HPA conference - letter to MP

[Guest guest]

Dear All,

PERMISSION TO REPORT

I have written to my own MP and to Dr Ian Gibson MP about the

behaviour of the HPA in relation to Lyme disease.

Dr Ian Gibson is currently chairing an enquiry into the lack of

biomedical research into ME/CFS.

Many of you will have had a previous diagnosis of ME/CFS before

finding out that you have borreliosis. If this is the case then I

urge you to write or e-mail Dr Ian Gibson (gibsoni@...) and

your own MPs.

As Prof Sam Donta made clear at the LDA conference the next step we

need to take is to engage the politicians. In my humble opinion they

are the ones with the power to help us make change......

---------------

Dear Dr Gibson MP,

It has been brought to my attention that the HPA (Health Protection

Agency) organised a Lyme Disease Symposium in Southampton last

Thursday the 29th of June 2006. The symposium was not advertised

publicly. It was advertised on an internal HPA website address. The

only Lyme Disease Advocacy group in the UK (Lyme Disease Action -

LDA) was not invited to attend. Neither were any ME groups even

though ME/CFS was on the agenda. The Lyme and ME advocacy community

literally found out about it by accident.

http://www.hpa-events.org.uk/hpa/frontend/frontEndFrameset1.csp?

eventID=11

*Lyme Borreliosis Symposium*

29 June 2006 - Hilton Hotel, Chilworth, Southampton

*A one-day symposium organised by Health Protection Agency South East*

Lyme borreliosis is increasingly recognised in the UK. People acquire

this tick-transmitted infection at home and abroad, mainly during

outdoor recreational activities. Clinicians working in many areas of

medicine, especially general practice, infectious diseases and

neurology, may be involved with case management. This symposium will

focus on aspects of case recognition, investigation and clinical

management, including diagnostic and treatment guidelines. Internet

information sources will be reviewed. The evidence for a relationship

of

Lyme borreliosis and other tick-borne diseases with conditions such as

ME/CFS will also be discussed. We hope that health care professionals

from a wide range of disciplines, including general practice,

infectious

diseases, microbiology and public health, will take part in this

highly

interactive day.

LDA invited Dr Sue O'Connell to attend their own Lyme Disease

Conference on Saturday 24th of June at Sheffield University.

http://www.lymediseaseaction.org.uk/conference.htm

She did not attend to listen to the other presenters, she asked not

to be videoed or recorded in any fashion, she did not answer any

questions and left immediately upon completing her talk. I

personally find this kind of behaviour bizarre from someone who is

responsible for the testing of Lyme disease / borreliosis for the

whole of England and Wales. It is my opinion that she has a very

narrow understanding of the illness and clearly does not accept that

Lyme disease and borreliosis is a significant health issue in the UK

today.

This is the summary of the HPA meeting in Southampton from a source

who wishes to remain anonymous. The reason for this will become

clear as you read.

---------------------------------------------

Lyme Borreliosis Symposium - 29th June 2006

There were 72 " participants " at the symposium last Thursday, most of

them doctors and scientists.

The speakers were: Dr Hawtin, regional microbiologist of the

HPA;

Professor Duerden, Inspector of Microbiology from the DoH;

Dr from the Zoonosis Unit in Cardiff;

Dr Sue O'Connell, Lyme Borreliosis Unit, HPA Southampton Laboratory,

Dr Nick Lawton, Consultant Neurologist;

Professor Eugene Shapiro (Yale);

Dr Begona Bovill, Consultant Infectious Diseases Unit, Bristol;

Professor Chiodini, Hospital for Tropical Diseases.

The first slide that was put up said there was to be " No reporting or

publication of the proceedings without express permission of the

organisers. "

So I guess I'm in breach of that instruction.

Apparently delegates who arrived after me had been handed leaflets

from an action group – this caused much consternation and indignation

amongst the speakers who felt it necessary to point out the

falsehoods in said leaflet.

Professor Duerden (DoH) warned against unlicensed labs and said one

needed evidence based diagnosis.

Dr stated that reporting to centre for Infectious Disease is

voluntary except for Scotland where LD is a notifiable illness. He

said LD is on the increase.

Dr O'Connell said that peripheral neuropathy can be associated with

Neuroborreliosis.

Dr Lawton was interesting and said that Neuroborreliosis can lead to

carditis and POTS but that if one found an untreated

Neuroborreliosis case and tested them between 5 and 27 years later

they would have no CNS involvement. He also made the point that

serological L.D. is NOT clinical L.D. so serology must be put into

context.

This was echoed by Shapiro who said that " Not having L.D. doesn't

mean you don't have a problem. "

He also said that L.D. is not really a problem.

Dr Begona Bovill said that most patients referred to her, in Bristol,

will be diagnosed by exclusion as having CFS. The criteria she put up

resembled the Oxford criteria. The others were mainly

Hyperventilation Syndrome!

She had only ever seen a few cases of L.D. and all got well with

Doxycycline.

I sat through the whole day and then made a point/asked a question at

the end as I was somewhat perplexed.

I had listened all day to these highly qualified scientists telling

equally highly intelligent (presumably)doctors that Lyme Disease is

not a problem in this country and that everyone makes a recovery even

if untreated. My question and observation was that I was astonished,

given that we had been told it was such a non-problem, that it had

been felt necessary to devote a whole day symposium to the subject. I

observed that with 300,000 sufferers of ME in the UK it might be more

useful to organise a symposium on that subject and that if the

Doctors were perplexed at why people with an ME diagnosis were so

keen to be labelled as having Lyme Disease, it might be because the

NHS was offering nothing to them but with L.D. they would at least

get some treatment. I asked would they be organising a symposium and

recommending the battery of tests for each ME patient which Dr Bovill

hinted that she gave to most L.D. referrals.

I was told by Professor Duerden that he was not in charge of that

subject! I will follow it up.

Prof. Chiodini thanked me afterwards for raising my concerns and

conceded the lack of adequate testing for ME patients.

------------------------------------

The comments end.

I am sure you will agree that this is a bizarre way for a public body

to act. It does not strike me as the actions of a body who are 100%

behind patients to get to the bottom of these types of illnesses. It

does not serve to belittle and play down the ever larger, growing

body of evidence that points to the link between 300,000 with ME/CFS

being infected with borreliosis. It is entirely at odds with the

peer reviewed literature on lyme disease / borreliosis. There are

two clear differing views about lyme disease. A summary can be found

here on the ilads website (International Lyme and Associated diseases

Society - www.ilads.org

http://www.ilads.org/insurance.html

Not to present both sides of the scientific argument to a room full

of GPs and other doctors is unethical, in my humble opinion. Surely

well trained, intelligent doctors and scientists should be able to

come to their own conclusions when presented with differing evidence?

I have copied my own MP to this e-mail and I will

be following this up with her in the future.

Yours sincerely,

Joan Crawford