14 years of absolute HELL for me. I Want Out😢

35 years trying to find help. Lots of ridicule and dismissal. Have had some improvement via my own treatments and sugar and gluten free diet. Hydration is key. Still have crashes. Still dragging every day. 3-4 days/ week in bed just to have one good day. . So very grateful for videos like this that give credibility to ME/CFS at last. Thank you. 🌺

When I got COVID April 2020, I got the symptoms of CFS for ten days. It was the worst ten days of my life and I wouldn’t wish it on my worst enemy.

I have had this for 35 years now, it started in my late twenties and has become worse following a brain injury 20 years ago. People just don't understand, my family just treat me as though there is nothing wrong and say pull yourself together, do this, do that, keep busy but this just puts more pressure on me! I call it " Heavy Head Syndrome ", it starts with a headache, aching, brain fog and then spreads to my body! I feel for all you fellow sufferers out there.

Immense gratitude for this excellent interview. I've been ill with ME/CFS for 31 years, house and bedbound for the last five. The complexity and severity of this disease was very well communicated. Thank you to all participants for helping us be seen.

Imagine if on your “best” days you have 2 hours of energy and hurt all the time, it’s like having the worst flu of your life every day. You can feel the pain and toxicity in every cell of your body. By the time you get dressed, feed yourself and dog, make a trip to the store, and empty the garbage, you’ve drained your “energy” account. You can’t push through the fatigue. The impact on your quality of life, relationships, ability to travel or plan, have a social life, career, self care, child raising,life maintenance, etc is devastating. Now the government has decided it’s better to not prescribe pain medications and let people suffer, it’s barbaric. On top of people thinking you are just “tired” or “lazy”

I only have moments to be involved when I can then deteriorate. I have ME and Fibromyalgia

4:32 I need to hear this again and again. I've pushed through barriers and paid the consequences each time.

Lisa Hall is a wonderful woman and nurse. She knows the risks of suicide when having to live with chronic disease of ME/CFS. Many patients support and treatments are lacking or completely cut off and that only increases the symptom profile of this chronic illness. As a result, many ME/CFS patients are at a high risk of suicidal thoughts, attempts, and unfortunately, many succeed and end their lives feeling hopeless. We have lost many to this unsupported, painful, and debilitating disease.

I’ve been dealing with this for thirty plus years. Physical exhaustion, migraine headaches, severe joint pain. I was a dancer and bodybuilder for years but always had symptoms and setbacks. Two or three days a week I feel absolutely great, next day I’m bedridden for three or four days. There is no treatment supplement or medication I haven’t tried. Just be happy and blessed for the good days and realize in certain ways we’re luckier than some people with terminal illnesses.

What compounds the condition is everyone's opinions/advice... "just try not to think about it", the ignorance that you can talk/think your way out of it.

Went from a high end career working in bleeding edge tech and being in the best shape of my life to barely knowing my own name virtually overnight. Had mono and a near death case of dysentery (You'd be amazed how much blood you can lose in your bowels and not die) and suddenly it was all gone. I fought as hard as I could for almost a year afterwards, but it was no use. CFS can take the sharpest brain and turn it to mush. Your working memory might go from a half dozen bits or more to barely a couple of things at most. And that's on a good day. I literally forget my immediate families members names now. Ah well, them's the breaks. (Edited) Watching her describe the fog part at about 3:30 just now, I swear I can feel what she's feeling. I've never seen it from the other side before, but I recognize the sentence/dialog structure where you're struggling to make sense and convey yourself, but you tend to sort of lose yourself and go down little side paths while explaining, having to snap yourself back to where you were originally going.

I got ME/CFS as a "by-product" of the multiple chronic conditions I have (both mental and physical health). In high school IT WAS BAD (I wanted to sleep 14+ hours everyday and still not feel well rested). College I got an average of 6-9 hours every hours every night and still feel dog tired. Today (I'm in my mid 20s) I basically need 1-2 energy drinks a day, even with the help of vitamins (D3 and B complex). I hate it. Friends and family have accused me of "being lazy" or "just not caring" when that's far from the case.

I’ve had it for years but it got really bad the last 3, it’s ruined my life. I can no longer work and I’m mostly house bound 😔

ME/Chronic fatigue syndrome is not a psychiatric condition even if it can affect mood and mental states as I will explain and have explained in much more detail before (see notes). It is an energy dysfunctional illness that can range from very severe where life is unbearable for years to moderate and milder versions, but always with better or worse periods (relapses). It is a multisystem illness, meaning, it can and will affect multiple organs, more the worse the energy dysfunction becomes, and less the less severe it is. This can be controlled somewhat by a combo of medications, proper rest and using other therapies that are healing and can help to raise the energy, as well as avoiding as good as you can most forms of all types of negative stress (physical, chemical, mental). The milder states can be confused with psychiatric illnesses, as the lower energies affect the brain and lower neurotransmitters also in these milder states, but not if you have been through the more serious conditions that can last for years, where you can barely sit up straight for more than a minute. However since the energy dysfunction will affect the brain and cause neuroinflammation and disturbance of neurotransmittors, it will cause neurological as well as psychological problems, call it neuropsychiatric if you will. You can not walk or barely walk a few steps, constant severe migraines and epileptic states of the brain, that is definitely neurological, where you can not tolerate blinking, moving objects, severe light sensitivity and just looking at a screen can feel like your face and eyes are being burned, and is impossible until you recover and gain more energy by resting and taking medications that can help with the epileptic tendencies and severe migraines, and overall help to reduce the brain inflammatory states where the brain is one of the first organs that will experience drastic negative symptoms from such a low energy state (energy dysfunction). That in addition to back pain, pain in the legs, severe vertigo states, paralysis, extreme fatigue that is unlike anything a normal person can feel, yet often feeling wired (often neurological nervousness) and severe insomnia due to the excitatory state of the brain, cold and heat intolerance (as you have too little energy to be able to control your body temperature effectively), light and audio sensitivity depending on the severity of the current state, problems regulating blood sugar, even when eating healthy (like in 2017 when I ate as healthy on a plantbased diet and very little processed foods and no sugar, caffeine or artificial sweeteners) and much more. The factors that can worsen the condition and improve the condition are multiple and are mostly physical, but also mental stressors can worsen the condition of course. I have recently been through the worst life crisis in my life that caused severe mental anxiety (fear) and mental depression, and yet my ME/Chonic fatigue condition was not affected as badly as say when I push myself too hard physically over time, although of course it does not help and it will of course lower the energy. When there is an energy dysfunction like mito dysfunction where the brain will be attacked often first (as it is one of the most energy demanding organs), it will automatically lead to a lowering of neurotransmitters that will affect and cause both neurological symptoms and can and usually will affect the mental state as well. Gaba medications will lower the brain inflammatory states (unlike say alcohol which will increase brain inflammation) like severe migraines and epileptic states of the brain (that are severely present when the condition is severe, in relapses and will improve in better stages when the condition is milder). The amount of needed medications will have to be adjusted to the current severity of the condition. I am not more addicted to gaba medications today as I was 11 years ago, but it has helped me to go from a severe state to a milder state overall for the last 5 years since I got medications in 2012 that could help with the severe neurological problems /brain inflammatory states) where the severe migraines, epileptic states of the brain that will also cause symptoms in other parts of the body and even paralysis were reduced and I was able to function again and go from severe to a more moderate/milder state of ME/Chronic fatigue syndrome. Not only with the help of medications, but medications combined with knowledge about the illness, and having developed over years methods and awareness of all the symptoms to know (or better know) when to stop an activity and rest and how the illness works, which can take years of painful experience and testing and trying and balancing, What factors that help and what factors that make it worse and how much one can currently handle which can vary greatly. In severe states it is almost impossible, at least when they were as permanent as mine and lasting for 6-7 years (2007-2013/4) in a pretty much chronic severe state, with the exception of shorter periods where I felt somewhat better, like in late 2010 and the beginning of 2011. The last five years I have had a more moderate and milder severity with the exception of worse relapses in periods as I have mentioned before.

Really this was the best. Thank you.

I'm so glad to see this being shared. I have had ME/CFS for 10 years and now, my son has it post-Covid.,

This is great

its such an amazing video, must watch this if you are new here . its so helpful i must say , especiallly for a medical person.

Thank you!

most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the allowed radiation is less.

I am 48, female, a long history of cramping and diarrhea.plus my husband having IBS for a years,However I was able to control both with Imodium until January. I have been in severe pain since middle of January and have lost 20 pounds. The pain has progressively gotten worse. It started as a “bladder infection” pain, but all urinary tests came up negative. I even had a CT and ultrasound done. I then had a colonoscopy and upper endoscopy done which the results are most likely Crohn’s disease and CFS but I’m waiting for blood test results to confirm, the Prometheus test was done. However I am still in a lot of pain, I have pressure also, all of it right above my bladder. The pain is as bad as my childbirth labor was. I have had a total hysterectomy, appendectomy, gall bladder removed also. Also, I have this weird sensation of a string pulling through my genitals. That’s the best way to describe it, but it kind of feels like a nerve or tendons being pulled. There is also throbbing in my abdomen and genitals. I have also been to my gynecologist, nothing abnormal shown as I figured with my hysterectomy. I believe I am at least gluten intolerant, but tests show I am on borderline of celiac disease. I have been trying to correlate the pain with something and I noticed as my bladder fills up, the pain increases. But here’s probably the biggest clue, when doing the prep for my colonoscopy, as soon as my bowels were clear, I had no pain, not even when my bladder filled up. I didn’t start hurting again until hours after eating again the following day when my bowels filled up again. Also, I noticed that when I take Imodium for diarrhea I hurt more, probably because the stool is sitting in there instead of going right then. i was then introduced to a chinese herbalist Dr sale bashiru i got the herbs and oil a long with my husband IBS. just about 3 months past without pains and symptoms and my husband fully cured also.here is my email. chamcheng362@gmail.com whatsapp +17372079382

Does anyone have sleep issue along with CFS?

I have chronigue fatigue syndrome after getting coronavirus 5 months ago. I think it is caused by hormone imbalance after the infection

Chronic Fatigue Syndrome is caused by microwaces of the magnetron oven.Electric power plug also to remove because when he is in, the oven radiates micrwaves. When you are sensible,you are a victim.

There is a reputable explanation for the cause of ME/CFS. Its a particular brain structure that has been traumatised in the beginning of the illness (that's not psychological). The brain goes into defence mode and triggers the immune system and a massive stimulation of the nervous system. Please have a look at the Gupta program for further information. I went from bedridden and in need of care to 100% health with that. Yes, it sounds unbelievable, but the explanation and the solution are already there

What’s the treatment? I’ve been to every doctor in different states but nothing helps. If somebody know about a treatment or something help? Please!

does anyone donate blood, because my DR told me i could have ME, last week, i have been suffering from fatigue for some time, but i started donating blood 12 months back, i felt like crap on thursday, so friday i donated blood, i feel 10 years younger and full of energy, and that's everytime i donate, just a thought, if you got bad blood then change it,