The greatest problem for most of us is that in the beginning we do not have the slightest idea what is wrong with us. By the time when we learn what our illness is, it is way to late to start pacing ourselves. I think that by this time the damage has already been done! Nevertheless better start doing it then by never pacing.

Love this

Here’s my take on it: I learned recently that it was actually originally named ME, but then psychologists in the UK renamed it CFS because they felt it was psychosomatic. Now that we know more about it, we should use the name ME (until someone comes up with a better one), because it’s a more accurate name than CFS. The name CFS was entirely meant to diminish the illness and demean patients, and that’s exactly what it has done. I only use the CFS term because that’s what most people in North America are familiar with, but I only use it if they don’t have any clue what ME is, and I explain why we are getting away from the use of CFS. “Chronic fatigue” is a symptom of many chronic illnesses. It is a symptom, not a disease. And “chronic fatigue” often gets confused with “Chronic Fatigue Syndrome”. Someone might be told they have “chronic fatigue” by their doctor, and then when someone says they have CFS, the person who has “chronic fatigue” assumes that person only has the same level and type of fatigue that they do.

I have CFS and am looking to get an ME diagnosis and i cant do what i want to do. I had to drop out of school and i cant work. For the last 4 fucking years im bed or on small trips, i have little to no independentce. I cant live without help. I use mobility aids; Rollator/wheelchair combo (transformer Rollator) walking stick. looking to get a manual wheelchair and an electric attachment. I don't want to I'm 20. CFS/ME sucks to hell and im constantly feeling like im worthless. Im crying watching this as its so hard to talk to my family about it. My dad struggles to accept I'm disabled always asking if, when i rarely go out, if i wont use my rollator/wheelchair. I deal with all of them daily, i don't have severe hairloss anymore but it does happen. I cant keep weight on, i have prescribed calorie foods/drinks. I sleep 10-12 hours a day. I cant do things with my little sister.

Hi i wanted to share my experience of cfs/me IBS and GRE im gonna start to the when i got sick DO NOT TRY THIS seek DOCTORS or Medical experts i started the journey of cfs/me After 1 year and 7 months when it started was a GRE that started as anxiety at hospital with 120-130 Beats of heart they gived to me alot of medicine and pyschiatric told they did not know why all not working they started to say it was me the problem every medicine i took i feel bad more and hurting i was strong before but with time i losed my strenght and hope i took 14 SSRI antipsicotich benzodiazapines so in total is 15 then at middle of june 2024 i was going to hospital beause my hearts was pumping too much beats they bombed me around 1,00 mg of valium but nothing worked and told me the TSO specialist that i should take talofen now the weird thing started when my partens took the medicine and i took 0.10 for the first ime of it started something weird i did not notice i feel more relaxed and something changed on all my gbody i needed to go sleep then it started for 3 seconds my body stopped all only the eyes and thinking was working i did not feel the body at all when i got scared i did got panick anxiety really strong but then nothing next day i feel more refreshing likes normal life before i could eat spicy and some cake other things that always my body rejected oil and pizza i did not thinking about and keep going have a normal life for 3 weeks then i made the mistake of my life or something happened i got revlar ellipta that gived to me for error medical always for anxiety this test was before i took talofen so they did suspect anxiety stuff and the most horrible thing that the doctor did check the thorax failed the test After i give to another medic sayed it was wrong posture so after using revlar ellipta i started to feel nausea and vomit i did not thinking about when i took the autobus profume and all other things started to get me syntom like vomit nausea i needed to leave then my big error was going to hospital for blood check i got infected then i started to lose my body and mind i did get recovery but not all i needed to take help then after that i got another virus at 25 August that destroyed me alot but but weird thing i can sleep but still have big problems now i have persistent diarrea they dont know what is happening i am losing alot of elettroidi water is not enough for the moment i am taking gabapentin citalopram gelsectan periodo forte hoping this is gonna be better ask me anything and do not try this without a doctor or specialist for talofen i do not know what happened DO NOT TRY just help spread that talofen did something weird and i was always a negative aurea but that 3 weeks i remember i always thinking bad things but anxiety pain low energy even GRE IBS vanish is weird

What causes this disease? I have it bad very bad 😢

I’m pretty sure I have this. Unfortunately idk if my dr entirely believes me, though she did imply that maybe I have long Covid, however she is testing me for apnea to see if that’s the cause of my “tiredness.” It’s not. And Sleep med even said she can usually tell if a patient has apnea based on the questionnaire and her assessment. She’s really unsure I do because I’m not showing the signs she’d typically see, but not ruling it out without a test, which is fine. But even my bf said I don’t stop breathing so, kinda indicates I don’t. I’ve witnessed untreated apnea because my bf has it. I was the one who told him I think he has apnea because I’d notice him stop breathing. Plus the day time falling asleep while having a conversation or while driving (which is why I wouldn’t let him drive longer distances alone). He’s since gotten help. I don’t have any of the issues that come with that. And even if I had apnea, that doesn’t mean you still can’t have ME. I don’t think I have ME severely. I had a really bizarre medical thing happen last November where drs thought I had mono. I tested negative two or three times. This lasted 3 months. I haven’t been the same since. All I could do is sleep. I slept through Christmas at my bfs family’s house. There were like 20 people there including young kids. I went upstairs and ate, then went back to sleep after while everyone was opening gifts outside my door. I opened mine later. Now, if I walk into the store or Costco, I get fatigued, and worse is when I suddenly feel like I spike a fever, start sweating and feel like my body wants to collapse. It’s like I’ve taken a few Benadryl. If heat is involved, I have mild swelling in my hands, arms and face. I’m known for always being cold, but now I can’t stand the temp being above 74 F and sleeping above 70 F. Last November through January, I couldn’t be above 65 degrees or I’d be drenched. I’d turn on the heat and have to turn it off almost as quickly as I turned it on. My dr is pretty positive that I have fibromyalgia. We’re ruling out my vitamin D deficiency but since I havent seen a change, and given my family history, it’s pretty set that it’s fibromyalgia. My inflammatory markers are also mildly elevated and I’ve done so many tests and everything has come back fine. She now wants to test me every 6 months. Unfortunately, I keep gaslighting myself. Not because I’m in denial or anything but because I know when I do go to the store or if I want to go to an event, I know how my body responds to physical exertion. I feel wrong for wanting to use a wheelchair or an electric scooter because I know I can walk, but I also know it comes at a consequence. I think in some ways, I’m less concerned about what the general public thinks and more concerned about my family and my bfs family. The idea that I’m some kind of hypochondriac or over reacting or making it out to be “worse than it is.” I know I shouldn’t care… but as a person who has other disabilities, mainly significant neurodivergence, I’ve been judged and dismissed my whole life. It just feels like another thing to tack on for people to call me lazy over.

It’s extremely vital. Listen to what he’s saying. I’m in the severe stage from constant PEM crashes. It’s frustrating because now I can only do something for 1-2 minutes and then rest. But I’m finally starting to have stable days again.

Thank you for reminding me I've had Me for 30 years I'm in relaspe now I'm bedbpund now I was severe bedbpund first few years gradual got to moderate to kinda lite but since cipro toxicity in 2012 I'm severe mostly bedbpund wish could get back to my old sick self found your videos a couple months ago you help me slot it calms me you speak alit of common sense but how are you doing now?

I took Pamela Roses Fatigue rescue 4-week course. After struggling on my own. It was a lifesaver. She has helped so many people recover. It's also how we respond to our triggers & our symptoms when we get them.

Thank you for this great information!

I use the Visible wearable and also a health tracker watch. The Visible app has been a game changer.

Thank you. I wish some of these things were more accessible in the UK. It can be hard to get certain drugs here that are routinely prescribed in the U.S.

You are so right- I had a really bad crash last year and I’ve never recovered to where I was before. I’m now terrified to have another because I now know that if I have another I will not return to where I am now.

You are so right, through family commitments I had to keep going, commitments are much less now but it drove it deeper.30 years on and still struggling.thankyou for your videos take care Alan UK it deeper.30 years with it now, still a struggle

After more than 15 years with ME/CFS, I no longer think migraines cause the sound and light sensitivity. I think these are signs of mild concussion (on top of mild concussion, on top of mild concussion). Effects list is too long to paste, here, but also pay attention to recovery (and lack thereof), to see whether this fits your case. I hope for research on it every single day.

Do 'mindbody syndrome' work and reverse it.

Suicidal ideations. The first few years was really bad. I miss all my pets and want to be with them again. Just running the clock out now... actually not running, sleeping.

I pushed thru and have 3 young kids who need me, so...this have resulted in me being 99% bedbound. I can barely get to the toilet once every 3-4days. (Have urinary catheter due to nerves not longer working around the bladder) So DO NOT PUSH THRU!!!💙🫂💙

Great advice for newbies. I'm 41 years in and very severe. I use an old Garmin Forerunner 45s and the Connect and Visible apps to keep tabs on what's going on with my body. I had to do GET and CBT back in the 1980s and they made me much worse than I was. Rest and pacing really are the only things that help.

Hello! First of all, thankyou for this video. I have only recently found your channel, and your videos are very interesting, informative and helpful! 😊 I have had M.E. for quite a few years now (in addition to chronic pain and autoimmune issues), however back in February of this year, I had a very bad case of Covid (I had had it twice before this, but was no where near as unwell as i was this time around!), but on top of that, I had an awful infection in my hand (when gardening, either something bit me, or a small thorn or splinter became imbedded in it and got infected). I "pushed through", therefore leaving it far too long and the infection turned septic. I just let it keep going on and on, even though I legitimately felt like I was on deaths door...which in the end I actually was, as sepsis is a medical emergency and has a high mortality/morbidity rate. I didnt want to complain or be viewed as a "weak" or a "hypochondriac", and also being a single mum, I didnt really have a choice but to keep going. I also tried to hide how unwell I was from my kids, family and friends, as I didnt want to worry anyone. I really should have known better being a Registered Nurse! Im sure other M.E. sufferers can certainly relate, when I say that I felt like I had no other option but to just keep pushing through and not allowing myself to get the rest or ask for the help that I needed. But by god was I unwell!!! And I just kept going until it got to the point that I required hospitalisation and IV antibiotics for a week, until the infection/sepsis was finally under control and I had recovered from Covid also. I'm not sure if it was the bad case of covid, the sepsis, or a combination of both, however my M.E. became the worst it has EVER been after that! For months now I have been incredibly debilitated, so much more that usual, and basically bed bound. Just walking to the kitchen for a glass of water, to the bathroom or having a shower...all things that should be done with complete ease, feels like a climb to the top of Mt Everest! And afterwards I am completely and utterly wiped out. A trip outdoors or to the supermarket? Oh forget it! Everything is such a huge effort/challenge...even the smallest of tasks. Ive never experienced such a bad flare up of my M.E., and certainly not for such an extended duration of time. It has been almost 8 months, and while it has improved somewhat, the unbelievable fatigue and other symptoms are extremely hard to deal with, and causing much more significant depression and anxiety...particularly due to the fact that I am having to rely on my children (15, 17 and 21 years old respectively) and my mum to help me so much with basically everything! My apologies for the long winded story...well, rant really! I dont really have anyone to talk to about this, as no one around me truly understands how hard this is. Its not their fault of course...I know it is not easy to understand something they havent experienced for themselves, however this makes for a very isolating and lonely existence 😢 I genuinely appreciate this channel for giving me the feeling that i am not truly alone in this! A sense of community and belonging can be so important when youre suffering or dealing with things that others find difficult to comprehend...so THANKYOU!!! Love, light and respect to all. -Alana from Australia 🇦🇺🙏❤️

I’m so sick of this sh*t…. 3 yrs of it.

It’s good advice to find others who truly understand; it can offset the loneliness & isolation caused by this disease and by being dismissed by those close to us who just don’t understand. Thanks for the video!

We need to be reminded of this constantly, and on our good days not to over do it. Thanks for your sincere videos. It must even be harder for you being in the minority with this illness as a man. Sending warm hugs

Been sick for not even 3 years, a virus in July this year made me right away incredibly worse (careful about infections!). I crashed for the first time in 3 years attempting to return at pre-virus baseline, now I am mostly bedbound 500 steps a day. 1 crash. I am so mad, I just turned 27. To be honest I do not see myself coming back from this.

Thank you for sharing your story ❤

i am in a new area and i wanted to go for a walk. the road is on a slant, i woke up the next morning and had injured a leg muscle so bad i couldnt walk for a week.

I pushed too hard in the beginning. 10 years later, I needed you to tell me today not to push through as I battle my anxiety over not doing, and as I still have trouble hearing my body. Thank you for telling me not to push myself today.

It is soon 1 year ago since i have got ME/CFS

Yes yes yes ❤

Im trying to get into a post Covid hospital, but no one wants to take responsibility. Then again I regret trying to build a life in Europe.

Your videos are very enlightening. continue please❤

Be careful with vitamin D though.

Does anyone know what micro organisms (could) cause the constant soar throat?

The problem with live q&a, is I’m in Europe so usually I try to sleep.

Thank u❤😊

Thank u❤😊

Hi! Hope you are doing ok. Just had a televisit with my doctor, and we discussed this. I highly recommend the Visible App with polar armband. I use it it conjunction with my Garmin (for sleep/stress).

We need help fatigue is bad bedbound most of the time we need help thanks

Is there a video about your personal story? About how you got sick and how it went down for you.

100%. Something I still struggle with years after getting sick but the reminder is much appreciated!

🥀Thank you for Emphasising this.we all need to hear it OVER & OVER.Its tough to do & we all fall into it im sure,its just auto too.Very interested in Wearables video.Stay well All.Thanks J🥀

I've Suffered HELL in Hull,UK;From CFS/ME/FMA!!... :( *We DESPERATELY Need medical help!!... :)

It really is next to impossible to explain ME to someone what doesn’t have it. People who are around it a lot might have a better insight than someone who doesn’t know about it at all but it’s still too broad to ever capture in words. There are just so many symptoms and most people won’t have ever heard about it before you bring it up or if they have they still have the belief that it’s a psychiatric issue. It can be the most isolating part of it.

people dont know the burden of living with it is.

I've recently discovered I have ME after 9 years of misdiagnoses and seeing countless specialists to have a KZbin algorithm to finally give me the correct diagnosis 😅. I do majority that you mentioned in this vid, but I was also dealing with palpitations for the last 9 years with 10-12k a day without being able to figure out why or any doc being able to give me an answer. And having noticed a slow recovery over the years by implementing many of the things you mentioned in the vid, the thing that really helped bring my palpitations down by 90%, and improved my overall condition was breathing exercises, and vagus nerve stimulating devices and changing my mindset and trying to let the negative emotions of fear and frustration go and having acceptance. Exercise is also key in recovery. From being bed bound at my worst, I forced myself to walk as far as I could which at the time was end of the road with intense vertigo and lightheadedness to now daily walk of 30-40 minutes with mild symptoms, which can be challenging but just having the ability to do it has a huge impact on your mental and emotional state. And I try not to miss a days walk and I know the days I don't go for a walk I feel worse. But sometimes the flare ups can be severe enough where I just decide to rest. Running I noticed has a significant improvement in my mental state. I try to run for 10 min 2x a week which I had to build up to. After my run my mind is noticeably clearer, and my tolerance to electronic devices increases. And if I stop running I start getting migraines 2-3x a week compared to when I run I get 1 a month if that. But there is the post exertional malaise that comes after exercise so finding the balance of getting the positive effects of exercises and not over exerting to cause a major flare up is a tricky balance but the more you do it the more in tune you become with your baseline. Also for me Accupuncture was a life saver. At my bottom when I was close to throwing in the towel, the calming effect of accupuncture has on the body for an ME sufferer is truly great. After a session you can literally feel the nervous system go from a flight or fight state into a zen like state. The effects are temporary but for the few days of relief I receive it is a much needed break.

Great to see you again. Hope you're not feeling too bad.

Most of the doctors have no idea about cfs.

Sorry I wasn't able to make the live. Not sure what time you did this but I'm in the UK. Either nigth or day, I sleep a lot! Badly, but a lot. 😄😫

Brain fog….is the worst….