BSSA 2018 Research Award success for Sjogrens Cambs and Cambridge based Patients Led Research Hub
Our co-produced funding application with the Cambridge based “Patients Led Research Hub” (based at Addenbrooke’s Hospital to the British Sjögren’s Syndrome Association’s 2018 Research Award has been successful!
This grant will help to create an online patient portal to allow sjogrerns syndrome patients to interact with their own health data, use symptom trackers, and input trial data. We aim to use the portal as a platform for a patient led dietary supplement trial.
Great News for all Sjogren’s Syndrome patients. Read the full details from Carol and Henrietta on our New Research Project Page
UK nursing union calls for second Brexit referendum
Article from Health-Europa 29th August 2018
The UK’s Royal College of Nursing has written to the leaders of nine of the UK’s political parties, calling for a second Brexit referendum.
In a letter signed by the chair of council of the Royal College of Nursing, Maria Trewern, the nursing union and professional body calls on the leaders of political parties in all four countries of the UK to back a second Brexit referendum, which would allow citizens in the UK to vote on whether to accept the final deal.
The Royal College of Nursing represents some 435,000 members and is the world’s largest nursing union. In the letter, the organisation warns that the UK’s withdrawal from the EU – particularly in the case of a hard Brexit, where no deal is struck between the two parties and the UK withdraws from the Single Market – could pose an immediate risk to the provision of safe and effective care by the UK’s nurses.
What potential challenges are UK nurses facing following Brexit?
One immediate concern facing the UK health service is workforce sustainability, with reports indicating that the number of healthcare professionals moving to the UK from EU countries has dropped significantly, and that many doctors and nurses who had settled in the UK are also leaving.
Further, if the UK is forced to withdraw its membership of the European Medicines Agency, access to medicines, and participation in clinical trials and research projects are at risk, which could reduce the quality of care being offered to UK patients.
In the letter, Trewern explains why a second Brexit referendum is in the best interests of the Royal College of Nursing’s membership: “As the debate across our membership has made clear, the implications of Brexit for the health and care system will be numerous. There are risks that, if not credibly addressed, may damage population health, as well as severely impact on our members’ ability to provide safe and effective care for their patients in both the short and the long term.”
Dr Philip Lee is MP for Bracknell, former Justice Minister, and a Best for Britain champion. Dr. Lee’s recent article in the “Independent” underlines the realities related to the NHS "post brexit" which our own research has certinly underlined.
What are the three things people most often wish their loved ones? Health, wealth and happiness. Health is one of the keys to a happy and successful life.
Now imagine someone told you that you had a choice – and that your choice could ensure the best supply of medicines if you got sick; the maximum level of funding and access for new clinical trials and treatments; the greatest possible number of experienced doctors and nurses and support staff to keep our hospitals running. I, for one, would bite their hand off. The choice I am talking about is staying in the EU.
Our EU membership has benefited our collective health and wellbeing – and we have the potential to benefit from it so much more.
So let us ask some blunt questions about Brexit. Does it stand to make us more or less healthy? Will it make it more or less likely that we get the medicines we need? Will it likely bring us more doctors and nurses or fewer?
First question. There are no circumstances I can foresee in which Brexit makes us healthier. Right now we have access to EU agencies such as the European Centre for Disease Prevention and Control, which helps us deal with emerging medical threats. Then there’s the European Medicines Agency, which automatically brings us new treatments available in the EU’s much larger market, and access to new clinical trials. We also immediately benefit from the common regulation of new drugs, which saves us the money and bureaucracy of duplicating those processes. Our government is also currently required to adhere to the EU’s strict air pollution limits, which have saved many lives. The British Medical Association has, moreover, raised questions about what might happen if Britons in the EU lose the health insurance, which currently allows them to access treatment abroad.
Second, will it make it more or less likely that we get the medicines we need? The prime minister has said that we will not remain in the customs union under any circumstances. The EU’s Michel Barnier has also rejected the idea of staying in just the single market for goods – so-called “cherry picking”. That almost certainly means border delays and disruption under any Brexit scenario – and that jeopardises both pharmaceutical supply chains and the movement of key medication, one of the key reasons I tabled my successful EMA amendment to the Brexit Trade Bill.
A large proportion of our medicines currently enter freely and abundantly through the Channel ports. These include radioisotopes for treating cancer and insulin for diabetics, but also large numbers of generic medicines. These help to keep people alive. The government is currently talking up a no-deal scenario, which could collapse the ports of Dover and Calais, according to their own operators – but any form of Brexit risks disruption. Radioisotopes degrade quickly, and if held up at the border they will be rendered useless. Insulin, meanwhile, needs to be kept at a stable temperature and is also liable to damage if, for example, it gets overheated. The government may attempt to stockpile supplies but there is no guarantee there will be enough for everyone. Why would we choose to close ourselves off when right now we have all the medicines we need at our fingertips? Also, the cost of stockpiling drugs will cost the NHS millions if not hundreds of millions of pounds. Far from helping to fund the NHS, Brexit will be taking money away from it.
Third, will Brexit bring us more doctors and nurses or fewer? The NHS is one of our nation’s most prized institutions. Right now it has access to the EU’s brightest and best medical staff, who have come in their thousands to contribute to our health service and our country. Currently 10 per cent of our doctors and 7 per cent of our nurses come from the EU, with their qualifications instantly recognised here. Even if their future rights are upheld, many have already indicated that they feel unwelcome in this country and may leave. Last year, the number of EU nurses registering to work here dropped by 96 per cent, and 10,000 EU citizens left the NHS altogether. These are not just our doctors and nurses, but also the cleaners, porters and administrators who keep our hospitals and doctors’ surgeries running. All are valued and all are needed.
The NHS transcends individual governments and party politics. The truth is that the health service will likely suffer financially if Brexit happens. For one thing, the European Investment Bank has provided it with €3.5 billion since 2001 – sources of funding which will now dry up. But more importantly, even the government’s best analysis shows that Brexit will shrink economic growth – if there is less money in the Treasury coffers that means less money for public services.
I’ve practised as a doctor for almost twenty years, and been a national politician for eight. I have seen real problems in both the NHS and the EU. But is the solution for doctors who see problems with the NHS to leave it? Of course not. In the same way, I also know that the answer to those problems with the EU is to stay in the ring. I want our children to inherit the same opportunities, prosperity and security that my generation has enjoyed. To do that, we need to tackle the root causes of Brexit and stand up for the interests of the people and communities we represent.
Sadly, Brexit can only ever be an exercise in damage limitation. It is also a monumental distraction. The issues facing our health and social care systems need our full attention and we don’t need to take risks with our well-being. There are no circumstances where leaving the EU can help to better safeguard our nation’s health. I know that we can do better, not by reverting to the status quo, but by agreeing a new settlement with our European friends and neighbours. Now that we know what Brexit means, let’s offer the people a Final Say – and then get to work building a healthier, happier and more prosperous country.
Dr Philip Lee is MP for Bracknell, former Justice Minister, and a Best for Britain champion
Stigma and Sjogren's Syndrome
From far too many people including medical professionals
"You really look well today!"
The reality usually the direct opposite
From far too many medical professionals
"Sjogrens Syndrome - Never heard of it!"
This is a major serious autoimmune ilness - There is no excuse for clinical professionals not to be fully up to date on this illness. "Never heard of it !" is totally unacceptable. Work towards Sjogrens Awareness and total eradication of the stigma's
Its Just a Dry Mouth and Dry Eyes condition!
There is so much to learn to be properly informed and Sjogrens Aware
Top Graph - Sjogren 's Syndrome Bottom graph Systemic Lupus
By GlobalData Healthcare Research Repoer Published 2017
Autoimmune diseases occur when a body’s immune system attacks its own healthy cells. Currently, there is no cure for autoimmune diseases and treatment can only improve symptoms.
Studies have suggested an increase in autoimmune disease rates in recent years, which can mean an increased burden on the healthcare system to take care of patients with autoimmune diseases. GlobalData epidemiology analysis of two common autoimmune diseases, systemic lupus erythematosus (SLE) and Sjögren’s syndrome, found that the US and UK have higher prevalence rates than other countries.
SLE and Sjögren’s syndrome are distinct diseases with unique symptoms, such as blood disorder and rashes in SLE and dry eyes and joint pain for Sjögren’s syndrome. However, the two also share many similarities, such as they are both connective tissue disorders, have similar autoantibodies, and are more common in women than men. It is also common to have both SLE and Sjögren’s syndrome at the same time. Therefore, it would be expected to see similar epidemiology profiles for the two diseases.
Figure 1 below presents the comparison of age-adjusted diagnosed prevalence of SLE and primary Sjögren’s syndrome in seven major pharmaceutical markets (7MM) (the US, France, Germany, Italy, Spain, the UK, and Japan), estimated by GlobalData epidemiologists. The prevalence rates were estimated based on in-depth review of population-based epidemiology studies.
It is difficult to pinpoint why the US and UK have higher prevalence. There could be underlying population characteristics or genetics that cause these two markets to have higher prevalence, or it could be better diagnosis or disease awareness in these markets that results in more diagnosed cases. GlobalData epidemiologists believe it is most likely a combination of the above. More studies would be necessary in the US and UK to better understand what is causing this trend, to help support autoimmune disease patients.
For more details about the epidemiology of these two autoimmune diseases, please see the EpiCast Reports.
GlobalData (2016). EpiCast Report: Systemic Lupus Erythematosus (SLE) – Epidemiology Forecast To 2025, December 2016, GDHCER144-16
GlobalData (2015). EpiCast Report: Sjögren’s Syndrome – Epidemiology Forecast to 2024, December 2015, GDHCER104-15
Primary Sjögren's Syndrome patients to benefit from "European Harmonization and Integration" project
35 Academic Bodies from 14 Countries now working together to harmonize and integrate research findings in respect of Primary Sjögren’s Syndrome thanks to a major grant from the European Commission to cover years 2017 to 2020 of an ongoing project.
Harmonization and integrative analysis of regional, national and international Cohorts on primary Sjögren’s Syndrome (pSS) towards improved stratification, treatment and health policy making
EUR 10 193 125
EUR 9 998 750
Call for proposal:
RIA - Research and Innovation action
HarmonicSS vision is to create an International Network and Alliance of partners and cohorts, entrusted with the mission of addressing the unmet needs in primary Sjogrens Syndrome; working together to create and maintain a platform with open standards and tools, designed to enable secure storage, governance, analytics, access control and controlled sharing of information at multiple levels along with methods to make results of analyses and outcomes comparable across centers
ETHNIKO KAI KAPODISTRIAKO PANEPISTIMIO ATHINON
Higher or Secondary Education Establishments
INSTITUTE OF COMMUNICATION AND COMPUTER SYSTEMS
TECHNOLOGICAL EDUCATIONAL INSTITUTE OF CRETE
ETHNIKO KENTRO EREVNAS KAI TECHNOLOGIKIS ANAPTYXIS
UNIVERSITA DEGLI STUDI DI UDINE
UNIVERSITA DI PISA
UNIVERSITA DEGLI STUDI DI PERUGIA
UNIVERSITA DEGLI STUDI DELL'AQUILA
UNIVERSITA DEGLI STUDI DI ROMA LA SAPIENZA
SCUOLA SUPERIORE DI STUDI UNIVERSITARI E DI PERFEZIONAMENTO SANT'ANNA
MEDIZINISCHE HOCHSCHULE HANNOVER
CHARITE - UNIVERSITAETSMEDIZIN BERLIN
FRAUNHOFER GESELLSCHAFT ZUR FOERDERUNG DER ANGEWANDTEN FORSCHUNG E.V.
GOTTFRIED WILHELM LEIBNIZ UNIVERSITAET HANNOVER
THE UNIVERSITY OF BIRMINGHAM
QUEEN MARY UNIVERSITY OF LONDON
UNIVERSITY OF NEWCASTLE UPON TYNE
CONSORCI INSTITUT D'INVESTIGACIONS BIOMEDIQUES AUGUST PI I SUNYER
FUNDACIÓN PARA LA INVESTIGACIÓN E INNOVACIÓN BIOMÉDICA DE ATENCIÓN PRIMARIA
ATOS SPAIN SA
UNIVERSITE DE BRETAGNE OCCIDENTALE
ACADEMISCH ZIEKENHUIS GRONINGEN
UNIVERSITAIR MEDISCH CENTRUM UTRECHT
STICHTING NEDERLANDS INSTITUUT VOOR ONDERZOEK VAN DE GEZONDHEIDSZORG
EUROPEAN LEAGUE AGAINST RHEUMATISM
UNIVERSITETET I BERGEN
UNIVERSITE LIBRE DE BRUXELLES
ISTRAZIVACKO RAZVOJNI CENTAR ZA BIOINZENJERING BIOIRC DOO
OKLAHOMA MEDICAL RESEARCH FOUNDATION
SJOGREN'S SYNDROME FOUNDATION INC.
MARIOS LYMARAKIS KAI SIA EE
EU contribution: EUR 279 132,50
Sjögren's Cambridgeshire website peaks at 330 visitors on 20 Feb 2018
Eiger North Face
20th February 2018 was a red letter day for this website with 330 seperate visitors logging on to the website. The busiest pages were those related to the Cambridgeshire Area group's joint research project.
Other very busy pages include Sjogrens Syndrome Symptoms (No 1 most weeks), Sjogrens and Vasculitis, Complications in Sjogrens Syndrome (NHS Report), Previous Talks and Presentations at the Cambridgeshire Support Group of the BSSA.
DuringFebruary and March daily viewings of the site are now well in excess of 50 visits per day.
April 2018 - Sjogrens Cambs website visits average 50 per day.
Swedish Government Legislation assists Sjögren's Syndrome Patients
The Swedish parliament building in Stockholm. Photo: Jonas Ekströmer
Swedish Guidllines for patients
Where can you get help and treatment?
First contact with your healthcare center, general practitioner, ophthalmologist or dentist. With your help, you can get a referral to the nearest rheumatological clinic, who has knowledge of Sjögren's Syndrome.
Free choice of care throughout the country.
From 2003-01-01, the possibility of applying for care in all county councils applies. If there is a long wait at your nearest rheumatology clinic, you as a patient have the right to be examined at another rheumatology clinic in the country. The patient is entitled to pay the travel expenses while the survey costs are paid by the home country. (Authorization must always be given by the homeland). You can also always apply for a so-called self-assessment by writing to your hospital and applying for your disease problems.
Research on the disease Sjögren's syndrome occurs at research centers in Linköping, Uppsala, Stockholm and Malmö. Physicians, specialist dentists, rheumatologists and ophthalmologists with an interest in and knowledge of Sjögren's syndrome can be found in Lund, Gothenburg, Linköping, Halmstad, Huddinge, Malmö, Stockholm, Täby, Varberg, Växjö, Kalmar, Uppsala and Umeå.
Rules even 31/12 2012
Beginning in In 2000, the county council's cost responsibility, Dental Ordinance 1998: 1338, §3 was extended to include patients with Sjögren's Syndrome. This means that the cost of dental care due to Sjögren's Syndrome, upon application at the county dental care units, is paid according to the same principles as for medical care, ie. through high-cost protection.
Rules from January 1, 2013.
In order to pay only according to the rules that apply even though 31/12 2012 one must be able to show a different disease besides Sjögren's syndrome, for example RA. The diseases covered by "blue card" are found in the report before the bill for the "third stage of the dental reform". For this, support is required by diagnosis, medical certificate, and your dentist is still in search of the county council, even after 31/12 2012.
From 1 January 2013, the responsibility goes to the Social Insurance Fund and those who only have Sjögren's syndrome may apply to the insurance fund as everyone else and then apply these rules: The only state invites after 31/12 2012 for those who only have Sjögren's syndrome are two prophylactic treatments a year at the dentist and this is at a cost of a total of 1,200 kr.
Why New Disadvantaged Rules for Sjögren Patients?
Until 31.12.2012, it has been recognized by the State that reduced saliva and, in some cases, almost non-existent access to saliva in the mouth has been given the right to dental care under the
high-cost protection as part of the disease treatment. To this group, patients with Sjögren's syndrome and radiation-related have been associated. It is generally known that the lack of saliva in the
mouth significantly increases the risk of caries.
From 2013-01-01 this has this lack of saliva apparently more or less ceased to develop karies because the government, through social minister Göran Hägglund, concluded that there are enough prophylactic treatments per year at 1,200 kr to minimize caries risk of said patient groups. Instead, now, according to the National Board of Health, should people encourage sick people with the Syndrome to take better care of their teeth and thus get healthier teeth?
You can interpret this as being a specific group who can not properly manage your teeth and that you have received dental care for a number of years
For more information visit www.sjogrensjournal.se
Major International Sjogrens Syndrome research project gets underway
Charité Research Organisation is a subsidiary body of the Charité Hospital in Berlin. Charité is the largest University Hospital in Europe and has been established for many years as one of the world's formost medical research organisations. It is very exciting news that they are now embarking on what is major comprehensive research project into sjogrens syndrome and it's treatment. The Sjögrens Syndrome research project is being undertaken by their specialist medical research organisation
Sjögrens Syndrome - Symptoms & Therapy
Sjögrens syndrome is a chronic inflammatory autoimmune disease in which individual components of the immune system are directed against the secretory glands in the body. Inflammation mainly affects the lacrimal and salivary glands, which causes a reduction in the flow of tears and saliva and dries out the mucous membranes. The disease was first described in 1933 by the Swedish ophthalmologist Henrik Sjögren. It is still largely unknown in the population today and its genesis is still not clearly understood.
Symptoms and distribution of Sjögren's syndrome
Sjögrens syndrome may be a separate disease (primary) or associated with other autoimmune diseases (secondary) such as rheumatoid arthritis or systemic lupus erythematosus (SLE). The main symptom in persons with primary Sjögren's syndrome is a persistent dry mouth and dry eye (sicca symptoms), which usually occurs at the age of 40-50 years and in approximately 90% of the cases in women. Patients often complain of severe fatigue that can significantly affect their quality of life. It may be accompanied by other symptoms such as joint and muscle complaints, temporarily swollen salivary glands and cervical lymph nodes, skin changes and circulatory disturbances in the fingers (Raynaud's syndrome). In rare cases, the lungs, kidneys, blood vessels and / or the nervous system are also damaged. The majority of patients affected by Sjögren syndrome are women.
However, it is not known how many people suffer from the disease as a whole. The reason for missing statistics is the extremely difficult diagnosis. The most common symptoms, such as dry eyes, dry mouth and dry mucous membranes, lead the patients first to specialists such as eye, ENT or dentists. However, since the symptoms can also occur in other diseases, they are often not associated with Sjögren's syndrome. Patients often have many years to go to diagnosis.
Diagnosis of Sjögren ssyndrome
If Sjögrens syndrome is suspected, a simple function test (Schirmer test, measurement of salivary flow) can first be used to determine whether a reduced glandular function is objectively detectable. The next step is to determine if the autoantibodies SS-A (Ro) and SS-B (La) can be detected in the blood found in many but not all Sjögren's patients. Should Sjögren syndrome continue to be suspected despite the lack of evidence of autoantibodies in the blood, salivary gland biopsy may be initiated.
Therapy methods in Sjögrens syndrome
Even if the disease is still not curable and there are no drugs that can successfully combat all the symptoms occurring, there are still various treatment options. The dryness symptoms are alleviated primarily by substitutes such as artificial tear and saliva or nasal gels. For dry mouth, also a sufficient fluid intake is recommended. Rheumatic concomitant complaints are treated with basic medicines such as antimalarials (e.g., Quensyl), cortisone, and immunosuppressants. The latter are drugs that diminish the functions of the immune system.
So far, however, immunosuppressants can only improve the secretion in the early stages of the disease, if residual gland function is still detectable. The same applies to the biologics used so far, ie drugs that are produced using methods of biotechnology and genetically modified organisms. To date, there is no approved for the Sjögrens Syndrome drug, which could provide proof of efficacy in controlled clinical trials. In a placebo-controlled study, however, it was shown that the monoclonal antibody rituximab led to a significant improvement in secretion with residual gland function remaining.
We are looking for women and men with Sjögrens Syndrome
In upcoming clinical trials of the Charité Research Organization, new therapies for Sjögrens Syndrome will be applied.
For these studies we are looking for:
Women and men diagnosed with Sjögren's Syndrome, in which the Sjögrens Syndrome in addition to mouth and eye dryness has already led to further complications.
Controlled Trial of Rituximab and Cost-Effectiveness Analysis in Treating Fatigue and Oral Dryness in Primary Sjögren's Syndrome
The treatment of Sjögren's syndrome remains frustrating. In this work, the authors compared 66 patients with placebo versus 67 patients with rituximab. The primary endpoint was achieved in 21 of 56 placebo-treated patients and 24 of 61 rituximab-treated patients. The response rate was 36.8% and 39.8%, respectively (adjusted odds ratio 1.13 [95% confidence interval 0.50, 2.55]). Overall, there was no significant improvement in symptoms except for unstimulated salivation. The cost per patient was £ 2,672 ± 241.71 for placebo and £ 10,752 ± 264.75 for rituximab. Overall, rituximab was neither clinically effective nor cost-effective. Another therapeutic hope for the still treatment-resistant Sjögren syndrome has thus faded.
KD Dr. med. Marcel Weber
Help Needed - New Research Papers from UK
We endeavour to present best factual data based on Sjögrens Syndrome research from around the world.
At present our trawl has resulted in a number of useful studies originating in Germany, Sweden, Netherlands, Belgium & Italy as being useful for the web site.
We would like to include articles related to Sjogrens Syndrome research that has been undertaken in the British Isles over recent years. Please help Sjögrensto ensure we can keep people up to date on what research projects have been published in the UK.
USA reports can be found on the website of The Sjogrens Syndrome Foundation
This appeal is made to Medical Professionals, Dental Professionals, Patients and friends
Please contact Geoff Catlin (Web Editor) via the sjogrenscambs contact info on this website.
Geoff Catlin 13 Nov 2017
Conference Attended - Lower Back Pain Myth-busting - Chartered Society of Physiotherapy
The Chartered Society of Physiotherapy held a conference at the Sue Ryder Hospice in Peterborough on 19th October 2016. Geoff Catlin attended on behalf of the Cambridgeshire Group of the BSSA.
Whilst lower back pain does not have a headline listing within the numerous problems encountered by those with our condition, the event proved very worthwhile as it highlighted current thinking by the Chartered Society of Physiotherapy.
The traditionally accepted causes of back pain were challenged as a number of GP’s present reflected upon traditional causes for such pain i.e. “bad posture”. The reality is that pain is the biggest problem encountered in many patients visits to their GP’s. Whilst a number of GP practices attended a significant number did not attend. This was very sad as GP referrals need to be based on an up to date understanding of the services to whom they are referring patients.
The talk concentrated on the direct relationship between:
POOR SLEEP - STRESS - PAIN
PAIN = DAMAGE
Whilst solutions were somewhat straight forward in respect of physiotherapy for most patients, the reactions within the bodies of Sjögren's Syndrome patents, particularly when the body interprets higher levels of physical excersize as the trigger for the body’s reactions thus attacking the body instead of defensive actions.
There is considerable scope for greater learning and understanding in this area of care.
Perhaps we could arrange for a suitably experienced member of the CSP to come and talk at one of our future meetings.
Addenbrooke's Hospital Consultant Speaks to the Sjogrens Cambridgeshire Support Group.
Dr. Natasha Jordan (Consultant in Rheumatology and Autoimmune Connective Tissue Diseases) of Cambridge University Hospitals NHS Foundation Trust (Addenbrooke's Hospital) gave a lecture to the BSSA Cambridge Region Support Group on 12th October 2016 at the main lecture theatre at Cancer UK's Cambridge Campus. Approximately fifty group members and friends attended along with three research professionals from GSK who are currently undertaking research into Sjögren's Syndrome.
Dr. Jordan's main theme concentrated on the numerous problems surrounding "Chronic Fatigue" encountered by all Sjögren's syndrome Patients, highlighting the various factors that can cause the very serious levels of fatigue suffered as a result of the condition The talk also included many practical tips to help to reduce the levels of severity and advice into practical self help management of Chronic Fatigue.
Dr. Jordan addresses the Cambridgeshire Support Group of the BSSA at the Cancer Research lecture theatre in Cambridge
Sjögren's Cambridgeshire founder members Carol Burns (right) and Henrietta Breitmeyer (left) welcome and introduce Dr. Jordan to the audience. From an initial informal meeting of four Sjogrens Syndrome patients to events held at prestige venues Sjogrens Cambridgeshire in now a key regional group within the British Sjögren's Syndrome Association. Henrietta and Carol have promised to tell the full story of the group's founding and growth on this website soon.