@ "Dr Yes"
This document that "Dr Yes" has flagged up, authored by Lesley Ben, is based on a longer document available from the same website. Both documents have been considered controversial by some UK ME and CFS patients for the opinions expressed within the "Recommendations"
Would readers please note that although I am acknowledged in the "Long version" (29 pages) of the document as having been an advisor to the author for the section on the DSM revision and on the CISSD Project that the views and opinions expressed in the DSM, ICD and CISSD Project sections and in the Recommendations section of these two documents are the views and opinions of the author, Ms Ben, and not mine and that they are not necessarily reflective of the views of all UK ME and CFS patients.
Please also note that in relation to the ICD and DSM revision processes that the document is no longer up to date.
Ms Ben also states that:
"There is concern among many people in the M.E. and ‘CFS’ communities that the revision process may result in ‘CFS’ (and possibly M.E.) being classified as mental disorder in ICD-11."
I should like to make it clear that I do not consider that the WHO is intending to classify either "CFS" or "ME" as mental disorders and that I have not expressed this view in any of the material that I have published since the beginning of this year.
If you read the Recommendations section, you will see that Ms Ben calls for the separation of PVFS and ME, and also for the separation of ME and CFS, or for CFS not to appear in ICD-11, at all
Since most research into ME and CFS is published under the term "CFS" (including that of the WP Institute); since many patients in the UK and US are diagnosed only under the term "CFS" and since many of our UK NHS clinics and GPs only use the term "CFS", the recommendations within these two papers have been considered controversial.
One further point, Jody Basset for whose website these two documents have been produced, and who holds very robust views around the use of the term "CFS" has spoken out most negatively on her own Yahoo! message board against the study published by the Whittemore Peterson Institute as having no relevance whatsoever to patients diagnosed with "ME", a view which I do not support, myself.
Extract from "Short version" of Lesley Ben document:
10. Recommendations for Future
The classification for M.E. should be G93.3 Myalgic Encephalomyelitis under Diseases of the nervous system.
The name currently given first at G93.3 in ICD-10 and ICD-10 CM (USA), ‘Postviral fatigue syndrome,’ should be removed. It is not correct: M.E. is not a syndrome. Fatigue is not a defining symptom of M.E.; it is frequently but not necessarily present, and when present it may be only a minor symptom.
Fatigue following viral infection is not a neurological disease and should be classified elsewhere as appropriate.
The current term ‘Benign’ should be deleted from before ‘Myalgic encephalomyelitis.’ It is not correct.
The term ‘benign’ (meaning ‘not fatal’) was originally introduced in the context of the WHO’s efforts to categorise epidemic diseases, and indicated that a disease did not kill more than a certain percentage of its victims.
However, this usage is not consistent throughout the ICD.
The term misleadingly obscures the fact that M.E. can be fatal.
The term also contributes to the public misunderstanding of M.E. Some people interpret ‘benign’ to mean that M.E. is not a serious illness. This is unfortunate considering the degree of severe disability and suffering which may be experienced by M.E. patients.
There should be no ICD listing for ‘CFS’ as a valid disease term. ‘CFS’ does not exist and should not be given the status of a real disease.
However, many patients are diagnosed with ‘CFS’ and need the protection of an ICD listing.
‘CFS’ could be classified in the ICD within a new category containing invalid disease terms. This would acknowledge that while patients are in practice diagnosed with the term, it is not valid.
The ICD-10 already accepts that patients are in practice diagnosed with ‘imprecise and undesirable term’ for ‘ill-defined conditions,’ in that such terms are given in the index.
A category of invalid disease terms would make explicit what is already implicit in categories such as ‘Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified’: not that the disease is not real, but that the patient requires a better diagnosis.
Failing the proposal above or similar, ‘CFS’ should not be classified in the ICD.
The false disease category of ‘CFS’ does not serve the best interests of patients. All patients would be better off with an accurate classification of a real disease, whether they suffer from M.E. or from another condition. Accurate classification would facilitate not only insurance and welfare claims, but also appropriate treatment.
ICD classification of ‘CFS’ as a valid disease is not the way forward; it harms M.E. patients as well as those suffering from undiagnosed conditions who have been falsely classified with ‘CFS.’
The fault in the online search facility for ICD-10 should be corrected so that the default ‘full search option’ which is supposed to include a search of the index, should indeed find terms in the index.
All rather than only part of the WHO ICD should be published on the WHO website. The WHO should publish the Alphabetical index of the current ICD-10 online. If this is impossible for some reason, the WHO website should call attention to its omission. All of the future ICD-11 should be published online.
If the WHO ICD is truly to serve its worldwide constituency, it must be available online in its entirety.