Incidence of Lyme disease in the United Kingdom and association with fatigue: A population-based, historical cohort study, 2022, Brellier, Nacul et al

Abstract

Background
Estimations of Lyme disease incidence rates in the United Kingdom vary. There is evidence that this disease is associated with fatigue in its early stage but reports are contradictory as far as long-term fatigue is concerned.

Methods and findings
A population-based historical cohort study was conducted on patients treated in general practices contributing to IQVIA Medical Research Data: 2,130 patients with a first diagnosis of Lyme disease between 2000 and 2018 and 8,510 randomly-sampled patients matched by age, sex, and general practice, followed-up for a median time of 3 years and 8 months. Main outcome measure was time to consultation for (1) any fatigue-related symptoms or diagnosis; or (2) myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Adjusted hazard ratios (HRs) were estimated from Cox models. Average incidence rate for Lyme disease across the UK was 5.18 per 100,000 person-years, increasing from 2.55 in 2000 to 9.33 in 2018. In total, 929 events of any types of fatigue were observed, leading to an incidence rate of 307.90 per 10,000 person-years in the Lyme cohort (282 events) and 165.60 in the comparator cohort (647 events). Effect of Lyme disease on any subsequent fatigue varied by index season: adjusted HRs were the highest in autumn and winter with 3.14 (95%CI: 1.92–5.13) and 2.23 (1.21–4.11), respectively. For ME/CFS, 17 events were observed in total. Incidence rates were 11.76 per 10,000 person-years in Lyme patients (12 events) and 1.20 in comparators (5 events), corresponding to an adjusted HR of 16.95 (5.17–55.60). Effects were attenuated 6 months after diagnosis but still clearly visible.

Conclusions
UK primary care records provided strong evidence that Lyme disease was associated with subsequent fatigue and ME/CFS. Albeit weaker on the long-term, these effects persisted beyond 6 months, suggesting patients and healthcare providers should remain alert to fatigue symptoms months to years following Lyme disease diagnosis.

Open access, https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0265765

 

Interesting study. Here's how I understand it.

The authors - which include Lacerda, Nacul and Mudie from the ME/CFS biobank team - used a database with data from 6% of UK primary care patients.

There were more than 2000 persons diagnosed with Lyme disease between 2000 and 2018 and having 6 months of follow-up data. They were able to match with persons in the database who didn't get Lyme disease and were similar in other respects (including the GP they had).

People who had Lyme disease were approximately 2 times more likely to have been diagnosed with fatigue-related symptoms and approximately 10 times more likely to have been diagnosed with ME/CFS.

The main issue I see, is the reliability of those codes in the database. For ME/CFS the number of patients eventually diagnosed was also only 17. This makes it difficult to make strong conclusions but the difference suggested is very big.

Because they matched their controls for GP, underdiagnosis seems less of a problem because it wouldn't explain the difference between the groups who went to see the same GP.

 

Poop.

 

Surely the assumption is that anyone who definitely had Lyme, and who has disabling fatigue (post Lyme but not before), is suffering from post Lyme fatigue not ME/CFS? Is this publication suggesting that you are more likely to get ME/CFS after Lyme?

Tangential - as often! Wonder if they ever did a big GWAS study in Lyme? Seems like the way to go and they've spent way more (EU alone spent 5 million euros +) on a failed attempt at a diagnostic test for Lyme. A large GWAS study seems to be something the Lyme community should lobby for - I'm not entirely thinking of us --- but it would have benefits!

 

They cannot prove this. It's assumed.

And why boil down the large cluster of symptoms which can characterize Lyme to, um, fatigue?

Then seemingly extrapolate from that and suggest that single symptom might qualify a patient for an ME/CFS diagnosis?

This to me smacks of medical economics: two trivializations for the price of one.

 

If people who have had Covid-19, H1N1 (swine flu), EBV, giardia, etc. can be given a diagnosis of ME/CFS, not sure why having had Lyme should be an exclusion for a diagnosis of ME/CFS.

 

Agreed. If ME/CFS is derived from some sort of aberrant immune response, why couldn't Lyme cause such a response?

 

The two are not necessarily alternatives, just different ways of categorising illness.
Atherosclerosis and myocardial infarction can apply to the same person - they nearly always do.

 

It seems to me Lyme could cause the immune dysfunction some speculate as causative of ME/CFS. And you could have ME/CFS and then acquire Lyme - or visa versa and have them not at all be related. It's a small world.

 

Then why not call it ME/CFS (triggered by Lyme)?

 

Part of my issue is I don’t think all of them don’t have a condition due to or triggered by Lyme. As one person on this forum alluded to, De Meirleir rediagnosed something like 80% of his ME/CFS patients with Lyme. I don’t believe it’s likely Lyme is the initial infection in such a high percentage of ME/CFS cases in many countries (it might be different in say northern eastern US). Like a lot in the medical profession, I’m sceptical about the accuracy of the testing in some of the private labs.

As another person commented here or on PR, if such a high percentage of ME/CFS cases were due to Lyme and similar, one would see large variations in ME/CFS around the world and within countries.

 

In my own ME/CFS group there have been instances where people with chronic Lyme tried to convince group members that it is not ME/CFS they have but Lyme and should go to this and this doctor who will give them the correct diagnosis (because the standard test is wrong). Several covid long haulers new to the whole thing have done the standard test (most of them didn't really know what Lyme is or how it works, they just tried everything they heard about, they also tested themselves for EBV etc). The test was negative and most didn't bother to investigate further but some went to that doctor and came back with a positive diagnosis and now see it as a fact that what they have is chronic Lyme triggered by covid.

 

I agree. If that turns out to be the case. There are so many outstanding unanswered questions and so much white noise generated be pure speculation and nothing more.

 

But not about public tests, ie, NHS/CDC/etc. tests?

You do. Large variations in Lyme, too, as well as other tick-borne diseases like babesia.