Hello people whe need help in the Netherlands

Discussion in 'Fibromyalgia Main Forum' started by Lijda, Jul 12, 2008.

  1. Lijda

    Lijda New Member


    I'am Lijda= suffer from Holland/Netherlands. Whe have a big problem white CBT. It make me worse than ever.
    It's the same problem than in the UK.
    Now I'am use carnitene it works for the brainfrog.
    I feel a little better. Lighing down to sit.
    Do you people want log in and tell that cbt the most terible therapy is for CFS/ME patients.

    You can use a translate. The babbelfish

    De title is "Wereldwijd bewezen dat cgt=cbt niet werkt".
    thats mean = "worldwide proved that cbt not works"
    Look under forum and than "ervaringsverhalen".

    the forum is ...ME/CVS.net

    Thanks al lot.
    Lijda from the netherlands.
    [This Message was Edited on 07/12/2008]
  2. pluis

    pluis New Member

    Hi Lijda,

    You and I speak the same language but I live in the USA.

    Can you be more specific regarding the website? I am not able to locate it..

    I know about the problems in the Netherlands, and that is one of the reasons why I moved. We have to make sure this is not blowing over to the USA!!
    I have no idea how to avoid this from happening. Does anyone have some suggestions? In the UK there are similair problems...

    Best, Mariska

  3. PainPainGoAway

    PainPainGoAway New Member

    Ik ben blij u te ontmoeten.
    I am so sorry to know that you have trouble with treatment in the lovely country the Netherlands.
    I went to high school two years in Brunssum. I love your country, so beautiful and fun.
    I take carnitine as well. It really does help. I have to take it on an empty stomach in the morning.
  4. Lijda

    Lijda New Member

    Hello Mariska

    My English is not very good, my brain is not working all the time, evry ME/CFS have the same problem.
    In Holland is 1 protocol and thats cbt=cgt.
    The don't believe the illness.

    That forum is for patients not for docters.
    You must log in, it's not my forum. WWW.ME/CVS.NET
    Last week the say that cbt good for the brain is in a article. They just had a proof white 22 people. Whe don't now how ill this people are. They now that whe have a defect on the brain.
    You can find the article on pubmed.

    Hoply you understand my english.
    it's better now thanks carnitene, 4 months ago was reading a newspaper not possible. My brain works for 6 years not. Now I learning new to read,and I learn english again now.
    The illniss is tireble, we need some medication.

    ME/CVS-CFS is not een illniss in Holland.
    Docters don't believe it. Terrible again.

    Groetjes Lijda
  5. Lijda

    Lijda New Member

    I like you name painpaingoaway.
    My new name is moemoegaweg= tiredtiredgoway LOL

    I take 5 small bottles on day. 1 gram in 1 bottle.
    I startet white 2.
    Something is going wrong now. Started after 3 months that I feel strange.
    Monday I will call white the docter, the only one in Holland they now what CFS/ME is. Yust 1 docter.
    That was my last hope. 6 years ago I need that carnitene.
    They give me CBT and thats make me worse. I lying don for 4 years.

    My illniss started 6 years ago white a infection. The don't believe it in Holland. Thats the problem.
    I will try more to feel better. There is nothing for the infect group. Not much.
    I'am waiting for valcyte etc. Whe don't have it overhere.
    It's not sure off it's work???

    groetjes Lijda
    [This Message was Edited on 07/12/2008]
    [This Message was Edited on 07/12/2008]
  6. Lijda

    Lijda New Member

    Hi French

    What's the name of this doctor?
    Thanks for you answer.

    groetjes Lijda
    [This Message was Edited on 07/13/2008]
  7. jasminetee

    jasminetee Member

    Welcome! :)

    I often think of people with CFS in the Netherlands when I hear stories like yours. It makes me very upset. Do you have a CFS organization there that can help you? We need to fight this lie that CBT works. It doesn't and those of us with the illness know that. I can't get the address you gave us to work either.

    [This Message was Edited on 07/13/2008]
  8. Lijda

    Lijda New Member

    Hello Teejkay

    The problem is the organisation is not to trust.
    Whe have tree organisation the work together, but not any more. The had problems white each other. Whe don't now why. Maby because cbt. The big organisation maby work white the cbt school. I don't now.
    The school is like wessly at the UK.
    The other two organisation are to small to to break through.
    One organisation is good, it's for the people they don't work. It's a hard live in Holland white ME/CFS.

    That adress I give is a adress ( forum) for patient's, to share our misunderstand off this illness. http://www.mecvs.net/
    The problem is the government. The stronger than the patients.
    Only one protocol over here and that's CBT.

    I live white a illness what does not exist.

    groetjes Lijda
    [This Message was Edited on 07/13/2008]
    [This Message was Edited on 07/13/2008]
  9. jasminetee

    jasminetee Member

    I understand what you're saying. It really is unfortunate. Your new link worked but I can't find "ervaringsverhalen". Do we have to be Registered to Post there?

  10. gapsych

    gapsych New Member

    Welcome to the board. You will find lots of good information here as well as support.

    I often say that if I could talk myself out of this, I would have been well a long time ago!!

    I did go to short term therapy, not CBT, with a therapist who works with people with chronic illnesses. It was very goal oriented, tips to cope with a chronic illness as well as to vent. It was very helpful.

    It did not make me well but helped me come to terms with FM/CFS/ME.

    I have been in your country and it is very beautiful.

    Take care.

  11. Lijda

    Lijda New Member


    This is the topic, You must be registred, I startet the topic. Because I had problems white cbt and it's was my problem because the believe in CBT.
    The say that 70% get better about cbt.
    Make me worse than ever.
    I walk in and never came better after cbt.

    Maby you can post??
    This is America and don't believe cbt=cgt.
    something like that.

    Now is my brain a little worse, I will be back.

    groetjes Lijda
  12. Lijda

    Lijda New Member

    When you registred you can make a new topic.
    Something like that.

    Thanks a lot.

    Hello gabsye.

    Bye LOL

    Groetjes Lijda

    This is the registredsite.
    When it is a lot off work, than is it ok.
    Than forget it.

    Bye Bye

    [This Message was Edited on 07/13/2008]
  13. Lijda

    Lijda New Member


    Lijda[This Message was Edited on 10/30/2008]
  14. jasminetee

    jasminetee Member

    I'm glad you're fighting against CBT as the cure for CFS. They're so wrong about it being in our heads and they're wrong for trying to get out of paying disability for us.

  15. Lijda

    Lijda New Member

    It is terrible in Holland.
    Virusinfectie do not exist over here.
    All in our heads.

    Groetjes Lijda

    [This Message was Edited on 10/30/2008]
  16. PainPainGoAway

    PainPainGoAway New Member

    Do you also have fibromyalgia or pain?
    Do you take any other medication or vitamins?
    Look on this website...there are some vitamins you may be able to take.
    NADH helps some with the brain fog and fatigue.
  17. Lijda

    Lijda New Member


    No I have no pain anymore. When I be quiet.
    I had after cbt. To heavy.
    I have more symptoms tiredtired after infection cytomeglia and toxoplamose 6.5 years ago. There disappeared ?? Thats Holland and docters. No infection. Evry time to the docter he won't help me. In Holland de patients the debt.
    All in your head.
    Thats holland and thiss illness.
    The same list is now started white pfeiffer 6.5 years ago.
    Now I have reuma atrl in my blood. Tested for a 0.5 year. Very strange all this. These test was for the only CFS docter in Holland. De travel is to far. I went one time and now contact for the telefhone.
    No more ME/CFS docters over here. And the have only carnitene.

    I use only carnitene = body-own substance thanks to cfs dokter and it helps al lot. Thinking was not possible anymore. So sick. Carnitene work for that. It's
    Not much not enough. I need this 6.5 years ago.
    I want try q10 this week.

    And I want try the anti-viraal medication.
    Maby the started now in Holland??? Not sure.
    I will contact America for this medication.

    Thanks for the tips.
    I hate thiss illness.

    Groetjes Lijda

    Thanks for the tips.