Saturday 29 December 2018

LYME DISEASE THE WORST MEDICAL DISGRACE OF ALL TIME.

Dr. Joe Burrascano talking on ILADS video.

Listen and weep for all the thousands of patients that our Governments have deliberately turned their back on and left untreated, despite having tools available to diagnose and treat for Chronic Lyme Disease. The worst medical disgrace of all time.




History of Lyme Disease by Joseph J. Burrascano, Jr. MD. from ILADS on Vimeo.


"Back in 1990/1991 the NIH developed their famous Gold stain and believe it or not, for the first time in history and also the last time in history the government agreed with what we(ILADS) were doing.

So the Gold stain was a method for detecting Borrelia, they used Borrelia specific antibodies that were bound to gold nanoparticles and they incubated that with the specimen and using electron microscope they photographed the result and they could actually see the aggregates of gold  under the  electron microscope and that would be a positive test in fact some of them actually showed whole spirochetes coated with gold, I have some beautiful photographs of shadowed spirochetes on electron microscope from them.

So they did ( I had to look this up to give you the exact thing.) They discovered that Borrelia even when in their dormant state were secreting what they called bio products, membrane bound vesicles they called them blebs and some of them were empty but some of them contained Borrelia DNA. Now we know that these are plasma fragments that allow Borrelia to communicate one to the other they also secreted what they called an S layer the letter S , S stands for slyme and the terminology today S is what a bacteria produces to make a biofilm. So there it was back in 1990 agreeing with what Alan MacDonald said in 1985- Borrelia do make biofilms. So here they found it.

So what did NIH do with this gold stain, well first they studied in animals, they studied dogs and mice and of course ticks. They found that in infected animals they could detect these gold stained spirochetes in the bladder, heart, brain, liver and spleen and blood of these infected animals, urine and tears as well as in the ticks themselves. Em! and then they started to do studies in humans and doctor Ken Liegner, myself, Paul Lavoie, Dorothy Pietrucha and others all contributed to that, a total of 73 patients were studied and again we had samples of tears, totally 50 samples of tears were collected - they found Borrelia in 47 or 48 samples of those 50 tears, that's how amazingly sensitive this test was.

With mouse urine they could dilute it 10 fold and still get a positive test, the test was 100% specific for Lyme borrelia. It did not pick up Relapsing fever Borrelia or Leptospira or other spirochetes that they tested, they did a lot of negative controls in animals and humans and never had a false positive, so it is a really solid test.

So then they got patient specimens from us, there were 73 patients these were all chronic Lyme patients whose treatments were ranged from many months upto 3 years and the mean duration of treatment was 13 1/2 months and 53% of these patients were still spilling living Borrelia antigens, these bio products that they could see. The other thing that they found, if you tested people who were still symptomatic -ok-em- and then you stopped the antibiotics and let at least 3 or 4 weeks go by and then tested them 100% were positive for Lyme. Exactly what I found in my studies five years earlier with IV therapy, if someone is still symptomatic when treatment ends and you let several weeks go by, by culture and this gold stain you can show they are still spilling Lyme living organisms. That's pretty cool.

So what ever happened to this great Gold stain - you know what, Nothing! When this whole thing came out the NIH stopped the funding for the gold stain, they made them close the whole thing down and never again did they ask front line Lyme doctors to contribute specimens to their studies. So there's some politics one more time."

https://www.ilads.org/dr-burrascano-happy-holidays/?fbclid=IwAR1f5tiputP9shjUtJeeOE5q14QSrZ4e3j8J4t6SpTKywrojpFdOi8EcBCQ

The above extract starts at 27.45 mins but listen to the whole presentation.

International Lyme and Associated Diseases ILADS website can be found - 
https://www.ilads.org/ 

Saturday 22 December 2018

LYME DISEASE LESSONS NEEDED FOR INFECTIOUS DISEASES SOCIETY OF IRELAND AND MANY OTHER DOCTORS.

On November 28th, 2018, the Oireachtas Joint Committee on Health, heard evidence from patients, patient advocates and professionals about Lyme disease. The Infectious Disease Society of Ireland (IDSI), submitted a statement authored by twenty eight of its members.

 Vector-borne Infection - Research, Analysis, Strategy (VIRAS) has written an excellent and detailed response to the IDSI challenging many points, this can be viewed at -

http://counsellingme.com/VIRAS/VIRAS_response_to_IDSI.html?fbclid=IwAR0nqSTyYa9pG-NWk3n506AgX6JpXZUCEB2qH_TVievKKyqtHzuOq_5qOe0


A copy of the IDSI statement 'had not been provided to Dr John Lambert, who gave evidence in person at the hearing, even though he is a member of the IDSI. Dr Lambert is knowledgeable and experienced regarding Lyme borreliosis and its coinfections, having had years of first-hand experience in diagnosing and treating patients. This exclusion was discourteous - to put it mildly. 

Before reading from sections of the IDSI statement during the hearing, Senator Colm Burke remarked, “Other than the Chairperson, none of us are qualified medical practitioners, so we have to rely on advice given to us by medical practitioners.”

 (Video: https://www.oireachtas.ie/en/oireachtas-tv/video-archive/committees/2131/?fbclid=IwAR2FzW3-pqsCL_Jkzytcv_fA_abMfIG9RpXO8IIl_xriwfvRAt90NlwLwGc at 1:49:30) 

This statement had implications for those providing evidence to the committee, especially those who are ‘qualified medical practitioners’. Evidence should provide government committees with information which they can weigh to inform policy and professional witnesses have an obligation to give evidence which is reliable and balanced. 

The IDSI statement showed that the authors had adopted wholesale, the Infectious Disease Society of America (IDSA) position on Lyme disease. The IDSI statement endorsed the outdated IDSA guidelines and repeated IDSA opinions on important aspects of the disease and patient care. 

When second-hand opinions are submitted as evidence, the onus to verify the reliability of those opinions rests with the witnesses. As Senator Burke’s comment made clear, it was not for the committee to discern the veracity of the evidence because, “we have to rely on advice given to us by medical practitioners”. Therefore the twenty eight authors of the IDSI statement were severally responsible for verifying the opinions which they submitted as evidence to the committee.

The following quotes are from the IDSI Statement to the Health Committee which were presented as bullet-points in the Introduction section of the document.
 “We seek to ensure that all patients under our care, including those with Lyme disease, receive the highest quality of evidence based care” 


“Evidence based care” does not exist for Lyme borreliosis. The National Institute for Clinical and Care Excellence (NICE – England) guideline for Lyme disease was published on April 11th 2018. The development of the guideline included a comprehensive literature review. Published research was rated according to its quality and risk of bias. NICE found that almost every piece of evidence was of ‘low’ or ‘very low quality’ or at ‘high’ or ‘very high’ risk of bias. NICE found no good quality evidence to inform any aspect of patient care. See Table 1 for the source and ratings of evidence used for various sections of the guideline.
It is misleading for the authors of the IDSI statement to claim that they provide, “the highest quality of evidence based care”, because there is no good quality evidence available - not that NICE with all their resources could discover. In the absence of any good evidence, the NICE guideline committee made recommendations “Based on the experience and opinion of the Guideline Committee”. One problem with opinions is that they could be swayed by the influence of vested interests. These interests could include associations with  patent holders, vaccine developers, test-kit manufacturers and investors, research sponsors and funding, medical insurance and reinsurance companies. The value to interested groups in controlling the narrative and perceptions around Lyme borreliosis, could run into billions of dollars over time. In view of the interests involved, uncritical adoption of opinions which could be influenced by these sources would be a dereliction of the duty that doctors owe to their patients."



I don't propose to copy and paste the whole VIRAS response as the link to the original is provided above and below. It is full of very interesting points, with references, that are frequently overlooked or ignored by Infectious Diseases Consultants and doctors who are all too happy to parrot the outdated IDSA guidelines. One of those is the misuse of the term (PTLDS) Post Treatment Lyme Disease Syndrome - who decides when testing is reliable, 
when treatment is sufficient, and whether patients are sick? are questions as patients we often ask.  

I was particularly pleased to read VIRAS response "We can assuage the IDSI’s concerns about “non-accredited diagnostics” because there is no such thing. It is laboratories which gain accreditation to perform a test, if they have demonstrated that they can manage the test materials and protocol properly. This does not validate or make any judgement about the quality or accuracy of a test – only the competency of the laboratory to follow procedures. 

On the topic of “unvalidated, exploratory diagnostics”, it appears that the authors of the IDSI statement are unaware that the two-tier (ELISA, Western Blot) test is not a validated diagnostic protocol and was not designed to be used as such. The two tier test is hopelessly insensitive. E.g., Cook and Puri (2017) report that two-tier Lyme borreliosis testing produces around 500 times more false-negative results than test protocols for HIV. The company which supplies test kits to the Lyme borreliosis Reference Laboratory for England, published figures showing that Two-tier testing had only 55.3% sensitivity for ‘all Lyme disease patients’ and it detected only 41% of culture-positive patients." (read on)  

VIRAS also propose a little research experiment the IDSI could do to try and solve some of the controversy.

http://counsellingme.com/VIRAS/VIRAS_response_to_IDSI.html?fbclid=IwAR0nqSTyYa9pG-NWk3n506AgX6JpXZUCEB2qH_TVievKKyqtHzuOq_5qOe0

Thursday 6 December 2018

BORRELIA AND BIOFILM - LYME DISEASE

The Emerging Role of Microbial Biofilm in Lyme Neuroborreliosis
https://www.frontiersin.org/articles/10.3389/fneur.2018.01048/full?fbclid=IwAR07DmqiRuCZpUSOeFx9S1GZ8J-Y59JdRa4AVAywKS5kBPulXHPiF0CnjZk#B184


"LNB is the most dangerous manifestation of Lyme disease. Although the early antimicrobial treatment is effective in the majority of patients, persistent forms are relatively common. The mechanisms underlying chronic LNB and other persistent forms of Lyme are unknown. Patients who have late manifestations of LB generally show a slower response to therapy with incomplete resolution. Persistent Borrelia infection requires prolonged antimicrobial treatment, with limited and controversial clinical efficacy. Recent evidences suggest that the antibiotic resistance and the reoccurrence of LB are associated with biofilm-like aggregates, which allow Borrelia spp. to resist to adverse environmental conditions. Several promising FDA-approved drugs have been shown to have excellent anti-persister activity when used in combination while their use in monotherapy regimens showed a poor effectiveness. This notion should be taken into careful consideration for the clinical management of Lyme Disease in order to prevent long-term complications.
In preliminary studies by the clinical Biofilm Ring Test® (cBRT), we found that Borrelia is able to readily produce biofilm within 24–48 h. Diagnostic procedures such as the cBRT, which allow for a rapid biofilm measurement may represent very useful tools for clinical applications (222223), since the rapid identification of biofilm-producing Borrelia strains, may help identify forms of LB which are at risk of chronicity (224). Further, characterization of Borrelia biofilm as well as the ensuing inflammatory process will likely provide novel insight to better understand the mechanism(s) concurring to LNB pathogenesis and may offer new therapeutic targets for intervention."
A very useful study with many links to important research.

Tuesday 27 November 2018

EXPOSING MYTHS ON TICK ATTACHMENT TIMES - LYME DISEASE WITHIN 12 HOURS


LYME DISEASE: A STUDY ON THE SPEED OF TRANSMISSION BY INFECTED TICKS

Ticks have three lifecycle stages that can bite humans – larva, nymph and adult –, but bacteria are usually transmitted through bites from nymphs, which are higher in density and often go unnoticed because of their small size.

The amount of time a tick must remain attached to transmit bacteria to the vertebrate host is an essential parameter in assessing the risk of transmission and identifying measures to prevent infection. It is generally accepted that the longer a tick remains attached, the higher the risk of transmission. In Europe, it is regularly stated that there is a real risk of transmission only after 24 hours of attachment.

In this study, we used a mouse model to determine the kinetics of infection by Ixodes ricinusticks (nymphs and adult females) infected with various European and North American strains or species of Borrelia. We also compared the dissemination of various strains and species of Borrelia by different modes of inoculation (via infected ticks or by injection of bacteria).

Unlike the American strains, all the European species of B. burgdorferi that we studied were detected in the salivary glands of adult ticks before a blood meal, suggesting the possibility of rapid transmission of the bacteria following a bite. The results were consistent with this theory: infection occurred within 24 hours of a bite from an adult tick. Moreover, our analysis shows that nymphs infected by European species of B. burgdorferi are capable of transmitting these pathogens within 12 hours of attachment. Our study proves that B.burgdorferi can be transmitted more quickly than stated in the literature. It is therefore vital to remove ticks as soon as possible after being bitten to prevent infection.

Furthermore, the study shows that the tropism of Borrelia varies depending on the strain and species studied, which explains the variety of clinical manifestations of Lyme borreliosis. We also demonstrate a difference in the tropism of Borrelia following a tick bite, confirming the role of tick saliva in the efficacy of infection and dissemination in vertebrate hosts. 




an earlier paper 

Lyme borreliosis: a review of data on transmission time after tick attachment.

Cook MJ.

Interesting observations from Dr Alan MacDonald

Saturday 24 November 2018

WELSH PARLIAMENT AND SCOTTISH PARLIAMENT INVESTIGATE LYME DISEASE



Dr. Robert Bransfield: Presentation on Lyme for Welsh Parliament


"Many patients with [Lyme and other] tick-borne illnesses are given other diagnoses and are told their impairments cannot be cured and can only be managed. As a result, some of these patients are given the diagnosis of multiple sclerosis, motor neuron disease, myalgic encephalomyelitis / chronic fatigue syndrome, “bodily distress syndrome,” and a number of mental illnesses and these diagnostic errors obstructs access to more effective treatments." "Caution must be used in considering the symptoms as having a psychogenic basis, such as hypochondriasis, somatization disorder, or a psychosomatic condition. If a complex, progressive multisystemic illness begins in a person who had been reasonably healthy throughout most of their life, the likelihood that this is psychosomatic or has some other psychogenic basis is very remote."

Thank you Dr Bransfield for this excellent presentation to the Welsh Parliament summarizing the situation regarding this complex disease. For those who know little about Lyme disease and that includes most doctors then this is an important presentation to listen to.

From Jenna Luché-Thayer Linkedin
https://www.linkedin.com/pulse/breaking-news-julia-morgan-wales-member-assembly-lyme-luche-thayer/?fbclid=IwAR1crzkP_oK-CHr3RuQD7UsIWBFYtQNKNAUsl5IFS4o4GZeiIWuM5I5RlMI

Jenna Luché-Thayer. November 21, 2018 

Friends,

Good news! The Wales Member of Assembly (Parliament) Julia Morgan sponsored a November 20, 2018 meeting on Lyme in the historic and beautiful Pierhead Building next to the Welsh Assembly in Cardiff, Wales.

The initiative to hold the meeting came from the hard work of Welsh Lyme, ME/CFS and Morgellons advocate Mark Morgan (no relation to Julia Morgan).

Mark invited Dr. Robert Bransfield to give an overview of the illness and distinguish the psychiatric complications from Lyme in contrast to misapplications of wrongful psychosomatic labels, such as Medically Unexplained Symptoms and Post Treatment Lyme Disease Syndrome.

Michael Cook, a UK expert on the poor reliability of the current two tier Lyme testing used in the UK (and worldwide) presented on the topic of diagnostics.

I presented on the World Health Organization's planned changes for recognizing Lyme in the new medical codes (ICD11) and how the ICD10 and previous versions of the ICD codes contributed to 14 human rights abuses across 11 human rights treatises and were based on corrupted and suppressed science.

Meeting participants included representatives from the National Health Service’s public health and scientific research divisions, the government's division of parks, general members of the public including advocates for ME/CFS and another Member of Assembly.

The participants stayed for some time following the presentations and Q & A to engage the advocates. The engagement included casual and friendly debates between the representatives from the National Health Services and the advocates. 

Following her attendance of the Lyme meeting, Member of Assembly Julia Morgan immediately attended a General Assembly meeting where she requested to the Wales Assembly they host a debate on Lyme borreliosis.

She spoke of how Mark Morgan had been advocating to raise the profile and awareness of Lyme in Wales. Julia Morgan stated there is little known about Lyme by the general public and that the disease causes many complications and great suffering.

The initial response by the chair of the meeting was to speak of the public education that has been implemented.

However, I believe that Julia Morgan and advocate Mark Morgan will be able to secure this Assembly debate in Wales. As Julia Morgan said in her presentation to the Wales Assembly, [paraphrased] ‘there have been recent Lyme debates held in the Scottish Commons, the UK House of Commons, the UK House of Lords and the European Union Parliament’.

In closing, it is clear that advocates need to press forward with political mobilizing and lawsuits against fraud and other corrupt practices that abuse the human rights of this patient population.

These kinds of political and legal actions are proving to be more effective for prioritizing and addressing patients needs than depending on 'entities required to address Lyme' such as the US Tick Borne Diseases Working Group and the UK's NICE Lyme Guidelines Committee. Such entities have built in anti-patient bias because they are very polluted by a majority who deny:

—the uncontrolled spread of the epidemic

—many life threatening complications caused by the infection

—how the infection is able to persist and cause on-going damage following antimicrobial therapy

—the immunosuppressive nature of the disease

Additionally, many of the participants in the US Tick Borne Diseases Working Group and subcommittees appear comfortable taking 100s of 1000s and millions of dollars for Lyme research to produce nothing that benefits the patient populations.

In contrast, strategic political and legal actions by advocates can:

—set free long suppressed and valid science

—open access to existing and future diagnostic and medical care options

—secure our human rights. 


---------------------------------------###------------------------------------


Faithfully,


Jenna


also

BREAKING NEWS: Scottish Parliamentarians Take On Lyme





 Jenna Luché-Thayer. November 22, 2018

FRIENDS,

On November 22, 2018 Scottish Lyme Advocate Janey Cringean and I met with Scottish Parliamentarians Alexander Burnett and Donald Cameron. Both Alexander Burnett and Donald Cameron represent rural constituents where animal husbandry is a livelihood, as is farming. For these reasons, their constituents are at risk for zoonotic diseases (animal to human transmission of diseases) and vector borne illness including those transmitted by ticks. 

Both the two Parliamentarians have genuine concern and established records for protecting the health and well being of their constituents. In addition, they understand the clear links between health and economic productivity versus poor health and economic burden.

Janey and I had a 45 minute audience with the two Parliamentarians. This generous amount of time allowed for deep and frank discussion regarding how obstruction to valid diagnosis and treatments have been driven by the globally disseminated US Lyme policies. We discussed how the 2006 Lyme Guidelines by the Infectious Diseases Society of America are riddled with many conflicts of interests that suppress relevant science and how they stand in sharp contrast to patent language by the same Guidelines’ authors and their affiliates.

For example, one year following the release of the 2006 IDSA Lyme Guidelines that describes ‘Lyme as easy to diagnose, treat and cure’, Guideline co-author Raymond J. Dattwyler [et al] in filed patent No. 7605248 Recombinant constructs of Borrelia burgdorferi. This patent states:

“Currently, Lyme Disease is treated with a range of antibiotics, e.g., tetracyclines, penicillin and cephalosporins. However, such treatment is not always successful in clearing the infection …Treatment is often delayed due to improper diagnosis with the deleterious effect that the infection proceeds to a chronic condition … One of the factors contributing to delayed treatment is the lack of effective diagnostic tools.”

The two Parliamentarians were surprised to learn:

— US Government officials are allowed to earn money off patents and in partnership with private enterprises

— there are CDC and NIH officials who hold Lyme patents

— these officials have the power to repudiate and dismiss patent products that compete with their own, or patents held by their agencies. 

These elected representatives quickly understood how Post Treatment Lyme Disease Syndrome has been used to falsely claim a person is a hypochondriac or malingerer, when in fact severe and disabling symptoms are usually due to the treatment failure. This treatment failure is tied to the discriminatory practices of restricted care for Lyme patients, discrimination that stands in contrast to the extended antimicrobials provided to many patient groups suffering from other infectious agents.  

Both Parliamentarians embraced the recognition of the seriousness of the disease as validated in the ICD11. They spoke about ensuring their government would actively support the new ICD11 codes for Lyme. They also indicated they would act to support additional efforts to remove the institutionalized obstacles to diagnosis and care.

Our conversation also focused on the high costs of undiagnosed, untreated or undertreated Lyme versus the costs of diagnosis and care. The recent findings from the US that Lyme is costing the US between 25 to 75 billion dollars a year underscores the foolishness and irresponsibility of ignoring the epidemic and denying treatment options that meet international standards.

In closing, I want to emphasize how political work by Janey Cringean and her colleagues have resulted in the Scottish Parliament’s attention to the epidemic in a concrete manner. The Scottish Parliament have held a debate on Lyme and there are actions being considered that will improve access to diagnostic and treatment options. Janey Cringean and her colleagues have made some solid allies who share common goals and can lead some critically important advances with regards to addressing this epidemic and improving patient access to diagnosis and treatment options.

Lyme advocates need to organize political action to make changes!

It is very fortunate that Scotland does not have the same corrupting and perverse incentives surrounding the Lyme epidemic that has created the human rights abuse and failures by the US government.

Recently, it appears that some members of the US Tick Borne Diseases Work Group have tried to gain international support by indicating there are opportunities for joint research projects—mostly funded by US dollars—with Lyme and TBD doctors and scientists in other countries. These members appear to have a recruitment strategy that has the potential partners adopt their language and bias—for example, encourage potential partners to use Post Treatment Lyme Disease Syndrome. To note, the target for these US funded research incentives appear to be non US Lyme leaders who clearly state Lyme infection can be persistent and immunosuppressive requiring extended treatment and have resisted the fraud of Post Treatment Lyme Disease Syndrome.

Healthcare sector corruption is a cost few countries can afford. Decades of conflicts of interests and corrupted US Lyme policies need to be repudiated by other nations.

Despite attempts that appear to want to corrupt Lyme science on a global scale, I anticipate many countries will address the epidemic for sound public health, cost and humanitarian reasons. Ultimately, the claim by the CDC and Tick Borne Diseases Work Group that ‘other countries look to the US for leadership in Lyme and tick borne diseases’ will prove to be absurdly arrogant and delusional. 



---------------------------------------###------------------------------------


Faithfully,


Jenna

Jenna Luché-Thayer. 30+ years working globally on the rights of the marginalized. Former Senior Advisor to the United Nations and the US Government. Director, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. Founder, Global Network on Institutional Discrimination, Inc. —Holding institutions accountable for political and scientific solutions. Email jennaluche@gmail.com



Friday 16 November 2018

EUROPEAN PARLIAMENT RECOGNISES SERIOUS PROBLEMS WITH LYME DISEASE INCLUDING DIAGNOSIS, TESTING & TREATMENT

MEPs call for a European plan to combat Lyme disease


MEPs have today adopted, for the first time, a resolution on Lyme disease, or Lyme borreliosis, an infectious bacterial disease in humans and in various species of domestic and wild animals, caused transmitted to humans through the bite of a tick.

Lyme borreliosis is the most common zoonotic disease in Europe, with an estimated one million cases, which are expanding geographically.

The resolution adopted by MEPs today calls for on the European Commission to draw up a plan to combat Lyme disease, to accompany mandatory reporting in all Member States, better exchange of best practice, additional funding of the methods for diagnosing and treating Lyme disease and the promotion of research efforts.

Frédérique Ries MEP, co-author of the resolution, commented after its adoption today;

“For the first time, the European Parliament has adopted a resolution on Lyme disease, which is timely given the growing risk this disease poses to Europeans. We need a European plan to tackle this growing continent wide health problem.  ”

“Treatment gaps mean that one million Europeans are struggling to receive the treatment they deserve, in the face of an overly conservative medical response. We denounce the fact that so many patients are being let down; they are entitled to effective treatment, including 100% reliable serological testing.”

“Europe must continue to fund research on "Lyme" because its diagnosis is complex and it takes various clinical forms.”

ENDS



A number of Irish MEPs have welcomed a European Parliament vote calling for better diagnosis and treatment of Lyme disease. 

Therapeutic wandering
“There is no European consensus regarding the treatment, the diagnosis and the detection of Lyme disease,” the resolution pointed out.
“From country to country, the diagnostic and treatment guidelines prove to be very different, forcing some sufferers to undertake a form of ‘therapeutic wandering’, crossing Europe to find solutions adapted to their infection,” Rivasi explained.

Lyme disease (Borreliosis) (debate)

Motion for a resolution 
 European Parliament resolution on Lyme disease (Borreliosis) (2018/2774(RSP)
B8‑0514/2018
The European Parliament,
–  having regard to the question to the Commission on Lyme disease (Borreliosis) (O-000088/2018 – B8-0417/2018),
–  having regard to the motion for a resolution of the Committee on the Environment, Public Health and Food Safety,
–  having regard to the European Centre for Disease Prevention and Control report relating to a systematic literature review on the diagnostic accuracy of serological tests for Lyme borreliosis,
–  having regard to the Expert Network consultation meeting on Lyme borreliosis surveillance in the European Union held in January 2016 in Stockholm,
–  having regard to Decision No 2119/98/EC of the European Parliament and of the Council of 24 September 1998 setting up a network for the epidemiological surveillance and control of communicable diseases in the Community(1),
–  having regard to Rules 128(5) and 123(2) of its Rules of Procedure,
A.  whereas the right to health is a fundamental right recognised by the European Treaties, in particular in Article 168 of the Treaty on the Functioning of the European Union (TFEU);
B.  whereas Lyme disease, or Lyme borreliosis, is a bacterial disease caused by the bacterium Borrelia burgdorferi, and is transmitted to humans through the bite of a tick, which itself is contaminated by the bacterium; whereas Lyme disease is an infectious disease in humans and in various species of domestic and wild animals, and is transmitted by ticks;
C.  whereas Lyme borreliosis is the most common zoonotic disease in Europe, with an estimated 650 000 - 850 000 cases and a higher incidence in Central Europe; whereas infection occurs in the spring-summer semester (from April to October), and borreliosis is recognised as an occupational disease for farmers, forestry workers and field researchers in the countries in which it is present;
D.  whereas infected ticks and the disease seem to be expanding geographically, with instances now also being recorded at higher altitudes and latitudes, as well as in towns and cities; whereas the suspected causes are, among other things, changes in land use, inter alia through the afforestation of low-quality land or the expansion of invasive plants, climate change, global warming, excessive humidity and other activities related to human behaviour;
E.  whereas there is no European consensus on the treatment, diagnosis and screening of Lyme disease and national practices vary;
F.  whereas a bite by an infected tick and the symptoms of Lyme disease can go unnoticed or even in some cases be asymptomatic, which can sometimes lead to severe complications and permanent damage similar to that of a chronic disease, in particular when the patient is not promptly diagnosed;
G.  whereas more reliable early diagnosis of Lyme disease will significantly reduce the number of later-stage cases, thus improving the quality of life of patients; whereas it will also reduce the financial burden of the disease, leading to savings of approximately EUR 330 million in healthcare costs already during the first 5 years, according to managers of the DualDur EU research project;
H.  whereas many patients are neither promptly diagnosed nor have access to suitable treatment; whereas they feel deprived and ignored by the public authorities and some continue to have persistent symptoms that can lead to chronic disease;
I.  whereas there is currently no vaccine available for Lyme disease;
J.  whereas the true burden of Lyme borreliosis in the EU is unknown due to the lack of statistics on this disease and the very wide variety of applied case definitions, laboratory methods used and surveillance systems;
K.  whereas there is no ICD code separation between early-stage and late-stage Lyme disease; whereas there are no individual ICD codes for the different late-stage Lyme disease symptoms;
L.  whereas the ILADS (International Lyme and Associated Diseases Society) treatment practice guidelines differ from those of IDSA (Infectious Diseases Society of America) and these differences between the two approaches to the disease also have an impact on treatment practices in the EU;
M.  whereas a profound understanding of the mechanism which turns Lyme disease into a chronic disease is lacking;
N.  whereas health professionals have been sounding the alarm about this health issue for nearly a decade, as have patients’ associations and whistle-blowers;
O.  whereas, although well known to medical science, Lyme disease is still underdiagnosed, in particular because of the difficulties encountered in the detection of symptoms and the absence of appropriate diagnostic tests;
P.  whereas the screening tests used for Lyme disease are not always able to provide accurate results, one such example being the Elisa test which only detects one infection at a time;
Q.  whereas many Europeans are constantly exposed to Lyme borreliosis through their professional activities (farmers, forestry workers, researchers and students carrying out field research such as biologists, geologists, surveyors or archaeologists);
R.  whereas the medical profession often follows outdated recommendations on Lyme disease that do not take sufficient account of research developments;
1.  Expresses its concern at the alarming proportions of the spread of Lyme disease in the European population, with around 1 million citizens suffering from the disease according to the census methods used;
2.  Recalls that all Member States, to varying degrees, are experiencing an upsurge in Lyme borreliosis, making it a European health problem;
3.  Welcomes the funding allocated to date by the Union for research into the early detection and future treatment of Lyme borreliosis (some EUR 16 million through projects such as ANTIDotE, ID-LYME and LYMEDIADEX);
4.  Calls for additional funding of the methods for diagnosing and treating Lyme disease; encourages, to that end, the promotion of research efforts, in terms both of increased allocation of funds and the exchange of epidemiological data, including data on the distribution and prevalence of pathogenic and non-pathogenic genospecies;
5.  Calls for additional international cooperation on research into Lyme disease;
6.  Encourages the Commission to collect as much information as possible on Lyme disease screening methods or on treatments administered in the Member States;
7.  Calls for mandatory reporting in all Member States affected by Lyme disease;
8.  Calls on the Commission to facilitate cooperation and the exchange of best practices among Member States in terms of the monitoring, diagnosis and treatment of Lyme disease;
9.  Welcomes the inclusion by certain Member States of Lyme disease in their national surveillance systems on the basis of a specific methodology;
10.  Calls on the Commission to put in place uniform surveillance programmes and to work together with the Member States on facilitating the standardisation of diagnostic tests and treatments; calls on the Commission to recognise borreliosis as an occupational disease for agricultural and forestry workers, as well as for field scientists (such as biologists, geologists, surveyors or archaeologists);
11.  Calls for individual tick prevention and control measures in the Member States in order to contain the spread of the Borrelia bacteria;
12.  Calls for the development of evidence-based guidance on clinical and laboratory diagnosis of Lyme borreliosis; calls for ICD code separation between early-stage and late-stage Lyme disease; calls also for individual ICD codes for the different late-stage Lyme disease symptoms;
13.  Requests that the Commission publish guidelines based on best practices within the EU with regard to the training of general practitioners so as to facilitate the diagnosis and screening of Lyme disease;
14.  Asks Member States to expand the use of clinical examination so that doctors can diagnose Lyme disease even if the serology tests are negative, in order to help patients break the ‘therapeutic deadlock’;
15.  Calls on the Commission to assess the magnitude of the phenomenon of some patients spending a long time seeking appropriate diagnosis and treatment of Lyme disease, in particular the cross-border movements of patients seeking treatment and the financial consequences thereof;
16.  Calls for the planning and creation of innovative projects that can contribute to improved data gathering and the greater effectiveness of education and awareness-raising activities;
17.  Welcomes the Commission implementing decision on the communicable diseases and related special health issues to be covered by epidemiological surveillance as well as relevant definitions(2), that includes Lyme neuroborreliosis in the communicable diseases list;
18.  Emphasises that the addition of Lyme disease to the European epidemiological surveillance network is enabling patients to benefit from the advantages of a robust and structured health system that permits permanent communication between competent national authorities, rapid and reliable identification of cases of Borreliosis Lyme in the Union, mutual assistance in the field of analysis and interpretation of surveillance data collected, and deployment of devices necessary to stop its spread in humans;
19.  Invites the Member States, which will be able to call on the Commission’s logistical support, to set up an information and awareness campaign to alert the population and all those concerned to the existence of Lyme disease, first and foremost in the regions most affected by its spread;
20.  Calls on the Commission to draw up a European plan to combat Lyme disease that is commensurate with the seriousness of this silent epidemic; encourages the set-up of a European network on Lyme disease that includes relevant stakeholders;
21.  Calls on the Commission and the Member States to publish common prevention guidelines for those at high risk of getting Lyme disease, such as outdoors workers, as well as standardised diagnostic and treatment guidelines;
22.  Calls on the Commission to introduce preventive tests and a method for rapidly treating and monitoring the course of Lyme borreliosis infections among professionals in the agroforestry sector and scientists involved in gathering field data;
23.  Instructs its President to forward this resolution to the Commission.
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European Parliament 2014-2019 TEXTS ADOPTED Provisional edition P8_TA-PROV(2018)0465 Lyme disease (Borreliosis) European Parliament resolution of 15 November 2018 on Lyme disease (Borreliosis) (2018/2774(RSP)) 
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'A. whereas the right to health is a fundamental right recognised by the European Treaties, in particular in Article 168 of the Treaty on the Functioning of the European Union (TFEU);
B. whereas Lyme disease, or Lyme borreliosis, is a bacterial disease caused by the bacterium Borrelia burgdorferi, and is transmitted to humans through the bite of a tick, which itself is contaminated by the bacterium; whereas Lyme disease is an infectious disease in humans and in various species of domestic and wild animals;
C. whereas Lyme borreliosis is the most common zoonotic disease in Europe, with an estimated 650 000 - 850 000 cases and a higher incidence in Central Europe; whereas infection occurs in the spring-summer semester (from April to October), and borreliosis 1 OJ L 268, 3.10.1998, p. 1. is recognised as an occupational disease for farmers, forestry workers and field researchers in the countries in which it is present;
D. whereas infected ticks and the disease seem to be expanding geographically, with instances now also being recorded at higher altitudes and latitudes, as well as in towns and cities; whereas the suspected causes are, among other things, changes in land use, inter alia through the afforestation of low-quality land or the expansion of invasive plants, climate change, global warming, excessive humidity and other activities related to human behaviour;
E. whereas there is no European consensus on the treatment, diagnosis and screening of Lyme disease and national practices vary;
F. whereas a bite by an infected tick and the symptoms of Lyme disease can go unnoticed or even in some cases be asymptomatic, which can sometimes lead to severe complications and permanent damage similar to that of a chronic disease, in particular when the patient is not promptly diagnosed; G. whereas more reliable early diagnosis of Lyme disease will significantly reduce the number of later-stage cases, thus improving the quality of life of patients; whereas it will also reduce the financial burden of the disease, leading to savings of approximately EUR 330 million in healthcare costs already during the first 5 years, according to managers of the DualDur EU research project;
H. whereas many patients are neither promptly diagnosed nor have access to suitable treatment; whereas they feel deprived and ignored by the public authorities and some continue to have persistent symptoms that can lead to chronic disease;
I. whereas there is currently no vaccine available for Lyme disease;
J. whereas the true burden of Lyme borreliosis in the EU is unknown due to the lack of statistics on this disease and the very wide variety of applied case definitions, laboratory methods used and surveillance systems;
K. whereas there is no ICD code separation between early-stage and late-stage Lyme disease; whereas there are no individual ICD codes for the different late-stage Lyme disease symptoms;
L. whereas the ILADS (International Lyme and Associated Diseases Society) treatment practice guidelines differ from those of IDSA (Infectious Diseases Society of America) and these differences between the two approaches to the disease also have an impact on treatment practices in the EU;
M. whereas a profound understanding of the mechanism which turns Lyme disease into a chronic disease is lacking;
N. whereas health professionals have been sounding the alarm about this health issue for nearly a decade, as have patients’ associations and whistle-blowers;
O. whereas, although well known to medical science, Lyme disease is still underdiagnosed, in particular because of the difficulties encountered in the detection of symptoms and the absence of appropriate diagnostic tests;
P. whereas the screening tests used for Lyme disease are not always able to provide accurate results, one such example being the Elisa test which only detects one infection at a time;
Q. whereas many Europeans are constantly exposed to Lyme borreliosis through their professional activities (farmers, forestry workers, researchers and students carrying out field research such as biologists, geologists, surveyors or archaeologists);
R. whereas the medical profession often follows outdated recommendations on Lyme disease that do not take sufficient account of research developments;'