DR FALLON PRESENTING AT LYME DISEASE OPEN DAY HELD BY PHE, LONDON

Thursday 26 March 2015

DR FALLON PRESENTING AT LYME DISEASE OPEN DAY HELD BY PHE, LONDON

Dr Brian Fallon Keynote speaker at Lyme Disease Open Day held by Public Health England on 25th March 2015

Quite a historic occasion for Public Health England to invite such a well respected doctor and researcher to present on - A review of recent evidence on long term consequences of Lyme disease.

Dr Fallon is director of Lyme and Tick-Borne Diseases Research Centre, Columbia University USA.
http://www.columbia-lyme.org/

I understand that the slides will be made available either on PHE website or Lyme disease Action Website http://www.lymediseaseaction.org.uk/

however for anyone interested some of the slides were also presented at Poughkeepsie in 2014
https://www.youtube.com/watch?v=DEwVEN2kT_A

Dr Fallon talked about the emerging science, mentioning that there were several promising tests in the pipeline and encouraged patients and charity groups to continue with advocacy and pressure on authorities to invest in research and awareness.

The meeting was Chaired by Dr Jenny Harries, Regional Director, South of England PHE who did an excellent job of keeping the presentations running to time and involving the audience in the questions and answers at the end. Dr Harries said she was aware of the short notice of the meeting but wanted to hold the meeting and there were (timing) problems with the pending election

The Welcome and Introduction was given by the Countess of Mar who once again showed her depth of understanding of the problems over testing, complexities of the disease and the suffering of patients who go on to seek private treatment - she said 'Patients seek alternative treatments - some may provide results. Very few fellow citizens can afford private treatment, instead of sniping at private providers, we need to find out what they are offering and learn.' She said she 'understands the awfulness patients feel when they are unable to get treatment but we need to work together'

Dr Tim Brooks Clinical services director RIPL gave an overview of PHE Activities.
Plans to raise awareness of Lyme at the beginning of the Lyme season.
Despite misconceptions we have open minds about infectious diseases.
Without evidence we can not make policy or do studies.

Dr Roger Evans Consultant Clinical Scientist, Raigmore Hospital, Inverness - The Scottish view on Lyme Disease
'We are frustrated because we recognise there is a lot of work needs to be done'
He is currently working with GP's in Scotland to gain a better understanding of the true numbers involved not just the serologically positive cases, so that economic costs can be assessed with the hope that this will in turn attract better funding for research. Dr Evans recently conducted a study of Blood Donors in Scotland 2010-2011 4.1% were positive for Borrelia Burgdorferi - Munro et al (2015) Transfusion Medicine (in press). http://onlinelibrary.wiley.com/doi/10.1111/tme.12197/abstract

Dr Jolyon Medlock Head of Medical Entomology & Zoonoses Ecology, PHE and colleague talked about tick collection scheme and mapping of areas found in UK. Feeding back information to the public as discussed in an ongoing scheme with Wiltshire Council but hope to extend to other areas.

Dr Randi Eikeland , Head of the National Advisory Unit for Tick - borne Diseases at Sorlandet Hospital, Norway, discussed Neuroborreliosis - Challenges and experiences from Norway. Her work seemed to revolved only around acute seropositive cases and relied heavily on spinal taps with a significant number of patients having symptoms months later but unable to find evidence of a persisting infection.

Dr Sue Best Director of the National Serology Reference Laboratory Australia - A program for a comprehensive review of potential diagnostic tests for Lyme Disease.
Dr Best although she said she was very experienced in working with HIV was clearly new to Lyme Disease and I suspect took away more information than she contributed to the meeting. If she gains funding for her studies only time will tell whether they will be useful, especially in view of the search for better, more precise testing looking for active infection and the report of several promising new tests as indicated by Dr Fallon.

Stella Huyshe - Shires, Chair of Lyme Disease Action - Working together?

Demetrios Loukas a patient who had initiated and organised the parliamentary meeting in January spoke - he thanked Dr Brooks for attending the Parliamentary meeting and for agreeing to have a meeting with Dr Armin Schwarzbach and Dr Chris Newton to discuss testing methods.

There was a questions and answer session which I understand was due to be documented and be made available.

As any links to slides and questions and answers become available I will add to this post.

For a couple of photos of the event see Lyme Disease Action Facebook page
https://www.facebook.com/122058224483868/photos/pcb.897931963563153/897929623563387/?type=1&theater
and
https://www.facebook.com/122058224483868/photos/pcb.897931963563153/897930723563277/?type=1&theater

PHE have provided copies of presentations at Lyme Disease Action website
http://www.lymediseaseaction.org.uk/latest-news/phe-open-day-march-25th/

Demetrios Loukas speech http://lookingatlyme.blogspot.co.uk/2015/04/a-patient-voice-at-phe-meeting-on-lyme.html

1 comment:

jacquib30 January 2022 at 09:52
Thank for this info but so tired of the attitude of UK doctors in denying this illness. 34yrs of it
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Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.

ME/CFS, Fibromyalgia, Poly Myalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

UPDATE

UPDATE 10 January 2012