natgillin/translations-raw huggingface dataset:
W. der især bemærker deres rolle i forbindelse med fremskaffelse og formidling af nyttige og vigtige oplysninger til MS-patienter, idet dette ofte er til trøst og støtte for og udtryk for ægte solidaritet med mange personer, der ellers kunne blive mere og mere isolerede fra spørgsmål og debatter, der vedrører dem direkte,
W. Noting in particular their role in the provision and dissemination of useful and essential information for persons with Multiple Sclerosis, which in turn may provide comfort, support and real solidarity for many persons who otherwise might find themselves even more isolated from issues and debates which concern them directly;
4. mener, at en sådan forskning bør involvere servicebrugere for at sikre, at arbejdet netop rettes mod de behov, som personer med multipel sklerose har;
Believes that such research should involve service users in order to ensure that efforts are properly directed towards the needs of persons affected by Multiple Sclerosis;
9. mener, at personer med multipel sklerose aktivt bør opfordres og tilskyndes til at deltage i udviklingen af programmer sammen med læger og andre professionelle rådgivere;
Believes that persons with Multiple Sclerosis should be actively encouraged and invited to participate in the development of programmes, alongside medical practitioners and other professional advisers;
13. mener, at der i forbindelse med uddannelsen af neurologer, specialsygeplejersker og andet sundhedspersonale bør være større incitamenter til rådighed, der kan sætte disse i stand til at specialisere sig i udvikling og anvendelse af de mest effektive behandlinger og terapier for personer med multipel sklerose; mener at dette arbejde bør sikre en bredere positiv indvirkning for MS-patienter i hele EU;
Believes that greater incentives should be available to encourage the professional training of neurologists, specialist nursing staff and other health-care practitioners to enable them to specialise in developing and administering the most effective treatment and therapies for persons with Multiple Sclerosis; and believes that such efforts should ensure a wider positive impact on MS patients throughout the European Union;
- øge bevidstheden blandt arbejdsgivere og arbejdskolleger om realiteten bag handicap og sygdomme som multipel sklerose og deres konsekvenser; - tilgodese den individuelle karakter, som kendetegner sygdomme som multipel sklerose; - gennemføre evalueringer i form af udveksling af ideer og erfaringer, navnlig på EU-plan, med henblik på at bidrage til at udvikle og udbrede modeller med gode resultater, der er til gavn for alle;
- raise awareness, amongst employers and co-workers, about the reality of disabilities and conditions such as MS and their impact; - respect the individual nature of conditions like MS; - be evaluated so as to feed into exchanges of ideas and experiences, particularly at EU level, which should help develop and spread successful models for the benefit of all;
19. anmoder Europa-Kommissionen om på baggrund af forslagene fra Europa-Parlamentets tværfaglige handicapgruppe at fremsætte et forslag til et omfattende direktiv om handicappedes rettigheder;
Requests the European Commission to submit a proposal for a comprehensive Disability Rights Directive using the proposals promoted by the European Parliament's Disability Inter-group as a basis;
BEGRUNDELSE VIGTIGT: DETTE ER EN PARLAMENTARISK BETÆNKNING, IKKE ET KLINISK ELLER VIDENSKABELIGT DOKUMENT, OG SELV OM DER ER UDVIST DEN STØRSTE OMHU I UDARBEJDELSEN HERAF, BØR OMTALEN AF DE MEDICINSKE ASPEKTER AF MS LÆSES UNDER HENSYNTAGEN HERTIL.
EXPLANATORY STATEMENT IMPORTANT NOTICE: THIS IS A PARLIAMENTARY REPORT NOT A CLINICAL OR SCIENTIFIC DOCUMENT AND ALTHOUGH GREAT CARE HAS BEEN TAKEN IN ITS PREPARATION COMMENTS ON THE MEDICAL ASPECTS OF MS SHOULD BE READ WITH APPROPRIATE CAUTION.
I august 2001 sendte Louise McVay en skrivelse til formanden for Europa-Parlamentet vedrørende forskellen i den behandling, som EU-landene tilbyder personer med diagnosen multipel sklerose.
In August 2001, Louise McVay addressed a letter to the President of the European Parliament concerning the disparity of treatment afforded by EU countries to persons who have been diagnosed with Multiple Sclerosis.
Hun påpegede, at denne forskel også ofte fandtes inden for de enkelte lande, i hendes tilfælde Det Forenede Kongerige, hvilket betød, at adgangen til vigtige lægemidler til behandling af sygdommen afhang af, hvad hun og andre beskrev som en "postnummerlotteri".
Moreover such disparity, she pointed out, was frequently devolved even within certain countries - in her case the United Kingdom - so that access to essential medicines for treating the disease became dependant on what was described by the petitioner, and others, as a "post-code lottery".
De problemer, som MS-patienter møder, drejer sig slet ikke kun om adgangen til nødvendig og livsvigtig medicinsk behandling.
The problems encountered by someone with MS of course neither begin, nor end with access to necessary and essential medical treatment.
Personer med MS møder problemer på mange andre niveauer, fra den personlige og psykiske belastning, det er at få stillet diagnosen, til de erhvervsmæssige og faglige konsekvenser for personens liv og den tilsvarende trussel mod personens indtægter og materielle trivsel.
Difficulties are encountered at many other levels, from the personal and psychological impact of being diagnosed with the disease to the occupational and professional impact on a person's life and the corresponding threat to their income and material well being.
Andrageren appellerede med egne ord i desperation til Europa-Parlamentet for at forsøge at få en form for anerkendelse, ikke blot for sig selv, men endnu vigtigere, som hun selv sagde det, for de tusindvis af andre personer, der lider under en sådan forskelsbehandling, hvoraf mange stadig nægtes deres grundlæggende menneskerettigheder til adgang til ordentlig lægelig bistand.
The petitioner appealed to the European Parliament, as she said "in desperation", in order to try to obtain some recognition not only for her personal situation, but more importantly as she also said for the thousands of other people who were suffering from such inequality of treatment, many of whom are still being denied their fundamental human rights of access to proper medical support.
Udvalget for Andragender anmodede som foreskrevet i forretningsordenen Kommissionen om at undersøge sagen, inden det traf beslutning om, hvilke andre opfølgningsaktiviteter, der var mulighed for.
The Committee on Petitions as its procedures provide for, requested the European Commission to look into the matter before deciding what other follow-up actions could be envisaged.
Kommissionens svar af april 2002 var skuffende, idet den blot oplyste udvalget om, at dette ikke hørte under fællesskabsretten, men udelukkende under medlemsstaternes kompetenceområde.
The Commission response, dated April 2002 was disappointing because it merely informed the Committee that this matter was nothing to do with European law, but was the sole competence of the Member States.
Udvalget besluttede, at det ville have været snæversynet og moralsk forkert blot at fraskrive sig sit ansvar over for de mange tusinde EU-borgere, der alle leder efter svar på sådanne spørgsmål.
The Committee decided that it would have been short-sighted and morally wrong to simply abdicate its responsibility to many thousands of European citizens who are all looking for answers to such questions.
Louise McVay opfordredes til at fremlægge sin sag for udvalget, hvilket hun med stor indlevelse gjorde den 9. juli 2003.
Louise McVay was invited to make her case before the Committee which she did most eloquently on July 9th 2003.
Til stede var også EMSP (European Multiple Sclerosis Platform) og MS-foreningerne fra Italien, Belgien, Tyskland og Det Forenede Kongerige samt MS-patienter fra flere andre europæiske lande.
Also present were the European Multiple Sclerosis Platform and the MS Societies from Italy Belgium Germany and the UK as well as MS sufferers from several other European countries.
Som følge af denne drøftelse besluttede udvalget i tæt samarbejde med Udvalget om Beskæftigelse og Sociale Anliggender at udarbejde en betænkning med henblik på at give Louise McVay en række præcise svar og ligeledes at fastlægge, hvad udvalget mener er en klar og nødvendig europæisk strategi til bekæmpelse af denne svækkende sygdom, som det i dag endnu ikke er muligt at helbrede.
It was as a result of this debate that the Committee decided to draw up a Report, in close cooperation with the Committee on Employment and Social Affairs, in order to provide a clear set of answers for Louise McVay and also to set out what it believes to be a clear and necessary European strategy for combating this debilitating disease for which, at this time, there is still no known cure.
Multipel sklerose: sygdommens natur
Multiple Sclerosis: the nature of the disease.
Multipel sklerose er en betændelsessygdom i centralnervesystemet og selve nervetrådene, som gradvist udvikler ar, der forhindrer nerven i at fungere, hvilket medfører en omfattende og uforudsigelig grad af handicap.
Multiple Sclerosis is an inflammatory disease of the central nervous system and the nerve fibres themselves, which progressively develop lesions which then prevent the nerve from functioning, causing a widespread and unpredictable level of disability.
Delvis eller fuldstændig tab af kropsfunktioner kan forekomme som følge af nedbrydningen i nervetrådene.
Partial or complete loss of body functions can develop as a result of a degeneration of the nerve fibres.
Patienter påvirkes i varierende grad med en variabel udvikling over tid.
People are affected to different degrees with a variable evolution over time.
MS er en autoimmun sygdom, og den har således nogle træk fælles med andre autoimmune sygdomme.
It is an autoimmune related disease and thus has some common characteristics with other autoimmune diseases.
Tidlig diagnose og behandling med navngivne lægemidler (Betaferon, Avonex, Copaxone, Rebif (Serono Beta interferon 1a) 22 mg og 44 mg og Glatiramer acetat) som først er blevet solgt for relativt nylig, kan gøre så enorm en forskel for den enkelte MS-patient, at det reelt forlænger levetiden.
Early diagnosis and treatment with designated drugs (Betaferon, Avonex, Copaxone, Rebif (Serono Beta interferon 1a) 22mg & 44mg and Glatiramer acetate) which have been marketed only in the relatively recent period can make an enormous difference to individual sufferers to such an extent that they are really life enhancing.
Der findes fire hovedkategorier af multipel sklerose:
There are four main categories of Multiple Sclerosis:
∙ Attakvis MS, ∙ Sekundær progressiv MS, ∙ Progressiv remitterende MS og ∙ Primær progressiv MS.
∙ Relapsing/Remitting (RRMS), ∙ Secondary Progressive (SPMS), ∙ Progressive Relapsing (PRMS) and ∙ Primary Progressive (PPMS).
Disse former er defineret inden for de seneste tyve år, hvor forskningen er kommet så langt som til at forstå sygdommen.
These have been defined within the last twenty years as research has advanced into the understanding of the disease.
De tilgængelige medicinske behandlingsformer og terapier afhænger af, hvilken form for MS, en patient har fået.
The medical treatment and therapies available are related to the specific category of MS contracted by a patient.
De ovennævnte lægemidler er imidlertid kun egnede for patienter med attakvis og sekundær progressiv MS, eller med andre ord kun omkring en fjerdedel af alle MS-patienter.
The above-mentioned drug treatments are however, only suitable for those with RRMS and SPMS, in other words only about a quarter of those with Multiple Sclerosis.
De fleste patienter har behov for andre former for medicinering til behandling af sygdommens mange symptomer - træthed, spasticitet, smerter, impotens, inkontinens eller depression.
Most persons with MS will require different forms of drug treatment to deal with the many symptoms of the illness - fatigue, spasticity, pain, impotence, incontinence or depression.
Til behandling af akutte tilfælde kan der kræves kortikosteroider.
For acute attacks corticosteroids may be required.
Den seneste forskning har undersøgt muligheden for anvendelse af cannabinoider til behandling af en række symptomer, men resultaterne giver ikke mulighed for at drage entydige konklusioner.
Recent research has investigated the use of cannabinoids as a treatment for many symptoms, though the results remain inconclusive.
Meget tyder dog på, at patienterne opnåede betydelig lindring af smerter og nedsat ubehag ved gang ved at tage oralt indgivne doser af disse midler.
They do indicate however that patients derived a significant benefit from taking orally administered doses in terms of pain relief and a reduction of discomfort during walking.
Inden for de seneste ti år er neurologerne blevet bedre til at forstå, hvordan nervesystemet beskadiges, og hvordan symptomerne fremkaldes.
Within the last decade neurologists have grown to better understand the way in which the nervous system becomes damaged and how the symptoms are produced.
Stressende livsoplevelser er af nogle forskere ligeledes blevet anerkendt som en faktor, der kan fremkalde eller forværre attakvis sklerose.
'Stressful life events' have also been identified by some researchers as a factor in provoking the onset or increasing the exacerbations in RRMS.
Det tager imidlertid ofte flere år at stille diagnosen multipel sklerose, og som nævnt ovenfor findes der forskellige former af sygdommen.
But it often takes several years to diagnose Multiple Sclerosis and there are, as has been noted above, different variations of the disease.
Imidlertid har den stadig mere udbredte anvendelse af MR-scanning medført, at diagnosen i dag ofte kan stilles tidligere.
However, the more widespread use of magnetic resonance imaging has meant that, nowadays, a diagnostic can be made earlier in many cases.
Det personlige traume for personer, der får stillet diagnosen MS, er uden tvivl stort og påvirker i enhver henseende deres dagligdag, så en effektiv behandling forudsætter professionel vejledning.
The personal trauma for any individual who is diagnosed with MS is obviously considerable as it affects every aspect of their daily lives, and any effective therapy must allow for professional counselling.
På den anden side er det også vigtigt at erkende, at MS også har konsekvenser for den pågældendes personlige og sociale miljø og ofte også hans/hendes erhvervsmæssige ansvar.
Yet, it is also important to realise that the impact of MS resonates on the person's immediate personal and social environment and often their professional responsibilities as well.
På samme måde som for andre alvorlige lidelser og sygdomme skal reaktionen fra regeringer, sundhedsmyndigheder og eventuelt EU’s institutioner og internationale organer vedrøre den enkeltes behandling (medicinsk behandling, pleje og indlæggelse, langsigtet behandling) samt personens overordnede makromiljø (forskning i sygdommen, beskæftigelsesrettigheder, karriererettigheder, transportfaciliteter, fri bevægelighed, grænseoverskridende lægehjælp osv.).
That is why, as for other serious ailments and diseases, the response from governments, health authorities and where applicable EU institutions and international bodies, must relate to the individual therapy (medical treatment, nursing and hospitalisation, long-term care), as well as the broader macro-environment of the person with MS (research into the disease, employment rights, carers' rights, transport facilities, free movement, cross-border medical assistance and so on).
På alle niveauer skal MS-patienters integritet prioriteres, ligesom de valg, den enkelte skal foretage med hensyn til sit eget liv.
At every level priority must be given to the integrity of the person with MS and the choices that each individual must make about their lives.
Epidemiologiske overvejelser
Epidemiological considerations.
"Fondation Charcot" i Belgien har udgivet en fascinerende undersøgelse om emnet, som omfatter en epidemiologisk undersøgelse om udbredelsen af MS.
The 'Fondation Charcot' in Belgium has published a fascinating study on the subject which includes a general epidemiological survey of MS prevalence.
Ifølge én dristig hypotese stammer MS fra de nordeuropæiske vikinger i det ottende og niende århundrede, og sygdommens nuværende globale geografiske fordeling afspejler disse vikingers migrationsmønster siden da.
One hypothesis which is ventured suggests that MS originated among the Viking population of Northern Europe in the VIII and IX century and its current geographical distribution globally reflects migration patterns from this source since then.
De ridser de områder i verden op, hvor beviserne på sygdommen er mest fremtrædende.
They sketch the areas of the world where evidence of the illness is the most preponderant.
Disse områder omfatter Nordeuropa, men også Italien, USA og Canada samt Australien og New Zealand.
Such areas include Northern Europe - but also Italy, the United States and Canada as well as Australia and New Zealand.
Inden for det europæiske område er forekomsten af MS størst på Orkney- og Shetlandsøerne.
Within the European area, the Orkney & Shetland Isles have the highest level of prevalence.
Det er interessant at bemærke, at det i USA fortrinsvist er personer af skandinavisk herkomst, der rammes af sygdommen.
It is interesting to note that in the US, the population most affected is of Scandinavian origin.
I denne undersøgelse understreges det naturligvis, at den genetiske baggrund kun er én variabel i et meget komplekst klinisk mønster, der eventuelt en dag kan gøre det muligt for det videnskabelige samfund at klarlægge årsagerne til multipel sklerose.
The study emphasises of course that genetic background is but one variable in a very complex clinical range which may one day allow the scientific community to identify more clearly the causes of Multiple Sclerosis.
Der er behov for en molekylær genetisk undersøgelse af globalt omfang for at kunne fremlægge beviser for sygdommens tilsyneladende oprindelse.
A molecular genetic study on a global scale would be required to provide clear evidence in relation to the apparent origin of the disease.
Samtidig antydes det endvidere, at de genetiske faktorer eksempelvis i Frankrig synes at være langt mindre vigtige sammenlignet med andre eksterne faktorer for mulige sygdomsfremkaldende årsager.
At the same time, it is also indicated that in France for example, genetic factors appear to be much less important compared to other external factors of possible causes for the triggering of the disease.
Andre mulige medvirkende omstændigheder, herunder også miljømæssige, skal ligeledes vurderes og mulige sammenhænge fastlægges, eftersom det er klart, at selv om det genetiske element er yderst interessant, er også andre elementer relevante for sygdommens tilblivelse.
Other possible causal factors, including even environmental ones, also need to be more comprehensively assessed and potential correlations established because even though the genetic element is of great interest, it is clear that a multiplicity of elements are involved at the genesis.
Situationen i nogle medlemsstater
The situation in some Member States.
I Det Forenede Kongerige er forekomsten af multipel sklerose større i Skotland og Nordirland end i England og Wales.
In the UK, there is a greater prevalence of Multiple Sclerosis in Scotland and Northern Ireland than in England and Wales.
Én general hypotese, der vinder terræn, vedrører både denne kendsgerning og de ovenfor nævnte epidemiologiske tegn, nemlig at der er en underliggende genetisk disposition for at få sygdommen.
One general hypothesis which is gaining in credence, related to this and to the epidemiological pointers mentioned above is that there is an underlying genetic predisposition to the contracting of the disease.
I Det Forenede Kongerige er der omkring 85.000 personer, der har multipel sklerose.
About 85,000 people have Multiple Sclerosis in the United Kingdom.
Den britiske regerings sundhedsministerium rundsendte i 2002 en skrivelse til alle sundhedsmyndigheder, som skulle afbøde nogle af alle de klagepunkter, som Louise McVay henviste til i sit andragende.
The United Kingdom government, through the Department of Health, issued a circular to all Health Authorities in 2002 which was designed to remedy some of the complaints to which Louise McVay's petition referred.
Den omhandlede rentabel tilvejebringelse af sygdomsbegrænsende behandling til personer med multipel sklerose ("Cost Effective Provision of Disease Modifying Therapies for People with Multiple Sclerosis"), og bag begrebet "rentabel" gemte sig en forklaring på, hvordan MS-patienter kunne deltage i en nye ordning.
It was concerned with "Cost Effective Provision of Disease Modifying Therapies for People with Multiple Sclerosis" and behind the 'cost-effective' banner it explained how MS patients could participate in the new scheme.
"Alle patienter med attakvis MS og med sekundær progressiv MS, hvor attakkerne er det dominerende kliniske aspekt, som opfylder de af ABN ( Association of British Neurologists) udviklede kriterier, kan modtage behandling under denne ordning."
"All patients with relapsing-remitting MS, and those with secondary progressive MS in which relapses are the dominant clinical feature, who meet the criteria developed by the ABN (Association of British Neurologists) are eligible for treatment under this scheme."
Dette var et stort skridt fremad, selv om det ikke løste de behandlingsrelaterede problemer, som størstedelen af MS-patienter også i dag oplever.
This represented a big step forward though it has not managed to resolve the therapy-related problems experienced by the majority of MS sufferers even today.
I skrivelsen tilkendegives det, at det samlede antal patienter i England og Wales, som falder ind under disse retningslinjer, måske rent faktisk kun udgør 12-15 % af alle patienter med MS, svarende til 7.500 – 9.000 personer.
Indeed, the circular admits that the total number of patients in England and Wales who fall within its guidelines may only be within the range of 12% - 15% of patients with MS – 7,500 to 9,000 people.
Det offentlige sundhedskontor i Skotland (The Office for Public Health) har offentliggjort et meget værdifuldt og omfattende behovsanalyseprogram ("Needs Assessment Programme"), hvori der fremsættes en række meget vigtige forslag til håndtering af virkningerne af sygdommen.
The Office for Public Health in Scotland has published a most valuable and comprehensive "Needs Assessment Programme" which makes a number of highly important proposals for dealing with the effects of the disease.
Det er interessant at bemærke, at man i rapporten tillader sig at foreslå, hvad den ideelle MS-service skal sikre:
Interestingly, this report allows itself to suggest what the "ideal MS service" should do:
∙ hurtig henvisning af mistænkte tilfælde ∙ vurdering af mulig diagnose af neurolog ∙ vurdering af et tværfagligt team med erfaring i MS-forvaltning med henblik på at identificere personlige behov og yde hensigtsmæssig service ∙ løbende og vedvarende opfølgning i definerede intervaller samt et hurtigt selvhenvisningsprogram i krisesituationer ∙ oplysning og støtte til patienter og plejepersonale.
∙ allow rapid referral of suspected cases ∙ provide assessment of possible diagnosis by neurologist ∙ provide assessment from a multi-disciplinary team experienced in MS management to identify individual needs and to deliver appropriate service ∙ provide ongoing and continuous follow-up at defined intervals and also to allow a rapid self-referral system at times of crisis ∙ provide information and support to patients and carers.
En sådan model er helt klart værdifuld på europæisk plan.
Such a model has clear value at the European level.
I rapporten fremhæves det imidlertid også, at der forekommer store variationer i adgangen til og kvaliteten af behandling, og at den nuværende behandling tydeligvis er mindre end optimal.
However, the report also emphasises that wide variations in accessibility and quality of care exist and that current care is "substantially sub-optimal".