LYME DISEASE PATIENT LED PARLIAMENTARY CONFERENCE UK JANUARY 2015

Sunday 28 December 2014

LYME DISEASE PATIENT LED PARLIAMENTARY CONFERENCE UK JANUARY 2015

POSTING UPDATE - A quick note to say that we are not meeting in Portcullis House after all - but going straight to the House of Commons.

Demetrios will write all the details later tonight - but briefly :
We go to entrance 8 (please see the map in the files of the group or download it from the Parliament web site))
which is known as the Cromwell Green Entrance; it's in St Margaret's Street.

We are being given a bigger room, Committee Room 14, for the whole of the meeting. It seats 170

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There is to be a patient led Parliamentary Conference in the UK in January 2015 - details below

Lyme Disease Forum: 19th January, 2015

PART 1 - Atlee Room, Portcullis House: 1:00 p.m. to 2:00 p.m.
• Welcome speech from Rt. Hon. Simon Hughes MP
• Words from Countess Marr
• Meet and greet Opportunities

PART 2 - Committee Room 15: 2:00 p.m. to 5:00 p.m.
Attended by:Ruth Parry, Scientific Policy Manager, Department of Health (Micro-biologist, Virologist)
Dr. Tim Brooks, Head of Rare and Imported Pathogens Laboratory, Public Health England,
Amanda Semper, Scientific Program Manager, Rare and Imported Pathogens Laboratory, Public Health England (TBC).

Presentations by:
1. Dr. Armin Schwarzbach and Chris Moore
2. Dr. Chris Newton and Dr. Beryl Beynon
3. Peter and Denise Kemp Longman
4. Dr. Mark Ashworth and Dr. Michael Wetzler
5. Demetrios Loukas
6. Q & A

Laptop and Projector will be provided in the Committee Room for presentations.
Final Q&A period will be for any discussion points that need raising following presentations.
People should leave questions for this final period rather than raising them while presentations are being given.

Regards, Michael Paul
Parliamentary Assistant
Rt Hon Simon Hughes MP
Minister of State for Justice and Civil Liberties
MP for Bermondsey and Old Southwark
House of Commons
London
SW1A 0AA

Those wishing to attend please email your name, email address and phone number contacts.To: demetrios_demetriou@yahoo.com

Please title your email: LYME DISEASE CONFERENCE Attending

Proof of identification will need to be brought`along and presented at Portcullis House.

Please arrive at Portcullis House at least 30 minutes before the conference is scheduled to start, ie by 12.30pm.

A petition is to be sent to

Jane Ellison MP, Professor Dame Sally Davies and The Rt Hon Jeremy Hunt:

'UK Lyme patients and concerned scientists and doctors have been preparing since May 2014 to meet with you: we hoped to inform you directly of our concerns about the dire state of diagnosis and treatment of Lyme Borreliosis and tick-borne diseases in Britain.'

and

'We cannot emphasise enough how much we need to talk with you and to explain directly what our concerns are. A panel of experts from Public Health England has been proposed to hear our presentations on your behalf. Unfortunately, those same panel members have already heard similar presentations from our fellow patients and colleagues in several symposia and conferences over the last 2 to 3 years. They are very welcome to attend but we also need fresh hearts and minds to appraise the overall situation, and in particular, a government minister from the Department of Health.'

Please go to the link to read the full details of the petition and if you live in the UK please add your voice and sign the petition.

https://www.change.org/p/jane-ellison-mp-please-attend-the-patient-led-parliamentary-conference-on-january-19th-2015

No comments:

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

LOOKING AT LYME DISEASE - MSIDS

Sunday 28 December 2014