Thank you for posting this... I agree with what you say. Absolutely, it gets exhausting trying to explain why you can't attend a gathering or why it's better you stay away from someone who is coughing and spluttering everywhere. It scares ME sufferers as it takes us far longer to recover and what our bodies go through daily is enough anyway...
Thanks for making this video. As someone with moderate to severe ME, I don't go around others, or have others over unless I have to, and while I consider this to possibly be helpful with avoiding illnesses, my primary reason is that my adrenaline starts running too hard whenever I have to deal with other people now and I pay for that with much more pain, illness symptoms, and fatigue for days, weeks, months, and/or years after. Now, how can that be? I don't know. I just know that my body starts pumping out extra adrenaline and cortisol so it can meet the demands that are placed on it in social situations, and in the moment I end up appearing more energized than healthy people which of course backfires on my ability to seem credible about being disabled with this. The adrenaline also overrides my symptoms making me feel better while it's coursing through me; the comedown is horrendous though. ME is a very strange illness. I couldn't have made this up if I tried.
I believe the hypochondriac diagnosis is a reaction from Dr's to make up for their inability to diagnose or treat a condition, instead of just saying "I don't know". Blame the patient.
Yes. To the point I am entertaining a Book I just found today titled "Plague: One Scientist's Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome (ME/CFS), Autism, and Other Diseases by Dr Henkenlively & Dr Miko vits
Thank you for this. I don’t worry about germs so much but I’ve been blessed to have little problems with being sick. Then again, I don’t really get out much. True enough, life is hard enough with just the ME/CFS/Fibromyalgia is more than enough.
And this goes for caretakers!! As a mom and dad we both are very careful where we go and who we interact , it's a constant worry if either of us come down with a bug. Thanks for the video.
Bless you both. Try not to worry too much about it though. As an MEer I seemingly catch everything that goes around because I have to eat food that comes in from the outside world. Also, I seemingly get sick from whatever's floating in the air. I don't want my wonderful husband to worry about it though. He does take precautions and he wears a mask, but listen, masks don't stop viruses, it even says so on the box. I don't want him to wear it but he likes to. I do appreciate that he keeps it mind though. Just being believed means so much to us.
I’ve been diagnosed over 2 yrs & been sick since March of 2020! My family is FINALLY REALIZING THAT THIS ILLNESS IS REAL! Also Glad To See You Feeling Better😊
Hey there! So good to see you. Thank you for this video. I'm glad you are at least a little better! Dont overdo it! I'm in a crash now and can't rest a lot, and not having others understand you NEED rest is so frustrating.
When you are up to it, can you share what supplements you currently take that help. I'm still working on finding a doctor who will prescribe LDN. I had a neighbor recommend magnesium and Cirtisol but I don't know anything about them.
Strange. I had strep and a bad cold since my LC started. I was fine and bounced back. But a short course of benzoes, like 10 days, landed me in severe relapse and crash. It's lasting a year and I went from mild to moderate on verge of severe 😢 Never went to my previous baseline. M.E. And LC are do bizzare and it's impossible to explain to someone
I hate this illness more than anything along with my fibromyalgia and I would never pretend to feel the way I do with these terrible conditions. In fact I pretend to feel better than I do most of the time😢
I've had symptoms for years but was just diagnosed with ME/CFS last month. I have learned more from your videos than any other resource (including my own doctor). Thank you so much for doing what you do! Speaking of taking a long time to recover, what are your thoughts on covid/flu vaccines? I have had covid twice and it seems to have made my ME symptoms significantly worse. I have also had several covid vaccines, and I now understand why the vaccine itself is so hard on my body, and takes a lot of recovery time. I absolutely don't want to get covid again, but the vaccine triggers a crash that lasts for weeks/months. So now post ME diagnosis, I'm afraid to get any more vaccines and have my health keep declining. It's a tricky situation. What are your thoughts on getting/not getting vaccines? (Or anyone else who wants to chime in!) I know it's a personal choice and everyone recovers differently. I just haven't found much information on vaccines with regards to ME patients specifically, and the very real toll that it takes on our bodies.
Hey there, my response may be a bit of a let down. I think everyone is different and should proceed based on their personal health issues. It really is unique to each person. I'm really happy to hear the videos have helped!
You are a godsend. I still wear a mask and avoid crowded places because if I catch anything I literally can't stand up. I caught Covid very mild however I've been left with orthostatic intolerance whereby my BP is weird and often low eg 87/74 or 86/61 or 100/85 and POTS to compensate for this. I was always sluggish in the mornings but this is a different level . Could you maybe do a video on OI 😁 as I know it's not that unusual amount us.
I haven’t had a cold or the flu either. I got COVID in my first year of being sick, I wasn’t as severe as I am now, but all it did was make my CFS symptoms worse. I still avoid my family members at all costs when they are sick though. I believe it’s quite common for people with CFS to not contract the flu and colds.
It seems there are those of us with ME like me who catch everything and those who catch nothing. To me, our immune systems are dysfunctional in different ways. Mine seems to go into overdrive over everything, but then is ineffective at fighting stuff off.
I have arthritis of the spine, painful, also I have lost some sight in my eye through glaucoma these conditions worry me but having ME firghtens me having it for about 28 years, Alan in the UK
Miss your stuff mate. And I know, no need to explain. Anyway, after 22 odd years dealing with this illness, I finally just decided to isolate. Been about 5 years since I did. People arent kind. They arent compassionate. They arent understanding. Even family. Best decision I made. Its win win...'Cause i dont get crap from people, and I don't catch anything from people.
When I get whatever illness is going around, my ME/CFS and Fibromyalgia just get a lot worse while the usual symptoms of the particular illness which is going around don’t always manifest as such. I just feel a greater degree of malaise , am much more fatigued, and am more sensitive to things than usual, especially smells, foods, and touch (skin sensitivities). Many people are allergic to pollen, but oddly enough I never have been so I never experience that even now. I experience a lot of other allergic reactions though that I never had before my ME/CFS as well as chronic sore throats and swollen and painful lymph nodes. They are at the base of my skull and under my ears, jaws and elsewhere. My sinuses also swell more and my asthma flares up. My ME/CFS also flares up whenever I am on antibiotics for some reason. Do you know if anyone else with ME/CFS has that happen when they are on antibiotics? I’m on them a lot bc I get frequent infections. Also do you know what the connection is btwn ME/CFS and low iron? Thank you for always being there for all of us!!! You are amazing!!!💜👍🏻👍🏻👍🏻👍🏻!!!😊
This disease is so strange that it seems to me it brought on by something manmade. How are all parts of the body affected, head to toe with terrible 24 /7 pain?
Thank you for posting this... I agree with what you say. Absolutely, it gets exhausting trying to explain why you can't attend a gathering or why it's better you stay away from someone who is coughing and spluttering everywhere. It scares ME sufferers as it takes us far longer to recover and what our bodies go through daily is enough anyway...
Thank you for making videos that help explain things. After 23 years I don't have the energy or memory to explain things anymore.
Thanks for making this video. As someone with moderate to severe ME, I don't go around others, or have others over unless I have to, and while I consider this to possibly be helpful with avoiding illnesses, my primary reason is that my adrenaline starts running too hard whenever I have to deal with other people now and I pay for that with much more pain, illness symptoms, and fatigue for days, weeks, months, and/or years after. Now, how can that be? I don't know. I just know that my body starts pumping out extra adrenaline and cortisol so it can meet the demands that are placed on it in social situations, and in the moment I end up appearing more energized than healthy people which of course backfires on my ability to seem credible about being disabled with this. The adrenaline also overrides my symptoms making me feel better while it's coursing through me; the comedown is horrendous though. ME is a very strange illness. I couldn't have made this up if I tried.
Well said and beautifully articulated 👏👍. It is so weird & hard to understand.
The full throttle & drop is so relatable! 🫂
Dr Huberman has a FANTASTIC Podcast on Adrenaline/Cortisol Mechanisms which greatly aided me!
☘️
I believe the hypochondriac diagnosis is a reaction from Dr's to make up for their inability to diagnose or treat a condition, instead of just saying "I don't know". Blame the patient.
So true
Exactly.
Agreed
Yes. To the point I am entertaining a Book I just found today titled
"Plague: One Scientist's Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome (ME/CFS), Autism, and Other Diseases by Dr Henkenlively & Dr Miko vits
"Smart enough to understand the consequences"
❤ This!!! 👍 Thanks for the video, hope you are doing OK..... ☺
Thank you for this. I don’t worry about germs so much but I’ve been blessed to have little problems with being sick. Then again, I don’t really get out much. True enough, life is hard enough with just the ME/CFS/Fibromyalgia is more than enough.
And this goes for caretakers!! As a mom and dad we both are very careful where we go and who we interact , it's a constant worry if either of us come down with a bug. Thanks for the video.
Bless you both. Try not to worry too much about it though. As an MEer I seemingly catch everything that goes around because I have to eat food that comes in from the outside world. Also, I seemingly get sick from whatever's floating in the air. I don't want my wonderful husband to worry about it though. He does take precautions and he wears a mask, but listen, masks don't stop viruses, it even says so on the box. I don't want him to wear it but he likes to.
I do appreciate that he keeps it mind though. Just being believed means so much to us.
I’ve been diagnosed over 2 yrs & been sick since March of 2020!
My family is FINALLY REALIZING THAT THIS ILLNESS IS REAL!
Also Glad To See You Feeling Better😊
Dude! Don't say that!!!
Hey there! So good to see you. Thank you for this video. I'm glad you are at least a little better! Dont overdo it! I'm in a crash now and can't rest a lot, and not having others understand you NEED rest is so frustrating.
When you are up to it, can you share what supplements you currently take that help. I'm still working on finding a doctor who will prescribe LDN. I had a neighbor recommend magnesium and Cirtisol but I don't know anything about them.
🤗
THANK YOU, THANK YOU, THANK YOU for being there for us!!!
You are a wonderful, wonderful person!!!💜😊👍🏻👍🏻👍🏻!!!
Well said, spot on. Thank you! Stay safe ☘️
🙌 thank you for making this
Strange. I had strep and a bad cold since my LC started. I was fine and bounced back. But a short course of benzoes, like 10 days, landed me in severe relapse and crash. It's lasting a year and I went from mild to moderate on verge of severe 😢 Never went to my previous baseline. M.E. And LC are do bizzare and it's impossible to explain to someone
What's LC, if I may ask?
@@websurfer5772 Long Covid
I hate this illness more than anything along with my fibromyalgia and I would never pretend to feel the way I do with these terrible conditions. In fact I pretend to feel better than I do most of the time😢
People really say that?! 😳
Even after covid?
I've had symptoms for years but was just diagnosed with ME/CFS last month. I have learned more from your videos than any other resource (including my own doctor). Thank you so much for doing what you do!
Speaking of taking a long time to recover, what are your thoughts on covid/flu vaccines? I have had covid twice and it seems to have made my ME symptoms significantly worse. I have also had several covid vaccines, and I now understand why the vaccine itself is so hard on my body, and takes a lot of recovery time. I absolutely don't want to get covid again, but the vaccine triggers a crash that lasts for weeks/months. So now post ME diagnosis, I'm afraid to get any more vaccines and have my health keep declining. It's a tricky situation.
What are your thoughts on getting/not getting vaccines? (Or anyone else who wants to chime in!) I know it's a personal choice and everyone recovers differently. I just haven't found much information on vaccines with regards to ME patients specifically, and the very real toll that it takes on our bodies.
Hey there, my response may be a bit of a let down. I think everyone is different and should proceed based on their personal health issues. It really is unique to each person.
I'm really happy to hear the videos have helped!
You are a godsend. I still wear a mask and avoid crowded places because if I catch anything I literally can't stand up.
I caught Covid very mild however I've been left with orthostatic intolerance whereby my BP is weird and often low eg 87/74 or 86/61 or 100/85 and POTS to compensate for this. I was always sluggish in the mornings but this is a different level . Could you maybe do a video on OI 😁 as I know it's not that unusual amount us.
its strange as since ive had m.e ive never had a cold or flu etc? its like my immune system is working overtime...
I haven’t had a cold or the flu either. I got COVID in my first year of being sick, I wasn’t as severe as I am now, but all it did was make my CFS symptoms worse. I still avoid my family members at all costs when they are sick though. I believe it’s quite common for people with CFS to not contract the flu and colds.
Ive heard of people experiencing this after getting ME
It seems there are those of us with ME like me who catch everything and those who catch nothing. To me, our immune systems are dysfunctional in different ways. Mine seems to go into overdrive over everything, but then is ineffective at fighting stuff off.
I'm in that group too.
Hallo from Sweden
Jag är också i Sverige ☺️🙌🏼
❤️❤️❤️
Btw, you have great eyebrows.
Great video. I finally got covid this march and don't think I've been back to my baseline since
How long has it been?
@@fight4me747 ha just noticed my typos
This march
I have arthritis of the spine, painful, also I have lost some sight in my eye through glaucoma these conditions worry me but having ME firghtens me having it for about 28 years, Alan in the UK
This is so true. Thank you for making this video.
Miss your stuff mate. And I know, no need to explain.
Anyway, after 22 odd years dealing with this illness, I finally just decided to isolate. Been about 5 years since I did. People arent kind. They arent compassionate. They arent understanding. Even family.
Best decision I made. Its win win...'Cause i dont get crap from people, and I don't catch anything from people.
When I get whatever illness is going around, my ME/CFS and Fibromyalgia just get a lot worse while the usual symptoms of the particular illness which is going around don’t always manifest as such. I just feel a greater degree of malaise , am much more fatigued, and am more sensitive to things than usual, especially smells, foods, and touch (skin sensitivities). Many people are allergic to pollen, but oddly enough I never have been so I never experience that even now. I experience a lot of other allergic reactions though that I never had before my ME/CFS as well as chronic sore throats and swollen and painful lymph nodes. They are at the base of my skull and under my ears, jaws and elsewhere. My sinuses also swell more and my asthma flares up. My ME/CFS also flares up whenever I am on antibiotics for some reason. Do you know if anyone else with ME/CFS has that happen when they are on antibiotics? I’m on them a lot bc I get frequent infections. Also do you know what the connection is btwn ME/CFS and low iron? Thank you for always being there for all of us!!! You are amazing!!!💜👍🏻👍🏻👍🏻👍🏻!!!😊
Hallo Fromm Germany ❤😢
Not explaining anymore...
This is definitely where I am with most of it now. It's just too exhausting
This disease is so strange that it seems to me it brought on by something manmade. How are all parts of the body affected, head to toe with terrible 24 /7 pain?
People can be such jerks
Can SSRI help with ME?
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