By Frank Twisk
Background For
a few years now I have maintained my own
website (in Dutch).
I try to translate, summarize and
simplify comment on scientific papers and advocacy.
I use information from PubMed
(studies), websites like IiME etc. to keep Dutch patients
informed
e.g. about the REAL value of the
C3-study (the Klimas studies).
Current
Status/Affiliations
HEALTH COUNCIL:
The report of the Dutch Health
Council, mainly consisting of representatives of the
CBT/GET-school of Nijmegen, is inadequate.
Here are just a few examples:
1 The "experts" claim a 70%
success rate for CBT/GET.
But there was a 60% drop-out
rate (70% of 40% = 28%, not 70%).
I have calculated their
success based on their own study results.
2 CFS can be classified as
neurasthenia/somatoform disorder according to these "experts".
3 ME is not a right name (the
nerve system is NOT involved <=> Sophia)
You can find this report at:
Summary:
Membership/Facilities/Services
We have two organisations in the
Netherlands.
I was a member of the ME Foundation,
until they gave a life-time award to the Nijmegen and sponsored
CBT-projects.
The board was voted away by the
members, but they haven't left. They are still praising the
Dutch Council-report.In 2005 a new Association was
founded. I was asked to be a board member, but I couldn't agree
with their choices.
E.g.
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1 |
The other board members wanted a
ME and CFS Foundation.
In the Netherlands their is a
clear distinction between ME and CFS (Jason: 40% of the CFS
patients are ME-patients).
We cannot defend ourselves
against Nijmegen/CBT-GET, if we don't put emphasis on the
post-exertional malaise-criteria.
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2 |
They think promoting the Canadian
criteria is like choosing your favourite football club. |
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3 |
They stated the
"condition" CFS is a result of the "illness" ME and
other illnesses van cause CFS. |
In my opinion they
don't have enough knowledge to defend our medical and juridical
cause properly.
So on the one hand an
unrepresentative
Foundation, on the other hand a Association
Board which doesn't know what they are talking about.
I decided not to participate in this
board and instead talk to Parliament members on my own (e.g. I have sent the members a
presentation CD called Science and Fiction: A Summary)
I work together with a Belgium
Patient Association (summarizing and simplifying scientific
papers for their magazine).
They focus on science and facts (contact Kathy Hugaerts ("president" of
CVS Contactgroep)).
After my lecture/presentation in
April some Belgium expert doctors asked me to participate in a
BE-NE-LUX Association.
OUR INFORMAL
ASSOCIATION "ME-de-patienten (ME-the-patients)"
One problem is that the people I am working together with are
too ill to be able to participate in the Association:
Jan van Roijen, HELP ME-circle, for example.
So there is a big need for a third association (I get a lot of
telephone calls through my website) but no hands (yet).
One of the initiatives of the third,
yet informal association is getting "OUR" story on the Dutch
Television.
Chances of getting this one through
are rising, but you will probably know a goal is only scored if
the ball passes the line!
Website:
Some examples (at least an
example in your language):
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