Long time chronic illness sufferer, Rachel Wynne, finds herself using her experiences and talents to try and help others not have to struggle through life with chronic illness like she did.
Well, if anything good came from the pandemic,
it is that now most people understand our distrust of medical institutions.. 😏
Now we can finally get empathy from most people about gaslighting doctors and nurses. Because now they know we are telling the truth.. 💜
“The proportion of adults who agreed they had ‘a lot of trust’ in physicians and hospitals declined from 71.5% in April 2020 to 40.1% in January 2024.”
They think they did satire here… 🙄😏
“It’s always seemed that both the brain and the muscles must be involved in diseases like chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), and long COVID. The question has always been how? A study just showed up could answer that question.
It originates in the brain, can be triggered by infection, is associated with neuroinflammation, and impacts the ability of the muscles to produce energy (!). The new finding has birthed something called the brain-muscle axis.
We’ve known for decades that the muscles are sending messages to the brain and affect things like energy metabolism, glucose metabolism, inflammation and bone formation.
In this study, the authors introduced a variety of triggers (bacterial infections, the SARS-CoV-2 protein ORF3a, and the neurotoxic protein Aβ42 found in Alzheimer’s) to produce neuroinflammation in the brains of the ubiquitous fruit fly and mice.
Note the interesting disease choices – Alzheimer’s and long COVID – two diseases that are rarely mentioned together but both of which feature what the senior author of the study called “deep muscle fatigue“.
Each animal responded to the introduction of these substances with a clear increase in muscle fatigue and reduced endurance. Introducing these stressors into the brain triggered increased levels of reactive oxygen species (ROS), or free radicals which then triggered the production of the IL-6 cytokine, which then found its way to the muscles, where it turned on genes that turned down energy production.
For the first time, inflammation in the brain was shown to reduce muscle mitochondrial activity and endurance dramatically. No exercise was needed to shut down the muscles. All it took was neuroinflammation.
Noting that a lack of motivation does not play a role in this process, the senior author of the study stated: “This is more than a lack of motivation to move because we don’t feel well. These processes reduce energy levels in skeletal muscle, decreasing the capacity to move and function normally,”.
Noting the large energy needs of the muscles, the authors proposed that when the brain is inflamed it may limit energy production by the muscles to give the brain more resources.
The two key factors needed for this process to occur – neuroinflammation and increased IL-6 levels – have been found in ME/CFS, fibromyalgia, and long COVID.
The authors proposed that IL-6 and Stat inhibitors could help, Avindra Nath has also proposed using JAK-STAT inhibitors in ME/CFS.
The good news is that a way to explain how neuroinflammation can directly impact energy production in the muscles has been found. The finding has received a lot of attention, and will undoubtedly hook in some Alzheimer’s researchers, and will undoubtedly be followed up on. The long-COVID/ME/CFS/fibromyalgia research world just got a bit richer and is bringing new potential treatment options to the table.”
https://www.healthrising.org/blog/2024/07/22/neuroinflammation-muscles-long-covid-chronic-fatigue-fibromyalgia/
"ME/CFS and Long COVID Study Suggests Immune Cells Robbing the Body of Energy"
Link in image:
https://www.healthrising.org/blog/2024/05/18/chronic-fatigue-syndrome-long-covid-energy-sink/
From American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES) July
e-newsletter
They concluded that “a fundamental disruption in amino acid metabolism and energy metabolism” involving, in particular, the breakdown and conversion of alanine and aspartate has occurred in both ME/CFS and long COVID.
The low alanine finding had a startling tie-in with both ME/CFS and long COVID: alanine plays a key role in getting rid of ammonia, and studies suggest that ammonia – a byproduct of anaerobic energy production – may be building up in the bodies of ME/CFS patients and causing fatigue, brain fog, etc.
The authors proposed that using the L-ornithine plus L-aspartate (LOLA) supplement regimen “could potentially rescue the metabolic changes observed in ME/CFS patients” (!). LOLA is a supplement combination that is readily available and has been used for decades to reduce ammonia levels in people with liver problems. That’s intriguing given that some researchers believe the liver is involved in ME/CFS. (See Kalafatis’s recovery story).
Note that the authors do not suggest that L-alanine and L-ornithine supplementation will cure ME/CFS. They suggest that doing so “could potentially mitigate some of the core symptoms”; i.e. make less severe some of the core symptoms.
L-aspartate has been used to increase endurance and reduce fatigue. It has also been shown to decrease lactate and increase fatty acid oxidation – which appears to be impaired in ME/CFS. It may also be able to increase nitric oxide levels, improve blood flows, and reduce ammonia levels. L-ornithine helps eliminate ammonia and fatigue-causing metabolites in the muscles.
Given the current interest in oxaloacetate in ME/CFS and long COVID, L-aspartate, interestingly, is converted into oxaloacetate outside the mitochondria, and once inside the mitochondria, oxaloacetate is converted back into aspartate. One wonders if using LOLA in combination with oxaloacetate could be helpful.
In conclusion, the study was too small (25 MECFS patients) for us to assume that it was representative, but the fact that its core findings were validated in separate tests within the ME/CFS group, and then in the long-COVID group, suggests that it might very well have legs. LOLA’s known ability to remove ammonia, possibly improve endurance and blood flows, and liver functioning as well, and its connection to oxaloacetate makes it an intriguing substance indeed.
Congratulations to the Open Medicine Foundation for helping to fund this study.
https://www.healthrising.org/blog/2024/06/24/metabolic-changes-chronic-fatigue-syndrome-long-covid/?fbclid=IwZXh0bgNhZW0CMTEAAR3lee_gESPCjcZIQ_NaIP3L8sxHlOMuJsqNBItNt1g4B4RovByxRF0ZkDQ_aem_SBUCL0ExNSAlhThMV3DwBg
New from Sweden:
Successful Subcutaneous Immunoglobulin Therapy in a Case Series of Patients With /
Free fulltext:
https://www.clinicaltherapeutics.com/article/S0149-2918(24)00131-0/fulltext
Interesting though a placebo-controlled trial would be more convincing.
People who saw the Dr Nigel Speight talks that the Irish ME/CFS Association recently arranged will know that he is excited by this approach, having used it himself sometimes. Unfortunately it is very, very difficult to access it for ME/CFS in Great Britain or Ireland at the moment. I recall that the UK guidelines for IVIg effectively blacklisted it for ME/CFS in the 2000s recommending CBT instead!
🎥👉 Gold Tips and Critical Advice for Newbies
youtu.be/T0XJWmDiybE
Have you ever heard these solid gold advice before, or were you previously just given fake fools-gold advice from a health scammer?
Only one way to find out: Watch this video! 😘
OMG this is so sadly 100% accurate of how the American insurance and healthcare system works…! 😂🥲🥲🥲😰
https://youtu.be/VAfy26xs6e0?si=Ba-JOb45985xWGMs
Let's navigate the American Healthcare System!SOUTH PARK: THE END OF OBESITY is now streaming on Paramount+!Stream full episodes of South Park at https://sou...
Hopefully someday there will be enough science to actually help us get out from the hell that is …
——————-
From the article:
“”Found – the Master Immune Switch in the Brain: An ME/CFS and Long COVID Perspective
A black swan event" - an unanticipated event that nevertheless ends up explaining much recently occurred.
Researchers discovered a circuit in the brainstem that profoundly affects the amount of inflammation in the body. Manipulating the circuit could help treat everything from autoimmune to inflammatory to "psychosomatic" conditions. (The authors specifically mentioned long COVID.)””
[https://www.healthrising.org/blog/2024/05/25/master-immune-switch-brain-chronic-fatigue-long-covid/](https://www.healthrising.org/blog/2024/05/25/master-immune-switch-brain-chronic-fatigue-long-covid/)
Yeah. Everyone knows that mice are so suggestible..! 🙄😜
https://x.com/useless_priest/status/1790763778281230513?s=46&t=pyml_Wi6AhNCnLj95b4ZMA
MER OMTALE AV NIH-STUDIEN
I år er det 55 år siden ME ble klassifisert under nevrologiske sykdommer i WHOs diagnosesystem (1969). Mange har motarbeidet det, og da er det ekstra stas at Neurology Today skriver om NIH-studien! 😊😊
🟥 "This clear characterization of ME/CFS as a neuroimmunologic condition from an NIH research team involving more than 75 multidisciplinary scientists and clinicians across 15 institutes stands in marked contrast to the experience most people with ME/CFS have had with the health care system. (...)
🟥 “Today, newer imaging methodologies show ongoing and continuing inflammation in the brain and have been able to give concrete evidence that ME/CFS is a physiological disease, not something that is simply psychiatric or psychological,” she continued." (Vicky Whittemore, NINDS)
🟥 “Nonetheless, the NIH study clearly shows how much is altered in these individuals, with respect to neurologic, metabolic, autonomic, and hormonal pathophysiology,” Dr. Blitshteyn added.
🟥 “Based on their data, ME/CFS is clearly a central nervous system disorder, and the associated fatigue is defined by autonomic dysfunction unrelated to psychological or psychiatric causes.”
https://journals.lww.com/neurotodayonline/fulltext/2024/04180/are_myalgic_encephalomyelitis_chronic_fatigue.7.aspx
Merch is 10% off with code SPREADTHELOVE10 until this Thursday!! Take advantage of this offer now!
https://teespring.com/stores/survival-of-the-fatigued
The dang website wouldn’t stop reloading for me to even be able to read the article ( https://bit.ly/41fY0YA ),
but hey- at least the news is noticing us. 🤷♀️
Source: https://www.pnas.org/doi/10.1073/pnas.2302738120
Dr. Paul Hwang, NHLBI: "...people with ME/CFS..they don't use up as much oxygen from their blood as normal people. They also make more lactic acid...their cells have trouble generating & using energy effectively."
"We do not believe that WASF3 is the cause of ME/CFS, but rather is one of the factors mediating energy deficiency in muscle. We need to see if we can target WASF3 in ME/CFS patients and fix the bioenergetic deficit that we have described."
So tragic that he developed Parkinsons , Graves and Crohns diseases on top of ME. But that seems to be what happens to us.. We collect autoimmune diseases as though they were highly collectible..
Geelong Advertiser is featuring Steven Sommer's touching story today. Listen to more from Steven and Tori in their podcast with Anne Wilson here: https://www.emerge.org.au/series/emerge-australia-imagine-podcast-series/
💜We’ve moved channels!!!💜
👉🏿Resubscribe here:
www.YouTube.com/
I am so grateful that I am able to use my gifts AND curses to help others going through the same ordeals.😊💜
The first video is commenting on this video:
🎥 : Why You Shouldn't Put Off Getting One
https://youtu.be/Ce_MJxqa3p0
The second comment is commenting on this video:
🎥 10 Early Warning Signs
https://youtu.be/g8wgSz7STwk
Watch here: https://youtu.be/mxG0UHMhTlI
In this video I give the Amazon products that I find are the most helpful with my chronic illnesses, especially during winter and travel.
You get to also take a peek into my world as a parrot mommy with an angry parrot child, Biki, acting up for attention..
I Tried The Oldest Cure in the World For Chronic illness Recovery:
Hot Springs at Ojo Caliente Spa
🎥👉🏿 Works For Skin and Digestive Issues, CFS Not So Much..
https://youtu.be/vG4H4CHjiHM
In the 1500's the Spanish went on a quest for the fountain of youth!
Now, since modern medicine has so far failed me with my chronic illnesses,
I decided to test out the literal fountain of youth that ancient and modern people all over the world have used to cure their health problems: Thermal Mineral Hot Springs!
Happy 1000 subscriber special! ❤️
I’m also on Twitter!
👉🏿 www.Twitter.com/FatigueTheory
Helping others who have severe chronic illness, one video at a time:
www.YouTube.com/c/SurvivaloftheFatigued
Hey Survivors!
Just FYI for those of you in the Survival Of The Fatigued Community chat:
👉🏿For whatever reason I am not allowed to do anything other than moderate the chat. 🤷♀️
Why they would let my page have a chat, and then not allow me to participate in that page is just silly… 🤦♀️ And I really don’t feel like making a new personal profile when the page profile is enough for now (not to mention it could get confusing).
But you can always message me on Instagram or through the Facebook messenger, or with my public email. SurvivingFatigue(at)gmail.com .
I’m slow at responding, but I always do my best.
P.S.: someday I’d love to get some fan art of my parrots to show off 😜
Hey Survivors,
I honestly think the mystery bruises are the glue that connects all of us with chronic illnesses. LOL😂
Did I run into something and forget?
Or did it just appear due to some sort of deficiency?
Who knows! 🤷🏻♀️
And if you ever worry it might possibly be dementia, I highly recommend you check out this (older) video I made to set your mind at ease!:
📽 👉 Is it Brain Fog or is it Dementia? https://youtu.be/n5j6NwdAA0o
Keep on surviving, my friends!💪💜
While those of us with chronic illness
and chronic pain are basically super hero’s
with our super human pain tolerances…
Well… I still hate when people act as through my sickness is somehow an inspiration,
when in reality it’s just that those
grief tourists like using me
as their inspiration p**n..
🎥👉🏿What to Say to an Annoying Grief Tourist / How Grief Tourism Affects the MECFS Community
https://youtu.be/s0cxvkWuw4o
**n
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A perfect representation of what it’s like living with brain fog! #brainfog #severechronicfatigue #CFS #fibrofog #fibromyalgia
SOTF Merch unboxing - Flareup but yay! 😀🥳😴
Like+Subscribe on YouTube 👉🏿 https://youtube.com/shorts/Z8wxsRy44bI?feature=share Having flareup .. #BrainFog Silly Singing - Coffee Mug Survival of the Fatigued Merch!😬
New Survival of the Fatigued merch I just got in the mail that I’m gonna use to store my pain management things in! ❤️👍🏿💪🏿 I was pleasantly surprised with just how BIG this bag was, and that there was an inside pocket with a snap! Wow! Really good quality!! 😍 Find it here while supplies last: https://survival-of-the-fatigued.creator-spring.com/listing/green-survival-of-the-fatigued?product=526
Crossing your legs is BAD?! Health tip for CFS/fibro doing heart rate monitoring! #heartrate #CFS #fibromyalgia #chronicillness #healthtips #pacing #fibro #tiktok #chronicillnesstiktok https://youtube.com/shorts/9XnhUvqkIO0?feature=share
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