De Engelse NICE standaardrichtlijnen voor "behandeling" van ME/CVS
(klik hier)
leverde een storm van kritiek op
(klik hier
voor een aantal ingezonden brieven
aan de redakteur van de British Medical Journal n.a.v. publikatie van die richtlijnen).
De One Click Groep zal een rechtszaak aanspannen tegen die richtlijnen
(klik hier)
Op de One Click Groep-website een brief van de leider van de Liberal Democrats
aan een kiezer die hem een brief schreef over die NICE-richtlijnen voor artsen.
Wat opvalt, patiënten in Engeland vragen hetzelfde als patiënten in andere landen:
- onderzoek naar de onverkwikkelijke gang van zaken rond ME,
- geld voor biomedisch, wetenschappelijk onderzoek,
- toezicht door een onafhankelijke "gezondheidsraad"
- etc.
Kortom, de gewoonste zaak van de wereld, zou je zeggen...
De kernvraag is natuurlijk:
Welke politikus in Nederland heeft de moed om aktie te ondernemen
en iets te doen aan de uitzichtloze situatie waarin patiënten zich bevinden?
Liberal Democrats Leader Criticises CFS/ME NICE Guidelines
In a letter to a constituent who lives in Sheffield UK, Liberal Democrat leader Nick Clegg MP
criticises the CFS/ME NICE guidelines and calls for the setting up of an independent scientific committee
to oversee all ME research
Nick Clegg MP writes:
Thank you for your correspondence regarding some of the problems that are currently causing
concerns for people with ME/CFS including inadequate research and the recent NICE guidelines on the subject.
Unfortunately, a ballot to secure an adjournment debate on these issues,
scheduled for the week commencing November 19, was unsuccessful.
As I’m sure you are aware, one of the main obstacles to the adequate treatment of ME is the lack
of knowledge and consensus about the disease. There are many theories as to the causes of the disease but no conclusive
proof to fully support any of them. This is why
it is vital that more research is done into the causes and progression of this difficult to diagnose condition.
What is not in doubt is the very real physical and
psychological damage caused by this disease. The Liberal Democrats have
long argued that funding and research must be focused on the
‘biomedical’ factors involved and not just simply managing the
‘psychological’ issues.
Whilst I welcome the fact that NICE conducted an investigation into ME/CFS,
I do understand and empathise with the concerns raised about the findings.
The recommendation that patients with ME/CFS be treated using an ‘Activity Management Programme’
made up of Cognitive Behavioural Therapy and Graded Exercise Therapy does not follow the World Health Organisation guidelines
which categorise ME as a neurological condition. In failing to recognise the biomedical problems of ME sufferers,
the NICE guidelines also fail to recognise the needs of ME sufferers.
To help address the unique challenges posed by a complex and poorly defined condition like ME,
the Liberal Democrats believe in the establishment of an independent scientific committee to oversee all aspects of
ME research. We would also like to see the government and the Medical Research Council work with ME sufferers and biomedical
researchers in order to achieve a proper understanding of the condition, challenge unjust perceptions and consider
the issue of research funding.
Whilst we welcome the establishing of local centres to focus on ME, we feel the NHS is still too
centralised and too unresponsive to the needs of patients and families. We believe the special needs of those suffering
conditions like ME can be better addressed by empowering patients and making the NHS more accountable at local level.
Thank you again for taking the time to contact me about this issue.
Yours sincerely
Nick Clegg MP
Liberal Democrats Leader
5 februari 2008
http://www.theoneclickgroup.co.uk/
news.php?start=1820&end=1840&view=yes&id=2145#newspost
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