Crispin Blunt (Conservative MP for Reigate) asked the Secretary of State for Health what assessment he has made of the World Health Organisation's classification of chronic fatigue syndrome as a neurological disease; and if he will make a statement.
In a written answer provided on 11 February 2013, Minister for Care Services Norman Lamb (Lib Dem) replied:
The World Health Organization International Classification of Diseases (ICD-10) classifies chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) under neurological disorders at Reference 93.3 and uses the terms post-viral fatigue syndrome (PVS) and benign myalgic encephalomyelitis. The Department accepts this classification and recognises CFS/ME as a neurological condition of unknown origin.
As the symptoms of CFS/ME resemble those of other forms of debilitating illness, we acknowledge that it is not easy to diagnose single cases of the condition. Clinicians are responsible, within their area of competence, for diagnosing medical conditions and it is not the Department's policy to advise the medical profession on clinical practice.
Pass him a towel to dry his hands.
The NICE guidelines, Fukuda criteria, nor the Oxford or London criteria’s, do not diagnose a neurological disease and cannot diagnose a neurological disease. Therefore though the minister has claimed the Department accepts the WHO classification and does so for MS and Parkinson’s, which also have an unknown origin, they are not using criteria or studying ME. They are using their own term CFS/ME for their own invention. It is not for clinicians to diagnose a neurological disease, as they cannot do so from the subjective criteria forced upon them by NICE and others. Thus the Government minister, Norman Lamb (Lib Dem), and his colleagues are allowing these public organisations to get away with rejecting the WHO classification of ME.
Fine words; pity it won’t translate into any improved course of action!
On a bit of a side note, having experienced both, I’m tempted to further argue that PVFS is related to, but not the same as ME.
I had that for a year when I was 11, and it was very much a simplified version of what I have now – the only symptom I had was the “fatigue” which in retrospect I’d probably separate and classify into post-exertional muscle weakness and post-exertional minor cognitive dysfunction, alongside the characteristic underhum of what, if I had to guess, I’d say is probably baseline lactic acid burn (it isn’t just me, right? Everyone else does get that constant soundless thrum? The one that feels like you’re feeling the vibrations of deep bass music through your bones?). Those essential symptoms they have in common, but it did not however, have any of the wider spread of outlying ME neuro symptoms, like random muscle pain/twitches or sensory oversensitivities.
Good to have further/up to date clarity on this issue. I printed the Minister’s reply and forwarded it as part of my latest ESA application – just so there was no misunderstanding.
Glad you mentioned the ‘soundless thrum’, vibrating through the body, Helva2260. This was one of the most baffling and disabling symptoms when I first fell ill – although in my case I could also hear it. It felt/sounded as if there was a heavy goods lorry idling right next to the house.
I have never heard/read about this in any neurological articles anywhere. When I consulted a Neurologist early on in the illness, he commented that all his ME/CFS patients were hypersensitive to the tuning fork vibrations & found them uncomfortable, but he didn’t know what it was. Sensory hypersensitivity? (I guess they’re mainly looking for Motor dysfunction).
Does Dr Shepherd know anything more about this peculiar M.E. ‘symptom’? As you say, it was an uncomfortable sensation that vibrated right through the body, not just a sound.