My Activity Tracking
253
kms
My target 260 kms
Let’s Run MS away (again - #2)!
(EN)
I decided to do the MS Run again at the Brussels Half Marathon. I noticed that preparing for the half marathon last year gave me discipline that I managed to maintain after the event, which improved a lot my mental health (and fitness level, haha).
If you want to see my motivation from last year, you can check it out here: European Multiple Sclerosis Platform - Cornelia Pauna
To be honest, I have the same motivation, but I want to highlight some important aspects from EMSP’s currently ongoing projects and why they resonate so much with me. There are 2 projects related to Epstein-Barr virus infection currently ongoing:
BEHIND-MS: The role of Epstein-Barr virus infection in the pathogenesis of Multiple Sclerosis
EBV-MS: Targeting Epstein-Barr virus Infection for Treatment and Prevention of Multiple Sclerosis
Basically scientists discovered that there’s a link between Epstein-Barr virus (EBV) and Multiple Sclerosis (MS) but it’s not yet clear how one impacts the other. So these research initiatives try to understand how EBV leads to MS development. Here’s the breakdown:
EBV is very common, in more than 95% in the population
Almost all people with MS have had an EBV infection before getting their MS diagnosis
Out of those 95% of the population which have had EBV, only 0.2 - 0.3 develop MS
So the questions of these projects are: why only some people infected with EBV develop MS? What is the underlying mechanism of this process?
I truly believe in a holistic approach and I try to follow that every day. So when I see these initiatives that try to answer difficult questions from a new angle that could potentially help prevent MS onset, I get very curious and want to do my best to support it.
EMSP will contribute on several levels to these projects, such as:
Involving its MS Community Advisory Board to support in shaping the clinical trial protocol
Developing a policy brief to prioritize what resulted from the project as being important and influence decision-makers to address those needs accordingly
Training consortium partners how to effectively engage patience in their research and the importance of doing so
Co-leading social media campaigns to raise awareness about the findings
Communicating and disseminating the information in lay language
Any research that is getting us closer to finding a cure and potentially preventing people from getting MS, makes my heart jump and invades my brain with dopamine. I believe EMSP plays an important role in these projects and needs our support to keep it going. So if that sounds exciting/interesting/important for you as well, help me support EMSP’s work with a donation. And of course, if you happen to be in Brussels on November 2nd, come and say Hello to the team at the start/finish line.
(RO)
Am decis sa merg din nou la semimaratonul de la Bruxelles pentru o campanie de constientizare pentru Scleroza Multipla. Am observat ca pregatirea pentru semimaraton de anul trecut mi-a dat disciplina pe care am reusit sa o mentin si dupa eveniment, fapt care mi-a imbunatatit starea de spirit mentala (si fizica, haha).
Daca vrei sa vezi motivatia de anul trecut, poti sa o verifici aici: European Multiple Sclerosis Platform - Cornelia Pauna
Sincera sa fiu, am aceeasi motivatie, doar ca acum vreau sa evidentiez cateva aspecte importante din proiectele curente celor de la EMSP si de ce rezoneaza asa de mult cu mine. Au doua proiecte in derulare legate de infectia cu virusul Epstein-Barr:
BEHIND-MS: rolul infectiei cu virusul Epstein-Barr in patogeneza (originea si dezvoltarea) sclerozei multiple
EBV-MS: Vizarea infectiei cu virusul Epstein-Barr pentru tratamentul si prevenirea sclerozei multiple
Practic oamenii de stiinta au descoperit ca exista o legatura intre virusul Epstein-Barr si Scleroza Multipla dar inca nu e clar cum una o influenteaza pe cealalta. Asadar aceste initiative au rolul de a intelege cum virusul Epstein-Barr duce la dezvoltarea sclerozei multiple. Iata defalcarea:
Virusul Epstein-Barr este foarte comun, mai mult de 95% din populatie il are
Aproape toti oamenii care au scleroza multipla au avut o infectie cu virusul Epstein-Barr inainte de a primi diagnosticul cu scleroza multipla
Din cei 95% din populatie care au virusul Epstein-Barr, doar 0.2 - 0.3 dezvolta scleroza multipla
Asadar, intrebarile pe care aceste proiecte incearca sa le raspunda sunt: De ce doar unii oameni care au fost infectati cu virusul Epstein-Barr dezvolta ulterior scleroza multipla?
Cred cu adevarat intr-o abordare holistica si incerc sa o urmez in fiecare zi. Asa ca atunci cand vad initiative care incearca sa raspunda la intrebari dificile dintr-un unghi nou si care ar putea sa ajute la prevenirea debutului sclerozei multiple, devin foarte curioasa si incerc sa ofer tot suportul pe care il pot oferi.
EMSP va contribui in mai multe moduri la aceste proiecte, cum ar fi:
Implicarea Boardului Consiliului Consultativ pentru a sprijini elaborarea protocolului studiului clinic
Elaborarea unui rezumat de politici pentru a prioritiza ceea ce a rezultat din proiect ca fiind important si pentru a influenta factorii de decizie sa abordeze aceste nevoi in mod corespunzator
Instruirea partenerilor consortiului despre cum sa implice eficient pacientii in studiile lor precum si importanta acestui lucru
Co-conducerea campaniilor pe retelele de socializare pentru a creste gradul de constientizare cu privire la ce s-a constatat in timpul derularii proiectului
Comunicarea si diseminarea informatiilor intr-un limbaj nespecializat, usor de inteles.
Orice cercetare care ne aduce mai aproape de gasirea unui leac si care ar putea preveni aparitia sclerozei multiple, imi face inima sa tresara si imi invadeaza creierul cu dopamina. Cred ca EMSP joaca un rol important in aceste proiecte si are nevoie de sprijinul nostru pentru a-l mentine in desfasurare. Asadar, daca acest lucru suna interesant/important si pentru tine, ajuta-ma sa sustin activitatea EMSP cu o donatie. Si desigur, daca esti in Bruxelles in 2 noiembrie, vino sa saluti echipa la start/finish.
My Updates
Training week #10
Sunday 5th Oct
(EN)
I cannot stress enough how important personalised care is for MS patients. Another project that EMSP worked on a few years ago was IMSS (Impact of Multiple Sclerosis Symptoms) which is assessing these symptoms on the quality of life of people with MS so that they can receive personalised care and support. The project consisted in a survey which included 4 sections:
sociodemographic data and disease history
MS symptoms
treatment and care methods
satisfaction with how people with MS are currently managing their symptoms.
The results have been officially launched this year. The leaflet can be found here: https://emsp.org/wp-content/uploads/2022/12/IMSS-Leaflet.pdf
On another note, there’s less than a month to the MSRun. Here’s how this week of training went.
(RO)
Nu pot sublinia indeajuns cat de importanta este ingrijirea personalizata pentru pacientii cu scleroza multipla. Un alt proiect la care EMSP a lucrat acum cativa ani a fost IMSS (Impactul Simptomelor Sclerozei Multiple), care evalueaza aceste simptome asupra calitatii vietii persoanelor cu scleroza multipla, astfel incat acestea sa poata primi ingrijire si sprijin personalizat. Proiectul a constat intr-un sondaj care a inclus 4 sectiuni:
date sociodemografice si istoricul bolii
simptome ale sclerozei multiple
metode de tratament si ingrijire
satisfactia cu privire la modul in care persoanele cu scleroza multipla isi gestioneaza in prezent simptomele.
Rezultatele au fost lansate oficial anul asta. Brosura poate fi gasita aici: https://emsp.org/wp-content/uploads/2022/12/IMSS-Leaflet.pdf
In alta ordine de idei, a mai ramas mai putin de o luna pana la MSRun. Iata cum a decurs saptamana asta.
Training week #9
Sunday 28th Sep
(EN)
Last week ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) took place, the world’s largest professional organisation dedicated to MS research, treatment, and care. This year’s conference tackled topics such as precision medicine and patient-center research, which to me translates to personalized treatments. For a disease called “the disease with 1000 faces”, it seems rather unnatural to treat it like it has only 1 face. EMSP was part of the conference to represent the MS community and be part of the conversation together with researchers and clinicians.
On another note, MSRun2025 is getting closer and closer. This is how this week's training went.
(RO)
Saptamana trecuta a avut loc ECTRIMS (Comitetul European pentru Tratament si Cercetare in Scleroza Multipla), cea mai mare organizatie profesionala din lume dedicata cercetarii, tratamentului si ingrijirii sclerozei multiple. Conferinta din acest an a abordat subiecte precum medicina de precizie si cercetarea centrata pe pacienti, ceea ce, pentru mine, se traduce prin tratamente personalizate. Pentru o afectiune numita „boala cu 1000 de fete”, pare destul de nefiresc sa o tratezi ca si cum ar avea o singura fata. EMSP a participat la conferinta pentru a reprezenta comunitatea persoanelor cu scleroza multipla si pentru a lua parte la conversatie alaturi de cercetatori si clinicieni.
In alta ordine de idei, MSRun2025 se apropie tot mai tare. Asa a decurs antrenamentul de saptamana asta.
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Training week #8
Sunday 21st Sep
(EN)
Last week EMSP hosted a webinar entitled “Movement with MS” and Dr. Stephanie Woschek, one of the speakers, emphasized the difference between movement and exercise, that is:
Movement - the act of changing place or position
Exercise - has a purpose, structure and rules (like personal efforts)
I was surprised to find out that in the past people with MS were not allowed to exercise, thinking it would do more harm than good. Luckily nowadays we have plenty of research proving that exercise actually helps in dealing with comorbidities associated with MS, such as cardiovascular disease, restless leg syndrome, fatigue, depression and anxiety or osteoporosis. Moreover, it has been observed that exercise is also anti-inflammatory because it is enhancing immune function, and for an inflammatory disease like MS, this is only good news.
Don’t know if it was this information from the webinar, or simply a good week, but this is how my training week went.
(RO)
Saptamana trecuta, EMSP a gazduit un webinar intitulat „Miscarea in scleroza multipla”, iar Dr. Stephanie Woschek, una dintre persoanele care au prezentat, a subliniat diferenta dintre miscare si exercitii fizice, si anume:
Miscarea - actul de a schimba locul sau pozitia
Exercitiile fizice - au un scop, o structura si reguli (precum eforturile personale)
Am fost surprinsa sa aflu ca in trecut, persoanele cu scleroza multipla nu aveau voie sa faca exercitii fizice, crezand ca le va face mai mult rau decat bine. Din fericire, in zilele noastre avem o multime de cercetari care dovedesc ca exercitiile fizice ajuta de fapt la tratarea comorbiditatilor asociate cu scleroza multipla, cum ar fi bolile cardiovasculare, sindromul picioarelor nelinistite, oboseala, depresia si anxietatea sau osteoporoza. Mai mult, s-a observat ca exercitiile fizice sunt si antiinflamatoare, pentru ca imbunatatesc functia imunitara, iar pentru o boala inflamatorie precum scleroza multipla, acestea sunt doar vesti bune.
Nu stiu daca au fost informatiile din webinar sau pur si simplu o saptamana buna, dar asa a decurs saptamana mea de antrenament.
Training week #7
Sunday 14th Sep
(EN)
Let me tell you why I appreciate the work that EMSP does (among other reasons). It’s the fact that they put at my disposal useful information I no longer need to search for separately. Nowadays we have enough things to fill in our brains, consciously or unconsciously, and so it is so relieving to know that when I have that time of the day/week/month when I want to intentionally think of MS, I have a place to reliably gather my information.
This means I also have more mental space and energy to do and think of other things, such as training for the MS Run. And speaking of, this is how week #7 went.
(RO)
Permite-mi sa iti spun de ce apreciez munca depusa de EMSP (printre altele). Este vorba despre faptul ca mi-au pus la dispozitie informatii utile pe care nu mai trebuie sa le caut separat. In zilele noastre avem suficiente lucruri pentru a ne umple creierul, constient sau inconstient, asa ca este atat de linistitor sa stiu ca atunci cand am acel moment al zilei/saptamanii/lunii cand vreau sa ma gandesc intentionat la scleroza multipla, am un loc unde sa-mi adun informatiile in mod sigur.
Aceasta inseamna ca am si mai mult spatiu mental si energie pentru a face si a ma gandi la alte lucruri, cum ar fi antrenamentul pentru MS Run. Si apropo de asta, asa a decurs saptamana 7.
Training week #6
Sunday 7th Sep
(EN)
Some weeks come with more running motivation. This was one of those weeks. Check it out!
(RO)
Unele saptamani vin cu motivatie mai multa pentru alergat. Saptamana asta a fost una dintre ele. Vezi mai sus.
Training week #5
Sunday 31st Aug
(EN)
DMTs (disease modifying therapies) are very important in any chronic disease. However, since it’s chronic, it means you need to take it for the rest of your life. And like anything in life, if you use something good in excess it might start to hurt you at some point. That’s why new therapies that could potentially cure MS are very important, which is exactly what the IMMUTOL project is doing. I’m very excited that EMSP is now part of the project. You can read more about it here: https://immutol-horizon.eu/
Meanwhile, this is how week #5 went.
(RO)
Tratamentele modificatoare ale afectiunii sunt foarte importante in orice afectiune cronica. Totusi, fiindca e cronic, inseamna ca trebuie sa le iei pentru restul vietii. Si ca orice alt lucru in viata, daca folosesti ceva care-ti face bine in exces, ajunge in cele din urma sa-ti faca rau. De aceea noi terapii care ar putea vindeca SM-ul sunt foarte importante; asta e exact ce face proiectul IMMUTOL. Sunt foarte entuziasmata ca EMSP s-a alaturat proiectului. Poti citi mai multe despre proiect aici: https://immutol-horizon.eu/
Intre timp, asa a mers saptamana #5.
Training week #4
Sunday 24th Aug
(EN)
EMSP is hosting the webinar “Movement with MS: Strategies for Staying Active” on September 16th. If you want to find out about preparation techniques for sporting events, practical tips for adapting your workouts to your symptoms or simply exercise strategies for any fitness level, you can register here: https://us06web.zoom.us/meeting/register/l5S6Ho1pQyeaQdcBmzT5KQ#/registration
Meanwhile, this is how week #4 went.
(RO)
EMSP gazduieste webinarul „Miscarea in scleroza multipla: Strategii pentru a ramane activ” pe 16 septembrie. Daca vrei sa afli despre tehnici de pregatire pentru evenimente sportive, sfaturi practice pentru adaptarea antrenamentelor la simptomele experimentate, sau pur si simplu strategii de exercitii pentru orice nivel de fitness, te poti inscrie aici: https://us06web.zoom.us/meeting/register/l5S6Ho1pQyeaQdcBmzT5KQ#/registration
Intre timp, asa a mers saptamana #4.
Training week #2 and #3
Sunday 17th Aug
(EN)
I realized that because I had many things going on during the last 2 weeks, the target of running 20 km/week was way too optimistic. Initially I tried to make plans on how to achieve it; that’s what I promised to myself, didn’t I?!
Multiple Sclerosis is an autoimmune disease, meaning the immune system is doing harm in healthy places of the brain, spine and optic nerve. If I were to stick to the plan of running 20 km/week I would have ended up hurting myself. But I slowed down, prioritized what was important to me and listened to my body. I’m glad I did that. If you’re reading this, hope you do too!
This is how week #2 and week #3 went.
(RO)
Am realizat ca din cauza ca am avut 2 saptamani pline, obiectivul de a alerga 20 km/saptamana era mult prea optimist. Initial am incercat sa imi fac planuri mentale cum sa reusesc asta; pentru ca asta mi-am promis, nu-i asa?!
Scleroza multipla este o afectiune autoimuna, adica sistemul imunitar face rau in locuri sanatoase din creier, coloana si nerv optic. Daca era sa raman la planul initial de a alerga 20 km/saptamana as fi ajuns sa-mi fac rau. Dar am incetinit, prioritizat ce era important pentru mine si am ascultat corpul meu. Ma bucur tare ca am facut-o. Daca citesti asta, sper ca si tu!
Asa au mers saptamanile #2 si #3.
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Training week #1
Sunday 3rd Aug(EN)
There are 13 weeks between now (August 3rd) and when the Brussels marathon takes place (November 2nd). Thus, I decided to set a target of minimum 20 km of running/week. I believe that consistency is very important when living with MS. I was mentioning in the description of my page that I believe in a holistic approach to MS management (and life really), so when I finally realized that staying physically active is making my body and mind feel so good, I tried to maintain this habit as best as I could. This is how the first week went.
(RO)
Sunt 13 saptamani intre acum (3 august) si cand va avea loc semimaratonul la Bruxelles (2 noiembrie). Asa ca am decis sa setez un obiectiv de 20 km de alergat/saptamana. Cred cu tarie ca este foarte importanta consecventa cand traiesti cu scleroza multipla. Spuneam in descriere ca sunt in favoarea unei abordari holistice in managementul sclerozei multiple (si in viata, haha), asa ca atunci cand am realizat cat de important e pentru minte si corp sa fiu activa fizic, am incercat sa mentin obiceiul asta cat de bine am putut. Asa a mers prima saptamana.
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