Responding to The Times

On 29th September a letter was published in The Times newspaper by a retired medic, where he promoted a view of Lyme disease that we felt was outdated and not supported by the evidence. We duly wrote to The Times to point out the factual errors. Our letter was not published, so we asked why. A discussion followed with their Feedback Editor, who refused to publish our letter. We feel it is important that the facts are published, so here is the train of events.

This is the original letter, itself a response to an article about Phone4U founder, John Caudwell.

Tick-borne disease

Last updated at 6:25PM, September 29 2015

The only form of transmission of lyme disease is inoculation by ticks, a leading expert says

Sir, You report that the founder of Phones4U and his family have been given a diagnosis of lyme disease (Sept 23). Lyme disease is not an epidemic disease or a contagious disease; nor has there been any evidence of congenital transmission or transmission through breast milk. The only form of transmission is inoculation by ticks.

A positive blood test may indicate that a person has been bitten by a lyme disease-infected tick although the patient has not developed overt lyme disease. Positive tests may persist for many years, even after treatment. There is no need to send specimens of blood for testing in the United States, as diagnostic methods in the UK are available and are comparable.

Most cases of lyme disease, with the exception of lyme arthritis, tend to be self-limiting and respond to short courses of antibiotics. Industrial doses of antibiotics given over long periods do not promote further cures.

Some rare cases with neurological and psychiatric presentations may be related to the after-effects of tick-borne flavivirus encephalitis. Physicians will always seek to find an organic cause for unexplained and unpleasant physical and psychological symptoms; sadly lyme disease is very rarely the cause.

David J M Wright MD FRCPath

Director (1982-2000) of the Lyme Disease Reference Laboratory, formerly at Charing Cross Hospital, London W6

And our response,

Sir,

Dr Wright is correct in much of his facts about scientific evidence for Lyme disease transmission. Animal studies have failed to demonstrate transmission by anything other than ticks and although placental transmission has been reported in autopsies of stillborn children, congenital transmission to a surviving child has not been proved.

The NHS tests are comparable with those used in accredited laboratories abroad, but all use diagnosis by serology which relies on the development of antibodies and this form of testing has inherent limitations. There are several reasons why a Lyme disease case may have a negative test result but sadly many clinicians are unaware of this. Diagnosis should primarily be clinical. Although a definite case requires positive serology, medicine is not an exact science and it is necessary for doctors to be pragmatic and use their clinical judgement in diagnosing possible and probable cases as they do in other conditions. UK contracted cases cannot be confused with after effects of tick-borne encephalitis as this has not yet been recorded in the UK.

Treatment uncertainties are many. The UK charity Lyme Disease Action completed a project with the James Lind Alliance, now part of the National Institute for Health Research, which confirmed that the best treatment for anything other than early Lyme disease is not known because of the lack of good quality European trials. LDA works closely now with Public Health England and has developed a partnership which facilitates detailed consideration of difficult cases. This has resulted in successful re-treatment of some cases, including some with negative blood tests. In a further partnership LDA has worked with the Royal College of General Practitioners to produce an e-learning module on Lyme disease.

Lyme disease is not always self-limiting and there is extensive evidence that it can persist for the life-time of the mammalian host. Lyme disease may not be an epidemic disease but since the first reports of UK cases in the 1970s, numbers have risen fast. Not all cases are reported so no-one has a true idea of the scale of the problem. Public awareness has grown faster than UK doctors’ knowledge and experience and ready access to internet resources increases the pressures being brought about by this complex, poorly understood disease.

Stella Huyshe-Shires

Chair, Lyme Disease Action

We asked the Feedback Editor why our letter had not been published, and the reply was, “I am not clear from your email what errors you found in Dr Wright’s letter. It would be helpful if you could make these specific in layman’s terms.” This is the email train that followed.

LDA:

Many thanks for your speedy response.

 I quite understand the need for a layman’s perspective.  We were trying to respect Dr Wright while putting the record straight, but perhaps we should have been less mindful of his feathers being ruffled and made it 100% clear, as we are now going to do at your request.

1.    Dr Wright’s first paragraph – “Lyme disease is not an epidemic disease or a contagious disease; nor has there been any evidence of congenital transmission or transmission through breast milk.  The only form of transmission is inoculation by ticks”.

LDA’s reply: “Lyme disease may not be an epidemic disease but, since the first reports of UK cases in the 1970s, numbers have risen fast.  Not all cases are reported so no-one has a true idea of the scale of the problem.” ‎

And “…although placental transmission has been reported in autopsies of stillborn children, congenital transmission to a surviving child has not yet been proved” – by which we mean that there is doubt on this topic, which Dr Wright does not allow for.  There could indeed be congenital transmission to children.‎

2.    Dr Wright says, in his second paragraph:  “There is no need to send specimens of blood for testing to the US, as diagnostic methods in the UK are available and are comparable.”

LDA’s reply:  “NHS tests are comparable with those used in accredited laboratories abroad, but all use diagnosis by serology, which relies on the development of antibodies and this form of testing has inherent limitations.  There are several reasons why a Lyme disease case may have a negative test result but sadly many clinicians are unaware of thisDiagnosis should primarily be clinical.  Although a definite case requires positive serology, medicine is not an exact science and it is necessary for doctors to be pragmatic and use their clinical judgement in diagnosing possible and probable cases, as they do in other conditions.”  What LDA is saying here is that there known “inherent limitations” – and many doctors are unaware of this , as plainly is Dr Wright.

3.    Dr Wright says, in his third paragraph:  “Most cases of Lyme disease, with the exception of Lyme arthritis, tend to be self-limiting and respond to short courses of antibiotics.  Industrial doses of antibiotics given over long periods do not promote further cures.”

LDA’s reply:  “Lyme disease is not always self-limiting and there is extensive evidence that it can persist for the life-time of the mammalian host.”  LDA also says:  “Treatment uncertainties are many.  The UK charity Lyme Disease Action completed a project with the James Lind Alliance, now part of the National Institute for Health Research, which confirmed that the best treatment for anything other than early Lyme disease is not known because of the lack of good-quality European trials.”

4.    Dr Wright says, in his fourth paragraph:  “Some rare cases with neurological and psychiatric presentations may be related to the after-effects of tick-borne flavivirus encephalitis.  Physicians will always seek to find an organic cause for unexplained and unpleasant physical and psychological symptoms; sadly, Lyme disease is very rarely the cause.”

LDA’s reply:  “UK contracted cases cannot be confused with after-effects of tick-borne encephalitis as this has not yet been recorded in the UK.”

 I hope it is clear to you that Dr Wright is no longer an expert on tick-borne diseases.

I also hope that you will use these points, 1 – 4, as detailed above, to ensure clarity for your readers as well as for you in connection with what is a very complex, poorly-understood disease.

Public awareness has grown faster than UK doctors’ knowledge and experience, and ready access to internet resources increases the pressures being brought about by Lyme disease.

The very polarised reaction of Dr Wright is not helpful in moving both doctors and patients into the middle ground, where the science can be heard.

If you’d like further information, I will be available tomorrow by email or phone.

I am also attaching a copy of a briefing note on Lyme disease prepared for a House of Lords debate coming up, which you may find useful.

Best wishes

Stella Huyshe – Chair

Lyme Disease Action

LDA:

I’d be most grateful for an update from you on this response letter. I am at a conference overseas at present so haven’t been able to check for updates.

Have you published LDA’s response, below‎, yet, please? If so, a link would be much appreciated.

If not, please would you be good enough to let me know the rationale for not doing so?

Many thanks indeed.

Best wishes

Sue Ockwell

The Times:

Dear Sue, we will not be using the letter, thank you.

LDA:

That’s very disappointing, especially as we immediately responded to your request for clarification.

I’d be most grateful if you’d kindly explain why this decision has been taken‎.

Thank you.

Best wishes

Sue Ockwell

The Times:

I explained that if there were factual errors in Dr Wright’s letter we would correct them, I have not seen anything in what you have sent other than a difference over emphasis. There has been at least one more story about Lyme disease since Dr Wright’s letter was published and you are obviously welcome to submit further letters to the editor on the subject, but this particular correspondence is closed.

LDA:

How very disappointing that you cannot see the key factual errors in Dr Wright’s letter. Many Lyme sufferers have been waiting for a response to Dr Wright and will be equally disappointed; their faith in The Times will, I think, be substantially depleted; what a pity.

Best wishes

Sue Ockwell