Great video! I can't pinpoint when, but after my initial phase of this illness, I stopped catching viruses. My white blood cell count is almost always elevated now. Immune overdrive definitely contributes to my fatigue, though.
This was excellent and insightful! I definitely feel less alone. Thank you Johnny 😊 Suggestions for polling: Symptoms like light sensitivity, tremors, cold temperatures causing flares. Also, usage and types of disability aids.
Saving this for when I have the mental energy to watch it but just leaving a comment in the meantime to say thank you for all that you do! This sort of awareness and advocacy is exactly what this community needs
This poll was almost a relief. I don't feel so alone now. I no longer can work at all. Cannot do ANYTHING for consecutive days in a row. Not even ADL'S now. Have to put a day and sometimes up to 3 days in between tasks. I used to work part time (15 hours a week) but got worse. That was 6 years ago. Full time work will never happen for me unless there is a cure. I can retire in 13 years which I suppose is a positive. SSDI will automatically switch to SS retirement. This condition robs you of so much. Frustrating. 🙏😔 The 3+ other conditions since having ME/CFS was sad. I answered 3+ to that one. Vertigo, chronic shingles if I push myself or am under stressful situations (internal or with a rash), a Malar face rash before a flare, mild/moderate gastroparesis and gastritis, bouts of severe sciatica, bouts of trigeminal neuralgia, benign tremor in my hands, thyroid issues, flu like aches and fevers of unknown origin, migraine headaches, osteoarthritis in multiple joints, extreme heat intolerance, and severe brain fog/short term memory dysfunction. Mental health related symptoms are panic attacks and panic disorder. I do have chronic PTSD that is also part of my disability. Life is a day by day thing nowadays. 😔🙏😴😴😴
I’ve recently had Covid pneumonia, but apart from that I’ve literally not had anything else in the 6yrs since diagnosis. However, if there’s viruses, colds etc doing the rounds, I always know because it exacerbates the ME. All very weird. Thanks as always for this invaluable info🙏 The throat thing. Hell yes. Constantly clearing my throat; drives me nuts, apparently it’s the ME related gastritis x
Thanks so much for this info! I just discovered this week that the studies being done for Long Covid treatment have finally recognized the overlap of its symptoms with a number of AUTOIMMUNE diseases, including MS, Inflammatory bowel Disease. Mast Cell Activation Syndrome and the so-far unclassified condition of ME/CFS. Everything else I had seen had only connected the fatigue and malaise with mitochondrial dysfunction. So, studies are being expanded and the autoimmune connection may be very beneficial in us being taken more seriously! This would also back up why it's more common in women and why it is progressive! At last, a step towards recognition! 😵💫
Do you know they've never seen mitochondria? There are little specks in some cells they say are mitochondria but all they can really see is that they're some kind of speck. Mito are a hypothetical concept so how in the heck could scientists or medical personnel know if someone's "mitochondria" is impaired?
Same here - only attend family gatherings and I have to start preparations for going out at all 3 days ahead of the event. Can't even go for blood tests or anything requiring an appointment, as how I'm going to feel on any day in the future is so unpredictable. I rarely get out more than 10 times a year!
@@helenwhills9828 I am the same way. The 2 or 3 days of sleep in order to make a Dr appointment or even meet a friend. Family gatherings I avoid. Too much stimulation. I have sensitivity to noise and light ....and crowds. I can't do it anymore. It actually flares my symptoms. Do you experience that at all?
@@EarthAngelPreparedness I have more sensitivity to light than to sound but my startle reflex is overactive to unexpected noise. My family is small - I am 78, with adult son and daughter, their partners and my 3 granddaughters. They all recognize my frailty so are very considerate. So sorry you can't enjoy family - it's all that keeps me alive sometimes!
i have been aneamic for years, the doctor would prescribe iron for a few months, and not long after i would be back with the same issue. its only when i said find out why my body doesnt keep iron shat she got me tested.
Me too. Chronic anemia. My doc says it is an absorption issue due to my digestive issues with me/cfs. I have mild gastroparesis. Part of my me/cfs. I eat several small snack meals each day. Cannot eat full 3 meals. Just as you mentioned, I go on a course of iron supplements and then months later.....I am low again. 😔
Some symptoms did not start until around the 20 year mark. Just a full list of symptoms that we all have to bring to the Drs office may be a good idea. When I started Savella I was 80% better for 3 years.
Thanks for sharing. I really enjoy your polls because it spreads information and opens up opportunities to ask each other questions related to the poll. I’ve probably said it before but I’ll say it again; if anyone here hasn’t looked into other chronic illnesses such as POTS,EDS,MCAS,IBS, etc. do it. I have bad muscle aches,heart issues,heat intolerance, the list goes on. I was diagnosed with POTS,hEDS,and MCAS, on top of my severe ME/CFS. Symptoms I was attributing to my ME/CFS were usually caused by another illness or overlapped with my ME. There isn’t much you can do to help ME, but there are some options to help other illnesses. I take medication for my POTS and other medications and go to lymphatic massage therapy and I have seen improvement when it comes to fatigue. I’m still mostly bedridden and require full care but I don’t really crash and my daily weight of fatigue isn’t so bad. It might be because it’s summer and it was an easier winter, but I still have at least found relief for my other illnesses that were triggered by my ME. Another poll idea: Are you diagnosed with a mental illness. I know a lot of people suffer from high depression and anxiety, but I’ve seen that a lot of people with chronic illnesses have mental illnesses too. My doctor/therapist explained that our nervous systems might be wired differently, which can lead to mental illness/neurodivergence and chronic illness.
@@helenwhills9828 That’s what I meant. I never suffered from depression and anxiety until I got sick. I do wonder if I have always struggled with OCD though. I know a lot of ill people who are autistic or have ADHD. Just an interesting thought.
There is no science behind that idea that anything biological causes depression or anxiety. There is no evidence that different wires is what causes depression or anxiety, living with a serious chronic illness will cause it though.
Just woken to this😊Thanks its so interesting I started writing it down but conked out early on.Had my ansew to all.Sadly I've only recently found your Channel which is Fantastic (Finally Ive found support from you & like minded followers)Only found Posts wk or so ago.I will need to listen to this many times & write all the questions down as Id like to contribute.Great idea & Amazing efforts Johnny,many thanks❤😊
The following is from my comment - maybe it's somewhat helpful to you: 72% of us are not able to work. 1/3 are bedbound 76% of us have had doctors state that ME is all in our heads. 66% of us have gotten worse. 79% of us flare up with heat. 82% of us are the only people in our families with ME. 47% of us were athletic before ME. 29% of us are not Type A. 76% of us do not believe there will be a treatment or cure 45% of us have seen 10+ doctors.
@websurfer😊OMG...Thank you so much that's fantastic help for me!! Geartly appreciate it & all time & effort you've put into these stats & comments 😊keep well as possible 😊
@@happiness6177 Thanks i hope you feel AWAP too (as well as possible). They just erased my comment so I'm glad this one stayed (so far). I also had: Fully Recovered 1%
@@websurfer5772 Full Recovery No way!! thats wonderful😊I like AWAP👍🏻😁.Why would your comment be deleted?? All the best & many thanks again.Will still watch again tho as very interesting😊
@@happiness6177 I can't see the one I just wrote to you that you replied to here either. It's because I say things we're not supposed to anymore. I'm that kid that yells out, "But the emperor isn't wearing any clothes!"
These are very interesting. I should, as someone trained in research, though, put an asterisk on the findings. One thing to keep in mind is that there may be sampling issues that affect the results. It is a bit self-selececting in a couple of ways. One:the people who watch TH-cam videos about ME and are exposed to the polling may differ in meaningful ways from other people with ME. Another possibility is that people may be more likely to answer a polling question that affects them, whether it is symptom they have had, a treatment they have tried, etc. It's still interesting stuff to read, but you have to be careful in generalizing or interpreting the results.
I was thinking that as well. The same thing goes for reporting of having ME/CFS in general. I've always wondered what the data would look like for those with very mild ME/CFS. There are tons that don't go to the doctors unless they absolutely need to. I think that those who are more proactive or have a more severe disease tend to frequent social media groups based on it. I'm not saying that this data isn't significant, but I can see a lot of under reporting going on due to people not reporting based on their mild severity,
Finally after three days I have enough energy to watch this, and my noise sensitivity is somewhat better. Thanks for the summary, I’m pretty new to this so it’s helpful.
Thank you for this 💙💙 this was really helpful, and interesting to see. Your content is always amazing and massively appreciated, and your approach is really thoughtful and considerate 💙 I wonder how many people with ME also have hEDS? Because ME is one of the symptoms of hEDS. And how many people with ME are neurodivirgent? I understand the links with trauma/ illness/ long term stress. Long term stress produces more cortisol over a longer period of time. The body using it in this way, can suppress the immune system, leading to illness. Cortisol regulates metabolism, inflammation, blood pressure, sleep-wake cycle etc. And that's not including the other impacts of stress, inflammation, placing strain on multiple systems, increasing the risk of other illnesses, psychological impact etc. So if you have ME, and you're experiencing a stressful situation (which can happen just through having ME, medical care, friends, services, family etc), and your immune system is suppressed, that could maybe be one way that it could lead to other illnesses? Or a connected area of how that manifests in people. I'm not sure if it's a common experience, but how many people with ME, have actually had a medical professional talk to them or offer support for that area of living with ME? It seems they talk about the ME itself, but not the possibility of anxiety, depression, trauma or support for managing how stressful it can be.
Spoiler alert long message🚴 I’m 71. I am diagnosed with autoimmune Hashimotos since 2005. I was riding my bike a couple miles everyday, singing to music as I rode around the neighborhood, plus rollerblading. Very active all my life. As a little kid the anxiety came from being scared of getting in trouble because my narcissistic mother was always angry. Breathing got you in trouble. I strived to be that perfect quiet kid to make myself invisible. Only female and five brothers. Also other abuse during my teens. Nobody accountable. Exercise was my therapy to the toxic family landscape. Even after my 2018 successful craniotomy, benign tumor removed, 6 months later back to active life. Fast forward to 2021 started tapering from klonopin, a benzodiazepine, 2mg reduced to .5mg in 2024, goal to be completely off before I die. Bedridden from 2021. I also had my 4th Moderna vaccine. I experience -chronic fatigue, -brain fog, -no pain, -severe asthma. -swollen throat glands Is it ME/CFE? Is it Benzodiazepine tapering? Is it vaccine related long covid? Nobody knows and No doc will discuss my questions.
Do you have a polling question for symptoms getting worse due to pressure changes (weather). Also, on specifically the overachieving polling question. I wouldn't be surprised if the overachievers are more likely to develop ME/CPS because they push themselves too hard and/or abuse their bodies by not sleeping remotely enough. It kind of ties in with the sickness susceptibility point you mentioned.
@@helenwhills9828 I'm not only majorly affected by moon phases, I found out I'm extremely sensitive to where the moon transits planets in my natal chart. It's unreal. I had no idea astrology was this intricately involved in my health.
Not allowed to have a correct diagnosis until the doctor says, so until then there's *nothing wrong with me" except "anxiety and IBS". Its not worth even trying to join in with the community which matches, since theres no diagnosis. So i fix myself and thank those who have a diagnosis for enlightening me that i was never on my own through my whole life until now in my experiences.
I hear you. This is all being done to us on purpose. Don't let them win. If you say you have ME I believe you. No one wants to say they have this. It's too devastating and it scares people. It scares doctors too.
Thank you for another excellent video. Just a suggestion, when asking about remission, I think another distinction to add is whether it was only partly or a complete remission. Several years ago, I had about 4 months where I was able to do quite a bit more than usual, but still not even close to being able to do what I did before I got sick. Would that actually be considered a remission? That was over 5 years ago and I still look back at it wistfully.
Thank you for all your hard work on collecting all this data, couldn't have been easy for you.does any one have eye problems on bad ME day's.my eyes get sore,ache and go red.alan in the UK
Thank you for your reply,so sorry to see your degree of ME, mine is moderate with over 20 symptoms,had it for around 29 years, every day is a struggle, I am 75 now but still hopeful, take care Alan UK
@@AnnBaxter-s2l Wow that’s a long time! I’m so sorry. Yeah honestly it’s rough, I spend all day in bed doing nothing but watch tv and use my phone. It just an endless loop of the same thing. I hope you have some good days in the future.
Yes to the eye problems Alan. Look up 'blepharitis'. Inflammation from blocked eyelash oil glands. Can also be complicated by skin mites feeding in them. Discovered this when I was researching eyelash dandruff. 🙃
In the matter of how I used to be, too many folk seem to roll their eyes as though I just made shit up about my past to justify some difference in how I am now. I show them pictures and they go quiet. As for losing friends and family. Yes, true, I have lost a lot but, part of that is more complex. The majority were because I couldn't maintain a friendship, stopped accepting party invites or, left early. I stopped drinking because it made me feel bad, That changes a social standing. Many family members just keep their distance as they don't want to burden me
I appreciate you trying to talk softly for the severe crowd but the problem with that is every time an ad comes on our ears are BLASTED with sound. You’d be better off raising the volume a little. Thank you.
Dedicated to everyone going through this: 🎶J stands for jives and justice too I love you so much, I don't know what to do I know about the beatings people put you through It takes a lot of doing to do what you do Evil has ways to charge into battle Drugs can be fun but watch the hook The glassy-eyed devil, he's a crook Just check out how many souls he already took 💉 "You can't fool me", she said I laughed and said, "I know" "You can't sing the blues and live", I said "I know", she said, "I know" Children are lost We're falling to pieces I know the way and it ain't cool Judgment has come with an iron rule Check out your existence or stay a fool "You can't fool me", she said I laughed and said, "I know" "You can't sing the blues and live", I said "I know", she said, "I know" 🎶 (Justice - Kim Milford)
Thank you for sharing! It would be interesting to know if ME got worse after an infection (covid or any other) I was moderate and covid made me immediately severe and I found many others in a similar situation!
Thank you for the video. I would like to suggest a question about blood pressure, do people with ME have high, normal or low blood pressure. In my case it is low.
Great idea. Also, are you having orthostatic issues, passing out etc. I suffer from hypotension too and have passend out numerous times in my life (> 30 times).
Since I know I have low BP I am very cautious - I eat more often and always have some food and water in my bag and never passed out. When I go for a walk I notice that I don't go straight from time to time, but then find some bench and have a rest.
Mine has been both low and high. I notice under chronic stress situations or if I am "pushing myself" because I have to go to a Dr appt or for tests at the hospital, etc. my BP is high.....very high. It stabilizes after many hours though.
With heat, I wonder if it is because, when it's warmer here I am inclined to do more and, close connection, my symptoms get worse. However, if I am on vacation somewhere hot and NOT driving, so, zero committments or obligations, I feel a lot better. So clearly, without realising it, my symptoms are also related to what I force my mind to do.
Before I had ME i got colds and flu all the time, but since I have ME ive hardly got sick, I think twice apart from covid and they were both in the last year when my ME is a lot more mild.
I guess this is where many followers is essential. I doubt I'll ever get that many to my own channel. I only run it as I couldn't find any support sites in the UK and we are particularly awful here for ME/CFS understanding. www.youtube.com/@MeWarriorUK if that is OK, delete if not. I subscribe to you because you talk a lot of sense, you clearly get it. The ironic thing I didn't realise when I started the channel is that I rarely have the energy to make a video and am constantly forgetting what I am going to say. However, I feel that is sometimes useful as it demonstrates visually to viewers. I also don't worry about how I look as, folk are going to make assumptions I always can.
MErs: 72% of us are not able to work. 1/3 of us are bedbound. 82% of us are the only people in our families with ME. 79% of us flare up with heat. 76% of us have had doctors state that ME is all in our heads. 76% of us do not believe there will be a treatment or cure. 66% of us have gotten worse. 47% of us were athletic before ME. 45% of us have seen 10+ doctors and/or other medical specialists. 29% of us are not Type A Personality. Fully Recovered 1% ** Fully Recovered 1% ** Fully Recovered 1% ** Fully Recovered 1% ** Fully Recovered 1% **
I certainly believe chronic stress prior to an illness or trauma is what causes ME/CFS. I think there will be some treatment for certain parts of ME/CFS but not as a whole, as I feel there is no root cause.
Most of the data points to a post viral illness. There are millions of people with ME with no prior Stress or Trauma. I do think stress has some role though.
Psych interventions don’t cure physical disease. These therapies are often pushed on patients from the psych lobby and there is no evidence these therapies help pwME. Psych therapies are rated very poor quality evidence by NICE and are not recommended as “cures” for pwME, whether it’s CBT, brain retraining, or therapies like the lightning process or other psych therapies, they generally have no evidence they do anything other than subjective questionnaires. This is backed up by decades of patient surveys that agrees with the science. Patients are generally targeted by snake oil merchants pushing often expensive “cures” but there is no actual scientific evidence that supports these therapies. Most of us long timers have tried them all out of desperation. As patients are often targeted with false psych cures, they actually have a warning in the U.K. NICE guidelines about this. So please be aware and look for treatments that are based on known ME pathologies and are supported by scientific evidence of efficacy. Testimonials are not actual science but heresay.
How could therapy cure a neurological autoimmune condition? This is harmful misinformation. Scientists took immunoglobulins from ME/CFS patients and gave it to animals. The animals developed fatigue, pain, and balance issues.
@@fight4me747 You have no idea how hard I worked on it. I'm too severe and demoralized to remake it. But thank you so very much for doing this video on the results of your polls for 3 years!! This is gold. Actually I'll put the part from someone I replied to below from my original comment -- that part should stick. And thanks for letting me know you didn't erase it.
![เปิดใจ “ต้นหอม ศกุนตลา” หลังโดนพาดพิงธุรกิจที่เคยทำ และผลกระทบทำถูกปลดฟ้าผ่า! | แฉ 24 ต.ค.67 [2/3]](http://i.ytimg.com/vi/vCi5OIqlxaE/mqdefault.jpg)
For some reasons several of the files did not post properly in the video. Sorry for the technical difficulty.
I can't hear it.
@@traceytrotter9934 Sounds fine on my end.
@@Anchor7 I am partially deaf but it is low on 3 of my devices. Thank you for your support.
@@traceytrotter9934 Sorry, thats frustrating.
It's fine. You explained everything beautifully
People that say they are mild - 14%, people that say they can no longer hold a full-time job 86% .. these two stats line up perfectly, makes sense!
Love the over-achiever question! I think one thing that's so hard with pacing is the internal drive to DO something many of us have. ❤
Great video!
I can't pinpoint when, but after my initial phase of this illness, I stopped catching viruses. My white blood cell count is almost always elevated now. Immune overdrive definitely contributes to my fatigue, though.
This was excellent and insightful! I definitely feel less alone. Thank you Johnny 😊
Suggestions for polling: Symptoms like light sensitivity, tremors, cold temperatures causing flares. Also, usage and types of disability aids.
Saving this for when I have the mental energy to watch it but just leaving a comment in the meantime to say thank you for all that you do! This sort of awareness and advocacy is exactly what this community needs
This poll was almost a relief. I don't feel so alone now. I no longer can work at all. Cannot do ANYTHING for consecutive days in a row. Not even ADL'S now. Have to put a day and sometimes up to 3 days in between tasks. I used to work part time (15 hours a week) but got worse. That was 6 years ago. Full time work will never happen for me unless there is a cure. I can retire in 13 years which I suppose is a positive. SSDI will automatically switch to SS retirement. This condition robs you of so much. Frustrating. 🙏😔
The 3+ other conditions since having ME/CFS was sad. I answered 3+ to that one. Vertigo, chronic shingles if I push myself or am under stressful situations (internal or with a rash), a Malar face rash before a flare, mild/moderate gastroparesis and gastritis, bouts of severe sciatica, bouts of trigeminal neuralgia, benign tremor in my hands, thyroid issues, flu like aches and fevers of unknown origin, migraine headaches, osteoarthritis in multiple joints, extreme heat intolerance, and severe brain fog/short term memory dysfunction. Mental health related symptoms are panic attacks and panic disorder. I do have chronic PTSD that is also part of my disability. Life is a day by day thing nowadays. 😔🙏😴😴😴
I hear ya. I'm in a similar situation. Hang in there. 💙
I’ve recently had Covid pneumonia, but apart from that I’ve literally not had anything else in the 6yrs since diagnosis. However, if there’s viruses, colds etc doing the rounds, I always know because it exacerbates the ME. All very weird. Thanks as always for this invaluable info🙏
The throat thing. Hell yes. Constantly clearing my throat; drives me nuts, apparently it’s the ME related gastritis x
Thanks so much for this info!
I just discovered this week that the studies being done for Long Covid treatment have finally recognized the overlap of its symptoms with a number of AUTOIMMUNE diseases, including MS, Inflammatory bowel Disease. Mast Cell Activation Syndrome and the so-far unclassified condition of ME/CFS. Everything else I had seen had only connected the fatigue and malaise with mitochondrial dysfunction. So, studies are being expanded and the autoimmune connection may be very beneficial in us being taken more seriously! This would also back up why it's more common in women and why it is progressive!
At last, a step towards recognition! 😵💫
Agreed!
Do you know they've never seen mitochondria? There are little specks in some cells they say are mitochondria but all they can really see is that they're some kind of speck. Mito are a hypothetical concept so how in the heck could scientists or medical personnel know if someone's "mitochondria" is impaired?
🥀So interesting,fantastic info.thank you🥀
I wonder if people catch a cold/flu less because of the amount of time spent at home - that's me, I'm seldom out
Same. And when I do go out I mask
Exactly. When I do I usually mask up. Just to be safe.
Same here - only attend family gatherings and I have to start preparations for going out at all 3 days ahead of the event. Can't even go for blood tests or anything requiring an appointment, as how I'm going to feel on any day in the future is so unpredictable. I rarely get out more than 10 times a year!
@@helenwhills9828 I am the same way. The 2 or 3 days of sleep in order to make a Dr appointment or even meet a friend. Family gatherings I avoid. Too much stimulation. I have sensitivity to noise and light ....and crowds. I can't do it anymore. It actually flares my symptoms. Do you experience that at all?
@@EarthAngelPreparedness I have more sensitivity to light than to sound but my startle reflex is overactive to unexpected noise. My family is small - I am 78, with adult son and daughter, their partners and my 3 granddaughters. They all recognize my frailty so are very considerate. So sorry you can't enjoy family - it's all that keeps me alive sometimes!
i have been aneamic for years, the doctor would prescribe iron for a few months, and not long after i would be back with the same issue. its only when i said find out why my body doesnt keep iron shat she got me tested.
Me too. Chronic anemia. My doc says it is an absorption issue due to my digestive issues with me/cfs. I have mild gastroparesis. Part of my me/cfs. I eat several small snack meals each day. Cannot eat full 3 meals. Just as you mentioned, I go on a course of iron supplements and then months later.....I am low again. 😔
Some symptoms did not start until around the 20 year mark.
Just a full list of symptoms that we all have to bring to the Drs office may be a good idea. When I started Savella I was 80% better for 3 years.
I avoid prescription drugs as much as possible but did find 5-HTP helpful for a while. It's also a Seratonin precursor.
Thanks for sharing. I really enjoy your polls because it spreads information and opens up opportunities to ask each other questions related to the poll.
I’ve probably said it before but I’ll say it again; if anyone here hasn’t looked into other chronic illnesses such as POTS,EDS,MCAS,IBS, etc. do it. I have bad muscle aches,heart issues,heat intolerance, the list goes on. I was diagnosed with POTS,hEDS,and MCAS, on top of my severe ME/CFS. Symptoms I was attributing to my ME/CFS were usually caused by another illness or overlapped with my ME. There isn’t much you can do to help ME, but there are some options to help other illnesses. I take medication for my POTS and other medications and go to lymphatic massage therapy and I have seen improvement when it comes to fatigue. I’m still mostly bedridden and require full care but I don’t really crash and my daily weight of fatigue isn’t so bad. It might be because it’s summer and it was an easier winter, but I still have at least found relief for my other illnesses that were triggered by my ME.
Another poll idea: Are you diagnosed with a mental illness.
I know a lot of people suffer from high depression and anxiety, but I’ve seen that a lot of people with chronic illnesses have mental illnesses too. My doctor/therapist explained that our nervous systems might be wired differently, which can lead to mental illness/neurodivergence and chronic illness.
I agree but there is also the fact that long term physical disability can CAUSE both anxiety and depression, especially without a firm diagnosis!
@@helenwhills9828 That’s what I meant. I never suffered from depression and anxiety until I got sick. I do wonder if I have always struggled with OCD though. I know a lot of ill people who are autistic or have ADHD. Just an interesting thought.
There is no science behind that idea that anything biological causes depression or anxiety. There is no evidence that different wires is what causes depression or anxiety, living with a serious chronic illness will cause it though.
@@ruby3200 What I've read that makes the most sense to me is that ME is the great mimicker.
I had to go to the doctor today, so I’m going to watch this tomorrow
Great info!
Just woken to this😊Thanks its so interesting I started writing it down but conked out early on.Had my ansew to all.Sadly I've only recently found your Channel which is Fantastic (Finally Ive found support from you & like minded followers)Only found Posts wk or so ago.I will need to listen to this many times & write all the questions down as Id like to contribute.Great idea & Amazing efforts Johnny,many thanks❤😊
The following is from my comment - maybe it's somewhat helpful to you:
72% of us are not able to work.
1/3 are bedbound
76% of us have had doctors state that ME is all in our heads.
66% of us have gotten worse.
79% of us flare up with heat.
82% of us are the only people in our families with ME.
47% of us were athletic before ME.
29% of us are not Type A.
76% of us do not believe there will be a treatment or cure
45% of us have seen 10+ doctors.
@websurfer😊OMG...Thank you so much that's fantastic help for me!! Geartly appreciate it & all time & effort you've put into these stats & comments 😊keep well as possible 😊
@@happiness6177 Thanks i hope you feel AWAP too (as well as possible). They just erased my comment so I'm glad this one stayed (so far).
I also had: Fully Recovered 1%
@@websurfer5772 Full Recovery No way!! thats wonderful😊I like AWAP👍🏻😁.Why would your comment be deleted?? All the best & many thanks again.Will still watch again tho as very interesting😊
@@happiness6177 I can't see the one I just wrote to you that you replied to here either. It's because I say things we're not supposed to anymore.
I'm that kid that yells out, "But the emperor isn't wearing any clothes!"
These are very interesting. I should, as someone trained in research, though, put an asterisk on the findings. One thing to keep in mind is that there may be sampling issues that affect the results. It is a bit self-selececting in a couple of ways. One:the people who watch TH-cam videos about ME and are exposed to the polling may differ in meaningful ways from other people with ME. Another possibility is that people may be more likely to answer a polling question that affects them, whether it is symptom they have had, a treatment they have tried, etc. It's still interesting stuff to read, but you have to be careful in generalizing or interpreting the results.
Solid points, but I think most people understand these are small samples by people within the ME community. Just nice general info.
I was thinking that as well. The same thing goes for reporting of having ME/CFS in general. I've always wondered what the data would look like for those with very mild ME/CFS. There are tons that don't go to the doctors unless they absolutely need to. I think that those who are more proactive or have a more severe disease tend to frequent social media groups based on it. I'm not saying that this data isn't significant, but I can see a lot of under reporting going on due to people not reporting based on their mild severity,
Thanks for summarizing all the data you found 😊
Finally after three days I have enough energy to watch this, and my noise sensitivity is somewhat better. Thanks for the summary, I’m pretty new to this so it’s helpful.
Thank you for this 💙💙 this was really helpful, and interesting to see. Your content is always amazing and massively appreciated, and your approach is really thoughtful and considerate 💙
I wonder how many people with ME also have hEDS? Because ME is one of the symptoms of hEDS. And how many people with ME are neurodivirgent?
I understand the links with trauma/ illness/ long term stress. Long term stress produces more cortisol over a longer period of time. The body using it in this way, can suppress the immune system, leading to illness. Cortisol regulates metabolism, inflammation, blood pressure, sleep-wake cycle etc.
And that's not including the other impacts of stress, inflammation, placing strain on multiple systems, increasing the risk of other illnesses, psychological impact etc.
So if you have ME, and you're experiencing a stressful situation (which can happen just through having ME, medical care, friends, services, family etc), and your immune system is suppressed, that could maybe be one way that it could lead to other illnesses? Or a connected area of how that manifests in people.
I'm not sure if it's a common experience, but how many people with ME, have actually had a medical professional talk to them or offer support for that area of living with ME?
It seems they talk about the ME itself, but not the possibility of anxiety, depression, trauma or support for managing how stressful it can be.
Spoiler alert long message🚴
I’m 71.
I am diagnosed with autoimmune Hashimotos since 2005.
I was riding my bike a couple miles everyday, singing to music as I rode around the neighborhood, plus rollerblading. Very active all my life.
As a little kid the anxiety came from being scared of getting in trouble because my narcissistic mother was always angry. Breathing got you in trouble. I strived to be that perfect quiet kid to make myself invisible. Only female and five brothers. Also other abuse during my teens. Nobody accountable.
Exercise was my therapy to the toxic family landscape. Even after my 2018 successful craniotomy, benign tumor removed, 6 months later back to active life.
Fast forward to 2021 started tapering from klonopin, a benzodiazepine, 2mg reduced to .5mg in 2024, goal to be completely off before I die.
Bedridden from 2021.
I also had my 4th Moderna vaccine.
I experience
-chronic fatigue,
-brain fog,
-no pain,
-severe asthma.
-swollen throat glands
Is it ME/CFE?
Is it Benzodiazepine tapering?
Is it vaccine related long covid?
Nobody knows and No doc will discuss my questions.
Do you have a polling question for symptoms getting worse due to pressure changes (weather). Also, on specifically the overachieving polling question. I wouldn't be surprised if the overachievers are more likely to develop ME/CPS because they push themselves too hard and/or abuse their bodies by not sleeping remotely enough. It kind of ties in with the sickness susceptibility point you mentioned.
Great polling question. I'll post it soon!
Not sure about pressure changes in weather but I have a very small window of comfortable temperatures. I AM affected by moon phases! 🙃
@@helenwhills9828 I'm not only majorly affected by moon phases, I found out I'm extremely sensitive to where the moon transits planets in my natal chart. It's unreal. I had no idea astrology was this intricately involved in my health.
Very helpful video. Thank you - great channel 👍👏
Thank you for this videos
Not allowed to have a correct diagnosis until the doctor says, so until then there's *nothing wrong with me" except "anxiety and IBS". Its not worth even trying to join in with the community which matches, since theres no diagnosis. So i fix myself and thank those who have a diagnosis for enlightening me that i was never on my own through my whole life until now in my experiences.
I hear you. This is all being done to us on purpose. Don't let them win. If you say you have ME I believe you. No one wants to say they have this. It's too devastating and it scares people. It scares doctors too.
Thank you for another excellent video. Just a suggestion, when asking about remission, I think another distinction to add is whether it was only partly or a complete remission. Several years ago, I had about 4 months where I was able to do quite a bit more than usual, but still not even close to being able to do what I did before I got sick. Would that actually be considered a remission? That was over 5 years ago and I still look back at it wistfully.
Yeah this illness is very confusing like that for me too.
Thank you for all your hard work on collecting all this data, couldn't have been easy for you.does any one have eye problems on bad ME day's.my eyes get sore,ache and go red.alan in the UK
My eyes hurt too. They lose focus,burn, and itch when I’m super tired.
Thank you for your reply,so sorry to see your degree of ME, mine is moderate with over 20 symptoms,had it for around 29 years, every day is a struggle, I am 75 now but still hopeful, take care Alan UK
@@AnnBaxter-s2l Wow that’s a long time! I’m so sorry. Yeah honestly it’s rough, I spend all day in bed doing nothing but watch tv and use my phone.
It just an endless loop of the same thing.
I hope you have some good days in the future.
Yes to the eye problems Alan. Look up 'blepharitis'. Inflammation from blocked eyelash oil glands. Can also be complicated by skin mites feeding in them. Discovered this when I was researching eyelash dandruff. 🙃
@@helenwhills9828thank you for your reply,will follow this up take care Alan
In the matter of how I used to be, too many folk seem to roll their eyes as though I just made shit up about my past to justify some difference in how I am now. I show them pictures and they go quiet. As for losing friends and family. Yes, true, I have lost a lot but, part of that is more complex. The majority were because I couldn't maintain a friendship, stopped accepting party invites or, left early. I stopped drinking because it made me feel bad, That changes a social standing. Many family members just keep their distance as they don't want to burden me
I appreciate you trying to talk softly for the severe crowd but the problem with that is every time an ad comes on our ears are BLASTED with sound. You’d be better off raising the volume a little. Thank you.
Thanks for the feedback.
Your username is hilarious! 😂
Dedicated to everyone going through this:
🎶J stands for jives and justice too
I love you so much, I don't know what to do
I know about the beatings people put you through
It takes a lot of doing to do what you do
Evil has ways to charge into battle
Drugs can be fun but watch the hook
The glassy-eyed devil, he's a crook
Just check out how many souls he already took 💉
"You can't fool me", she said
I laughed and said, "I know"
"You can't sing the blues and live", I said
"I know", she said, "I know"
Children are lost
We're falling to pieces
I know the way and it ain't cool
Judgment has come with an iron rule
Check out your existence or stay a fool
"You can't fool me", she said
I laughed and said, "I know"
"You can't sing the blues and live", I said
"I know", she said, "I know" 🎶 (Justice - Kim Milford)
Thank you for sharing! It would be interesting to know if ME got worse after an infection (covid or any other) I was moderate and covid made me immediately severe and I found many others in a similar situation!
Check the polls, he actually posted that question but didnt include it in the video
I appreciate your doing these. It is very helpful and encouraging.
(I've had this since 1990!)
Thank you for gathering this information.
Thank you for the video. I would like to suggest a question about blood pressure, do people with ME have high, normal or low blood pressure. In my case it is low.
I'll post a poll in a couple days 😀
Great idea. Also, are you having orthostatic issues, passing out etc. I suffer from hypotension too and have passend out numerous times in my life (> 30 times).
Recent data shows POTS can give all types of BP.
Since I know I have low BP I am very cautious - I eat more often and always have some food and water in my bag and never passed out. When I go for a walk I notice that I don't go straight from time to time, but then find some bench and have a rest.
Mine has been both low and high. I notice under chronic stress situations or if I am "pushing myself" because I have to go to a Dr appt or for tests at the hospital, etc. my BP is high.....very high. It stabilizes after many hours though.
Alot of these also correspond with CCI/AAI or vagus nerve compression and EDS. I wish more people would teach about them
With heat, I wonder if it is because, when it's warmer here I am inclined to do more and, close connection, my symptoms get worse. However, if I am on vacation somewhere hot and NOT driving, so, zero committments or obligations, I feel a lot better. So clearly, without realising it, my symptoms are also related to what I force my mind to do.
Before I had ME i got colds and flu all the time, but since I have ME ive hardly got sick, I think twice apart from covid and they were both in the last year when my ME is a lot more mild.
I guess this is where many followers is essential. I doubt I'll ever get that many to my own channel. I only run it as I couldn't find any support sites in the UK and we are particularly awful here for ME/CFS understanding. www.youtube.com/@MeWarriorUK if that is OK, delete if not. I subscribe to you because you talk a lot of sense, you clearly get it. The ironic thing I didn't realise when I started the channel is that I rarely have the energy to make a video and am constantly forgetting what I am going to say. However, I feel that is sometimes useful as it demonstrates visually to viewers. I also don't worry about how I look as, folk are going to make assumptions I always can.
MErs:
72% of us are not able to work.
1/3 of us are bedbound.
82% of us are the only people in our families with ME.
79% of us flare up with heat.
76% of us have had doctors state that ME is all in our heads.
76% of us do not believe there will be a treatment or cure.
66% of us have gotten worse.
47% of us were athletic before ME.
45% of us have seen 10+ doctors and/or other medical specialists.
29% of us are not Type A Personality.
Fully Recovered 1% ** Fully Recovered 1% ** Fully Recovered 1% ** Fully Recovered 1% ** Fully Recovered 1% **
I certainly believe chronic stress prior to an illness or trauma is what causes ME/CFS.
I think there will be some treatment for certain parts of ME/CFS but not as a whole, as I feel there is no root cause.
Most of the data points to a post viral illness. There are millions of people with ME with no prior Stress or Trauma. I do think stress has some role though.
I read a few articles saying EMDR therapy can cure or eliminate Me/Cfs symptoms. Has anyone tried it?
Psych interventions don’t cure physical disease. These therapies are often pushed on patients from the psych lobby and there is no evidence these therapies help pwME. Psych therapies are rated very poor quality evidence by NICE and are not recommended as “cures” for pwME, whether it’s CBT, brain retraining, or therapies like the lightning process or other psych therapies, they generally have no evidence they do anything other than subjective questionnaires. This is backed up by decades of patient surveys that agrees with the science. Patients are generally targeted by snake oil merchants pushing often expensive “cures” but there is no actual scientific evidence that supports these therapies. Most of us long timers have tried them all out of desperation. As patients are often targeted with false psych cures, they actually have a warning in the U.K. NICE guidelines about this. So please be aware and look for treatments that are based on known ME pathologies and are supported by scientific evidence of efficacy. Testimonials are not actual science but heresay.
How could therapy cure a neurological autoimmune condition? This is harmful misinformation. Scientists took immunoglobulins from ME/CFS patients and gave it to animals. The animals developed fatigue, pain, and balance issues.
My comment was erased. Figures.
There is no filter set to erase comments. If you don't see it, feel free to repost it.
@@fight4me747 You have no idea how hard I worked on it. I'm too severe and demoralized to remake it.
But thank you so very much for doing this video on the results of your polls for 3 years!! This is gold.
Actually I'll put the part from someone I replied to below from my original comment -- that part should stick. And thanks for letting me know you didn't erase it.