Yesterday, Science Media Centre held a briefing for scientists and journalists to discuss the state of the evidence on the number of UK Lyme disease cases, and the controversy around the tests and diagnosis. The meeting was instigated following concerns around the accuracy of the study published back in July that found cases of Lyme disease in the UK may be much higher than previously estimated.
By now, it’s likely you’ll have seen the number of articles that began circulating the web late yesterday afternoon following this briefing. An expert in attendance spoke of how she believed that many people in the UK who think they have Lyme disease ‘probably do not’, and actually have Chronic Fatigue Syndrome.
Unfounded and potentially damaging comments made
The expert in question was Dr Sarah Logan, a lead consultant at the Hospital for Tropical Disease, University College London. She said that:
‘I think that most people who think they have got Lyme disease in the UK, probably don’t.
‘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.
‘Because there is increased awareness about it, they are testing for Lyme disease. Then they are going on to various different Lyme disease forums on the internet and being told, “well actually the UK tests are rubbish, but you need to send it off to Germany.” ‘
Dr Logan said that in these instances, by the time an NHS Lyme disease test comes back negative the seed has already been planted in the patient’s mind.
She claims this often causes them to seek another test from a Lyme disease clinic and fork out up to £600 for a consultation and test that has not been validated.
She also suggested that GPs are as reluctant to give the diagnosis of Chronic Fatigue Syndrome as patients are to accept it.
You can read more in one of the articles here.
Caudwell LymeCo’s response
We are disappointed by the comments made by Dr Logan, and concerned about the effect they may have on some of the progress that’s been made in raising awareness and understanding around Lyme disease.
Chronic Fatigue Syndrome is a condition which is diagnosed via a process of elimination, rather than proven through the results of a diagnostic test. It also has a large number of overlapping symptoms with Lyme disease. Therefore we believe that to claim this is what most Lyme patients are more likely to be suffering from – particularly without evidence – is wrong and unfounded.
Limitations to the current NHS Lyme disease tests have been acknowledged within the NICE Guideline, and by medical professionals, therefore we do not believe it’s right to say that UK patients who receive a negative test (and perhaps a positive from a different overseas lab) are more likely not to have the disease. The fact is that we don’t know for sure, because the results of tests here in the UK are not always accurate.
The Guideline, Quality Standard and RCGP Toolkit have helped to improve knowledge of Lyme in some cases, but there is still so much unknown about the disease, and there’s still a general lack of understanding. The unfounded statements and doubts made by Dr Logan yesterday do not help in assisting understanding, or help release the stigma attached to the disease, and those suffering from it.
We are concerned that the comments may compound issues that some Lyme patients already face in being taken seriously by their doctors when discussing the possibility of being infected with Lyme disease. Already, we’re being told of doctors who tell patients that they think it is just ‘a fad’.
Both conditions – Lyme and Chronic Fatigue Syndrome – have their own stigmas, and we don’t feel it’s right to suggest that some patients (and doctors) are focusing on the possibility of Lyme disease, purely in order to avoid a CFS diagnosis.
These comments prove the need for further testing
What we feel this furore DOES do, is further solidify the need for accurate testing here in the UK, on the NHS.
If we had a gold standard test which produced more irrefutable results than the current tests, then patients who received a negative result for an active infection – along with doctors and scientists – could be more confident that they’re not suffering from Lyme disease.
Until this this happens, claims such as those made by Dr Logan cannot be substantiated, or indeed fully refuted.
Caudwell LymeCo exists to fund research that improves diagnostic testing and treatment protocols on the NHS, in order to remove some of the doubt and unknown created by inaccurate testing, and compounded by lack of knowledge and experience with the disease.
With a potential research project on the horizon that aims to improve diagnosis for Lyme patients, we hope this is the beginning of an opportunity that helps remove doubt for both patients and doctors.
To donate to our research project, click on the button below.