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EU-Parlament on Lyme disease

Posted: Sun 18 Nov 2018 17:04
by Anushka
You can download the video on the right hand side on this page

http://www.europarl.europa.eu/ep-live/e ... format=wmv

Here some quotes from the presentations
The curage of people affected by Lyme disease is admirable. There is a real wall they encounter when they are trying to deal with it. A lot of doctors simply do not have any knowledge of it ...or specialist do not have the tool to help them. About a million Europeans are affected.
People also meet another obstacle and that is the conservative approach of medical academies and people still maintain that the ELISA test would be a 100 % reliable whereas all scientific publication have said the opposite and in out text we denounce this hostage taking of patients who do have the right to benefit from totally reliable test and to be able to use best practice with proper treatment for those suffering from chronic lyme disease ......
"There are doors opening; the European Union has just added Lyme disease to transmissible diseases ......"
The WHO recently reclassified Lyme in its International classification of diseases recognizing dementia the could be linked to it and also transmission from mother to child …..
There is often a failing to understand how this disease works…it is chronic in nature and lots of doctors are not trained to deal with it. And there is a kind of denial because it doesn’t fit neatly into our code
No consensus about diagnosis or treatment and this failure to detect and recongnise it diagnose it has seriously affected those patient who are suffering from it who find themselves in a kind of diagnostic and a therapeutic vacuum.

Re: EU-Parlament on Lyme disease

Posted: Wed 28 Nov 2018 0:32
by X-member
A quote from the post above:
There is often a failing to understand how this disease works…it is chronic in nature....

Asymptomatic Borrelia-seropositive individuals display the same incidence of Borrelia-specific interferon-gamma (IFN-gamma)-secreting cells in blood as patients with clinical Borrelia infection.

Ekerfelt C , Forsberg P , Svenvik M , Roberg M , Bergström S , Ernerudh J

This Swedish information is from 1999.

https://europepmc.org/abstract/med/10193424

A quote:
Borrelia Lyme disease is a complex disorder that sometimes becomes chronic.
Ps! IDSA call this late Lyme disease. Ds.

Re: EU-Parlament on Lyme disease

Posted: Wed 28 Nov 2018 0:47
by X-member
A quote from the first post:
People also meet another obstacle and that is the conservative approach of medical academies and people still maintain that the ELISA test would be a 100 % reliable whereas all scientific publication have said the opposite...
ELISPOT "T-cells test" som kompletterande teknik för laboratoriediagnostik av Borreliainfektion i spinalvätska

Swedish information from 2007.

https://www.researchweb.org/is/lio/ansokan/12525

A translated quote:
In addition, false negative results are found because symptomatic seronegative individuals with Lyme borrelios have been reported in several studies. It has been suggested that at least 7% of all cases with Lyme borreliosis are seronegative.

Re: EU-Parlament on Lyme disease

Posted: Wed 28 Nov 2018 0:52
by X-member
Perhaps this also belong in this thread?

The outer surface proteins of Lyme disease borrelia spirochetes stimulate T cells to secrete interferon-gamma (IFN-gamma): diagnostic and pathogenic implications.

P Forsberg, J Ernerudh, C Ekerfelt, M Roberg, M Vrethem, and S Bergström

Swedish information from 1995.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1553228/

A quote:
Late stages of borrelia Lyme disease infections may be difficult to diagnose because of unspecific symptoms and unreliable laboratory tests, being too unspecific or insensitive.

Re: EU-Parlament on Lyme disease

Posted: Sat 1 Dec 2018 7:06
by Anushka
@x-member,

While I appreciate you want to inform us about alternative testing methods or possible immunological pathology in Lyme disease, this thread is not about this topic, but about Lyme policies discussed in the EU Parlament.

Are your sure your english is good enough to actually understand what you reading and posting about ?

Re: EU-Parlament on Lyme disease

Posted: Sat 1 Dec 2018 7:07
by Anushka
Ärzte Zeitung online, 27.11.2018 07:07
EU

Parlamentarier für Meldepflicht bei Borreliose

STRAßBURG. Das Europäische Parlament hat die EU-Kommission dazu aufgefordert, Pläne zur Bekämpfung der Lyme-Borreliose auszuarbeiten.

Eine entsprechende Entschließung wurde von den Abgeordneten gebilligt.

Die Lyme-Borreliose sei eine stille Epidemie, von der mittlerweile EU-weit eine Million Bürger betroffen sind. Sie werde immer noch zu wenig diagnostiziert, auch weil geeignete Tests fehlten.

Das Parlament fordert mehr Forschung, Überwachungsprogramme und eine Vereinheitlichung von Diagnostik und Behandlung. Dazu gehöre auch eine Meldepflicht für die Erkrankung in allen EU-Staaten.

Außerdem sollten eigene ICD-Diagnoseschlüssel für Borreliose in Früh- und Spätstadium geschaffen werden. Die Mitgliedstaaten werden gebeten, die Möglichkeiten zu klinischen Untersuchungen auszuweiten, sodass Ärzten eine Diagnose auch dann möglich ist, wenn der Serologietest negativ ausfiel. (juk)

Copyright © 1997-2018 by Springer Medizin Verlag GmbH
https://www.aerztezeitung.de/politik_ge ... liose.html

Translation
Parliamentarian for mandatory reporting in Lyme disease
Strasbourg. The European Parliament has called on the EU Commission to draw up plans to combat Lyme disease.

A resolution was approved by the MEPs.

The Lyme disease is a silent epidemic, which affects now one million citizens across the EU. Lyme disease is still under-diagnosed because Lyme-Borreliose lacked accurate test.

Parliament calls for more research, monitoring programs and standardization of diagnosis and treatment. This includes mandatory reporting for the disease in all EU countries.

In addition, ICD diagnostic keys for early and late stage Lyme disease should be established. Member States are invited to broaden the scope for clinical investigations so that doctors can make a diagnosis even if the serology test is negative. (Juk)

Copyright © 1997-2018 by Springer Medizin Verlag GmbH

Re: EU-Parlament on Lyme disease

Posted: Sun 2 Dec 2018 14:41
by Anushka
Parliament calls for “alarming” spread of Lyme disease to be tackled

December 2, 2018

www.europeaninterest.eu

The EU should draw up plans to combat the disease, the “silent epidemic” spread by ticks, that remains underdiagnosed and affects around one million Europeans.

MEPs expressed their concern at the alarming rate at which Lyme borreliosis has spread throughout the EU, in a resolution adopted by a show of hands on Thursday. Around one million EU citizens are suffering from the disease.

The Commission should draw up plans to combat the disease at European level, in accordance with the seriousness of this silent epidemic, say MEPs. They encourage the set-up of a European network, including the relevant stakeholders.

The true extent of Lyme borreliosis in the EU is unknown due to the lack of statistics on this disease and the very wide variety of definitions and methods to detecting, diagnosing and treating it in the EU, MEPs say. Many patients are neither promptly diagnosed nor have access to suitable treatment. The disease is under-diagnosed because of the difficulties in detecting symptoms and the absence of appropriate diagnostic tests.

The European Commission should put in place uniform surveillance programmes and work with member states on facilitating standardised diagnostic tests and treatments.

MEPs also call for mandatory reporting in all member states affected by the disease, and for promoting individual tick prevention and control measures in order to contain the spread of the Borrelia bacteria.

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. 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.

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. The suspected causes are, among other things, changes in land use, 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.

https://www.europeaninterest.eu/article ... e-tackled/

Re: EU-Parlament on Lyme disease

Posted: Sun 2 Dec 2018 21:05
by X-member
A quote from an earlier post in this thread:
Are your sure your english is good enough to actually understand what you reading and posting about ?
viewtopic.php?f=7&t=6299#p45233

I suggest that the person who wrote this contact the admin in this forum.