Lyme Borreliosis patients petition Downing Street

LDA Response

The case for serious consideration of the Portfolio of case histories from people with Lyme and/or Borreliosis presented to Dr. John Reid in Downing Street on 4th November 2004 by Wendy Fox and friends will be aided, we hope, by the following letter, sent to Dr. John Reid.

From ‘Lyme Disease Action’
Registered Charity No. 1100448
1st November 2004

Dear Dr Reid,

Re: Delegation of Lyme Borreliosis patients to petition Downing Street at 2pm
on 4th November 2004.

Recent White Papers on public health have
highlighted the possibility of
little known infections entering the UK and how the UK must have an effective
surveillance policy against such an eventuality. However, bugs are endlessly
clever and adaptable and one must never drop one’s guard. So, we still wonder
if current
procedures have failed so far in the detection of many cases of
Borreliosis?

Quite a number of people in the delegation to visit you on Thursday 4th
November do have evidence of positive Lyme serology. Others with symptoms
virtually identical to the established
Lyme/Borreliosis patients have been
assigned a diagnosis of ‘Chronic Fatigue Syndrome’ or similar.

We are aware that the Government has attempted to tackle the burgeoning
epidemic of ‘Chronic Fatigue Syndrome’, most recently with the publication and
current implementation of
the Chief Medical Officer’s Working Group Report on
CFS/M.E. in January 2002. Whilst patients are grateful for this, in our view
some aspects are still far from satisfactory. We feel it is regrettable that
(a) the suggestion that Lyme and closely related Borreliosis(es) could be the

main culprit and (b) the suggestion that early treatment is the key to
recovery in most cases, lodged with the CMO during the public consultation
process appear to have been passed over by the Medical Research Council.

On a personal note:
The reason I personally would also
question the vigilance of the current
system is that I myself became a victim of one of these clever infections in
1985. At that time I became very sick and could not be diagnosed.
Fortunately for myself, I am a trained microbiologist and instinctively
wondered whether my severe
case of ‘ME’ or ‘CFS’ or ‘CFS/ME’ was potentially
treatable with antibiotics, in spite of negative serology for Lyme
Borreliosis. Therefore I was treated with a very, very long and strong course
of antibiotics in early 1986 and recovered from my illness by about 1988. A
very long
recovery process I think you’ll agree. The success of this relied
crucially on taking the treatment early in the disease and on persisting with
it for a very long time.

However, this letter is not about myself, I can only tell my story, on behalf
of the patients who contact us,
in the hope that you will see the seeds of
great injustice within it. The injustice that could be being done to innocent
people left with no help for a terrible illness.

We implore you to return to the questions posed by this situation and
re-examine the findings so far in the
light of what will be presented to you
on 4th November 2004.

Yours sincerely

Stephanie Woodcock
Chairperson
Lyme Disease Action
Registered Charity No. 1100448