alexkidman, to MultipleSclerosis
@alexkidman@aus.social avatar

Lazing on a Sunday afternoon… would be lovely, but I’ve been out pounding the pavements for another 5km in my run. And I’ve only got 5 more days to go to raise funds, so go read the latest blog post and DONATE TODAY!

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

alexkidman, to running
@alexkidman@aus.social avatar

I don’t usually update my page twice in a day.. but it turns out today has been an AMAZING day for fundraising. Read the latest (astonishing!) blog now and donate TODAY!

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

alexkidman, to running
@alexkidman@aus.social avatar

New day, new goals, new blog post as my fundraiser hits new heights and I go more than a little CRAZY by upping my limits.

I’m only going to make it with your help, so read the latest update and donate TODAY!

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

alexkidman, to MultipleSclerosis
@alexkidman@aus.social avatar

This is my shocked face.

Why shocked?

Because I just hit 100.9% of my donation total for (with thanks to Brodie F, Ray S and Chris B) -- and I have NO intention of stopping now! I'm going to keep running (tomorrow) but you can still donate TODAY!

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

alexkidman, to running
@alexkidman@aus.social avatar

My 100km run for continues, as I hit 90% of my running goal — and an amazing 95.1% of my funding goal! Read the latest blog post and DONATE today!

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

alexkidman, to running
@alexkidman@aus.social avatar

Wow. Now at 85% of my distance goal and 91.5% of my fundraising goal for - would love for your donation to put me over the 100% level (hint, hint) https://www.themay50k.org/fundraisers/alexkidman/the-may-50k-2024

pseudonymsupreme, to MultipleSclerosis
@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.

SubtleBlade, to MultipleSclerosis
@SubtleBlade@mastodon.scot avatar
swisslet, to MultipleSclerosis
@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, to MultipleSclerosis
@tosbourn@masto.ai avatar

I visit the Multiple Sclerosis subreddit every so often and it is terrifying how many Americans have stories about their doctors saying things like;

  • research these drugs and pick one
  • we can’t offer this unless insurance
  • try no drugs and we can check in again later

Anything that moves socialised healthcare closer to the US model needs to be set on fire.

tomkindlon, to MultipleSclerosis
@tomkindlon@disabled.social avatar

Detailed report now available for free for:

Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: Proceedings of a Workshop

https://pubmed.ncbi.nlm.nih.gov/38648305/

@longcovid

@mecfs

neurontosomething, to books
@neurontosomething@mas.to avatar

Something read and reviewed, and something reviewed and published (and read, hopefully)

https://neurontosomething.wordpress.com/2024/04/27/my-brain-citation-needed/

DenisCOVIDinfoguy, to MultipleSclerosis
@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"

@auscovid19

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

tomkindlon, to MultipleSclerosis
@tomkindlon@disabled.social avatar

(Not a recommendation)
Note: Uses ME/CFS patients as controls

"The presence of attentional & interpretation biases in patients with severe MS-related fatigue"

Free:
https://kclpure.kcl.ac.uk/portal/en/publications/the-presence-of-attentional-and-interpretation-biases-in-patients

Dutch & UK biopsychosocial proponents join forces

@multiplesclerosis @mecfs

DenisCOVIDinfoguy, to MultipleSclerosis
@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.

Omega_Scribet, to Type1Diabetes
@Omega_Scribet@mastodon.social avatar

The University of Chicago:

'Inverse vaccine” shows potential to treat multiple sclerosis and other autoimmune diseases'

"has shown in the lab setting that it can completely reverse autoimmune diseases like multiple sclerosis and type 1 diabetes — all without shutting down the rest of the immune system."
1/n





RainofTerra, to MultipleSclerosis
@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!

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

pseudonymsupreme, to MultipleSclerosis
@pseudonymsupreme@pnw.zone avatar

March is 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. 1/4

pseudonymsupreme, to MultipleSclerosis
@pseudonymsupreme@pnw.zone avatar

Fuck. My shows new lesions. I hate so much. I’m so disappointed right now.

TarValonNet, to fanfiction
@TarValonNet@darkfriend.social avatar

Our focus for March is Multiple Sclerosis. Join the Servant of All team as we discuss the challenges many face receiving proper diagnosis and treatment, as well as ways to support those who cope!

https://buff.ly/437uYeD

swisslet, to MultipleSclerosis
@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.

hannu_ikonen, to mentalhealth
@hannu_ikonen@med-mastodon.com avatar

Let's Get down to business! To defeat, the autoimmune encephalitides!

Autoimmune Encephalitis is the next topic I will cover.

As much as I want to skip it because its by a UCSF presenter, I'm sure they are not all scourges and shills like Vinay Prasad MD, Monica Gandhi MD (who are in part funded from Enron billionaire money from John Arnold, whom Forbes has referred to as "a disgraced former executive of Enron.")

hannu_ikonen,
@hannu_ikonen@med-mastodon.com avatar

Richard Jin MD/PhD presenting along with a pediatrician at NIMH, Dr. GenaLynne Mooneyham MD

His primary thesis is neural-immune interactions that may influence neurodevelopment & psychiatric disorders, so more in the lifespan but who knows, possibly some relevance to , , and post-viral neural disorders such as

peterdeppisch, to MultipleSclerosis

Can 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."

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

Very pleased to dip under 30 mins at today. This is more than 8 minutes slower than my PB, but as my 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.

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