Most people who claim to be suffering from long-term Lyme disease probably do not have the condition, NHS experts have said.
Rather than living with the consequences of the tick-borne bacterial infection, they are more likely to have a form of chronic fatigue syndrome (CFS), the medics believe.
- The Science Media Centre hosted a briefing for journalists about Lyme Disease which prompted a lot of press coverage and controversy
However, the panel said that because of the stigma attached to CFS, which used to be disparagingly called “yuppie flu”, patients are reluctant to accept the diagnosis.
In addition, doctors are shying away from telling patients they have the syndrome because there are so few effective treatments for it, suggesting instead that Lyme disease is to blame.
The scientists said desperation with the long-term symptoms of CFS are pushing patients into the hands of unscrupulous clinics who are more likely to give a positive blood test result for Lyme disease the more money that is paid.
- The ME Association has a new leaflet about Lyme Disease and ME/CFS available from the website shop (see below)
Dr Sarah Logan, lead consultant at the Hospital for Tropical Disease, University College London Hospitals, said:
“Most people who now think that they may have had Lyme disease, in fact have a syndrome that is more in keeping with Chronic Fatigue Syndrome.
“And because there is increased awareness about it, they are testing for Lyme Disease and then they are going on to various different Lyme disease forum on the internet and being told, “well actually the UK tests are rubbish, but you need to send it off to Germany”.
“And then they are coming back with a test that is positive and saying, “you doctors are all wrong and I don't have Chronic Fatigue Syndrome, I have Chronic Lyme disease”.
“So, I think that most people who think they have got Lyme disease in the UK, probably don't.”
- Lyme Disease UK issued a statement in response to the SMC briefing (see below)
The current official estimate for the UK is around 2,000-3,000 new cases of Lyme disease annually based on laboratory data in England and Wales and centralised reporting in Scotland.
Many people who are bitten by a disease-carrying [tick] will develop a rash within a few weeks of the exposure. Tests within the first six weeks are not reliable, however, and produce a lot of false negatives.
The uncertainty around the time of possible infection leads many patients suffering long-term fatigue to suspect it was a tick bite that caused it, according to Dr Matthew Dryden, Consultant Microbiologist, Hampshire Hospitals NHS Foundation Trust.
He said that a long-term study of patients with confirmed Lyme disease infections in the south of England showed that only a small minority suffered from long-term symptoms.
“In most cases patients with true Lyme do not develop serious chronic symptoms.”
As well as a rash, patients infected with Lyme disease can develop flu-like symptoms. If it is not treated promptly with antibiotics, the condition can cause pain and swelling in joints, nerve and heart problems and trouble concentrating for years after.
Lyme Disease UK Statement
Lyme Disease UK, a patient charity, was present at the SMC briefing, and promptly issued a statement:
“We are disappointed in the proposition put forward at the briefing at the Science Media Centre today, that many possible Lyme disease sufferers actually have Chronic Fatigue Syndrome, a condition that has no diagnostic test and relies on the exclusion of other conditions…
“We agree that a disservice is being done to patients who suspect that they may have Lyme disease following a rash, multi-systemic symptoms or a positive blood test.
“Many doctors do not recognise the EM rash which is diagnostic of the disease itself. Many are unaware that ticks infected with the bacteria that causes Lyme disease have been found in every county in the UK and many know nothing about the dire consequences of missing or incorrectly treating an acute Lyme infection.
“These are the key messages that doctors and the general public need to be informed about. There should not be a downplaying of the currently inaccurate incidence figures or an over-reliance on serological testing, especially when there has been great progress made this year in terms of raising awareness of the disease.
“The inference that patients would feel less stigmatised by a Lyme disease diagnosis than they would a Chronic Fatigue Syndrome diagnosis, is without substance. Both conditions are severely stigmatised with a lack of treatment options, if any, available on the NHS.
“Patients are often suffering debilitating symptoms that have completely disrupted their lives. They want a definite and correct diagnosis, adequate treatment and their lives back. Sufferers of both conditions deserve so much more from their doctors and experts.”
New MEA Leaflet: Lyme Disease – The Facts by Dr Charles Shepherd
Please note that this leaflet has been reproduced in the Autumn 2019 issue of ME Essential – the magazine for members of the ME Association. It is also available from the website shop.
“Lyme disease is a serious infection that is spread to humans by tick bites. It is always in the news – often because someone has not been diagnosed and treated during the crucial early stages.
“As a result, they may have developed a chronic and untreatable form of Lyme disease, which can cause joint, heart and neurological complications.
“Lyme disease has a number of symptoms that are very similar to ME/CFS. So, Lyme disease should always be considered if there is any indication that ME/CFS symptoms may have followed a tick bite, or were accompanied by an unusual skin rash at the site of a bite…
“The term ‘chronic Lyme disease’ is now being used to describe a situation whereby a range of ME/CFS-like symptoms – fatigue, muscle and joint pain, cognitive dysfunction – are linked to Lyme disease, usually in the absence of a blood test confirmation.
“Although Lyme disease is now recognised by most doctors as a genuine and potentially serious medical condition, there are controversies and uncertainties surrounding the diagnostic tests being used and the methods of treatment in both the NHS and the private medical sector.
“This has led to increasing concern about the way in which some of the Lyme disease tests that are available overseas and in the UK private medical sector are providing an inaccurate diagnosis of ‘chronic Lyme disease’ and the prescription of unnecessary courses of powerful antibiotics.
“Lack of medical education about Lyme disease also means that late diagnosis and misdiagnosis are still occurring – just as with ME/CFS…”
Other news-media covered the SMC Briefing and also reported similar outcomes:
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