Following the Science Media Centre’s briefing on Lyme disease, many journalists seem to have used the news release from the UK news agency pa media. We can’t be sure which experts talked at this briefing, but the news release mentions two. Let’s take a dispassionate look at this release.
MOST PEOPLE IN UK WHO THINK THEY HAVE LYME DISEASE, PROBABLY DO NOT, EXPERT SAYS – PA Science Correspondent
Most people in the UK who think they have Lyme disease “probably do not”, an expert has said
Well that was a snappy sentence that hard pressed journalists were bound to pick up. However, for a briefing where the stated aim was to address the state of the evidence, how much was actually based on opinions shared by one group of experts?
Hundreds of patients seek diagnosis for the condition after they visit their GP with symptoms that could also match those of Chronic Fatigue Syndrome. But because of the stigma attached to the syndrome they do not want to accept the diagnosis, or find that doctors shy away from telling them they have chronic fatigue syndrome, scientists explained.
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.
We are not aware of any evidence that this is true. As far as we know no study has ever looked at people who either “think they have Lyme disease” or who attended their GP to ask about Lyme disease. This sounds like opinion, probably based on the experience and of working in this challenging clinical area, and would warrant further research, from both a medical and patient perspective to better understand the issues. The last published study on people attending such a referral clinic for suspected Lyme disease diagnosed one third with CFS/ME (not “most”) and the remaining with either Lyme disease or “we don’t know”(1). In that study only those with a positive blood test, or definite tick bite and EM were diagnosed with Lyme disease. As the blood tests have inherent limitations, some Lyme disease cases may have been missed.
“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’.
This is true to a certain extent, but numbers are not available. There have been a lot of media stories about ill people with a variety of symptoms which could be due to various conditions who have sent samples to a couple of private German laboratories which use tests not validated for Lyme disease diagnosis. They have been told their test results “are an indication for an actual cellular activity against Borrelia burgdorferi” These labs, whilst having German accreditation do not submit samples to any formal external quality assurance programme aimed at validating results. Certainly LDA experiences many people contacting our help desk following negative NHS Lyme disease tests and positive tests from these private laboratories.
“So I think that most people who think they have got Lyme disease in the UK, probably don’t.”
That’s her opinion, presumably based on her perception of patients seen in clinic, and perhaps what colleagues say. It may be based on exact figures that they have not published, but it may just be the perception of an overwhelmed clinic.
She explained that she did not think it was an issue of doctors not being able to diagnose chronic fatigue, but that the problem may lie in the “stigma” still attached to the condition. Dr Logan added: “It is the sort of syndrome that is difficult for people to hear when they are told that they might have it, and it is also difficult for doctors to give the diagnosis because at the moment our treatments and out support network within the NHS for patients with chronic fatigue is not great.
“I think we are not doing these patients a great service at the moment by not confronting the issue upfront – to be honest I think GPs probably do shy away a little bit from spelling out those words to patients, because they feel this is terribly unsatisfying for everybody.
“I think there is a bit about patients not wanting to hear it because of all those stigma reasons, and there is a little bit about GPs hoping – probably not unreasonably – ‘let’s look for an alternative diagnosis because then that is something we can treat’.”
This may be true as GPs do want to help their patients and address their concerns, and if they may have something treatable, and clinical history matches, then it makes sense to investigate the alternatives.
Dr Logan said that in these instances, by the time a Lyme disease test comes back negative the seed has already been planted in the patient’s mind, often causing them to seek another test from a Lyme disease clinic.
She added that some patients are paying up to £600 for a consultation and test that has not been validated.
Rates of Lyme disease in the UK are around five per 100,000.
We don’t know the incidence of Lyme disease, because not all cases are reported. Some studies have tried to get a better estimate by examining GP records and further research is needed in this area.
Speaking at the Science Media Centre, Dr Logan also explained that patients who present to the GP with the rash associated with Lyme disease are given antibiotics, which in most cases successfully treats them.
LDA knows of cases where the rash has been treated inadequately, either because it was mis-diagnosed as something else or because the GP did not consult guidelines to find out the correct treatment. Studies show that the vast majority of people treated correctly at the rash stage do recover completely.
Where the symptoms match the disease, but there is no rash, the guidance is for blood tests to be conducted.
This is true, though if Lyme disease is considered very likely, the guidance is to start treatment while waiting for the blood test result.
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. It has become the most common tick-borne infection in many parts of Europe and the USA, and high rates in nearby countries had prompted fears the current UK estimate was too low.
This has been the official estimate for at least 10 years. In that time reported cases have increased by 60%. As Lyme disease is an emerging disease in the UK (unlike Europe where it has been present for more than a century), LDA believes it is time to increase the estimate. Although there has been increased awareness, cases diagnosed at the rash stage are still unreported and we have no real idea how many there are.
The bacterial infection is spread to humans via bites from infected ticks, and symptoms can include a circular red rash often described as a bullseye on a dartboard.
Some people get flu-like symptoms instead of the rash, and if it is not treated promptly with antibiotics it can cause pain and swelling in joints, nerve and heart problems and trouble concentrating for years after.
All the symptoms can occur early in infection and it is widely known that delayed treatment can lead to a worse outcome.
We notice that in several articles following this briefing Dr Dryden is quoted as saying “In most cases patients with true Lyme do not develop serious chronic symptoms.” This is based on his experience documented in a 2014 paper(3) in which all patients were diagnosed within 9 weeks of infection and so were treated early, thus improving the chance of complete recovery. There was no active follow up and it was left to patients to request review if there were concerns about relapse or recurrence, so some cases with chronic symptoms may have been lost to follow up. It is worth pointing out that in 2018 31% of reported cases in England and Wales were recorded as “late diagnosis”. European studies have shown a very significant number of people suffer from ongoing symptoms many months after treatment (4).
It is true that
- people may be encouraged by on-line forums, social media and media articles to seek Lyme disease testing from private laboratories overseas.
- some of the tests used by these laboratories have been shown not to be useful in diagnosing Lyme disease and some of them are not specific for Lyme disease, so people may well be told they have Lyme disease when they do not. This is grossly unfair on these patients and generates further mistrust.
- people misdiagnosed in this way may have CFS/ME, but they may have another undiagnosed condition. A survey of people referred to a specialist CFS clinic found that 49% did not have CFS/ME (2)
It is misleading to imply that
- most people who think they have Lyme disease have CFS/ME;
- the current blood tests can definitely identify a Lyme disease infection: they can not;
- doctors are capable of clinically diagnosing Lyme disease with any certainty.
It would be more correct to say that
- Lyme disease is an emerging disease in the UK and is on the rise, but the true number of cases is unknown;
- all current tests for Lyme disease have inherent limitations;
- problems arise when Lyme serology testing is used outside these limitations, eg. to exclude a diagnosis, in the face of a reasonable probability of Lyme disease, particularly when other possibilities have been ruled out.
- on-line forums and media stories may contain misleading information that superior testing is available privately, and influence patients into seeking such testing from overseas labs. As well as the cost and distress to patients, this is causing a problem for GPs and the NHS as a whole;
- UK doctors have insufficient experience of Lyme disease, and despite the new NICE guideline, people are still going untested and undiagnosed;
- Many late diagnosed patients do not recover fully, and the best treatment for these is not known and requires further research.
If the aim of the briefing was to inform journalists in order to stem the tide of media case reports of people diagnosed by the private overseas laboratories, there was no need to make the unfounded statement that most people who believe they have Lyme disease probably have “a CFS like syndrome”. This does not help journalists provide informed information to the public.
It would have been much more helpful to stick to the facts and to acknowledge the emerging disease status of Lyme disease, and the inherent difficulties in Lyme disease diagnosis.
- Cottle LE, Mekonnen E, Beadsworth MBJ, Miller a RO, Beeching NJ. Lyme disease in a British referral clinic. QJM. 2012 Feb 1;1–7.
- Devasahayam A, Lawn T, Murphy M, White PD. Alternative diagnoses to chronic fatigue syndrome in referrals to a specialist service: service evaluation survey. JRSM Short Rep. 2012 Jan;3(1):4.
- Dryden M, Saeed K, Ogborn S, Swales P. Lyme borreliosis in southern United Kingdom and a case for a new syndrome, chronic arthropod-borne neuropathy. Epidemiol Infect. 2014 May 9;1–12.
- Eikeland R, Mygland A, Herlofson K, Ljøstad U. European neuroborreliosis: quality of life 30 months after treatment. Acta Neurol Scand. 2011 Feb;1–6. (only 56% had complete recovery)