Stella Huyshe-Shires
Chair, Lyme Disease Action
The large number of people with long COVID, many of them health professionals, has facilitated recognition of this complex condition. Just one year on there are NICE guidelines, SNOMED codes, specialist clinics and a research agenda.
Those with long-standing, persistent symptoms from Lyme disease look on with interest. Currently dismissed from follow up and with many studies purporting to show they are no worse off than the normal population, this growing cohort is largely ignored – just as was reported to be happening to the bulk of early long COVID sufferers.
But attitudes are changing for long COVID, will they now improve for Lyme disease?
The documented burden
Treated early in Lyme disease infection, the vast majority of people recover completely. However, particularly when diagnosed late, a significant proportion, ranging from 10-50%, have residual, multi-system symptoms fluctuating over time. These can last for months or years and impose a significant cost on states, healthcare systems and families.
A recent nationwide Danish study (Obel et al 2018) found that compared with the normal population, the group of people who had Lyme neuroborreliosis:
- Made higher use of outpatient services for several years;
- Had a decreased income and employment rate;
- Had an increased receipt of disability pensions;
- Had an increased risk of haematological and non-melanoma skin cancers.
What symptoms & signs persist?
Ask the patients! We need to acknowledge that relapsing-remitting symptoms, some dismissed as “subjective”, are real and can be disabling. Recorded outcomes vary from study to study with no core outcome set enabling consistent recording in clinical studies.
No-one knows the cause of these persisting symptoms following treatment for Lyme disease, sometimes referred to as post treatment Lyme disease (PTLD), or even post treatment Lyme disease syndrome (PTLDS). Some may be due to persisting disease as there are many reported cases where an additional course of treatment has resulted in an apparent cure. In some people there may be residual tissue damage which can take months to resolve. There is also the possibility of a treatable auto-immune reaction.
We will not know until we look; currently we are not looking, we are dismissing.
Biomarkers may illuminate
The complexity of Lyme disease is poorly understood and it is possible that long COVID research may forge a path. Identifying relevant biomarkers may shed light on disease processes such as immune dysfunction but this requires specialist clinics, biobanks and long-term follow-up. Above all, there needs to be an acknowledgement of the true nature of the problem, not just a continued, inadequate response to a condition often dismissed as merely a “syndrome”.
This takes a shift in thinking and a commitment, and this is where the large number of long COVID sufferers has forced national authorities to listen and act.
What actions are needed now?
In Europe and the USA there are several national guidelines and they all acknowledge the lack of high-quality studies on which to base treatment decisions. Fundamental to improving the quality of the evidence base is development of a Core Outcome Set for use in research. In parallel with this we need specialist multi-disciplinary clinics with long-term follow-up and the creation of biobanks for samples. All these should be designed with the involvement of clinical methodologists and patients or the expense and effort may be wasted.
Above all, what we need is an acknowledgement that persisting symptoms in Lyme disease, as with COVID-19, are worthy of attention. There is now the opportunity to begin addressing the needs of patients struggling to recover from Lyme disease, but who have so far been neglected.