Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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John Caudwell

Discussion in 'General ME/CFS Discussion' started by digital dog, Sep 27, 2015.

  1. digital dog

    digital dog Senior Member

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    As some of you may be aware, John Caudwell and his family have lyme. He is a VERY rich man in the UK who is investing a lot of money into finding a cure.

    I am not on Facebook but Im wondering if anyone here would be willing to suggest LDN to John on his Facebook page? Just a simple sentence asking him if he has looked into it and the fact it seems fairly successful in treating Lyme.

    The reason I ask is because if he looks into LDN it may be something he endorses and it may help our community (especially those of you with lyme) and the public in general.

    I would do it but do not want to go on Facebook...sorry.

    Anyone willing to do this? Would only take a moment of your time. Apparently he gets back to everyone who posts.

    I do not have lyme but I do believe that any treatment that helps it could help us.

    Thank you
     
    ahmo likes this.
  2. digital dog

    digital dog Senior Member

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    I've actually done it. I thought Id have to sign up and all that palaver but it was easy.
     
  3. ukxmrv

    ukxmrv Senior Member

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    He's rich enough to see any Lyme specialist that he wants to see in the world so probably not going short of a few ideas right now. It doesn't mean of course, that he will pick the right one.
     
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  4. Bob

    Bob

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    justy likes this.
  5. Scarecrow

    Scarecrow Annie Gsampel

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    JC is on ITV at 11:30. Sorry for not posting on the other thread - I've blocked the Lyme forum.
     
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  6. duncan

    duncan Senior Member

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    @Scarecrow, you blocked an entire forum?

    I've heard of members on forums blocking specific individuals...But you blocked the whole Lyme Forum?

    Am I understanding that correctly?
     
  7. Scarecrow

    Scarecrow Annie Gsampel

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    Um. Yep that's right. Nothing personal, it was making me crazy. I've blocked a thread or two in my time but never a member. I reserved that honour for Lyme.
     
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  8. duncan

    duncan Senior Member

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    Fair enough.

    Why announce it?
     
  9. Scarecrow

    Scarecrow Annie Gsampel

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    Actually John Caudwell spoke well and touched on my crazy-making issue with Lyme, which is the alleged unreliable tests used by the NHS.

    But has he been taken in by alternative unreliable tests? I hope not, not that I would wish Lyme on anyone.

    If he gets to the bottom of anything - and he's very rich and very determined - I hope it's that, whatever the outcome.
     
  10. Scarecrow

    Scarecrow Annie Gsampel

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    Just explaining why I'm not posting on the correct thread. People refer to blocking things all the time.
     
  11. maryb

    maryb iherb code TAK122

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    Re: This morning programme

    JC was absolutely BRILLIANT, so was Dr Chris. First time I've ever wanted to cheer at the TV. I so hope the NHS/health ministersetc and all the other nay sayers were watching and quaking in their over priced boots.
     
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  12. Bob

    Bob

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    The video recording has been posted in the other thread:
    http://forums.phoenixrising.me/inde...s-struck-with-lyme-disease.40037/#post-645732

    Just watched it.
    He's a fantastic advocate, and his family's story is very interesting, but sad.
    His son got ill at about 10, with psychiatric symptoms, and became suicidal "for every minute of every day". Then the symptoms spread to the body and he e.g. couldn't eat.

    To begin with, he's going to use his money to lobby the health service to take Lyme seriously and to test for it routinely, because he says that the main problem if that the NHS simply don't test for it. If he can't get them to take it seriously then he'll do other stuff to make sure people get tested (e.g. floating ideas about setting up his own testing facility, but he's not keen to do that.) He's been very touched by all the stories that people have told him on Facebook. He's not going to give up and is prepared to spend money to make things happen.

    The show's resident doctor and Caudwell both mentioned ME/CFS sympathetically and said all ME patients should be tested for Lyme. Caudwell thinks that most ME patients might have Lyme, but that's just a personal opinion based on his experience of Lyme disease.

    Very interesting. Worth watching if interested in this.

    (If u live in England you can also watch the video on the ITV player here - the feature is about 48/49 mins into the program. But the YouTube video is better.)
     
    Last edited: Sep 29, 2015
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  13. duncan

    duncan Senior Member

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    I agree. This was powerful testimony. He is a charismatic guy, and he is rightfully passionate about the predicament his family is in.

    Mainstream Lyme is going to have fits about the two clinicians/researchers he mentioned: Klinghardt and MacDonald. :)

    I am still not clear on which tests he drew positive results. This may prove a sticking point if they're not NHS or CDC 2T compliant, simply because of the politics. I am not a supporter of those test protocols, but common sense says if he satisfies those requirements, what a huge and validated champion he could be. Much more unassailable than if it's thru an alternative lab, or an alternative interpretation of the C6 or WB or ELISA.

    Regardless, he is an articulate and convincing potential spokesperson. I hope he and his family, and especially his poor son, can find effective treatment. Money is no gaurantor of success with late stage Lyme.
     
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  14. justy

    justy Senior Member

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    This is the actual video, in case anyone doesn't want to go over to the Lyme forum ;)
     
  15. justy

    justy Senior Member

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    Absolutely brilliant and passionate testimony from John Caudwell. I'm not sure but I suspect his family used the Elispot LTT from either Armin labs or Infectolab. His point, which is a good one, is that yes the NHS tests are unreliable, but what is worse is that the majority of people presenting to GP's with chornic problems eg mental health issues, dementia, neurological issues, CFS, M.E etc are NEVER even offered any testing for Lyme. This has been my experience - 20 years of ill health, 7 of them severely ill and no one ever asked if I might have been exposed or asked what job I did (gardener) or offered a Lyme test. For someone like me the mainstream NHS/CDC testing is going to be pointless.

    we have me and my eldest daughter infected with the possibility my whole family might be (4 children and a husband), I have written to John and told him about this, as have many many others.

    Doesn't look like he is going to give up any time soon. John Caudwell aslo carries a moral high ground in the UK for his companies and his personal views on Tax and tax avoidance - as he says he paid £250 million pounds in tax last year personally and he believes in the health service helping people.
     
  16. justy

    justy Senior Member

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    Can I just add, before anyone suggests moving this discussion to the Lyme thread, that this discussion is about the wider issue of the possibility that M.E is caused by Lyme, or co exists with Lyme in some patients and why we have been so let down with lack of appropriate testing and care.
     
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  17. A.B.

    A.B. Senior Member

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    I've heard rumors that De Meirleir wants to make a study on lyme disease biomarkers but lacks funding.
     
  18. ukxmrv

    ukxmrv Senior Member

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    When I listened to the interview I thought he said that most ME patients would test positive for Lyme. We need a research project that shows this is true but as usual it's not been done.

    Then we need to know if the ME outbreaks in the 20th Century were caused by Lyme.

    The CDC says under diagnosis of CFS

    "CFS can resemble many other illnesses, including mononucleosis, Lyme disease, lupus, multiple sclerosis, fibromyalgia, primary sleep disorders, and major depressive disorder. Medications can also cause side effects that mimic the symptoms of CFS."

    http://www.cdc.gov/cfs/diagnosis/

    If UK doctors were using that criteria for dx and knew that the NHS test was faulty then they have been negligent. I'm going to take a look at the NICE Guideline and see if Lyme is mentioned there.
     
    justy likes this.
  19. duncan

    duncan Senior Member

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    The tests to see if you "have Lyme" are so controversial, for good reason.

    If anyone wants to see what the chances are that a certain portion of PWME have Lyme, or were exposed to Lyme and maybe Lyme triggered ME/CFS, then maybe testing should be genus down, i.e., a test for exposure to the broad genus of Borrelia, that will not fail by virtue of species-based issues.

    I'm not sure such a test exists.
     
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  20. justy

    justy Senior Member

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    There is a theory going around that M.E is CAUSED by Lyme, so not that all M.E IS Lyme but that untreated Lyme can lead to M.E. I guess another way of looking at it is that Lyme is much more prevalent than previously thought, that many people are exposed, but because they don't have some kind of genetic predisposition then they clear it themselves or it lays dormant in them but never becomes more active after the initial infection. Perhaps in PWME there is a genetic reason they can't clear Lyme and co? this is all speculation of course, but the kind of speculation that some Drs are looking at. Personally I have aseen a lot of cases of M.E/EDS/LYME/MCAS and I am in this category...a lot of Lymies that develop MCAS seem to also have EDS and find it harder to get well (anecdotally). EDS is genetic, so perhaps these types of people cant clear the bacteria? KDM told me 30% of his patients have EDS IIi Hypermobile type.

    Of course that still leaves the very thorny issue of outbreaks and clusters, and I can't begin to work out how the above theories would fit with that, apart from if the outbreak types of M.E and the Lyme types were just two different illnesses that looked very similar? I'm not sure, or attached to any idea, just playing around with it.

    And all this is BEFORE you even start thinking about other infections such as Bartonella, which on it's own is pretty scary. I posted a video of a vet and researcher talking about Bart a month or so back and it is VERY compelling watching...a bit scary and makes me wonder why more people are not talking about this as well as Lyme.

    Good idea...of course most GP's ARE being negligent with most long timers. I now fail a number of standard NHS tests such as Low Ferritin and iron, low Vitamin D, Increased ESR (but when you have M.E they always say it doesn't mean anything) and a positive Anti Nuclear Antibody test and elevated IGM (that means nothing as well apparently and they know this without even investigating it!) and yet I STILL have a diagnosis of M.E despite this going against thgeir won guidelines.

    Would be interested to see what NICE does say about M.E and Lyme.
     
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