Open Letter: Dutch decide not to recognise M.E.
-----Original Message-----
From: colin neathercoat [mailto:c.neathercoat@iinet.net.au]
Sent: Tuesday, 8 February 2005 6:45 PM
To: 'can-cdp@minbuza.nl'
Subject: Minister Hoogervorst's Report to the Netherlands Parliament: No
Dutch official recognition of Benign Myalgic Encephalomyelitis (M.E.)
Ambassador Dr HHM (Hans) Sondaal
120 Empire Circuit
Yarralumla ACT
Australia 2600
e-mail: can-cdp@minbuza.nl
Please accept my apologies for writing to you in English. However, I
have recently become aware of a worrying development in the Netherlands
Parliament and feel compelled to write.
I understand that your Minister for Health, Minister Hoogervorst, has
recently recommended that the Netherlands parliament should deny
official recognition of the debilitating and chronic illness M.E., also
sometimes referred to as Chronic Fatigue Syndrome (CFS). This is despite
the World Health Organisation's ICD classification of "Benign Myalgic
Encephalomyelitis" as a specific condition under the code G93.3. The
consequences for Dutch ME sufferers are so alarming that I wonder if you
could enquire for me whether the Netherlands Health Ministry is formally
rejecting the WHO classification, and if so why and on what grounds?
May I also enquire whether the Netherlands Health Ministry is aware that
M.E. is officially recognized in many countries around the world on the
basis of credible physiological, clinical and scientific research
evidence, despite there not yet being determined a known etiology for
this disease? Is the Ministry aware of the terrific work commissioned by
Health Canada and published in 2003 under the title; ME/CFS: Clinical
Working Case Definition, Diagnostic and Treatment Protocols.? I wonder
also whether the Ministry is aware of similar, though less complete,
ME/CFS working case definitions published in both the UK and Australia,
as well as the original 1988 United States CDC definition and subsequent
1994 Fakuda revision (although the latter has been shown to be overly
broad in definition and focus on the issue of 'fatigue' as a qualifying
symptom). If the Netherlands Health Ministry is aware of the
aforementioned, may I enquire on what grounds does Dutch medical and
Health Ministry opinion determine to dismiss them?
Lastly, though there are a number of facts and opinions stated in the
report that are contrary to expert world medical opinion, most alarming
are the assertions that cognitive behavioral therapy (CBT) and exercise
are effective treatments for ME/CFS. Is the Netherlands Health Ministry
aware that the diagnosis of ME/CFS is now generally accepted to be that
of a heterogenous group of diseases/illnesses and that applying
generalized non-specific treatment approaches for CFS sufferers can be
very harmful to certain patient subgroups? Is the Ministry aware of
recent credible patient care research indicating that CBT and exercise
are detrimental in a large proportion of patients diagnosed with ME/CFS?
Once again, I am left wondering if and why the Netherlands Health
Ministry takes contrary opinions on these issues?
It appears, despite expanding medical knowledge of the physiology of
ME/CFS that the Netherlands Health Ministry may have taken a rather
myopic view of this illness and the care needs of Dutch patients.
Medical history is laced with misunderstandings of physical illness to
the very severe detriment of sufferers(Multiple Sclerosis, Tuberculosis,
Porphyrias, etc). My concern is that such outdated medical dogma as
appeared to be expressed by Minister Hoogervorst will condemn Dutch
ME/CFS patients to greater suffering and hardship. Thus I felt compelled
to make the above enquiries and thank you for your time taken in
bringing them to the attention of the Netherlands Health Ministry and
for their response.
Yours
Sincerely,
Colin Neathercoat
Perth, Western Australia
