Hi I'm Nia! I live with Ehlers Danlos Syndrome, Ulcerative Colitis, Chronic Migraines, Dysautonomia, and more.
I'm here to smash societal stigmas about chronic illness, chronic pain and disability. I make videos all about different health conditions and chronic illness, as well as aspects of ableism, accessibility and disability.
If you'd like to request a video on a particular topic - feel free to reach out and ask!
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Thanks for being here!
Disclaimer: This channel should not be used as a substitute for medical advice and care. I am an experienced patient but I am not a doctor or scientist. Always seek the opinion of a medical professional for advice and matters related to your health. Any videos published regarding research are a collation and presentation about referenced research I have discovered and read, not my own research.
Hi, Nia. Can I download the PowerPoint presentation used in this video? I am doing a research paper for University on EDS, and I need some example PowerPoint presentations to follow so that I can create one for my project. Thanks so very much for this information.
The only work I can do now is as a writer. Have had this for 36 years. It started with Hep C working as a nurse. The virus is cured but CFS stayed. Some days are functional, others, incapacitating. Over it.
The algorithm sent me here. Thank you. I also am ADHD and Autistic - late diagnosed, high masking. My gender, masking, societal and familial expectations on me have had a massive impact on my internalized ableism.
It’s not genetic, what is inherited is an aggressive strain of Epstein Barr Virus injected into humanity via vaccines over a hundred years ago. It’s the mycotoxins that the virus releases in its late stage that causes the connective tissue disorder.
My son had type 9 e d s it started off with his bladder for surgery he had dental problems, he was knocked knee , his elbow looked like he was dislocated, he had problems with his hearing and problems with his eyes and he had a big head .
My dear , you said you do not have M.E and its obvious. Someone with M.E cannot follow your video clip ,the reason is simple your narrative is too fast for the sufferers ,especially during an episode of brain fog ....On another note I have had M.E for the past 32 yrs after a viral infection the Epstein barr. (Glandular fever ).
As a guy with ADHD and ASD I definitely relate to feeling worthless because of doing less and feeling incapable of a achieving things because I often feel like I’m “not smart enough” I’ve been having lots of doubts about myself and low self esteem from being bullied and socially rejected in the past as a teenager.
The chronic fatigue is caused by having to tense your whole body up in order to keep yourself from dislocating or clicking painfully. It's from the extreme constant pain. It's from depression and how it affects your circulatory system. Your heart, blood, etc..
Pretty much all your organs are made of connective tissues, so everything from heart to liver, kidneys etc. is somewhat weaker and takes longer to regenerate. When I was a child, I never played with other kids, my parents almost thought I had autism or something like that (which funnily enough I don't). I was just constantly tired and running around, jumping and fooling around just felt uncomfortable because of my joints. I wasn't diagnosed until much later, but I wish it happened sooner, maybe my social life wouldn't have suffered as much.
I have dysautonomia with a whole slew of secondary dx's from it, CIDP, CRPS, central pain syndrome, hyperalgesia and allodynia, insulin dependent diabetes, adrenal insufficiency (secondary) and I suspect that I developed ME/CFS about mid November '22 shortly after having surgery on my right wrist. In April '23 I had surgery on my left wrist and the symptoms that I suspect that are stemming from the possible ME/CFS (extreme fatigue even with sleeping easily 16hrs a day and especially after minimal exertion whether physical or mental, a drastic increase in my vertical, sound and light intolerances, increased pain, my heart rate and blood pressure issues are worsening and a weird effect I've been noticing is that with exertion I get anxious, quickly overwhelmed and then irrationally angry which makes my heart race, blood pressure skyrocket, feel quite short winded which all then cause full rib cage pain). Most days I spend nearly the whole day in bed. What saddens me is that I have to be able to manage to care for myself health wise because through bad experiences while in hospital where they are supposed to be able to provide care for me, I've frequently found that with my very unique health needs, many of my illnesses are made worse in the hospital because the doctors and nurses just don't have the understanding about how to properly care for/treat me.
I feel you with having a bunch of comorbidities all at once! I also really relate to your experiences with easily getting overwhelmed/heart rate rocketing etc and intolerances to light etc. (FYI I've not been diagnosed with ME, but with EDS, Fibro, Chronic Migraines, Dysautonomia and IBD.) I've heard a lot of people say they related to those dysautonomia type experiences with these conditions and it's very difficult to manage them, as you say there is little understanding within healthcare settings at the moment. I do hope you'll be able to have less fatiguing days in future or ways/methods which might improve it some. It's tough out here. Sending love your way.
@@the_chronic_notebook unfortunately for me my neurologist "gifted" me with the diagnosis of ME/CFS when he saw me on the 18th of July after I listed off all of the worsening symptoms that I have been having along with him reading the info from the symptom list from the CDC. I practically begged him if he had any clue as to if there could be a less severe chronic illness that could explain the symptoms but unfortunately there isn't. He did ask me about any potential things to mitigate ME/CFS and I told him that the only current recommended things to do is learn how to pace my body through trial and error along with just sleeping when my body demands it for however long it is. I also saw my sleep medicine specialist and he agreed with the ME/CFS diagnosis that neuro ended up giving me. He also said that many patients who have just one or more of the same conditions that are prior confirmed diagnoses frequently will also get a diagnosis of ME/CFS. He ended up saying that it is often caused not only by changes of the brain structure (and if a patient has CIDP that is affecting the brain structure then ME/CFS can develop more rapidly, particularly when CIDP exacerbations aren't properly treated) along with changes in how cells produce energy although there really isn't anything that can be done to correct this. Unfortunately, he said that for many patients who have this condition they need to learn how to pace out their energy expenditures and they must be able to get the sleep/rest that is demanded by the brain and body cause otherwise ME/CFS can and does land many patients in the hospital in a quasi semi-comatose state because the brain/body has depleted all available energy stores. So unfortunately, at least for now and the foreseeable future for me, much of my life will be revolving around either being in quite a deep sleep or be begging to be in that state.
Lyme disease was diagnosed two years after symptoms started. I had a positive lyme test. I've been treated with 30 antibiotics. I'm now left with ME/ CFS.
This generally a well researched video *BUT* there is a lot of conflating ME and CFS in this video, historically they are not the same thing and that history is important. ME has a history going back to the 1950's when it was named and first officially studied and with the historical diagnostic criteria, its a more severe condition. The name CFS is a working title from a working group in the 1980's that thought they were studding a condition that had not been studied, the criteria historically is watered down verses ME leading to other conditions being lumped in or misdiagnosed as CFS. The name itself of CFS and the watered down criteria has done great damage for decades to the patient community, basically destroyed the chance for a lot of substantive research, has led to the condition being trivialized, and has caused a substantial amount of the precious little research funds being diverted to generally useless phycological research. One of the doctors from that working has even publicly apologized for the damage that working group title being adopted has caused. I my opinion it's very important to at least note that history and the historical distinction between the two. Depending on what diagnostic criteria is used they can be considered independent conditions. Generally people with ME have CFS but, depending on criteria used, not everyone with CFS qualifies as having ME. Quite frankly that working group in the 80's has caused a huge mess for everyone.
A big part of the problem is when Psychiatry hijacked ME/CFS and denied a biological basis for the disease, diagnosed peopld with depression and use psychiatric drugs, CBT and graded excercise as treatments - which further disabled people. Dr Ron Davis and his team at Stanford are doing good research on this. His son has severe CFS/ME.
thank you for this video. I got more information from this than I have done from most sources, including unfortunately the NHS who are just offering graded exercise and CBT and are not really separating trauma based and post illness causes. I would recommend EMDR therapy for those suffering from PTSD induced CFS/ME.
I agree that the information and resources out there that are offered to patients are really lacking! It's really sad to see. I've heard a lot of good things about EMDR too.
@@the_chronic_notebook indeed. By the way, last month we also tried The lightening process, here in the UK. That has had a very positive effect improving the symptoms. Not for everyone, but has been positive in our case and most of the others in the group are doing better. All the best
I have CFS and Fibromyalgia. It is like having the flu 24/7. For years the fibro was my main issue, but in December 2021, I came down with a sore throat (wasnt covid, I tested and tested) and was couch ridden for several weeks. Afterwards the fatigue has been non stop and I rarely leave the house. I do try and visit my mother who has dementia and is in a local memory care facility but it can be two weeks between visits. It hurts to shower and even takes more energy than I seem to have. I have a fantastic doctor but nothing really helps. I did try marijuana which did help -but it isnt legal where I live. The laws really need to change if marijuana or any other drug that is currently illegal can actually help some people control pain, migraines, fatigue or any medical issue they are facing. Everyone deserves to live a life that isn't defined and restricted by pain etc.
Yes, it’s the only thing that helps me and has ever helped me and not harmed me in 18 years of illness. If I couldn’t get it I would have to move to where it’s prescribed or legal.
Hi there, thank you very much for this video! I have issues with Lyme disease and ME/CFS since my childhood. It's so good to learn more about it. There is just not enough information out there. Even I didn't know if my ME/CFS is mild, moderate or severe until this video. Thanks ❤️
Mia, you did a superb job with this video, and you don’t even have the condition! It has been a rough ride for me, as I am in the moderate category and cannot work, but I am improving. I appreciate you attempting to show diversity in your presentation! Blessings and wellness, Sister!🧡
I'm convinced a change in diet can help. I doubt it will cure but definitely make difference. Keto, paleo, no dairy, only whole foods, no grains. No seed or vegetable oils. A lot of research. Intermittent fasting plus vitamins and minerals. Possibly electrolytes. Dr. Berg, Dr. Fung many others in the same RU-vid space. I'm all over the place but these things have helped.
I have dealt with this for 23 years. Nothing is like this. Mental fatigue causes body fatigue and exhaustion, and physical exertion (even minor) causes physical and mental fatigue and exhaustion. Mild exertion has cumulative effects. No degree of gentleness, care, or patience allows for the building up of physical endurance. It is a terribly debilitating malaise.
Far too fast delivery, unclear delivery and too much information for me to follow with severe ME/CFS. The content is overly scientific and regular gaps indicate the reader is not familiar with content
This was very helpful, thank you. I have lots of trails to follow now. There is the woman who gave a TED talk, she also directed a documentary about her & other’s struggles with ME/CFS. The documentary is called “UNREST”- its on my watchlist, I gotta work up the nerve to watch it honestly.
Just a note about the post-exertional malaise. It can also happen following mental or emotional exertion/stress. For example, having an argument or trying to do a work or school assignment.
Thank you! For someone who doesn’t have ME/CFS you put the description & info together very accurately! We are relying on people like yourself who have the energy to do things like this to help us. Thank you!
I appreciate this video so much. The amount of research out there is hard to follow, especially for those without a medical background. Thank you! PS Could I make a big request? Any chance future videos could have a bit slower speech? I found it hard to follow, as ME makes the brain easily tired. Thanks ❤️
Thanks for this video. I have severe ME. Bedbound for almost 2 years now. I want to find hope because my life is hell, im in so much pain all the time and no one actuallye gets how dreadful it is. Its a miserable existence
It's truly awful how much ME is neglected. I'm sorry that you're ME is so severe and that you're not getting the help you need and deserve. It's just a massive injustice!
