It has to be ME - not CFS !!!
Greg Crowhurst 16th September 2012
The separation of ME from CFS, so ending the decades of injustice and suffering caused by that label to people with ME and their families, is , in my opinion, the greatest issue facing people with ME right now :
- ME and CFS are not equivalent terms. ME is a neurological disease, CFS is a made-up term that encompasses a wide range of conditions.
- CFS includes Chronic Fatigue, a mental illness, as well as ME, a neurological disease; it is therefore unsafe, unreliable and unrealistic .
- ME does not exist on a continuum with Chronic Fatigue or CFS any more than Cancer , or Multiple Sclerosis does.
- ME is not a fatigue illness , in the way it is contextualised in CFS; you don't even have to have fatigue to have ME.
- A service cannot treat WHO-ICD-10-G93.3 ME/PVFS patients while also using the CDC/Fukuda CFS definition, without doing a gross disservice to taxonomic logic .
- The International Consensus Criteria (ICC) is very clear that 'fatigue syndrome' or 'chronic fatigue syndrome' are not to be conflated with ME/PVFS WHO-ICD-10-G93.3.
- The WHO have repeatedly clarified that diseases cannot be encoded under more than one rubric: for example on 4th February 2009, Dr Robert Jakob, Medical Officer (ICD), Classifications, Terminologies and Standards, WHO Headquarters, confirmed:
“CFS is a broad umbrella. This needs to be clarified. It is not possible to make a deduction from CFS. Volume I is the relevant volume for ME. ME is classified at G93.3 and is a specific disorder. The term CFS covers many different conditions, which may or may not include ME. The use of the term CFS in the ICD Index is merely colloquial and does not necessarily refer to ME. It could be referring to any syndrome of chronic fatigue, not to ME at all. ”
- The hallmark symptom of ME- the likely Post Exertional impact of any activity is ignored by CFS; the hypersensitivity, the neurological , the endocrine, the cardiac and autonomic dysfunctions are also ignored.
- The techniques used in the therapeutic treatment of Chronic Fatigue are not just inappropriate but potentially damaging, dangerous -even life-threatening to someone with ME.
- The criteria for ME are very specific,whereas the CDC/Fukuda criteria for CFS are vague, undefined, unreliable and far too broad to be of any practical value.
- People with ME are seriously deprived of proper medical tests, treatments and research because of the imposition of the CFS label upon their disease.
- The CFS label causes countless daily cases of psychosocial abuse and needless suffering to ME patients.