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.

#MultipleSclerosis #HealthCare #NHS #Reddit

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
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
#PTLDS #multiplesclerosis @mecfs
#Lyme
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

neurontosomething, to books
@neurontosomething@mas.to avatar

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

#books #reviews #systematicreviews #multiplesclerosis

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

#autoimmunedisease
#diabetes1
#type1diabetes
#multiplesclerosis
#celiacdisease

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

#AesSedai #ChronicIllness #Fandom #Fansite #MS #MultipleSclerosis #MultipleSclerosisAwareness #ServantOfAll #TarValon #TarValonNet #TheWheelOfTime #TheWhiteTower

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.")

#Rheumatology #Autoimmune #MentalHealth

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 #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, 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.

Ruth_Mottram, to MultipleSclerosis
@Ruth_Mottram@fediscience.org avatar

One of my most beloved relatives suffered from the devastating disease . 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 are about so much more than MS - thosands of years of human , and indeed who we are in Worth a read (I fear it may be paywalled though)

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

ScienceDesk, to MultipleSclerosis
@ScienceDesk@flipboard.social avatar

Ancient DNA helps explain why northern Europeans have a higher risk of multiple sclerosis than other ancestries, CBS News reports:
https://www.cbsnews.com/news/ancient-human-dna-northern-europeans-multiple-sclerosis-risk/

#dna #multiplesclerosis #genetics #europe

tosbourn, (edited ) to MultipleSclerosis
@tosbourn@masto.ai avatar

Good news fellow MSfolk

Just got an ad for a patch to heal MS symptoms.

Don’t worry, they have nanocrystals delivering 190 therapeutic signals.

There are no side effects either (which is the one thing I would believe!)

MsMerope, to MultipleSclerosis
@MsMerope@sfba.social avatar

not sure how to tag this



We were contacted by a local agency that would like a presentation on educating their clients on how to prepare and stay safe during an emergency

"Many of the patients are in wheelchairs or use some sort of mobility assistance and a significant amount of them are seniors."

We are considering focusing on three topics:

  1. "72 hour kits" with attention to things like backup generators/inverters, extra medications and/or equipment, and portability.

  2. sheltering in place

  3. planning for evacuation

We are waiting to hear if these folks are in licensed care homes of any sort (in California licensed facilities would be required to have emergency plans in place)

Would there be anything else that we should cover?

We'll be taking some info from the Red Cross and FEMA.
Such as what's found here:
https://www.ready.gov/disability

boosts appreciated

eLife, to MultipleSclerosis
@eLife@fediscience.org avatar

A new assessment of visual working #memory using continuous measures reveals fresh insights into the origins of memory deficit in #MultipleSclerosis. https://elifesciences.org/digests/87442/fading-memories?utm_source=mastodon&utm_medium=social&utm_campaign=organic

pseudonymsupreme, to MultipleSclerosis
@pseudonymsupreme@pnw.zone avatar

Feeling pretty solid and human about 48 hours after my infusion for . Here’s to hoping I stay relapse free for another six months!

pseudonymsupreme, to MultipleSclerosis
@pseudonymsupreme@pnw.zone avatar

I fucking hate IV steroids so much. It’s like being on drugs, but skipping straight to the shitty come down, complete with existential terror and regret.

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