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Let the

patient revolution

with ME ... and CFS

(ingezonden reactie, BMJ).







Naar aanleiding van het artikel [Let the patient revolution begin] in BMJ van Richards en collega's,

waarin zij stellen dat het essentieel is om goed te luisteren naar patiŽnten

om medische misstanden te voorkomen en de kwaliteit van de gezondheidszorg te verbeteren,

stuurde ik onderstaande brief ter publicatie naar de redactie van BMJ.


De inhoud van de brief, die voor publicatie werd afgewezen, wil ik graag met U delen.

Kennelijk is de stellingname m.b.t. het belang van de rol van patiŽnten alleen voor de bŁhne.


Lees en oordeelt U zelf.





Let the patient revolution ... with ME ... and CFS.


Surmount the impasse around ME and CFS by using a diagnosis

based upon objective assessment of symptoms and biomarkers in research.


8 October 2013


In response to:


Richards T, Montori VM, Godlee F, Lapsley P, Paul D.

Let the patient revolution begin.

BMJ 2013;346:f2614.


Godlee F.

Ending the stalemate over CFS/ME.

BMJ 2011;342:d3956.




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 CFS patients.


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.
  2. Let the patient revolution begin.

    BMJ 2013;346:f2614.

    doi: 10.1136/bmj.f2614.


  3. Holgate ST, Komaroff AL, Mangan D, Wessely S.
  4. Chronic fatigue syndrome: understanding a complex illness.

    Nat Rev Neurosci 2011;12:539-544.

    doi: 10.1038/nrn3087.


  5. Snell CR, Stevens SR, Davenport TE, VanNess JM.
  6. Discriminative validity of metabolic and workload measurements to identify individuals with chronic fatigue syndrome.

    Phys Ther 2013.

    doi: 10.2522/ptj.20110368.


  7. White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, et al.
  8. 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.


  9. Cockshell SJ, Mathias JL.
  10. Cognitive functioning in chronic fatigue syndrome: a meta-analysis.

    Psychol Med 2010;40:1253-1267.

    doi: 10.1017/S0033291709992054.


  11. Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, et al.
  12. 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.


  13. Curriu M, Carrillo J, Massanella M, Rigau J, Alegre J, Puig J, et al.
  14. 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.


  15. Godlee F.
  16. Ending the stalemate over CFS/ME. BMJ 2011;342:d3956.

    doi: 10.1136/bmj.d3956.


  17. Fukuda K, Straus SE, Hickie I, Sharpe M, Dobbins JG, Komaroff AL.
  18. 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.


  19. Twisk FNM, Arnoldus RJW.
  20. 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.


  21. Carruthers BM, van de Sande MI, de Meirleir KL, Klimas NG, Broderick G, Mitchell T, et al.
  22. Myalgic encephalomyelitis: international consensus criteria.

    J Intern Med 2011;270:327-338.

    doi: 10.1111/j.1365-2796.2011.02428.x.


Frank N.M. Twisk,

ME-de-patiŽnten Foundation,

Zonnedauw 15,

1906 HB  The Netherlands


Competing interests

None declared