Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Lyme - "why NHS treatment is so inadequate" - Telegraph opinion piece

Discussion in 'Lyme Disease and Co-Infections' started by sarah darwins, Oct 12, 2015.

  1. sarah darwins

    sarah darwins I told you I was ill

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  2. duncan

    duncan Senior Member

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    This is a good comment piece. Thank you for posting, @sarah darwins .

    Is it the practice of the Telegraph to offer contrary opinions? I wonder what might be said, and who might say it.

    In the US, it can be difficult to get balanced Lyme articles since the media has been conditioned that all things anti-IDSA are anti-Science. Of course, that is a distortion.

    ME/CFS issues simply don't seem to generate enough interest among the journalists to get written - or if they do, they are mostly about fatigue. There are a few notable exceptions like the NY Times (Tuller).

    It might not be a long stretch to declare the press, in general, historically, has not been an ally to either Lyme or ME/CFS patient communities.
     
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  3. ukxmrv

    ukxmrv Senior Member

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    I can't access the article.

    Wondering if this was printed in their paper edition or is just an online thing?
     
  4. justy

    justy Senior Member

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    Not sure who Adam Wintour is who wrote the article, but it is an excellent one :).

    @duncan Lyme disease is getting a lot of GOOD press in the UK at the moment after Phones4U founder and billionaire John Caudwell came out and said his son and 4 other family members, including himself were infected.
     
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  5. justy

    justy Senior Member

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    I could see it from the link, but was informed it was my one free access this week - the page is covered in adverts, slow to load and took me to the bottom of the page first.
     
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  6. duncan

    duncan Senior Member

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    @justy , the spotlight on his family's plight, and the difficulties confronting many Lyme sufferers, is extra-ordinary. Any excess press that shines on our dilemma, please ship west?
     
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  7. sarah darwins

    sarah darwins I told you I was ill

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    For anyone having trouble accessing the site, a few quotes:

    Source: The Telegraph (UK paper)

    The Telegraph does offer 15 free articles per month per device if you're using a regular computer/laptop. I think tablets might be more limited.

    @ukxmrv — you should be able to access it on a PC/laptop. If you still can't, let me know and I'll PDF you a full copy. The Telegraph's paywall only kicks in after a certain number of reads each month. I'm pretty certain it is in the printed paper, too.

    @duncan - the Telegraph is politically very big-C Conservative (I read the online Telegraph and the Guardian every day, on the grounds that the truth is probably somewhere between them!), but it can be quite bold in its non-political coverage. I've felt for a while it might be the first mainstream UK paper to jump ship on me/cfs and psych theories. Maybe lyme will be the first domino.

    As Justy says, the coverage of John Caudwell's situation is a big factor. Like it or not, big money and profile get the papers interested. John C has been devoting a lot of resources to making people sit up and listen. I'm sure there will be a backlash, but so far it's mostly been positive.

    It's definitely a positive that The Telegraph is taking an interest. Whether one likes its political stance or not, it's the UK"s 5th largest newspaper by circulation and the biggest non-tabloid by some distance.

    In case anyone missed it yesterday, I posted a link to another Telegraph lyme article (Sunday Telegraph), which is factually a bit wobbly but still a step towards a wider conversation:

    http://forums.phoenixrising.me/index.php?threads/sunday-telegraph-article-on-lyme.40454/
     
  8. justy

    justy Senior Member

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    John Caudwell is on Facebook and regularly updating on his and his families health and his campaign to change how Lyme is diagnosed and treated in the UK
     
  9. Large Donner

    Large Donner Senior Member

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    BBC London evening news just had a feature on how London parks have increasingly been implicated in carrying lyme tics.

    They interviewed a woman they claimed was "now on the mend" although she looked like death warmed up. Perhaps she got early treatment or she isn't into the second "post viral stage".

    Like many of us know from our own illnesses we initially went down feeling like we had been hit by a truck, but now it only feels like being hit by a car, continuously, for ever.

    They also made the claim it was on the increase estimating 3000 people in the entire UK may have it.

    That's a classic NHS spurious statistics figure whilst they dump all possible cases under labels like "CFS" which according to official figures as many as 1 million people suffer from in the UK.

    They did make the claim that 4/5 tics in London parks where found to be carrying lyme and featured the guy who supposedly discovered this.

    At least they have moved on from "you can only get it from deer tics".
     
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  10. Hip

    Hip Senior Member

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    Yeah I am not sure why ME/CFS rarely makes it into the US press.

    I did today though see a good ME/CFS article in The Altantic: The Tragic Neglect of Chronic Fatigue Syndrome.
     

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