Lyme - "why NHS treatment is so inadequate" - Telegraph opinion piece

[sarah darwins]

Second day in a row there's been an article on lyme in Britain's Telegraph newspaper. This one is a comment piece:

http://www.telegraph.co.uk/news/hea...treatment-is-so-inadequate.html#disqus_thread

Now we just need them to start writing some decent articles about M.E.

 

[duncan]

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.

 

[ukxmrv]

I can't access the article.

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

 

[justy]

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.

 

[justy]

I can't access the article.

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

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.

 

[duncan]

@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?

 

[sarah darwins]

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

Lyme disease? Isn’t that something you get from a tick?

For most people, that’s all they know about a complicated and devastating illness that has unhappily been my bedfellow for the last five years. Hopefully, following recent media coverage after singer Avril Lavigne discovered she had it, and the Phones 4 U founder John Caudwell and his entire family were diagnosed with it, there will be a slightly higher level of awareness and understanding –- and consequently fewer people affected to the degree I have been.

My own grim journey started six months after I graduated in 2010. After an initial bout of flu-like illness, my health gradually started to decline. I developed migraines and started having extreme fatigue attacks, initially once a week, and then daily. After about six months, I began having a five-day bout of “flu” roughly once a month. I also developed a total intolerance to alcohol and became severely photophobic.

Incredibly, it took four years of endless doctor appointments for the words “Lyme disease” even to be offered as a possibility. I saw 15 specialists in that time, from a number of fields, and none of them suggested it.

The psychological impact of this illness, if it is not properly diagnosed and treated, is colossal. To what extent that is because of the bacteria attacking the brain, or simply the result of the desperate situation people find themselves in is unclear, but over the past 1,112 days I have spent at home I have been through virtually every negative emotion possible. I’m not helped by a cruel mind that constantly imagines what I would be doing if it weren’t for this illness; how much interest and excitement there should have been in these years, rather than the daily struggle that has been my reality.

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/

 

[justy]

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

 

[Large Donner]

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".

 

[Hip]

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).

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.