Calling All Those With Multiple Sclerosis

alexkidman,
@alexkidman@aus.social avatar

I am precisely $267 (just 6.7%) short of my donation goal that I've been chasing all month long for ... and the clock is ticking. If anyone's willing to donate, NOW is the time!


https://www.themay50k.org/fundraisers/alexkidman/the-may-50k-2024

kauer,
@kauer@aus.social avatar

@alexkidman what happens if you end up short?

alexkidman,
@alexkidman@aus.social avatar

@kauer I get sad, because I raised less money than I wanted to. You wouldn't want me to be sad... would you?

(Got to be worth a try...)

alexkidman,
@alexkidman@aus.social avatar

A couple of last minute donations (thanks to Anonymous & Sean M) means I'm now at 94.4% of my goal -- and the world gets another cat picture!

(Tegan wants you to help me STRETCH to the final goal figure. Donate now!)

#MS #KissGoodbyeToMS #MultipleSclerosis #Fundraiser #Australia #CatsOfMastodon #Cats

https://www.themay50k.org/fundraisers/alexkidman/the-may-50k-2024

pseudonymsupreme,
@pseudonymsupreme@pnw.zone avatar

It’s my anniversary. To celebrate, I took the day off work, bought new binoculars, made a badass salad for lunch, went to McLane and got my car washed and vacuumed. Feeling good about my life choices.

anathema_device,
@anathema_device@bne.social avatar
SubtleBlade,
@SubtleBlade@mastodon.scot avatar
swisslet,
@swisslet@mas.to avatar

Very spasm-y legs when I went to bed last night, but an ibuprofen and a couple of drops of cannabis oil and I slept right through. Surprising, but most welcome. It bugs me that I can’t get access to this legally without huge expense. It’s a game changer.

tosbourn,
@tosbourn@masto.ai avatar

@swisslet that's incredible.

I haven't needed something like Gabapentin before, but just very occasionally will get symptoms that I know others treat well with cannabis.

purplepadma,
@purplepadma@beige.party avatar
DenisCOVIDinfoguy,
@DenisCOVIDinfoguy@aus.social avatar

COVID-19 found to increase risk of hospitalization, death in multiple sclerosis (MS): Study.

Researchers say findings in England show threat 'still very real for many'

"With new variants constantly emerging, people living with MS should be considered an important high-risk group for COVID-19 hospitalization and death for which additional preventive measures and multilayered public health protections are urgently needed"

#COVID19 #multiplesclerosis @auscovid19

Source: https://multiplesclerosisnewstoday.com/news-posts/2024/04/15/covid-19-increases-risk-hospitalization-death-ms-england-study/

nikink,
@nikink@aus.social avatar
metaning,
@metaning@mastodon.social avatar

@DenisCOVIDinfoguy @auscovid19 Literally the opposite of what neurologists have been saying (up to now?).

DenisCOVIDinfoguy,
@DenisCOVIDinfoguy@aus.social avatar

MS patients face much greater risk of hospitalization, death from COVID-19, despite high rates of vaccination.

"These findings indicate that vaccination alone may not adequately protect individuals with MS from severe COVID-19 outcomes, and underscore the urgent need for additional preventive measures against COVID-19 in this vulnerable population, say researchers."

@auscovid19

Source: https://medicalxpress.com/news/2024-03-ms-patients-greater-hospitalization-death.html

The new analyses are part of the INFORM (INvestigation oF COVID-19 Risk among iMmunocompromised populations) study, which analyzed data of nearly 12 million people aged 12 years and older in England to assess COVID-19's impact, risk, and health care resource use (HCRU) among immunocompromised populations compared with the general population during the omicron wave. Previous results from INFORM found that immunocompromised individuals face disproportionate burdens from COVID-19, with substantially higher risk of developing severe COVID-19 outcomes than the general population. However, the specific burden faced by individuals with MS, which was not categorized as immunocompromised, was not assessed previously. To find out more, researchers compared the risk of COVID-19 hospitalization and death in vaccinated individuals with MS and the general population in England from 1st January to 31st December, 2022. They analyzed routinely collected, national primary and secondary care electronic data from a random sample of 25% of all individuals aged 12 years or older in England registered with the National Health Service (NHS). Subgroup analysis was conducted among individuals who had been vaccinated with three or more doses of COVID-19 vaccines by Jan 1, 2022. Of 11,990,730 individuals included in the study, 16,350 (0.1%) individuals with MS were identified.).
More than half (6,060,635) of those in the general population and more than three-quarters (12,905) of patients with MS had been fully vaccinated (received at least three doses of a COVID-19 vaccine by Jan 1, 2022). During the study, a total of 20,910 COVID-19 hospitalizations and 4,810 COVID-19 deaths were recorded in the general population, corresponding to crude overall incidence rates of 0.24 and 0.06 per 100 person-years, respectively. "We hope that these findings raise awareness that the threat of COVID-19 is still very real for many, and that vaccine boosters are inadequate to protect this clinically vulnerable group", says Professor Quint. "With new variants constantly emerging, people living with MS should be considered an important high-risk group for COVID-19 hospitalization and death for which additional preventive measures and multi-layered public health protections are urgently needed." Despite the important findings, the authors point to several limitations, including that they can't rule out the possibility that other unmeasured factors such as underlying illness and level of MS disability might have influenced the results. They also note that they did not examine the effect of use of disease-modifying therapies, time since last vaccination, type of vaccination, and prior infection.

Laloofah,
@Laloofah@mstdn.social avatar

@DenisCOVIDinfoguy @auscovid19 I was diagnosed with MS 30 years ago and have been in remission for many years, but my physician and our county’s public health nurse have been adamant about how crucial it is that I avoid getting infected with COVID. We’ve never stopped taking every precaution (so far successfully) & have gotten every available booster, but sure wish so many people weren’t making a difficult thing increasingly challenging for vulnernable people like me. 😷

RainofTerra,
@RainofTerra@terra.incognita.net avatar

Hello people in the little glowing pocket rectangle, my sister and my adorable nephew are raising money for the National Multiple Sclerosis Society on behalf of my mom who has MS. If you could donate (and don’t forget employee matching!) I’d appreciate it and will even post a new corgi picture for each person who replies that they donated. Any little bit helps! #WalkMS #MultipleSclerosis

https://events.nationalmssociety.org/index.cfm?fuseaction=donorDrive.participant&participantID=416226

indutny,
@indutny@fosstodon.org avatar

@RainofTerra donated!

pseudonymsupreme,
@pseudonymsupreme@pnw.zone avatar

March is #MultipleSclerosis Awareness Month and boy am I aware right now. How many doctor’s office fish tanks have I sat in front of throughout my life?
MS is a neurological condition where your own immune system attacks the myelin sheaths that protect your nerves. It can manifest for folks in any number of ways. For me, it has presented itself as optic neuritis, vertigo that lasts for weeks on end, intense numbness and tingling and pain from my rib cage down and more. #MSAwareness #FuckMS 1/4

anathema_device,
@anathema_device@bne.social avatar

@pseudonymsupreme ❤️
One of my dearest friends was diagnosed with MS a couple of years ago. This, on top of coping with an inoperable but manageable tumour for which he has to take really strong meds daily. It's his birthday today. I'm thinking of you both.

pseudonymsupreme,
@pseudonymsupreme@pnw.zone avatar

Fuck. My #MRI shows new lesions. I hate #MultipleSclerosis so much. I’m so disappointed right now. #FuckMS

heyfluxay,
@heyfluxay@retro.pizza avatar

@pseudonymsupreme ugh,...sorry to read this...

anathema_device,
@anathema_device@bne.social avatar
swisslet,
@swisslet@mas.to avatar

I got a leg brace to use when running a couple of years ago. I have foot drop and a general loss of strength & was falling over a lot. Since then, I’ve managed to stay on my feet. I’m not running quickly, but I am still running. I fell over this evening and scuffed up my knee, but I’ve been a bit MS-y for the last few days and it was an uneven bit of path. I’m choosing to see the bigger picture. Just a (literal and figurative) bump in the road.

purplepadma,
@purplepadma@beige.party avatar

@swisslet You do brilliantly, keep going 💜

peterdeppisch,

Can #autoimmune diseases be cured? Scientists see hope at last.

https://www.nature.com/articles/d41586-024-00169-7

"After decades of frustration and failed attempts, scientists might finally be on the cusp of developing therapies to restore immune ‘tolerance’ in conditions such as diabetes, lupus and multiple sclerosis."
#Diabetes #Lupus #MultipleSclerosis

mattotcha,
@mattotcha@mastodon.social avatar
swisslet,
@swisslet@mas.to avatar

Very pleased to dip under 30 mins at #parkrun today. This is more than 8 minutes slower than my PB, but as my #MultipleSclerosis has progressed, this is now some going. Felt okay too on a chilly day, although a lake swim (5.9 degrees) and sauna (85 degrees) left me incapable of anything but a 2 hour nap when I got home. Still, a good day.

#running #ColdWaterSwimming #Sauna

Ruth_Mottram,

One of my most beloved relatives suffered from the devastating disease #MultipleSclerosis. So I pounced on this week's @nature piece on it, but both the news item and the (no fewer than 4) accompanying papers from Willerslev's group at #CopenhagenUniversity are about so much more than MS - thosands of years of human #migration, #evolution and indeed who we are in #Europe Worth a read (I fear it may be paywalled though)

https://www.nature.com/articles/d41586-023-03977-5

Ruth_Mottram,

An archive version is here
https://archive.vn/EOyqB

RadicalAnthro,
@RadicalAnthro@c.im avatar
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