Loneliness hurts my ME/CFS patients more than science shows - LIVE

#chronicfatigue #myalgicencephalomyelitis #loneliness

Loneliness affects nearly all of us, but patients with ME/CFS teach us a valuable lesson about the effects of loneliness on our bodies. We'll talk about the biology and psychology of loneliness to demystify ME/CFS.

Today we talk about the complex and often misunderstood world of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). We address the wide-ranging health complications such as cardiovascular, cognitive, immunological, and vascular issues that ME/CFS patients face, and how these problems are further compounded by isolation resulting from the disease's complex nature.

ME/CFS is a condition that transcends mere chronic fatigue. It is a neurological disorder associated with a range of complications that affect different parts of the body. In this video, we discuss how ME/CFS can cause heart problems, cognitive issues, immune instability, and vascular disruption. We break down these complications, providing in-depth explanations and insights into their nature, manifestation, and impact on patients' lives.

Interestingly, these health problems are not exclusive to ME/CFS. We explore the similar complications found in other conditions such as post-Epstein-Barr Virus (EBV) mononucleosis, Chronic Lyme Disease, "Long Covid," SICU syndrome, and post-West Nile Virus conditions. We present an in-depth comparison of these syndromes, illustrating their similarities with ME/CFS. By doing so, we aim to show how a better understanding of these connections could lead to improved diagnostic and treatment strategies.

Loneliness is a critical issue for patients grappling with chronic illnesses, especially those with ME/CFS. The lack of awareness, skepticism, and invisibility of symptoms often leads to social isolation. This lack of social support can lead to increased symptom severity and impede recovery. We delve into the psychology behind this isolation, providing a nuanced perspective on how loneliness interacts with the physical symptoms of the condition.

Unfortunately, this lack of understanding extends to the medical community as well. The elusiveness of ME/CFS can result in some healthcare professionals not providing the necessary support, leaving patients feeling dismissed and invalidated. We address this critical issue in the video, stressing the urgent need for increased education, understanding, and empathy within the healthcare sector.

Despite these challenges, many people living with ME/CFS demonstrate remarkable resilience and strength. Their ongoing struggle for recognition and support is testament to their fortitude. Through personal stories and testimonials, we highlight these individuals' courage, bringing a human element to the often clinical and impersonal narrative surrounding ME/CFS.

By providing a comprehensive overview of ME/CFS and its associated complications, this video seeks to contribute to a better understanding of the condition. Our hope is that viewers will come away more informed and empathetic, ready to support those living with ME/CFS and advocate for improved treatment options.

Join us as we dive into the world of ME/CFS, breaking down the walls of misunderstanding and indifference, one video at a time. Together, we can create a world where no one has to fight ME/CFS alone.

References:

This video/speech/channel DOES NOT CONSTITUTE MEDICAL ADVICE. Patients with medical concerns should contact their physician. If your concern is an emergency, immediately call 911. This information is not a recommendation for ANY THERAPY. Some substances referenced in this content may be illegal, and this content is not a recommendation for, or endorsement of, their use in any way.

[matilda]

One of the hardest things to accept when you are a good person, or trying to be, is that there are in fact horrible people in the world that do not care

[lucyilly]

I’ve lost all faith in the medical profession. I’m in this entirely on my own. I’m pleased to see someone from the profession understand this horrendous illness.

[cathleenbodiker]

Sending a hug to each lonely person here.

[ryanb]

It takes courage to admit that you are lonely. I am one of those lonely people.

[aubrey]

I've never seen a doctor with true understanding of this condition. I was a healthy person until 8 years ago, when I had a major surgery and got sepsis. Ever since then I've been suffering with ME/CFS and my entire life has been taken from me. Thank you for bringing awareness to this awful condition.

[sherip]

I have ME/CFS. I was a super active mother of 6 children, went back to school and got my R.N. license and was struck down with this dreadful disease after a respiratory virus that left me bedbound and in a state of semi-consciousness just as I was pursuing a career. It has stopped me in my tracks. Loneliness has been a difficult thing for me. Friendships take participation and energy, which are difficult for those with ME/CFS on the best days. Feeling so ill all the time, I would not know if I was truly ill with anything serious. Dying would be a relief. Doctors have dismissed me, leaving me not to trust them. Thank you so much for educating others and being compassionate and understanding to those with this dreadful disease. Just remember everyone, we may not be able to make it to your event, but it is always nice to be invited. Send a card, a text or a note. It is nice to know that we are not the living dead, forgotten and unwanted. Much love to all those who are true warriors pushing through it. Keep on enduring! You are awesome!

[GlasPthalocyanine]

I developed ME/CFS in the early 1990s. This was a few years before the WHO categorised this as a "real" illness. With a couple of notable exceptions, Doctors were aggressively accusing me of exaggerating or outright lying about my illness. This experience has irretrievably damaged my trust in our local Doctors. They wasted years of my life shaming me with diagnoses of depression when that was never the problem. It's the shame that isolates people, even within their own families. It's an unnecessary burden, on top of dealing with illness. The respectful way to deal with patients would be to acknowledge their illness and admit to not knowing how to treat ME.

[felixcat]

We need more doctors like you. so much compassion and empathy.

[susanphoenix]

Thank you so much for this video! I've had ME/CFS for 54 years, diagnosed at 53 years. It's almost criminal how much the medical field has ignored and gaslight a condition where many suffer alone, unable to sit up, eat or speak.

[AtypicalPaul]

Loneliness is really hard and impacts your health so much. We are social animals that need a support system. We need oxygen, food, water, and human interaction.

[mousebr]

Everyone talks about loneliness. But I worked retail for 31 years and let me tell you, after you work with the public, your home and solitude becomes your refuge. People have become so rude and abrasive. I'm happy to be by myself. It's heaven.

[jadequincey]

I have MG and it went undiagnosed for at least 20 years. I was told that I was a malingerer, lazy, faking, a baby and on and on. I was finally diagnosed when my "clumsiness" sent me to the neurologist. My sister still doesn't believe that there's something wrong with me. It was, and is, isolating and devastating. I am very lonely, and often not able to do the things I want. It's hell.

[LorraineJones-yo]

I’m really struggling with this now, my life has just evaporated! ME/CFS is horrendous. Every GP and consultants needs too listen too this and educate themselves. Thank you

[lindakelley]

I truly know what feeling lonely. I find myself going to the grocery store, shopping, and hoping to talk to someone. I'm home watching TV most of the time. no energy, and I have trouble remembering things. I truly know.

[MikaylaFitch]

As someone with ME/CFS this is incredibly refreshing to hear

[skylinefever]

I am so glad to see someone acknowledge chronic fatigue. For much of my life, it was like I didn't exist.

[catherineclark]

What a lovely man. Your kindness will empower my day today.

[lifewithspirit]

I have ME/CFS and can certainly relate to the loneliness and isolation. You want to WANT to be social, but it just takes too much energy to do anything. I’ve joined support groups, been active on other’s YouTube channels, and I even started my own YouTube channel to build a community, so I’m doing what I can. Still, nothing beats in person contact. Love and light to you all!♥️🌻

[luckylady]

I have had severe M.E. for over 35 years, bedbound since an operation in January that left me unable to wake from anaesthesia for 12 hours. I emphasised to the anaesthesiologist about my condition and concerns.. that were brushed off. They gave me an antibiotic flagged for causing permanent nerve damage, which destroyed the ones in my inner ear leaving me with ongoing constant severe vertigo & sickness 6 months later. I am devastated they didn’t care enough to make sure they ‘did no harm’.
Since I am totally alone 24/7 having lost all my family and friends, I am so very lonely, sick & heartbroken that I constantly wonder why I should carry on. The sad thing is that no one would even notice if/when I decide not to.
It’s a painful truth..having M.E. is very isolating, and being so isolated makes it intolerable to deal with.

[pia]

Thank you talking about this. I went from loving my work, stoped by stage 3 cancer, survived against all odds after 18 month of chemo. Built back strength for 6 month, and out of the blue, I got weaker despite doing more ! Eating so healthy, doing everything “ right”…. So so sad, that I’m now horizontal, 8 years after beating cancer, I can’t work, can’t go grocery shopping, it’s tough to take a shower. This is the worst diagnosis one can imagine. I my self rejected it, but now, 23 years after diagnosed, I’m so scared. Sry many words, to say thank you for this video. 🙏