. Cockshell SJ, Mathias JL. Cognitive functioning in chronic fatigue syndrome: a meta-analysis. Psychol Med 2010;40:1253-1267. doi: 10.1017/S0033291709992054.
6. Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, et al. Gene expression alterations at baseline and following moderate exercise in patients with chronic fatigue syndrome, and fibromyalgia syndrome. J Intern Med 2012;271:64-81. doi: 10.1111/j.1365-2796.2011.02405.x.
7. Curriu M, Carrillo J, Massanella M, Rigau J, Alegre J, Puig J, et al. Screening NK-, B- and T-cell phenotype and function in patients suffering from chronic fatigue syndrome. J Transl Med 2013;11:68. doi: 10.1186/1479-5876-11-68.
8. Godlee F. Ending the stalemate over CFS/ME. BMJ 2011;342:d3956. doi: 10.1136/bmj.d3956.
9. Fukuda K, Straus SE, Hickie I, Sharpe M, Dobbins JG, Komaroff AL. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med 1994;121:953-959. doi: 10.7326/0003-4819-121-12-199412150-00009.
10. Twisk FNM, Arnoldus RJW. Comment and reply on: ME is a distinct diagnostic entity, not part of a chronic fatigue spectrum. Expert Opin Med Diagn 2013;7:413-415. doi: 10.1517/17530059.2013.795147.
11. Carruthers BM, van de Sande MI, de Meirleir KL, Klimas NG, Broderick G, Mitchell T, et al. Myalgic encephalomyelitis: international consensus criteria. J Intern Med 2011;270:327-338. doi: 10.1111/j.1365-2796.2011.02428.x.
12. Cockshell SJ, Mathias JL. Cognitive functioning in chronic fatigue syndrome: a meta-analysis. Psychol Med 2010;40:1253-1267. doi: 10.1017/S0033291709992054.
Competing interests: None declared
ME-de-patiënten Foundation, Zonnedauw 15, 1906 HB The Netherlands
Click to like: