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New UK Lyme Disease Charity - Caudwell Lyme Disease

Discussion in 'Lyme Disease and Co-Infections' started by justy, Apr 27, 2016.

  1. justy

    justy Donate Advocate Demonstrate

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    Caudwell's Lyme disease charity website is up and running and it looks pretty good!

    https://caudwell-lyme.net/

    Their manifesto is thorough:
    https://caudwell-lyme.net/the-caudwell-lyme-manifesto/

    There is a page with 421 patient experiences on, mine is near the bottom of the page. Its heart rending and depressing reading. Hopefully it will help others, including Drs to understand the suffering undiagnosed/misdiagnosed/untreated Lyme causes sufferers and their families.
     
  2. duncan

    duncan Senior Member

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    What a strong and uplifting development! This is a very positive move forward for the world-wide Lyme community.

    Bravo, too, to each of the 421 patients who shared their experiences. Each should be front page news.
     
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  3. msf

    msf Senior Member

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    I feel no.3 is going to be the contentious one here...
     
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  4. duncan

    duncan Senior Member

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    #4 isn't going to be a walk in the park either....
     
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  5. justy

    justy Donate Advocate Demonstrate

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    Agreed - but how great is it that they have left nothing out (it seems) from their stated objectives.

    The CEO of the charity - Veronica Mai Hughes is also a patient so I think that is good news (for her and for us).
     
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  6. TiredSam

    TiredSam The wise nematode hibernates

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    Now all we need is a billionnaire with ME.

    EDIT: Just to be clear, I am not wishing ME on anyone. I am wishing a billion pounds on the next ME sufferer.
     
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  7. duncan

    duncan Senior Member

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    I think I remember reading somewhere that Caudwell's son was first diagnosed with ME before finally getting the Lyme diagnosis.
     
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  8. msf

    msf Senior Member

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    No! Surely not? No!
     
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  9. duncan

    duncan Senior Member

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    Rod Serling couldn't write this stuff. Er, when he was alive that is.
     
  10. justy

    justy Donate Advocate Demonstrate

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    @TiredSam - yes this is correct he HAD a CFS dx.
     
  11. justy

    justy Donate Advocate Demonstrate

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    I had to look him up!
     
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  12. duncan

    duncan Senior Member

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    Oh, that's too funny!

    Or am I just too old...? :rolleyes:
     
  13. justy

    justy Donate Advocate Demonstrate

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    You MAY be too old, but it would be rude to ask. I think the real issue is that we haven't had a lot to do with his work in the UK. Well we had the Twilight zone for a bit, but we also have our own TV people, that you have probably never heard of. Its a cultural thing, not an age thing.
     
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