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National Welsh newspaper prints my Lyme story

Discussion in 'Lyme Disease and Co-Infections' started by justy, Oct 18, 2015.

  1. justy

    justy Donate Advocate Demonstrate

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    Publicity and awareness raising is gathering pace after John Caudwell's ongoing camapaign to highlight the high cost of undiagnosed untreated Lyme disease in the UK. Wales On Sunday approached me for an article and here it is (online version)

    http://www.walesonline.co.uk/news/wales-news/lyme-disease-wrecked-justine-railtons-10280137

    I'm pretty happy about it, apart from the mildly sensational use of words like 'wrecked' and 'terrified'. Those of you who know me around here can probably spot that I don't normally speak like that. But overall it does a good job - although he mentions Chronic fatigue not M.E or CFS - which is what I told him.
     
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  2. duncan

    duncan Senior Member

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    Well done! I thought it was a good article.

    You have a beautiful family.

    I did not know it snows in the UK. Sadly, my appalling ignorance must be a DNA thing as both my kids suck at geography, too.

    Back to the article: Your story will help leverage awareness in the UK. That was a brave and good thing to do.
     
  3. justy

    justy Donate Advocate Demonstrate

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    @duncan - thank you! One thing that anybody from outside the UK reading that article will learn is that it is COLD in Wales.

    It snows all over the UK - but not so much in the South East and London, and it doesn't snow reliably every year. We live in the country in the West of Wales so it is a little colder and wetter. That year we had so much snow - but have only had a few years like that in the last 10 - it is mainly just wet and 'mild' as they call it in the UK - or as we call it grey and miserable.

    There are a lot of stories all over the British press at the moment who are jumping on the John Caudwell bandwagon - thought it was a good opportunity to raise some awareness. Interesting that the Welsh health authority recognises the prevalence has increased 12 fold in recent years!
     
  4. sarah darwins

    sarah darwins I told you I was ill

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    I'll have to read it properly later, Justy, but for now — well done, you. And thank you.
     
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  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Congrats - putting a face to our illness 'humanizes' us in the public sphere - you continue to be part of the solution!
     
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  6. GaryK

    GaryK

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    I think your very Brave too Justy!

    I live in an area here in Canada that is so bad with ticks it has become common place to see them on people and animals all the time. Our Government does little for this too. Medically they only test for ONE strain of bacteria. So many are testing Negative and staying sick for long time like your self Justy.

    Only the lucky ones who have supporting family/friends to help raise money for thier sick loved ones get to go to the USA to get expensive treatments . So This story of your sadly enough rings very similar bells. Our Counties should be ashamed of them selves for letting this tragedy happen.

    Thanks for doing this Justy!

    Gary
     
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  7. Kina

    Kina

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    Great article except for the repeated referral to 'chronic fatigue' which isn't surprising. How come they didn't ME
    @justy -- I thought that was a co-diagnosis?
     
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  8. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Go you!! :)


    Wales, snow?! Pffft, ankel deep! (Well, bar in the Breacon Beacons)
    When I were a lad, I recall 22 foot deep drifts in one valley near Moffat, never mind what you can get in the Highlands!
    ...and having to crawl, bare naked through the howling blizzards and endless tundra to get to school, while being chased by packs of ferocious dire wolves!
    :D

    [​IMG]

    Then again, snow = frozen sheep, this is of course, a disaster for Wales
    ahem :p

    what I never forgot form them days (the real stuff that is lol) was every time the Welsh came up to play Scotland at Rugby, the Welsh supporters would shove a leek up the bum of the bronze ram (sheep) that was the big statue in the middle of the wee town (farming town middle of nowhere in Scottish Borders)
    Figging, Welsh style, buhaha! :wide-eyed: :p

    [​IMG]
     
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  9. Valentijn

    Valentijn Senior Member

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    I don't think journalists are very good with complicated situations. Such as one infection/illness triggering another :p And since they can't tell the difference between CF and ME, they're probably assuming the "fatigue" was a misdiagnosis.
     
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  10. Kina

    Kina

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    I would agree with that. I was just wondering if justy mentioned it and they left it out or they got things wrong or if it was all too complicated so they left it out on purpose.
     
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  11. justy

    justy Donate Advocate Demonstrate

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    Yes I did mention it - said it was my NHS diagnosis - M.E and that I may have that as a result of the untreated Lyme. But to be honest I didn't want to bang on about it as they wanted a Lyme story, and the fact that my daughter is also positive and pregnant was a big pull for them.

    I think the situation was possibly too complicated - they just wanted a '......wrecked my life' story and I wanted to raise awareness of Lyme. They didn't talk about any of the medical issues with M.E/Lyme/testing/treatment that I mentioned.
     
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  12. justy

    justy Donate Advocate Demonstrate

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    Ha ha - @SilverbladeTE - 'you were lucky! we didn't have a house, we lived in a hole in't middle of road - and thought ourselves lucky'

    Yes I know Wales is soft in comparison to Scotland, although maybe not when it comes to Rugby!
     
  13. sarah darwins

    sarah darwins I told you I was ill

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    Post-sleep, I read the article. I would say you achieved your objective really well, Justy. The awareness level in Wales just went up a few notches.

    Re the "chronic fatigue" thing ... if nothing else, it underlines the problem of terminology and the widespread misunderstandings that result. Until that's sorted out, promoting public understanding of me/cfs is almost impossible.

    The name makes such a difference. I've found that mentioning "lyme" to people results in great sympathy. Mentioning m.e. or cfs to the same people produces an eye roll or a frown. Apparently, in the public imagination, "lyme" sounds like a thing, while neither m.e. nor cfs does.

    Edit: and very few people realise that "chronic fatigue" and cfs aren't the same. Understandably, really.
     
    Last edited: Oct 18, 2015
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  14. justy

    justy Donate Advocate Demonstrate

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    Yes this is exactly the problem - people are happier with me saying Lyme, rather than M.E and so was the journalist. He didn't want ot muddy the water with the whole M.E thing - he actually came to me htough a Lyme group and wanted a Lyme story. I told him that many people with M.E are testing positive for Lyme but he obviously didn't want to hear that...too complex!
     
  15. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    hehe! ;) ah that Monty Python scene is a classic :)

    sigh, we invented football 600 years ago, and ever since then, it's been downhill!! :p
     
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  16. MadeleineKM

    MadeleineKM Senior Member

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    What a nice article, Justy!! Although sad to read but it was very good to educate and to get people know about the worries Lyme families have. I am familiar with the worries for new child to get ill... And in my family we thought first I was the only one ill, then my sister and now my brother...
     
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  17. Abha

    Abha Abha

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    "Unfortunately, because I have been left ill so long I have now developed a condition called mast cell activation syndrome – that makes me have allergic reactions to lots of things like drugs, perfumes, chemicals etcetera."

    Hi Justy,

    Thanks for posting your newspaper article.Sorry to hear about your/family lyme infections.You have mentioned it has cost you a fortune so far trying to get a diagnosis/treatment.That has been the same in my case too..I suffer from two types of rickettsias(diagnosed by Dr Jadin/Belgium/Johannesburg)....various thyroid problems including parathyroid disease /osteoporosis/pernicious anaemia/autoimmune gastritis/B12 deficiency.......and most importantly in the past year I got a hypopituitarism(PTHP) diagnosis.I now know that malathion(an OP) and secondary impact syndrome(double concussion in quick succession) played a major part in my own illness.
    In my case the NHS really only treated the depression part of my illness(and one has to be thankful for that) but as for the other tests/diagnosis I had to plough a lone furrow and try to find those doctors(worldwide) who could help me.I have had gut /brain problems going back about 50years.Getting back to your article(see pasted part above)....I see you were diagnosed with Mast Cell Activation Syndrome...from reading your account of this I guess I have that too as I'm similarly affected.Finally, I suffer from cpn and ebv too....
     
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  18. ahmo

    ahmo Senior Member

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    great job and beautiful family Justy. thanks for sharing. sorry to read how severe your condition is.:hug:
     
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  19. bertiedog

    bertiedog Senior Member

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    Well Done @justy for raising awareness. I was born in Newport BTW and most of my family come from south Wales (we have traced them back to 1821 so far) so we have more in common than ME/CFS/Lyme!

    Pam
     
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  20. Sushi

    Sushi Moderation Resource Albuquerque

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    @justy Congratulations for being a willing poster-girl. This article is very likely to do some good in in the rolling snowball of Lyme awareness. You and your family all look so lovely despite Lyme. (And that is not a "But you looks so good, how could be sick!" :cautious: comment.)
     
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