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salutemed.it Forum Index » » CFS Stanchezza cronica » » from the Netherlands, how is live in italy with cfs
Autore from the Netherlands, how is live in italy with cfs
trees


Registrato: Apr 06, 2003
Messaggi: 37
Località: Netherlands
Inviato: 2003-04-06 13:14   

Dear visitors,

With a lot of trouble I finally did succeed in registering with your mail list/Forum; because it is not in English.

I would like to know how is live/medical approach in Italy with cfs/cfids. In the Netherlands we have to defend ourselves for the politic who try to make it a decease which can be reversed by CBT (which is not true, and makes it worse for most patients)

Can you send me a mail

Greetings

ferdi
Netherlands
email: ferdi@rots.tmfweb.nl



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kikka


Registrato: Oct 17, 2002
Messaggi: 389
Località: roma
Inviato: 2003-04-07 11:04   
my dear ferdi

it is not easy to answer you,for a problem of language, but i try.
firstable,you are welcome!
tell us everything you want,and tell about you and your life ,there in your country,with this strange and horrible disease cfs.
How did you get it? and when?
then ,i have to ask something i did not understand in your message :
What do you mean about : c.b.t ?
what do you mean about the politic of you country in cfs?
are you talking a ''decease'' of cfs.,or i did understand wrong?
please explain me better.

then ,about the medical approach,here in italy ,the cares,the solutions, are only experimental...and not secure in their result.So we are still waiting for a real medical care.
i think you should write to this doctor:

Name: Umberto Tirelli

e-mail: utirelli@cro.it

tel. 0434 659284

He is very famous,and in connection with many doctors in the world that study c.f.s., i think you can send him an e-mail,in english obviously,he will answer surely,he always answered to my mails.

tell me about what i asked for, in this message i sent you,ok ?

bye

kikka



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trees


Registrato: Apr 06, 2003
Messaggi: 37
Località: Netherlands
Inviato: 2003-04-26 12:40   
Dear Kikka,

Thanks a lot for your reply on my message placed on the forum.

Well Kikka, by my message on the board I did try to express some of my eager/ frustrations concerning the public relations about cfs in the Netherlands.

In the (popular) media they try to advocate, that cfs is a decease that is caused and can be cured by wrong beliefs by the patient himself.
In the newspapers frequently there is information published written by (pseudo) medical authorities who claim that they can cure cfs patients by force them to enhance physical activity. In other words, they claim that because the patient think they are ill, they are less active and that attitude /cognition is responsible (the cause) for not becoming better; with a medical professional word they cal this “somatization”. The therapy to try to change these wrong cognition’s/beliefs, is called “Cognitive behaviour therapy”.

Kikka, you can imagine that we as patients do become angry and upset when we are confronted with this medical professionals.
Our decease can not be explained by wrong beliefs, there is too much scientific evidence it is not.

In the Netherlands the politicians do want to believe these claims by (a part of) the medical authorities, because it is cheap (despite the scientific evidence it is not!). They try to use it as an instrument to keep you as a serious debilitating cfs patient away from social securities and health care.
In the Netherlands there are even insure companies who finance these medical authorities who try to advocate these lies about us.

So Kikka, I think for this reason we as serious cfs patients have all reason to become angry about this kind of lies (for economic reasons), what do you think ?

Kikka, our decease is not caused by wrong attitudes/ believes, it is a “biochemical” decease/ illness and not a psychological one, do you agree ?

Kikka, I would like to hear more about you in your country with your illness.

Greetings from the Netherlands

Ferdi Rots
Email: ferdi@rots.tmfweb.nl


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trees


Registrato: Apr 06, 2003
Messaggi: 37
Località: Netherlands
Inviato: 2004-02-15 14:33   
I refer to the postings about B12 on this forum.

There is some scientific evidence that b12 is a N.O.S scanvenger; but it is not a bullet.

Prof. M Pall did publish a paper about this B12, it is also published in a paper. You can find all his published papers on the website of the Washington State University;

http://molecular.biosciences.wsu.edu/Faculty/pall.html

So, there is important scientific work in this field.

Greetings

Trees
Netherlands


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ciccullo


Registrato: Sep 28, 2003
Messaggi: 61
Località: Toronto-Canada
Inviato: 2004-02-21 05:42   
Thanks for the info., Trees
Incidentally, I thought of you today and wondered how you were...You see, I had not had a chance to visit this site for a few days and voila', here was your message!! I'm glad to see you're OK...as OK as anyone with CFS, etc..., can be. Take care!

Toni
from Toronto, the gray city...YAK


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