What is M.E./CFS❓❓❓

[@dshepherd107]

ME is a mitochondrial dysfunction problem at the most basic level. Essentially they’re not producing enough energy in the form of a molecule known as ATP (adenosine triphosphate). There are a lot of other things preceding this that eventually cause this to happen. While, I think it’s very important to realize most ME/CFS cases are the result of post viral syndrome, some cases are the result of severe prolonged stress, which can effect the body’s autoimmune system, essentially overtaxing it to the point it becomes dysregulated, leading to a host of autoimmune-related diseases and disorders, particularly. Stressors can be environmental (psychological emotional, physical)

[@lifewithspirit323]

Congratulations, Johnny, on your channel growth! I appreciate the perspective you bring, as well as representing the male M.E. population. Keep moving forward, and have a beautiful day!🥰🌻

[@fight4me747]

I appreciate that!

[@Zebo262]

Thank you for this 💙💙💙. I think it's really important to remember that it's a fluctuating illness as well. So it means for a lot of people the intensity of their symptoms are constantly shifting and changing in intensity as well. And that for the people who may experience good days/moments, either way, you're constantly trying to think of ways to conserve energy (in other words, cut out excess use of energy, or reduce doing things that aren't as important or aren't a necessary use of your energy). And trying your best not to fall into the trap of feeling better and thinking you can do more, or trying to catch up on everything.

[@Boojerella]

ME : my definition : Mitochondrial Exhaustion! Why do people not talk about the mitochondria? I think most supplement should be aimed at mitochondrial repair…. Your mitochondria are acting in self-defence and need to be calmed down in order to create energy. It’s all about mitochondria. And reasons why your mitochondria could be on self-defense? Chronic infections, chronic stress, PTSD, childhood trauma.

[@hannosolo]

True. I have not looked at anything on the subject for a long time. I thought that they had found the cause when I saw a documentary a few years ago, and they found mitochondrial membrane degeneration in many patients. Do you know if there was any progress with the investigations?

[@dshepherd107]

Hi, you’re spot on. It is absolutely a mitochondrial dysfunction problem at the most basic level. Essentially they’re not producing enough energy in the form of a molecule known as ATP (adenosine triphosphate). There are a lot of other things preceding this that eventually cause this to happen. Also, I think it’s very important to realize most ME/CFS cases, while often the result of post viral syndrome, some are the result of severe prolonged stressors, which can effect the body’s autoimmune system, essentially overtaxing it to the point it becomes dysregulated, leading to a host of autoimmune-related diseases and disorders.

[@Boojerella]

@@dshepherd107 absolutely agree. Post viral effects are the final straw that tips the body's systems out of whack…very probable that there were more than a few pre-existing infections/toxins before this.. Dr Sabine Hazan, a gastroenterologist and clinical trial researcher says that the vaccines should have been replaced by a policy of working on your Microbiome… most long Cov and v@ccine reactions occur in people who have low bifidobacteria to begin with.

[@AnnBaxter-s2l]

Thank you so much for your channel,had ME for 28 years but have found your channel so helpful in many ways, the Brain Fog is so frightening,can lay me up for long periods, take care Alan in the UK

[@akcharly]

Explaining this the way you do is a true talent

[@sherrythebirthdayclown3634]

I would basically say all through my childhood I've had it I was always getting sick as a child my mom concerned about why I was always getting sick why I was always tired when I would play with my friends outside for a little bit I would come home exhausted would be in a lot of pain so when I say what it's like to be going through this and I wouldn't wish this on anybody because I wouldn't want them to have to go through what I go through on a daily basis

[@samanthahayes217]

I have almost all the symptoms but mine is because I have Hashimoto's disease---thyroid autoimmune. And yes if I have a good day, I have learned not to do a lot because I pay for it for about 3-4 days. I believe there is something more going on in my body just can't get my doctor to listen. I sleep on average 10-12 hours a day and even then sometimes during the day I get so sleepy I can't say awake yet I do get insomnia, which I also pay for.

[@abc8857]

Which specific doctor should I consult? Can general practitioner help?

[@Mike-mh5rl]

Hey bro I just came across your channel. I was dealing with very bad ME. I was able to fix it in a months with urine therapy. I did a ton of research and I was able to get in touch with some people who are professionals that work with urine to treat a variety of ailments. It works. If you want to talk on the phone or email or whatever let me know. I can give you the details. But basically what they told me is that CFS is a deficiency in energy which urine restores. It’s an Eastern medicine view of looking at the body. Don’t worry I’m not charging anything. Just here to help. Peace

[@marconiki6302]

Shere with others please. We are open for hearing too.

[@Mike-mh5rl]

@@marconiki6302it’s basically drinking your urine. In the morning when you wake up followed by after every meal. If you want we can chat over whatsapp or something else

[@Mike-mh5rl]

@@marconiki6302 you can drink it all day as well . Look up “The water of life” by John Armstrong

[@mattpotter8725]

I don't know if I have ME, I don't know if the symptoms you're describing mean that you can't function every day for months on end or whether you have what I would call flare ups in between feeling fatigued, but just about able to function the rest of the time, if that's the case that's me down to a tee. I'm now in my 40s but even since my 20s, thinking about it now I did have an episode in high school that made me miss half the year with similar symptoms, but after going to see doctor after doctor, having test after test, even being referred to a specialist and having a CT scan everything came back negative. The symptoms I have, when I have my flare ups, are fatigue, dizziness, headaches (sometimes more of a dull pain in the front of the forehead, sometimes migraines), brain fog (though this has only really been noticeable in the past few years), sore throat, head cold and congestion, insomnia, aversion to light, feeling hot (though not having a temperature or fever), and when I'm not having a flare up nearly every day, if not every day, I feel as though I wake up tired and not refreshed. I'm usually quite an active, sporty person, in between the flare ups, which can happen every month, every few months if I'm lucky, I like to run, get out into the wilderness and just get some fresh air whilst trying to keep fit. It also helps massively my mental health as you can just think about things in a good way whilst the heart is pumping. I've run half marathons, though not lately, in periods where I felt fine, still getting ill every month or so. I stopped going to the doctor after all they kept doing is giving me antibiotics, which seemed to clear things up, but after a month or so I got sick again. After talking the last doctor, and them agreeing, that I shouldn't be taking so many courses of antibiotics (I didn't want to be reliant on them, and was worried taking to many might make them ineffective if I really needed them for something I thought might be more serious), the doctor, without mentioning ME/CFS said to just rest whenever these flare ups occurred and after a few days, maybe a week off work I'd be feeling better and able to return to work, and this was mostly the case, I recover. The fatigue when I not sick I just put down to the stresses of everyday working life, now the more I watch videos and look into ME/CFS the more it sounds like what I have (even though I hate to self diagnose). Because of the dizziness, the congestion, the headaches I have been working on the assumption that I had chronic sinusitis, which may still be the case, but that doesn't explain some of the other symptoms and what I have seems to be getting worse with age. If anyone out there has any thoughts I'd love to know. Should I just knock off the exercise? Does this mean it's not ME, the fact I can still, albeit in a very limited way, do exercise from time to time? I only do it as and when I can, obviously I only can when I don't have the energy or feel dizzy, and don't do it the day after feeling well enough to do it. As I said without it I think my mental health will suffer greatly. I have great support from my family though I don't think they understand and I often get the comment just get up, move about and you'll be feeling better in no time, when I know it doesn't work like that. I don't know what to do really, except feel that although there are new things that I can try, some that might work, others that won't, and to keep on trying, never give up, that I have to accept the condition I have and do the best I can. Thanks for this and other videos you've put out. I've only just found your (and other) channel(s) so will have a look at some others now, but something in this one resonated with me. Thanks for putting it out, it makes me feel as though I'm not suffering alone.

[@ambermartin3961]

This is where it can vary greatly among individuals. I was so mild for a bit over a decade, that I'd forgotten I had been "sorta diagnosed" (at first with "recurring mono" and then "oh, yeah, you probably have CFS... there's no cure; take antidepressants and pain meds and good luck; bye). I just slowed down or stopped my training/workouts during "fatigue cycles." A nutritionist helped more. Then I got Parvo, which is weird enough as an adult. But I had a really painful, lingering version. So I thought that everything I felt afterward for 8 years was residual symptoms from that plus age and stress. I still fought to race, backpack, bike everywhere, and workout. I plummeted for no discernable reason in Nov. 2020 (no COVID....nothing but an extra bad "fatigue cycle"). I hit a semi-remission in July 2022. I still can't workout anymore, but I figured out some tricks and tips. This is all to say that it's truly different for each person. I've been basically bedbound but never needed feeding tubes. I've been so mild that I truly forgot the weird diagnosis existed. And I've probably had a couple of decades where I just thought I could ride out anything.

[@mattpotter8725]

@@ambermartin3961 Thanks for your message. It doesn't sound too dissimilar to my experience. Can't remember what I said in my original message but I was diagnosed with sinus issues, even went to see a specialist, but they couldn't see anything, and I just didn't know any better. The thing is that until last year when I had my episodes, and sometimes even when I didn't, I was hot (without fever or even raised body temp), dizzy, tired, and to get up and get food and a hot drink but nothing more. Over the past year or so I'm not getting better after a few days rest and looking at some of the symptoms of ME/CFS it has made me wonder. I'm taking Vitamin B1 supplements and it's helping a little. Getting a medical practitioner to do anything other than give antibiotics is a nightmare and whilst that can help relieve the symptoms a month or so later I'm back again. The only thing I would say is, like I think you are doing, is to stay positive and try and do things that work for you, and stay positive, maybe something tried will just work.

[@kweider2643]

Swimming is an excellent, low impact exercise that’s great for body and mind.❤

[@ambermartin3961]

​@kweider2643 the issue with ME is any energy expenditure. The impact doesn't matter. Those who are really bad can trigger their PEM (post exertional malaise) by just having too strong an emotion or be overwhelmed by any level of light or trying to think. The medical world only stopped pushing GET (graded exercise therapy) on us a few years back. Many doctors still do. It truly has to be complete, radical rest until we figure our our baselines. And then we just need to stay within our energy envelope.

[@mattpotter8725]

@@ambermartin3961 Thanks for this. I think you are right about finding and understanding a baseline, which is unique to all of us, for some it may be extreme so not doing much at all, others it may be easier with a more normal life. Again thanks because it has given me things to look into and ideas that I might not have looked at before.

[@happy-v8h]

I got staphylococcus from eating a steak/chicken nuggets. It started in mouth . Have not felt normal since and have many of these symptoms, one extra stiffness of spine or spinal cord.

[@kristiankrause5723]

Is ME something a GP can diagnose? I've been kicked around the specialists (Neurology, Rheumatology, etc) and everything from MS to RA has been ruled out. I happened to come across ME a few days ago and it seems to fit perfectly. I messaged my GP and she agreed with that assessment. I'm hopeful it's not something that requires Rheumatology because the wait time in my area is over a year. Neurology is at about 6 months.

[@KidCity1985]

Yes

[@keith48993]

Please start earthing/grounding guys and girls. +16hr a day does the trick.

[@fight4me747]

That honestly does have some benefits.

[@Truerealism747]

Does it help pain symptoms

[@keith48993]

@@Truerealism747 Yes, it helps to reduce all the Inflammations in the body (and brain) causing pain.

[@Truerealism747]

Walk barefoot?

[@dianafields6475]

Great video! Good to see you. How do we deal with antibiotics? I got so sick from 1 dose Cipro., so switched to Bactrim for a bad UTI. After 4 days I had to quit all antibiotics because I felt horrible. Went to the ER and UTI is gone, and they tested me for covid because the doctor didn't think the antibiotics were the issue. Afterall tests were normal, they agreed it was the antibiotics.

[@lifewithspirit323]

Diana, I am so sorry to hear that. Now that’s one thing that my body can tolerate. I have multiple chemical sensitivity, so I’m extremely sensitive!🌻

[@fight4me747]

Hey there! I do not do well with Antibiotics either.

[@dianafields6475]

@fight4me747 I don't have health insurance, but I feel horrible and was so afraid the UTI has gotten worse or spread. I haven't felt like this since I was first diagnosed with Epstein-Barr (it has been 16 months and EA is still showing positive at 10.9)

[@Truerealism747]

Those types are called called chemo antibiotics they caused my father's CFS but if you are allergic all your family will be and we've found out related to Asperger's adhd

[@patriciahogan4705]

I have 19 of the 20 symptoms you listed. I've had them for over ten years. Ten years ago doctor before he retired diagnosed me with Fibromyalgia but I've always thought it was more than that. Where would I find a doctor that believes these illnesses are real, my current doctor doesn't.

[@Truerealism747]

Fybromyalgia is a part of me am sure where do you have pain everyday

[@patriciahogan4705]

@@Truerealism747 Every muscle hurts all the time and deep in my bones. Then an intense pain will hit in different places, sometimes the top of my head, sometimes the knee or toe so bad I'm in tears. Sometimes my chest feels so tight I'm afraid I'm having a heart attack. I wake up as tired as when I laid down and in so much pain I pray God gets me through the day.

[@Truerealism747]

@@patriciahogan4705 same here 26 years I've had a fall 1997 broke tailbone triggered pelvic pain then CFS now.just lost my mum to severe ms found out I have heds as obvously my.mum and Asperger's ADHD.my father had CFS now ok but damaged thyroid sure it's the ADHD causes it low dopamine after a trigger albeit.mist if us undiagnosed ldn help s with fatigue IBS but not pain my constant pain shoulders armpits tingling left leg how long?

[@lizbethglickman2725]

If only I could get my PCP to bookmark your channel. Sick 30 years. NC way better than Boston.

[@Truerealism747]

Do you have pain symptoms everyday worse than the fatigue for me

[@lizbethglickman2725]

@@Truerealism747 Yes...most especially since Pfizer booster last Sept. No one will take this seriously.

[@sheilaalpha1]

How do you find a doctor

[@vanessayurrita3724]

Is it Multiple Esclerosis?

[@fight4me747]

Myalgic Encephalomyelitis

[@vanessayurrita3724]

@@fight4me747 oh okay thank You

[@leslieannvanhumbeck7630]

I wish I was dead.

[@crisnemitz1606]

@leslieannvanhumbeck7630 Leslie, it breaks my heart to hear you say that. I feel like that a lot of the time also. I have no words of wisdom to offer you. I've been dealing with this since 2000. The last 10 years I've been probably 95% bedridden. This is such a vicious disease. I've often almost wished it was cancer or some other awful condition. At least then there would be things I could do to fight to get well. I just wanted to let you know that there was someone out there that understands. Please stay safe. The people in your life need you, even though it doesn't feel that way. ❤

[@suzanneainsley2414]

It really is a painful illness and its a very different disease when you go from mild to severe to very severe. Only folk going through it understand that surviving each day is a massive achievement. The suffering pushes you to the edge of your humanity. More research is being carried out compared to the previous 30 years, there will start being treatment options soon. Probably not a cure but treatment that will lessen symptoms & increase energy. Hang on as best you can.

[@crisnemitz1606]

@@suzanneainsley2414 I agree. I think the existence of " long haul Co-Vid" finally opened people's eyes and even the media paid attention. I believe there will finally be money allocated to research because more of the population will finally understand this is real.

[@abstuli]

Do not give up. You may have Mast cell activation syndrome (MCAS). Many people with ME/CFS have MCAS as the cause of their ME/CFS symptoms. MCAS is a very common newly discovered mast cell disease that can have all the symptoms and triggers known from ME/CFS including PEM. Use the headings below to search for videos and articles on the internet. • MCAS: what is Mast Cell Activation Syndrome? - Online interview • The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin • Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin • Here's How You Treat Long Covid | Lessons From MCAS - Dr Tina Peers • Symptoms of mast cell activation - Annals of Allergy, Asthma & Immunology

[@fight4me747]

Mast Cell is treatable to a degree, and many people with ME have tried to treat the MCAS to see if they get better. Although many see some improvement, most do not get fully better.

[@KidCity1985]

You are very handsome, thats all.

[@vivianhamood4852]

Could active Epstein Barr virus be a contributor to ME?

[@fight4me747]

Many believe it does.

[@ramonavincent1172]

Yes.

[@sojourner2013]

Has anyone tried colostrum?

[@lifewithspirit323]

Yes, I have. I took it for maybe a couple of years. Unfortunately, it didn’t heal me, nor did I feel better taking it. But everyone is different.🌻

[@vkhan5431]

Yep, didn't help anything

[@chrisduncan3943]

Do you think long covid is the same thing? I had so many of these symptoms after covid but things started hugely improving at 6 months then after less than 12 months I considered myself back to normal. I caught covid again recently but it didn't cause long covid this time. I had panic disorder in the past and it felt kind of the same after I got covid with anxiety, fatigue, rapid heart rate and so on. I wonder if they're related. They say anxiety is a sensitized nervous system. Maybe long covid or even ME is related to that? I used to get fatigue after exertion but it was immediate with no delay. And gradually it got less and less to where I could exercise and feel good afterward. It seems like the severe cases have a delay after exertion before they feel fatigue but mine was never like that. Maybe mine was a less severe form of it.

[@fight4me747]

I personally think many people with L.C. actually now have M.E. But this is just an opinion. I have no data to support it.

[@Truerealism747]

The subconscious brain gets sensitised