Dear Dr Gibson
I am responding to your Enquiry regarding ME/CFS on behalf of the charity
Lyme Disease Action. Our response is divided into the following parts:
(1) Why Lyme Disease Action feels it appropriate to make a brief submission
to the Enquiry.
Background to the formation of Lyme Disease Action.
(3) The potential for clinical confusion between Lyme Disease, also known
as Lyme Borreliosis, and other conditions.
(4) The potential for confusion in differential diagnosis of Lyme Disease.
(5) In Conclusion.
Why we are responding.
There is a potential for misdiagnosis to occur when considering Lyme
Borreliosis and other syndromes and this concerns us.
Many of the patients who contact Lyme Disease Action, do have Lyme disease,
or Lyme Borreliosis as it is also known, and this has
been confirmed in
their cases by blood tests, clinical histories, symptomatology or all three.
However, we are increasingly contacted by other people, who also have a
great range of the symptoms typical of Lyme Borreliosis and who clinically
fulfil or nearly fulfil the
description of Lyme, but whose blood gives
negative or equivocal results in laboratory blood tests.
For these patients diagnosis and early treatment of Lyme Borreliosis is
denied to them. A number of these patients currently receive a diagnosis of
one of the medically mysterious
syndromes that seem to be becoming so common
in the present day such as ‘Chronic Fatigue Syndrome’ but also other
syndrome diagnoses may be given. Some of these patients may also be
mistaken for cases of other defined neurological illnesses.
The charity Lyme Disease Action does not
profess to know the numbers of
patients involved in this potentially confusing situation, however it does
(2) Background to the formation of Lyme Disease Action.
A small number of these “Lyme-like patients” (who often had received the
diagnosis of a
syndrome), found, even as much as two decades or more ago,
that recovery or near recovery was possible upon taking antibiotic
treatment, i.e. treatment similar or identical to the treatment which would
be given for Lyme Borreliosis. Several of these people were able to return
Some of this group of patients were scientists and were able to form a
hypothesis about this. It has been known since the days of Syphilis being
widespread that the science surrounding the testing for spirochaetal
diseases is potentially difficult and unreliable.
This group reasoned that
if patients had, in fact, been misdiagnosed this might account for the
recoveries that medicine had not predicted. If it were to be the case that
Lyme blood tests had an unacceptable percentage of inaccuracy, and since
many people either do not notice tick
bites, or alternatively, in individual
cases, the illness enters into a latency period; then it seemed to this
group a not unreasonable hypothesis to suggest that an unknown number of the
‘mystery’ diagnoses being given out were misdiagnosed Lyme Borreliosis. The
being that they were caused by an organism so similar to
Borrelia burgdorferi (sensu lato), that clinically speaking it would make
Nothing in ensuing research findings has disproved the above hypothesis for
that particular fraction of our interest group who do
not currently receive
a straightforward Lyme Borreliosis diagnosis. However, we recognise that
these suggestions are only a hypothesis.
Several recovered patients came together through the internet and decided
that a charity was needed for victims of Lyme disease, other borrelioses
related tick-borne diseases in this country. Thus a charity was formed.
(3) The potential for clinical confusion.
The situation could be further complicated by known treatment difficulties.
Presuming all other exclusions to have been made, to make a diagnosis
Lyme or no Lyme upon a patient’s response to antibiotics alone is not
Many peer-reviewed papers are now in publication which indicate that at
least some of the Borrelia organisms can persist through what is deemed
adequate antibiotic treatment. As with
everything about Lyme, patients vary
hugely in clinical manifestations and responses. If inadequate symptom
resolution should occur and a patient is still symptomatic at the end of a
conventional course of treatment then it may not be correct to conclude Lyme
disease is not the
culprit. To the best of our present knowledge, it is in
the patient’s best interest to be given long-term, high-dose antibiotic
treatment until they are symptom-free and remain so. Therefore, there is an
extreme necessity for an accurate diagnosis as early as possible in the
disease. If the patient starts treatment early, the indications are that
the prognosis is a better one. Another potential complication would be the
occurrence of a Jarisch-Herxheimer reaction, which will occur in a
percentage of patients and gives the paradoxical impression that the
has worsened. The status of this paradoxical reaction is that it is known
to occur during treatment but it does not indicate worsening as such but is
allied to bacterial death. It could be very unfortunate that this gives the
patient the impression that antibiotic treatment
(4) The potential for confusion in differential diagnosis.
We would advocate that greater consideration of borrelial spirochaetosis
should be given in the differential diagnosis of many of today’s mystery
syndromes, including the diagnosis of
Chronic Fatigue Syndrome. Many
submissions on this topic have been made before in previous public
consultation exercises but, for reasons unknown, Lyme-related hypotheses
have been more or less ignored. And indeed infection in general does not
appear to have figured highly. We feel
this is regrettable.
We enclose/attach a list of previous submissions to the Chief Medical
Officer and to the Medical Research Council about this topic. They are on
the public record as part of the recent Chief Medical Officer’s process
culminating in the Report of the Working
Group in 2002 and the MRC Strategy
publication in 2003.
We have misgivings about the assessment of risk of tick bite being included
in the differential diagnosis of Lyme Borreliosis. There is a programme of
surveillance upon the known carrier ticks in the outdoor
Figures derived from this surveillance indicate that the trend for these
ticks to be present, and for a percentage of them to be carrying the
pathogens, is rising year on year. The numbers of such ticks found would
possibly not account for the large numbers of patients
with the syndromes
that might come under the umbrella of your Enquiry. However, we are not
completely satisfied that an open-ended surveillance has picked up
absolutely every relevant aspect to assessing the degree of risk of tick
bite/or contracting Lyme in another way, in the UK.
Risk assessments may
not represent the true situation if unknown factors are in play. There is
therefore an unacceptable risk in including a physician’s estimate of how
likely the victim is to have had an infected tick bite in the differential
diagnosis of Lyme.
As stated herein, the charity Lyme Disease Action does not profess to know
the numbers of patients involved in this confusing situation which could so
easily lead to misdiagnosis. Even if it is only one patient who is thus
misdiagnosed, nevertheless their quality
of life is worth saving by
including careful consideration of the above possibilities within the
We suggest to you the possibility that a completely unknown number of
patients are misdiagnosed in the manner described above. We feel this is of
relevance to your Enquiry.
You may be interested to know that the charity has formed a research agenda
to tackle some of the questions that we feel need to be asked.
We should like to thank you for your interest in undertaking this onerous
and contentious task.
On behalf of
Lyme Disease Action
Charity No. 1100448