On 2014 Jan 21, Ellen M Goudsmit commented:

This paper describes some of the political issues that have undermined the study of CFS and its subsets during the past ten years. I too have felt the pressure to promote one intervention rather than another, or to support the use of criteria which were clearly flawed. However, the non-scientific influences that have distorted the view of fatigue syndromes are various and often rather surprising. For example, a number of highly regarded journals have for years refused to publish any article which challenges the CBT model of CFS [1]. The last time that the BMJ published a report alluding to a pathological cause was in 1995 (Lane, cited in 1). Alternative views are relegated to the correspondence page. And the one journal that deals with fatigue has just rejected a paper describing criteria which in the past, have shown to select a homogeneous group. The latest issue (2014, 2, 1,) includes two studies that recommend the formulation of new criteria focusing on core symptoms but when these were offered, the editor decided the subject was contentious. We can identify problems but not try and resolve them. Ergo, we are using different terms for different symptom complexes. ME/CFS could refer to CFS or to ME or a hybrid. Is it any surprise that patients and doctors are confused?

Perhaps it is useful to recall that fatigue is a symptom and not an illness. However, the Oxford criteria for CFS used in the PACE trial require only the presence of fatigue to some degree, at sometime, during six months. A number of referees seem to miss that point. Fatigue is a symptom of many illnesses, and of chronic stress. Five minutes on PubMed would lead one to the conclusion that CBT might well help tiredness but there's no evidence to support its value to deal with dizziness and muscle weakness. If trials only measure fatigue and sleep, and define recovery in terms of a lower score on one or two measures and report that a person feels better, it's easy to argue that it's effective. It's not effective for the majority. It helps with tiredness but as any clinician will admit, there's more to CFS than fatigue.

There's a lack of balance in scientific publications and some serious spin re CBT and GET, which patients and independent scientists are well aware of. But this journal, like others, doesn't invite commentaries from people who aren't enthusiastic about the CBT protocol as evaluated in RCTs. Readers therefore don't get a range of opinions. It helps no one and undermines the scientific process. Most of all, it's very, very sad.

[1] Goudsmit, E and Stouten, B. Chronic fatigue syndrome: editorial bias in the British Medical Journal. Journal of Chronic Fatigue Syndrome, 2004, 12, 4, 47-59.<br> http://freespace.virgin.net/david.axford/JCFS.pdf

On 2014 Jan 21, Ellen M Goudsmit commented:

This paper describes some of the political issues that have undermined the study of CFS and its subsets during the past ten years. I too have felt the pressure to promote one intervention rather than another, or to support the use of criteria which were clearly flawed. However, the non-scientific influences that have distorted the view of fatigue syndromes are various and often rather surprising. For example, a number of highly regarded journals have for years refused to publish any article which challenges the CBT model of CFS [1]. The last time that the BMJ published a report alluding to a pathological cause was in 1995 (Lane, cited in 1). Alternative views are relegated to the correspondence page. And the one journal that deals with fatigue has just rejected a paper describing criteria which in the past, have shown to select a homogeneous group. The latest issue (2014, 2, 1,) includes two studies that recommend the formulation of new criteria focusing on core symptoms but when these were offered, the editor decided the subject was contentious. We can identify problems but not try and resolve them. Ergo, we are using different terms for different symptom complexes. ME/CFS could refer to CFS or to ME or a hybrid. Is it any surprise that patients and doctors are confused?

Perhaps it is useful to recall that fatigue is a symptom and not an illness. However, the Oxford criteria for CFS used in the PACE trial require only the presence of fatigue to some degree, at sometime, during six months. A number of referees seem to miss that point. Fatigue is a symptom of many illnesses, and of chronic stress. Five minutes on PubMed would lead one to the conclusion that CBT might well help tiredness but there's no evidence to support its value to deal with dizziness and muscle weakness. If trials only measure fatigue and sleep, and define recovery in terms of a lower score on one or two measures and report that a person feels better, it's easy to argue that it's effective. It's not effective for the majority. It helps with tiredness but as any clinician will admit, there's more to CFS than fatigue.

There's a lack of balance in scientific publications and some serious spin re CBT and GET, which patients and independent scientists are well aware of. But this journal, like others, doesn't invite commentaries from people who aren't enthusiastic about the CBT protocol as evaluated in RCTs. Readers therefore don't get a range of opinions. It helps no one and undermines the scientific process. Most of all, it's very, very sad.

[1] Goudsmit, E and Stouten, B. Chronic fatigue syndrome: editorial bias in the British Medical Journal. Journal of Chronic Fatigue Syndrome, 2004, 12, 4, 47-59.<br> http://freespace.virgin.net/david.axford/JCFS.pdf