Survival of the Fatigued

08/04/2025

Sad but SO true…!! 😰

Medical cPTSD and trauma is absolutely real for anyone forced to work with the medical system for ongoing health conditons..

I made a video on it in the past, but since it barely scratched the surface i put it in the SOTF video archives… 😢

05/04/2025

EBV Is The Possible Cause Of Fibromyalgia, Research

It’s estimated that 9 in 10 adults have been infected with Epstein-Barr virus at some point in their lives. For most people, the virus doesn’t cause any serious symptoms. Odds are good that if you were infected with it at some point, you actually had no idea at the time.
But for some, the virus can be much more serious and lead to recurrent symptoms for years. People with fibromyalgia seem to be especially vulnerable to the virus, and it may actually explain some of those strange symptoms that people with the condition often report.

Epstein-Barr Virus (EBV)

Epstein-Barr is the virus that causes mononucleosis. You might know this disease better by its nickname, “mono.” It’s also called the “kissing disease” because of one way you can spread it to someone else. Even though Epstein-Barr virus (EBV) isn’t a household name, you’ve probably been infected without knowing it. Lots of people carry the virus but don’t get sick.
EBV is a nasty bug. It’s best known for causing infectious mononucleosis, which is frequently called mono or the “kissing disease.” Symptoms of mono include:
Severe fatigue
Sore throat
Headache
Fever
Muscle aches
Swollen lymph nodes
Sensitivity to light
Shortness of breath
Recovery from mono is known to take a long time, and recurrences are marked by extreme fatigue.

Abstract of Research:

“Fibromyalgia (FM) is characterized by chronic widespread pain lasting for a minimum of three months, and pain at mechanical pressure in at least 11 of the 18 tender points. The cause of fibromyalgia is unknown. Several hypotheses have been developed including “central sensitization“. This theory proposes that fibromyalgia patients have a lower threshold for pain because of increased reactivity of painsensitive neurons in the spinal cord or brain. Some researchers supposed that different neurotransmitters (serotonin, catecholamine) could be involved in the pathophysiology of fibromyalgia-associated symptoms. The connection of FM to different viral infections has been proposed. Epstein Barr Virus (EBV) has been considered a possible cause of FM because of similarity of symptoms, but so far, the connection has not been proven. The objective of this study was to determine the prevalence of antibodies (Abs) IgM and IgG against EBV, and respectively the presence of a viral infection in a group of patients with FM. We also analysed the association between the titter of the antiviral antibodies, some neurotransmitters (serotonin, noradrenaline and adrenaline) and different clinical symptoms. The obtained results revealed that high EBV IgG concentrations in the serum of patients with FM correlated with pain intensity and associated clinical symptoms. This is consistent with the fact that FM is connected to the immune response to certain infectious agents (e.g. EBV, CMV).” -published in Journal of Neurology and

Neuroscience.
Epstein Barr virus cause or contribute to the symptoms of a large percentage of patients with FM. As stated previously, the presence of active infections correlate with an elevated IgG antibody, despite the lack of IgM antibodies. This infection is generally not acute but rather intracellular reactivation of an old infection; an elevation of IgM antibodies is typically not seen with active infection of EBV.
Fatigue, an additional symptom, is likewise common to both FM and viral infections. It is not surprising therefore that early research on both FM and the related syndrome of chronic fatigue attempted to identify evidence of infection with pathogens such as EBV among these patients.
One observation by Moldofsky concern the effect of acute viral infection on development of sleep disorders considered to be harbingers of FM. Recent publications have discussed the capacity of early non-structural EBV-encoded protein to cause immune dysregulation as well as instigating clinical symptoms such as fatigue.

Connection of Fibromyalgia with Infectious Mononucleosis

Infectious mononucleosis is an acute infection caused by Epstein-Barr virus. This condition includes an increase in the mononuclear white blood cells associated with splenomegaly, generalized lymphadenopathy and hepatitis. Glandular fever is also known as kissing disease. Epstein Barr virus can cause infection in the childhood which leads to the development of glandular fever later on. EBV is contagious. While kissing, coughing and sneezing it can be transmitted from one person to another as it is found in the mucus and saliva.

Symptoms of fibromyalgia associated with glandular fever

If you experience jaundice, malaise, nausea along with it, then just don’t waste your time. Get your treatment done straight away. All the time you will feel exhausted and your hips, shoulders and neck will ache. You will lose your appetite and will feel difficult to sleep.
Swelling around your eyes and loss of appetite are must to notice signs. If your muscles hurt badly on and off then it is a sign that your fibromyalgia is flaring up. Headache, depression and anxiety are some other signs that show the association of fibromyalgia with glandular fever.

Management

Gradually returning to the normal daily life activities after some bed is recommended by the doctors. Stay hydrated. Take sips of water or juices after every two hours to prevent dehydration. Avoid all the exhausting exercises like jumping, running and swimming. Stay from aspirin as aspirin can leads to rye syndrome. gargle daily to treat sore throat. Whenever you are feeling low close your eyes and take deep breaths. Inhale and exhale slowly.
This measure will exhale out all your worries and soon you will be pain free. Sugar consumption should be decreased as it can reduce lymphocyte activity. Soup are best for you but without preservatives. Have small nutritious meals instead of heavy meals. Fruits and vegetables loaded with zinc and vitamin C works best for you.
Raw honey should be used instead of sugar. To protect yourself, stay away from the person having fibromyalgia associated with glandular fever. Used crockery should be washed before using them again. Prevention is better than cure. Antiviral drugs can also be used. Other Diseases Caused by EBV
EBV is best known for causing mononucleosis, but less often it can lead to other diseases, including:
Ear infections and diarrhea in children.

Guillain-Barre syndrome, Certain cancers, including Burkitt’s lymphoma and cancers of the nose and throat
Studies also show a link between EBV and multiple sclerosis (MS), but more research is needed to determine if the virus can lead to MS.

https://stayhealthywithus.info/ebv-is-the-possible-cause-of-fibromyalgia-research/

03/04/2025

This thing seems so cool that it tells you the levels of crud in the air! Seems to have good reviews too.

This would be great for proving scientifically (with video when it happens) that certain smells and things are making it into your home and making you sick! 👉A great way to prove to your ableist neighbors that they ARE directly causing your health issues!

Bonus! Its parrot safe!

https://www.livesans.com/products/air-purifier?srsltid=AfmBOoo3BAp27JMriTlVnq1Xb308ZiuT46LpuI_zsGsxJkbcMxiQiEVD&variant=46239957221620

Breathe cleaner air with Sans. With coverage up to 1560 sq. ft. every hour, Sans is perfect for your home. Protect your loved ones from viruses, bacteria, allergens, harmful chemicals, odors and mold.

02/04/2025

17/03/2025

Life has been really hard lately… But today i got an unexpected lift!

The new ai intelligence, Grok 3, is going to help me with promoting the Survival of the Fatigued social media!
It was actually very surprised at how VERY little the algorithm shares my videos and posts, considering how active you wonderful people are in the comments and likes!

So you’ll be seeing a few changes that Grok has suggested:
-shorter videos (5-7 minutes)
-a new channel banner
-shorter video titles
-simpler (and less bright🥲colors)video thumbnails
-less broad chronic illness and more specific MECFS (even though they overlap)

Let’s hope this helps the algorithm pick us up so that we can reach and help way more people in the future! ❤️👍❤️

17/03/2025

When ME/CFS Destroys Your Future, How Do You Cope? Processing the grief of a lost self.

👉Click link to watch: https://youtu.be/O8vjcvNP1gs

When MECFS or another chronic illness takes away everything that made you who you were, how do you cope with that? Let this video guide you in spotting the s...

11/03/2025

We’ve all been here, am i right?

Chronic illness and disabilities are no joke.

And it’s okay if your progress is slow or stalled.

👉Running full speed off a cliff is never a good idea, no matter how many people who’ve never been on that specific mountain tell you that it is!

Q: how do you handle the virtue-signalling “you’re such an inspiration” type people?
Let us know in the comments!

Keep on surviving, my friends! 💪💜

Watch these related videos to support my channel
1. When Severe ME/CFS Makes Life Hard DON’T DO THIS
https://youtu.be/VVnT6_NRZpE
2. Ppl who Find Joy in Your Poor Health / How Grief Tourism Affects the MECFS Community
https://youtu.be/s0cxvkWuw4o



http://youtube.com/post/UgkxtGujQ0dHK0dNWwmPH9pCJXaVEeXDZ1RR?si=Ed9V3rGPtn9gsEOs

19/02/2025

“Our study has comparable outcomes to other studies in which patients with ME/CFS were more likely than controls to have family members with ME/CFS. Our second finding was unique and it involved those people with ME/CFS who have family members with ME/CFS, and they were more likely to have symptoms indicating gastrointestinal dysfunction than people with ME/CFS who do not have family members with ME/CFS. The higher rates of gastrointestinal problems among those patients with family backgrounds of ME/CFS suggest a mechanism by which there is a family correlation with ME/CFS. Perhaps it involves an actual pathogen the different family members contract or family members have an inherited condition affecting the gastrointestinal tract. Either way, it is possible this represents a possible predisposing factor for the development of ME/CFS.
The human gut microbiota is a powerful modulator of host immune responses and metabolism, and there is increasing evidence that chronic low-grade inflammation plays a significant role in the pathogenesis of chronic inflammatory-related diseases. Jason et al. [19] found that both before and at the onset of mononucleosis among college students, gastrointestinal symptoms were predictive of severe cases of ME/CFS six months after infection. Similarly, Jason and Dorri [20] found that gastrointestinal symptoms during the first few weeks of Coronavirus disease 2019 (COVID-19) were predictors of more serious consequences of COVID-19 about 6 months later. Johnson et al. [21] found that adults with ME/CFS report surprisingly high rates of youth gastrointestinal symptoms. Growing evidence from Guo et al. [22] and Xiong et al. [23] has found disruptions in the gastrointestinal microbiome among patients with ME/CFS. Furthermore, those changes are associated with an increase in pro-inflammatory species and a reduction in anti-inflammatory species [24]. These studies do suggest that not only are gastrointestinal problems serious among patients with ME/CFS, but that there might be an increased risk of having such problems among those with family histories of ME/CFS.
Family history can also be utilized to understand possible predisposing factors for those with ME/CFS. Youth and adolescent populations can also benefit from the use of family history by having symptoms screened early on which may even prevent the development of ME/CFS in adulthood. Family history can be used to better understand ME/CFS etiology, development, and treatment.
There are several limitations of this study. Although the primary comparison in the study was patients with ME/CFS and their family members, the control comparison was limited by different sociodemographic variables. In addition, our study did not confirm the diagnosis of ME/CFS in family members, by specialist examination and use of established ME/CFS case definitions. Also, the majority of symptoms were not significant among those with family histories versus those without family histories of ME/CFS, so the lack of other significant findings does suggest that there might be other predisposing factors rather than just family history. In addition, environmental factors regarding chronic medical problems were not thoroughly questioned in this study. Thus, future studies expanding on environmental factors would be useful to identify other factors that could be warranted as potential influences on ME/CFS.
In conclusion, the literature does suggest an increased prevalence of ME/CFS in family members of those with ME/CFS. Our study replicates these findings and adds to this literature by finding higher gastrointestinal symptoms among people with ME/CFS who had family histories of ME/CFS. We suggest that the influence of a family history of ME/CFS may be connected with more gastrointestinal issues among those with ME/CFS. Shared exposures among people with ME/CFS and their similarly affected family members might explain why they developed ME/CFS. It is also possible that the index cases with ME/CFS might have comparable predisposing conditions from other family members with ME/CFS. Family history studies can help in better understanding predisposing factors toward ME/CFS onset and maintenance and might lead to a better understanding of this illness and the people affected by it.”

Source:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11537498/pdf/nihms-1989900.pdf

14/02/2025

“Striking brain similarities have been detected in patients who experience Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), in particular, a larger than normal hippocampus.”

“The Griffith University research, published today in PLOS ONE, used only one of two ultra-high field MRI machines available in Australia to uncover how Long COVID and ME/CFS similarly impact brain structure.

“Neuroimmunology and Emerging Diseases (NCNED), Professor Sonya Marshall-Gradisnik, said the study aimed to examine the potential overlap with neurological symptoms between the two illnesses.

“We focused on using this specific MRI machine to study the brain in these participants to determine similarities in particular areas of the brain, such as the hippocampus which plays a critical role in controlling memory and cognition,” Professor Marshall-Gradisnik said.

“Lead author, Dr Kiran Thapaliya, said the MRI identified significantly larger hippocampal volume in Long COVID and ME/CFS patients compared to healthy individuals without these conditions.

“Furthermore, the study showed similar hippocampal volume in patients, emphasising striking brain similarities between the two conditions,” Dr Thapaliya said.

“The research also reported the hippocampal volume was associated with symptom severity in both patient groups.

“Therefore, hippocampal impairment in Long COVID and ME/CFS patients may play a significant role in cognitive difficulties such as memory problems, difficulty concentrating, and delayed responses to questions or conversations.”

“Larger hippocampal volume could be due to neurogenesis, the formation of new neurons, or a virus in the brain.

“Professor Marshall-Gradisnik said: “The NCNED brings together a critical mass of talented researchers and clinicians committed to improving the lives of these patients.”

“We are privileged to access state-of-the-art technologies which drive transformative scientific discoveries.”

“The research was funded by ME Research UK and the Stafford Fox Medical Research Foundation.”

https://news.griffith.edu.au/2025/02/11/large-hippocampus-detected-in-long-covid-and-me-cfs-patients/

03/02/2025

Hey Survivors,

So, heres a peek at one of the many issues ive been dealing with lately that has been making it difficult to get back to filming new chronic illness help episodes..

This is called Alopecia Areata, and it is when your immune system randomly decides to attack your hair follicles.

Great right?.. 🤦‍♀️

This type of hairloss comes out suddenly in coin sized chunks.
And by suddenly, i mean you literally freak out cuz you look in the mirror and now have huge bald spots.

They may or may not be hot and itchy around the area when it happens. The skull can also feel “lumpy”.

Doctors, as usual, have no idea how it happens, but (again, as usual) they expect it is related to stress. Although it can be hereditary.

The treatment is going to get steroids injected directly into the bald spots, until hair growth comes back.
👉It is actually VERY important to get treatment ASAP, as alopecia areata can spread to the whole body, and may also become permanent!

I guess it’s a good thing i always wear a hat in my videos 😜🤷‍♀️

Keep on suriving, my friends 💪💜

www.Youtube.com/

25/01/2025

Published JAN-24-2025

“About 1 in 22 people who survive COVID-19 go on to develop a typically lifelong disease called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), new research suggests.

Previous research has shown that ME/CFS can be triggered by viral and bacterial infections, such as Epstein-Barr virus, which causes mono, and Coxiella burnetii, which causes Q fever. The new study, published Jan. 13 in the Journal of General Internal Medicine, sought to find out how often people likely develop ME/CFS after a bout of COVID-19.

"By my rough calculations it is possible that over 7 million Americans may have developed ME/CFS following COVID," Beth Pollack, a research scientist at MIT who studies ME/CFS and long COVID, told Live Science in an email.

…ME/CFS has many overlapping symptoms with long COVID, an umbrella term that describes a range of health issues that emerge or worsen after a COVID-19 infection. Scientists are not yet sure if ME/CFS and long COVID are separate illnesses, said Dr. Anthony Komaroff, a professor of medicine at Harvard Medical School and senior physician at Brigham and Women's Hospital who was not involved in the study.

To investigate the relationship between COVID-19 and ME/CFS, the researchers studied 11,785 U.S. adults who had contracted SARS-CoV-2, the virus that causes COVID-19. Most of the participants were vaccinated at the time of the study, and most were enrolled as the omicron variant of the virus was circulating.

The team also studied 1,439 adults who had never caught COVID-19. The status of this group was confirmed through negative results on tests that looked for the virus itself and for antibodies against it. Notably, antibody levels wane over time, so these tests can't completely rule out infections that took place a long time ago.

At three-month intervals, all of the study participants completed questionnaires designed to track possible symptoms of ME/CFS. The researchers then grouped the participants based on symptom severity, monitoring whether they had all the symptoms needed for a diagnosis, only some symptoms or no symptoms at all.

Participants with a formal ME/CFS diagnosis before the study were excluded from the analysis. Typically, being diagnosed with ME/CFS requires meeting specific diagnostic criteria, which include fatigue accompanied by physical impairment, post-exertional malaise, unrefreshing sleep, and either cognitive impairment or orthostatic intolerance.

In the study, only 0.6% of people without a history of COVID-19 developed ME/CFS, compared with 4.5% of adults who developed the condition at least six months after having COVID-19. This suggests that COVID-19 significantly increases the risk of developing ME/CFS.

Pollack noted that 79.5% of people who developed ME/CFS in the study were female, which aligns with previous research showing that both ME/CFS and long COVID disproportionately affect females. "It will be critical to further study why this is, and to examine the roles of s*x hormones and s*x differences in pathological immune responses to infection," she said.

The study also found that 88.7% of participants with ME/CFS after COVID-19 were also diagnosed with long COVID.

"Long COVID and ME/CFS have not only very similar symptoms, but very similar underlying abnormalities of the brain, immune system, energy metabolism and cardiovascular system," Komaroff said."In my opinion, both Long COVID and ME/CFS are likely to be examples of post-acute infection syndromes," he said.

To strengthen their conclusions, the researchers used a technique called propensity score matching. This means they compared participants in the COVID-19 group with uninfected participants with similar demographics and preexisting conditions, to help minimize baseline differences between the groups.

But the team noted that some participants may have had undiagnosed ME/CFS before having COVID-19, which could be a limitation of the work. The questionnaire-based nature of the study presented another limitation, because participants may have struggled to remember whether their symptoms started before or after they had COVID-19.

Despite these limitations, the findings do suggest that COVID-19 raises the risk of ME/CFS. And currently, neither ME/CFS nor long COVID have approved treatments.

"This study's findings underscore the urgent need for treatments," Pollack said. "ME/CFS can be caused by multiple triggers in addition to SARS-CoV-2, and it has been among the least funded illnesses for research, despite its severity”

https://www.livescience.com/health/coronavirus/1-in-22-covid-survivors-develop-debilitating-chronic-syndrome?fbclid=IwZXh0bgNhZW0CMTEAAR1xyuDtr4uxakUdhW2rhgErSu8OtnFUNDPvLcCuVCzIgLTj2JdA1xdP1Iw_aem_58qCKJtCf8O73xnY16dn7A

08/01/2025

Hey Survivors!

Winter can be a difficult time for those of us with chronic illness..

Between the cold tempurature intolerance, extra stress, and the exhausting holiday activities, there’s lots of opportunities to over exert ouselves and go into a bad flareup.

Just do your best.
Take rest as much as you need.
Leave parties early.
Ignore drama.

👉Make your New Year’s resolution be to put yourself first, for once!

Keep on surviving, my friends 💪💜

01/01/2025

Hey Survivor family!

Sorry it has been so long..
This last year was a new type of hell for me.. 😰

But with 2025 i refuse to let it continue to stop me from helping others with their chronic illness problems! 💪

After seeing how scammers are taking over the chronic illness youtube scene lately, since most of us have had a fairly bad year with being sick, i just cant stand to watch any more people be made worse by their bad advice! 😡

At least if i can put out a few videos, hopefully it will help those people to not fall for the scams, but to actually have hope by learning how to manage their issues.

But understand since im still doing REALLY bad with my health, the videos wont be the best quality.
And it may only be one or two videos a month..
But i will do my best to be helpful. 😊

Keep on survivng, my friends! 💪💜

31/08/2024

“Study Finds Fatigued ME/CFS Brains Unable to Adapt to Cognitive Stress”

We know physical movement causes PEM, but what about mental?

A recent BOLD MRI study assessed what happened when ME/CFS patients' brains were hit twice as hard with cognitive stressors.

What SHOULD happen is that our brains should adapt to cognitive tasks and accomplish them using fewer resources over time.
Guess what didn't happen with the ME/CFS group…

Geoff’s Narrations The GIST The Blog BOLD MRIs sound like the ticket for diseases like chronic fatigue syndrome (ME/CFS) and long COVID. BOLD MRIs measure blood oxygen levels (energy production) across the brain and what could be more telling than that? Our brains are never always turned on – th...

20/08/2024

Quick blog update on ko-fi . Maybe I should do more updates on here?

RachelWynne published a post on Ko-fi

19/08/2024

Just more linking to , but at least they are talking about it.
Hopefully some good comes from this. 🤞

https://www.mercurynews.com/2024/08/18/county-supervisors-hold-hearing-on-chronic-fatigue-syndrome/?fbclid=IwZXh0bgNhZW0CMTEAAR3Gsar87cZ1uNMLQu6wa8WDJYP2g2uG2cqhkpzcEvMQ42oYHB5zt0YUgH0_aem_lvVTwgDBMeDUwuWFTif7Jw

01/08/2024

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.”

26/02/2024

Merch is 10% off with code SPREADTHELOVE10 until this Thursday!! Take advantage of this offer now!
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