https://publichealthmatters.blog.gov.uk/2013/10/15/conference-wrap-up-lyme-disease/

Conference wrap-up: Lyme disease

For those who haven't heard of it, Lyme disease is a bacterial infection transmitted by tick bites, with between 900 and 1000 confirmed cases each year in the UK. It can lead to serious health issues if left untreated, so raising awareness of this potentially harmful illness (and how to avoid it) with GPs and other health professionals, as well as members of the public, has been very important to us at PHE’s Rare and Imported Pathogens Laboratory (RIPL).

This year, for the first time, we hosted the PHE Lyme Conference in London, with the Countess of Mar giving her support to the conference in her welcoming address and closing remarks. The conference featured speakers such as Dr Matthew Dryden, a consultant microbiologist at Winchester's Royal Hampshire County Hospital (who worked with PHE to set up the UK’s first Lyme clinic in September), as well as representatives from Lyme disease support groups.

The event provided us, our health profession colleagues and many others with an interest in Lyme with the opportunity to listen to and engage with the many different people involved in the wide spectrum of Lyme disease detection and treatment, from members of the public, to GPs and clinicians and Lyme disease support groups.

At RIPL, we provide reference diagnostic services for a variety of pathogens (organisms that can cause illness in people) and provide clinical advice through our helpline for health professionals. We also continue to actively develop our testing procedures and methodologies further, as we strive to maintain the evidence base needed to be able to provide sound advice, and ultimately, to influence people’s health for the better.

In doing so, however, we put tremendous value on being able to draw on all the different elements brought together in combating such a potentially debilitating illness through engagement efforts such as the conference. The event, and even the preparation prior to the event taking place, has already proved invaluable in our attempts to assess the different requirements, needs, gaps in services and concerns people may have regarding the detection  and treatment of Lyme.

We had the opportunity to listen to talks given by leaders in their respective fields, from tick ecologists to respected microbiologists, and we gained invaluable insights as to the latest developments regarding Lyme disease, all vital in ensuring the services we provide continue to be the best they can possibly be. It is in continuing to work together, drawing on all our various strengths as individuals, organisations and other public bodies, that we will find the best possible outcomes for those affected by Lyme disease.

We would like to thank everyone who spoke at the event and chaired the sessions, and we are grateful to those who took the time and effort to attend. Unfortunately this time we could not accommodate everyone who expressed an interest and we would encourage them to continue to engage with us. Whilst Lyme disease is one of many illnesses afflicting people that we investigate, we remain committed to ensuring we continue to provide evidence-based services and guidance in matters of public health.

18 comments

  1. R J HUXTABLE

    Looking at data from other countries, where Lyme disease is recorded, it is improbable that there will be less than 50,000 cases a year in the UK.

    Link to this comment Reply
  2. Lyme Disease UK

    Our support group submitted a list of questions to Dr. Tim Brooks before the conference which the Countess of Mar mentioned in her opening address. In the spirit of wishing to engage with patients, we would really appreciate it if these questions could be answered in writing in the near future and made publicly available or sent to our group email address. Many thanks.

    Link to this comment Reply
    • Christine McCartney

      I can confirm we’re working on answers to your questions and will email them to you in the near future.

      Link to this comment Reply
  3. Tick Talk Ireland

    Although Ireland wasn't represented (talks were from England, Scotland & Wales) we at Tick Talk Ireland are following developments with keen interest. Irish patients are often tested through the UK system & therefore any policies undertaken in the UK affect Irish patients. I was encouraged by the dialogue & hope that the pilot clinic becomes a success & funding isn't withdrawn too soon. I hope that focus continues to remain on improving testing & various studies on strains & co-infections as well as the cause of persisting symptoms develop further. I think it's a positive start & hope dialogue continues in the right direction...

    Link to this comment Reply
  4. Joanne Drayson

    Thank you PHE for this interesting meeting, the first of many, I hope. Patients have asked for this discourse for many years and been ignored, now we need to move on and look at all the research, rather than the cherry picked science that has constricted guidance over past years.
    The science has not stood still but Guidance based on the Infectious Diseases Society of America has and in fact become more restrictive and without adequate evidence to base that guidance on.
    Charity Lyme Disease Action has built a valuable resource on their website of help to clinicians and patients.
    In the absence of tests with 100% sensitivity and therefore the question mark over diagnosis plus the many uncertainties in treating this disease documented by The James Lind Alliance it is clear that much work needs to be done.
    When researchers for NIH who have worked with this organism for 25 years describe Lyme Disease as a relapsing Borrelia ( Ben Luft) and that in 100% of animals it persists and has mechanisms to persist despite antibiotics and a competent immune system (Stephen Barthold) then we clearly have a problem.
    As with many diseases empirical treatment may be all some doctors/patients have at hand for now.
    The controversies over treatment have been ongoing for over 30 years but no efforts have been made to actually engage with doctors who specialize in treating patients with Chronic Lyme Disease, instead they are dismissed out of hand and persecuted. Any doctor who claims to have treated 1000's of patients with Chronic Lyme Disease may actually have something to contribute other than 'snake oil'.
    There are several papers where Borrelia has been found in the brains of animals, Judith Miklossy has identified DNA for Borrelia in brains of patients who died of Alzheimer's, she was not the first to find this and thus there should be no doubt of the ability of Lyme Disease to cause a Chronic disease in some patients.

    Link to this comment Reply
    • Joanne Drayson

      I am not sure if links to websites will be allowed but these are the ones I refer to in my comment above
      http://www.lymediseaseaction.org.uk/ information about the James Lind Alliance review of the research finding many uncertainties can be found through their website.
      http://www.tvworldwide.com/events/iom/101011/default.cfm?id=12856&type=flv&test=0&live=0
      Ben Luft during questions and Answers session
      'But the nature of Lyme disease is it's a relapsing disease.
      That's the very nature of you getting infected, erythema migrans, having dissemination, separated by time, the disease comes back and it can give you cardiac abnormalities or abnormalities in your joint, that's a relapse
      That's a relapsing process.
      The period of time is well-being with disease relapses, and that can occur in a cyclical manner.
      You can have multiple episodes of relapse, and this can go on for years.
      That's the natural history of the disease.
      The natural history of disease is it's a relapsing disease.
      It's also very interesting that even though you may have this disease, you can be reinfected with another -- with Lyme disease again, even though you've been previously infected.
      I just wanted to clarify that.'

      At Global Challenges in Diagnosing and Managing Lyme Disease—Closing Knowledge Gaps
      Subcommittee on Africa, Global Health, and Human Rights
      Chaired by Christopher H. Smith (R-NJ) http://www.ustream.tv/recorded/24058724
      Stephen Barthold another NIH researcher of 25 years with this organism says -

      'dormant, non-dividing bacteria are tolerant of antibiotics. During persistent infection there is a 10-fold reduction in number of bacteria but they are not dividing, so antibiotics can't hurt them.
      100% of animals remain infected after antibiotics--- described as debris but it is often metabolically viable organisms.
      12 months after treatment we see widescale prevalence of spirochetes but it remains to be determined the role of this persistence --not everyone is showing symptoms.
      Biofilms - universal mechanism for bacteria, virus and fungus throughout the world for microbial communities. Borrelia - persistent infection --- reduction in host/animal ( with antibiotics?)- go dormant (not necessarily in bio film) - antibiotics can't touch.
      If you just enlarge the pot of funding, and you award the money to the same old school club of people who feed off Lyme disease, we won't get anywhere. If NIH is willing, they should put out a call for applications [for research] that is more focussed on biology.'
      Prof Judith Miklossy website http://miklossy.ch/
      Alzheimer's disease - a neurospirochetosis. Analysis of the evidence following Koch's and Hill's criteria.
      http://www.ncbi.nlm.nih.gov/pubmed/21816039

      Link to this comment Reply
    • Jacqui Butterworth

      Very good paper Joanne-thank you,
      Jacqui

      Link to this comment Reply
  5. L J Mathews

    It's a shame that doctors who have successfully treated Lyme disease and it's co-infections and who seem to be ignored by PHE were not invited to this event. They have considerable expertise which should be harnessed.

    Link to this comment Reply
  6. Tony Bent

    I was at the conference and was generally pleased with the event although there were lots of contradictions in the presentations that were given. Alastair Miller's presentation was out dated and blatantly ignored the scientific evidence of chronic Lyme Disease existing as a persistent infection.
    Throughout the whole day there was no mention of cyst & L-form borrelia and biofilms which has been proven to exist in countless scientific studies.
    It is obvious that too many people in the PHE organisation still have this polarised view when it comes to the science - the result is nothing but inhumane suffering at an ever increasing scale.

    Link to this comment Reply
  7. Majestic Heron

    The event was a complete farce. The RIPL, which is Britain's biowarfare testing facility at Porton Down, has no intention of deviating one millimetre from the denial of chronic Lyme which has been maintained for decades. The tests are not only "not 100%" sensitive, according to the International Lyme and Associate Diseases Society (www.ilads.org), they stand to miss more than half of cases. One commenter mentioned the list of questions posed by the Lyme patients' movement. I expect these questions will either remain unanswered, or be answered with waffle, much as Dr Dryden has done before.

    It's all very well to talk of "engagement" on your website. Dr Brooks, head of Lyme diagnosis in the UK, has revealed RIPL's real view in his report to the HSE - he considers the thousands of chronic Lyme patients who have been left to rot without diagnosis and/or treatment as a "disaffected group" who should be referred en masse to psychiatrist Simon Wessely. Someone who holds patients in contempt like that should not even be working in the Health Service at all. The first-line Elisa test is highly insensitive, having missed 62% of chronic Lyme patients (or "post-Lyme syndrome", as Lyme Denialists prefer to call us). That statistic comes from Dr Steere himself. The immunoblot does not contain a single antigen from Borrelia garinii, even though studies have shown it is widespread in British ticks and is associated with neurological Lyme, which is what most patients in the UK complain of.

    Raising awareness? PHE remain committed to convincing Britain's doctors that Lyme is rare (hence RIPL's name -"Rare and Imported Pathogens Lab"), despite the fact that with similar ecology to Holland, which admits to over 100 per 100 000 cases per year of erythema migrans alone (never mind all the other manifestations of Lyme), while our rate does not even reach 2 per 100 000. It is a travesty of healthcare which has condemned countless adults and children to permanent disability and many suicides, and at its root is PHE's decision to follow the policy of their colleagues in US biowarfare science, for whom borrelia infection is a militarily sensitive issue - hence the cover-up.

    Link to this comment Reply
  8. Shirley Fawcett

    I was unable to attend the event myself due to illness, but having heard quite a lot about it and the impressive-sounding promises made from the people who were there, I was then really quite shocked to discover by chance that Dr O'Connell, the former head of the Southampton Lyme reference lab and arch-chronic Lyme denialist, was booked to address a medical conference on the subject of 'Lyme in the UK', just two days AFTER the Coin Street meeting. Evidently with the knowledge and approval of Dr Brooks, too, since he was also a speaker on a different subject at the same conference. Clearly this flies completely in the face of any promises of changes in policy, and I think every Lyme patient in the UK is more than entitled to ask what on earth is going on and what the point of the Coin Street meeting was? I shall be happy to be put right if I have somehow misunderstood the course of events or their significance in terms of policy, but as I also see from the response to a recent parliamentary question that no budget at all has been allocated by the Dept of Health for Lyme research in the next couple of years, my hopes are not high.

    Link to this comment Reply
    • Christine McCartney

      The British Society for Rheumatology and the British Infection Association invited Dr Brooks to speak at this conference on the topic of tropical diseases. His appearance was unrelated to Lyme. This coincidence shouldn't be considered to indicate anything about PHE's position on Lyme, which is as we presented it at our conference.

      Link to this comment Reply
      • Rodney Basford

        So it was a coincidence that Dr Brooks was invited by the BSR and BIA to speak, and his appearance was unrelated to Lyme disease. But what about the infamous Dr Susan O'Connell, responsible for Lyme testing at Southampton before it was moved to RIPL at Porton? Was her appearance a coincidence and unrelated to Lyme? If she did speak on Lyme disease did she maintaining her discredited past regime or the new PHE position, after all the situation has changed for the better - hasn't it? And if she was speaking about Lyme why wasn't she invited to talk in the same terms about Lyme at the PHE conference on 9/10? If she was invited to address the PHE conference what reason did she give to decline the invitation? For instance has she been unable to accept that change under HPE is inevitable and unstoppable?

        Link to this comment Reply
        • Christine McCartney

          PHE had no involvement in who BSR and BIA invited to speak about Lyme at their conference. Dr O’Connell isn’t associated with RIPL or PHE’s Lyme programme – as I said, Dr Brooks’ appearance at the same conference was coincidental.

          Link to this comment Reply
      • Shirley Fawcett

        Thank you for your reply, Dr McCartney.
        I am glad to learn that the appearance of both Dr Brooks and Dr O'Connell at the BSR/BIA conference just after the Coin Street day was a coincidence, but I do still feel, like Rodney Basford who has also made some good points here about this question, that some aspects of Dr O'Connell's current role need clarifying.
        My question therefore is: is Dr O'Connell still speaking on occasions like that one in the capacity of the UK expert on Lyme disease? Because if she is still training our doctors in the views which she disseminated while she was head of the Southampton lab, then I cannot see how that is consistent with any change in PHE's stance on Lyme.
        I would also like to know how PHE is to fulfil its commitment to conduct research into Lyme when no funds whatsoever have been granted for that purpose by the Department of Health?

        Link to this comment Reply
  9. Sarah

    I thought about going to the clinic and even emailed Dr Dryden and had a lovely response. However, to put my daughter through more investigations when the machine is not working as far as I'm aware and more tests may not be appropriate... as she is getting on fine without the NHS and the NHS have not helped her one bit get better! We have forked out a fortune and had help from a charity to get her better.... I am sorry but I have lost my faith in the NHS... I hope it goes well but I think there are too many unknowns and lack of knowledge for this clinic to help my daughter. They may find out some info from us what we've been through and if they were interested I would gladly share our story some more... but we are talking about a child who has seen many 'ologists that said to her it's all in her head, it's because she's autistic, it's growing pains, she's making it up etc etc... Can I risk putting her through all of this again when she's done so well with private treatment.... whether is be lyme, bart or whatever they wont know and we'll we in the same position we are now... I have lost my faith and trust in the NHS... we never searched for antibiotics what mother would give her daughter something that a GP would not... Her cat scratch marks come and go, her ASD symptoms also come and go... so something is treatable... and I hope one way true independent science will help my daughter overcome her issues.. but that day in my opinion is not now and as an adult soon she will have her own choices and paths to determine her future. A simple Vit D test and iron test would have helped us in the interim... they can't even get that right... her paediatrician consultant!!!! said that for the Vit D to work she needed to go out in the sun, and with a result of 20nmol.... that's rubbish! So I rest my case with the PHE and anyone else, we know we're on our own and we've seen too many insultants to be assured otherwise! I don't trust anyone in the NHS anymore we've been scarred and made to feel fools... For example... Bartonella presents as a fever (stupid mother)... those marks are stretch marks... OK I run off to my little corner thinking well how come those stretch marks come and go like a London BUS! There is no joined up thinking and there is them looking down on us like we are stupid... So I am stupid, my daughter has growing pains and autism... there is nothing that can be done... so I retire to my box and I say to you and anyone reading this.... think outside the box for yourself because the NHS is in the box and it's taped up big time....

    Link to this comment Reply
  10. Mike & Gillian Davis

    Our son has late diagnosed Lyme, has been through the "ologist" mill and gets his treatment from a Lyme sympathetic GP and a German clinic. My question to Christine McCartney, reference the last sentence of her Conference wrap-up, is what are you in particular and the NHS in general actually doing to obtain the evidence to enable you to provide evidence-based services and guidance for Lyme?

    Link to this comment Reply
  11. Valentine

    I have been bitten by ticks (red rash around 2 bites), work outside for job, diagnosed with fibromyalgia (which is worsening) and I have had a recent negative ELISA test. If I have Lyme's, I was infected a few years ago. My GP surgery only tests for Lyme and none of the co-infections. I have asked to be referred to see Dy Dryden, who kindly said he would see me once my GP sends a referral, My GP and local NHS authority deem it unnecessary because I have had a negative ELISA. The clinic says they will see someone with a negative ELISA if there is a strong possibility of Lyme based on their clinical symptoms, which I have. Whilst it is possible I don't have Lyme, isn't it better to run more accurate tests and check for co-infections? I am a 31 year old woman who is pretty much bed bound. I was told today by my physiotherapist that I have to prepare myself that I might not be able to work full time again after working 11 years towards my career in science. It appears that the clinic is not accessible to people in my situation. I feel my life is completely ruined and I was so excited when I heard about the new clinic as I thought it could identify a tick-borne disease if I am infected.

    Link to this comment Reply

Leave a comment