Thankyou for your videos, they are of great assistance to me as a person who is losing hope fast. I would like to add some things that help me a lot; water consumption. I suffer considerably more if I don’t drink at least one litre of water and considerably less if I drink close to two litres every day. ;sugar and carb avoidance is a biggie for me also. If I eat sugar It’s comparable to having a severe alcoholic hangover that lasts at least a week. ;ginkgo biloba and high quality fish oil tablets every day has taken me from not being able to speak whole sentences to regaining my ability to read and write fluently. My short term memory has come back, I can drive without anxiety for the feeling of disorientation and I can have unhindered conversation without suddenly feeling spaced out and not being able to recall simple words. I also remember names now. If I go a few days missing my supplements though My cognitive function declines very fast. ;showering as early as possible in the course of my day seems to wake up my body more and makes it easier to focus, have strength for a few daily chores. ;reading (only in combination with ginkgo and fish oil as without them I barely can recognise letters) seems to fight the decline in cognitive function. My vocabulary has come back to me largely because of reading ever day. ;figure out any intolerances to food!!!! If I eat gluten It exacerbates my symptoms to the point of unbearable (I’m already not functional but Gluten and sugar sends the condition into overdrive past the point where I can handle the pain)
Dont know if you guys gives a shit but if you're stoned like me during the covid times then you can watch pretty much all the new series on instaflixxer. I've been streaming with my brother during the lockdown =)
Intolerance to alcohol is a big sign that you have this disease. I feel it in my bladder within 5 minutes of having alcohol. Also the hangover (even after just one drink) lasts for three days.
I have had always low intolerance to alcohol. The same than my mom and brother. I stopped drinking alcohol around 23 of age. Now 38 and realising that I might be sick with CFS/ME.
I’m usually OK as long as I only have one drink. I’ve actually found that it helps me sleep if I have a drink before bed but I still don’t do that often. More than one drink and I find that I’m not feeling well. I also tend to just have alcohol pretty clean with just a mixer like a bourbon and Coke, I’m not usually drinking wine, beer, or anything with a lot of different things mixed in it, so that might be part of it.
The sleep issue is huge. I tend to be a night owl, with low energy/fatigue during the day. But I find that if I go to bed around 10 or 10:30 I feel so much better the next day. My muscles feel much more relaxed or something. Circadian rhythms, when they are not being honored, in terms of rest/wake cycle, can cause the body to have inflammation, pain, and fatigue. The brain also doesn't rest when it is supposed to. It pays to look this up, because I know how it affects me, and I never feel good if I go to bed after 11, no matter how much I sleep.
Circadian rhythms are vital for life. Low morning cortisol is a huge part of this disease which is responsible for healthy circadian rhythm. With out regular morning cortisol levels we will never get healthy it's not possible. Cortisol hormone is vital for life.
Thank you so much!!! I needed to read this comment so I understand the seriousness of getting my sleep rhythm right! Badly night owl and I have been all my life.
@@meeerdock Believe it or not, linen pillowcases will put you in la-la land with vivid dreams. Linen vibrates at a very high level, and it affects our brains. I have some, and have tested them to see if it makes a difference over cotton ones. OMG. But skeptics will have to try it for themselves. Linen isn't the softest fabric, but gets softer with washings and fabric softener. There is more about linen and how it heals online.
25 years in, I'm at the point of just trying to at least shave edges off this thing. (I have tried many things over the years...) My favorite find this year is acetyl L-carnitine. I take 1,000mg 2-3x/day. It's granted my housebound self a little bit of stamina. Took 2-3months before any effect, but I was sure of the helpful effect after running out and then being off of it again for 2 months - a few weeks in and the decline was obvious. Back on, and a couple weeks later improved again. Now, I'm certainly not out walking around the block or running errands, but my day is tolerable to even somewhat pleasant. And from where I've been in recent years, I'll take it! I've also recently been supplementing veggie intake with vegetable powders (ie, spinach, beet, kale, wheat grass, spirulina etc) + vitC powder since that gets lost in the process of powdering the veggies. In a glass of filtered water, I daily mix 1/2 teaspoon of each powder and turmeric + 1 tablespoon each of blackstrap molasses and apple cider vinegar, and about 3 drops of stevia, top it off with a smidge of lemon juice. (All organic.) It might not appeal to everyone, but I love it. And given how difficult to impossible it can be to prepare meals, I feel like this drink covers at least some of the gaps. Other adds can include: protein powder, coconut milk powder, chlorella, Emergen-C, aloe, maca root, pomegranate juice concentrate, etc... (btw, my supplier for all these and more is vitacost-dot-com - economical, and they carry pretty much everything, including a good quality house brand.) Of course, let's be clear, I had to get well enough to tackle the powders, and now that I think about it, the carnitine probably had something to do with that... 100% agree diet is critical - work with a naturopath early on (since all the MDs were abysmally utterly useless) resulted in significant improvements incl via some dietary detox/cleanses (incl at Optimum Health Institute near San Diego) all netted me eventually a return to near normal. For years I stayed pretty well functional, even getting a masters degree, travelling around the world, and sometimes working full time - not without difficulty, but I did it, and had some really great experiences. Had I understood then what CFS is (if anyone had), I may have been able to employ other strategies, like pacing ie, to prolong that functionality. Unfortunately, first a bad case of mono and about a decade later an 18-month round of Lyme treatment ended me up where I've been the past few years. Somehow, I continue to be hopeful of more than 5% improvement going forward...
SignsAllAround I first got this after a very bad bout of mono too! (35 yrs ago) very low grade at first, still pretty manageable, then one day around '85 I came down with high fever, flu like (without coughs, other flu symptom) after I went out jogging. Recovered 3-4 days later, went out jogging again, then wham! Same thing happened, running high fever, bedridden shortly after jogging. That's when I realized somethings weird going on with my body. Realized stopping any kind of aerobic exercise made me feel better, more functional. Then in '96 became severely bedridden, on verge of blood transfusion due to very low platelet count, white cells very low & disintegrated to point couldn't be examined properly by test lab after coming down with CMV infection. Hasn't been able to "work" full-time since then, knowing regular 9-5 hrs work schedule will practically put me in the grave. I've taken gamma globlin shots weekly at the time with L-cartinine?, B5, creatine vitamin regimen. Don't know if it helped too much tho. One thing I knew, taking sugar really affected my energy level, drastically cutting down on it helped, tho my energy-level low & always hungry. Been borderline hypoglycemia all the time too regardless of sugar intake, but worse when too much carb intake. Veggies help a lot, especially kale so I try to eat them often. Yes, also fermented foods especially natto (Japanese fermented soybean) really makes me feel good especially when "craving" sugars, it stops it. After couple yrs of going to different medical specialists due to frequent high fever, collapsing fatigue, in & out ER rooms from viral & bacterial infections shortly after my first child birth, finally diagnosed with CFS by infectious disease doctor in 2000 when pregnant with second. Funny thing is when pregnant, I feel refreshed, more energy (opposite of what most people complain) while pregnant, then severe fatigue after. Doctor warned me I feel better during pregnancy because MY IMMUNE SYSTEM IS LOWERED. He warned me once I have baby, I'll have my fatigue back full-fledged which was so true! Also found out this one time I bought some whole grain meal called "raw food" at wholefoods that made me feel much better! Too bad I didn't see them again. Also at one point given Medrol pack (methyl prednisone graduated pack) for my back injury pain by orthopedic doctor, RENEWED MY ENERGY LIKE A MIRACLE! When my primary doc also prescribed Medrol packs whenever my CFS is very severe, MY ENERGY'S BACK, I'M ALIVE AGAIN! However, there danger with prednisone long term due to it primarily being immuno-suppressant drug. I've had high blood pressure to point of ER in past (probably from doing too much activity, feeling "good & alive" on it. So yes, it's scary drug.) Nowadays staying away from Medrol I'm always bedridden with mild infections from other people's cold, etc so it makes me afraid to see/hang out with much people, pretty anti social, you know. Staying away from Medrol unless severe bout. But I can't enjoy meeting friends, being active like 10 yrs ago when I frequently was on it. Recent yrs I've been having IBS, can't even enjoy eating out with people because I'll suffer severe diarrhea shortly after. Recently had colonoscopy found I have bunch of holes in my colon. Some condition starting with G which they said primary cause is Big Mac diet, which is strange since I'm basically on "healthy" high fiber, low sugar/refined carb Japanese probiotics diet... Unless it's caused by long term ibuprofen prescription intake for my back/knee pains . I wonder how many of us have same "immunological" problems, diabetes-like hypo/hyper glycemia sugar intolerance problems, intolerance to aerobic-type exercises, chronic IBS and holes in the colon problems. I'd like to share opinions!
I'd definetely add basic yoga/stretching moves and meditation/breathing to the list. It also helps to keep distracted, books, tv shows, magazines, puzzles, children's coloring books etc. it could even be daydreaming, putting the focus away from myself aka my problems, helps me stay sane and not depressed. Good video, thumbs up!!!
I'm glad these things helped you. I did all of these 6 months ago, but the illness continues to progress. But it cheers me up when others get better. I think it's because I'm older, have no thyroid, and went through menopause at the same time, and that by my age, more damage has been done than to younger people
I've also tried a number of these as well as a few remedies that border on what I would consider quackery (but, hey, you never know, UK doctors have nothing to offer). High protein/low carb - seemed to work for about six weeks but crashed in the end. Drank kefir everyday for a few weeks- no effect but perhaps I didn't continue long enough Coenzyme q10 - no effect Rhodolia - no effect Vitamin B12/folate - no effect but oral so possibly useless anyway. Vitamin supplements with iron - no effect LDN - not tried as it's not prescribed in the UK but from my reading, some people respond and others don't so not sure it's worth spending hard earned cash on. I have seemingly had some relief from my symptoms (as has my 80 year old mum who's also a sufferer) using medical cannabis oil and which I believe has a scientifically proven anti-inflammatory effect. Wasn't instant so it may have been coincidence but since I've run out I've gone downhill somewhat. I also occasionally use modalert, the narcolepsy drug, which is most effective for masking the fatigue although I'm very judicious with its use as the potential for making oneself worse through over exertion is very real. Alcohol (generally red wine but not to much) tends to make me feel better in the short term and I believe there's a subset of spoonies for whom this is also true. The theory is that it promotes with vasodilation but again nothing proven to support this. Finally, it might be worth checking out the phoenix rising forum as there are thousands of fellow sufferers there and lots of info. No cures as yet I'm afraid but it does offer glimmers of hope. Apols for long post.
I don't believe that people with ME/CfS have a poor immune system. At least it's never (since 1995) been ineffective from my perspective. If anything I would say at the root of this disease is more like an overactive immune system. I'm constantly feeling a grumbling, slightly fluey and that can be in the morning and by 3pm it's gone. Of course that's the way I understand it but of course most of these health things can obviously help with being healthy but It won't have any effect on the disease itself. In fact you may become more sensitised to the symptoms and feel worse.
I agree. I have had CFS/ME for about 30 years, diagnosed 13 years ago. I dont catch many colds and dont seem to pick up illnesses more often than añyone else. I do not have a bad reaction go alcohol either. I drink very moderately anyway.
Thank you for ALL the videos you have put in your library! Thank you for saving them all! I wish I had a doc like yours. I'm coming back to CA to go to Stanford Med Center and see a PA there in the ME/CFS clinic. I'm doing the five. Non-drinker, non-smoker, non-fast food eater, non-soda drinker, but not a good sleeper. My vitamins are okay and balanced. If I hear one more doc say "Your blood looks good." But I also take methotrexate weekly and get an infusion of Remicade every 8 weeks, and both of those are to shut down what is supposedly an overactive immune system as I've been diagnosed with RA for a long time. I'm still hunting for a doc. THANK YOU FOR ALL YOU DO!
Caffeine definitely affects my M.E and i am much better eating smaller portions of food, little and often. I am trying to cut down on sugar, but sleep is my main problem and stress.
Thank you so much for making a video about what has helped you. I am going through the process of receiving a diagnosis of suspected ME and fibromyalgia. A big one for me is being diagnosed with sleep apnea which I understand can occur with ME. They didn’t expect me to have it as I don’t fit the demographic of being a female with a healthy BMI. I now use a CPAP machine and it’s got rid a lot of my pain, and alleviated some of my tiredness. I’m still struggling with my health so will try to cut out sugar.
I get B12 injections every 12 weeks. My b12 levels were very low when I first started getting symptoms of ME. Sadly even though my B12 levels are normal the ME symptoms are just the same!
I have found that the Bach homeopathic remedies work wonders for sleep and relaxation. Specifically, I take Oak. I recommended it to a friend who is bipolar, and off her sleep. She got a bottle, and a few drops under the tongue and she was out like a light. It does the same to me. The preservative is alcohol, though, so if you have a problem with alcohol, I would avoid this particular product. But it only takes 5 or 6 drops when you go to bed.
@@yellowbird5411 Bach flower remedies differ from homeopathy, but both are equally ineffective, and that's a scientifically proven fact. Chronic illness is a huge money drain as it is, so don't spend money on ineffective treatment.
Yes you can fix it, it takes time and effort, but it isn’t as hard as most people with insomnia think. You can start by waking up earlier in the morning and spend less time in bed, as spending too much time in bed will make insomnia worse. The next important thing is to start having a sleep routine which will help you relax 1-2 hours before bed such as reading a book with dimmed lights, listening to an audio book or having a hot bath. You should not use ur phone or any screen at least 1 hour before bed, as it will disturb your body’s ability to create melatonin and this will stop you from falling asleep. Don’t take any naps during the day, your body has to adjust to the new sleeping pattern.
1)I'm really excited about this channel. I'd really love to see those interviews with your loved ones, especially about how they came to believe you if they didn't before. I'd also love to hear more of your journey with ME and whatnot. 2) I can totally agree on cutting down on sugar, but as a fellow Californian, don't you dare take away my In-n-Out :p lol
I found by doing all those important changes together that my sleep just got much better over time and I threw out the melatonin which never worked much anyway. To add, I recently took a food intolerance test and found out I'm intolerant to wheat, dairy, eggs, bakers yeast, brewers yeast, pea, amaranth and some other stuff. I had been eating a lot of probiotic foods cos the general consensus is that this helps the gut which helps ME. Well, it turns out that because I'm sensitive to yeast I needed to cut that out too. So I feel that finding out what would help me specifically was a great move. It's early days but my friend did the same and has so much better quality of life now. Shen took an intolerance test bout 7 months ago now.
Thank you, thank you, thank you! Whilst reading these comments a few weeks ago I saw the word LDN and thought "what's that?" And so my Low Dose Naltrexone learning journey began! I've been trawling the Internet obsessively to find an effective treatment for my beautiful daughter's CFS/ME and LDN is the most exciting and safe drug I've ever heard of! We're in the process of obtaining some as I speak, so keep your fingers crossed! I would not of found it if not for you. 😊
Thats great news Denise. I hope LDN works for your daughter. Please remember that it needs to be from a compounding pharmacy. Keep me posted, I really hope that your daughter finds some relief. PS: This is a video I did about LDN. ruclips.net/video/RYV1_3mvLDQ/видео.html
Thank you! Yes it is a very experienced LDN compounding pharmacy, I got all the info from a LDN Facebook page so it's been very straightforward so far. I'll keep you updated 😊
May I ask which FB group? If its LDN research trust I would recommend finding another group. LDN GOT ENDORPHINS is much better. The research trust bans people who talk about any negative aspects of LDN and that can be dangerous in my opinion. Its critical to know the pros and cons before taking LDN. Issues may arise months after taking it and its good to be able to talk to people who have already gone through that. Most things are minor, but its still good to be in communication with like minded people.
I think I've joined both of them..and more! The more opinions the better! And yes, I know who you mean, but being in the UK I can see the posts while she sleeps and before she can delete them!! Ha ha!
I've been apart of the research trust group and there are many people talking about the negative effects. I haven't seen anybody bashing or getting deleted. Not sure why everyone is making a fuss.
Thanks for using some precious energy making your great vlogs👍😀🌟 Just thought I'd give relaxation/meditation/visualisation /mindfulness a shout out, loads of great stuff free on RUclips but just breathing 5-10 long slow breaths can be hugely helpful with pain, sensory storms, negativity etc it just gives you a bit of distance, takes you a step away so you can remember all the great coping strategies that we all forget at times esp. when feeling overwhelmed, stay strong🙏
In addition, the mental component is critical. Maintaining a positive outlook is key to recovery. I used brain retraining and it is helping take the anxiety aka wired feeling calm down. The negative thought loops can hold someone away from progress. Distractions are helpful but sometimes you should cry and let out the emotions. CBT is great if possible. Dealing with the emotional component can allow for quicker healing.
Thanks for this.. For me main things that I learned was pacing! Learning to trust my instincts and intuition and eating Whole Foods as much possible .and sleeping early. I personally never felt any difference with vitamins with diet change the improvement was obvious.
I didn't find vitamins had any effects at all, and recent studies have shown that they can actually be detrimental to overall health. You get sufficient vitamins from a balanced diet, unless you have an actual deficiency in something. I've found that I have, overall, a lot less energy if I completely avoid sugar and caffeine. My ME is mild to moderate, though - I was unable to thrive on a low-carb diet, I simply could not adapt. I did my best to cut sugar for like 2 months, and couldn't function at all. I can cut back, and eat very little sugar overall these days, but I can't eliminate it without negative consequences. My understanding of the most recent research coming out of Norway is that our body's burning amino acids for fuel instead of using glucose. Perhaps the degree to which it does so has an impact on how we react to sugar. I have found probiotics are helpful, as long as you keep taking them. I've never smoked, and drink only a single serving once in a blue moon (once every month or two, maybe). Getting good sleep sounds a bit of an irony, considering that unrestful sleep is an ME diagnostic symptom.
I had a good doctor, that's until I lost work, lost insurance, now on state Medicaid insurance. Now suddenly, it's an "imaginary" condition which NO infectious doctor on Medicaid plans want to see/treat/investigate. Since I HAD a doctor who was informative of CFS and strong possibility of infectious disease/immunology connections to ME/CFS I'm insisting these ID doctors to at least treat some of my infections to alleviate my condition but they REFUSE to treat me! I'll bet anything these doctors are old school brainwashed by CDC to believe ME/CFS is imaginary!
Martin White I hope you can find a better doctor. Took me a long tine to find one. Shop around. Initially, I had to pay out of pocket, then a friend told me about a good doctor.
Yes, it's a vicious cycle. At least I'm glad there bit more public awareness these days, compared to before when even the medical community tried to convince us "it's all in your head"
I was advised to cut out gluten and I was amazed that it increased my energy. At first I did gluten free everything, but a lot of gf is so over priced, over processed and the pasta is terrible! So I stuck to an amazing GF muesli (Sainsbury’s UK) and stopped eating bread much (as it def adds to the waistline 😭) but sometimes get gf bread and I don’t worry about the rest and it works well. Gluten free bread is generally a horror show!! Grey, nasty, squeaky midget sized slices.. the only gorgeous one I found is Marks & Spencer in the UK - the rest is horrendous! Some people can tell if they’re gluten intolerant if they’re often tired and constipated! Who knew?
One thing I’ve noticed that helps me feel better is actually a bit of a cold plunge I hate to be cliché because I know it’s a trend right now, but I grew up with having a swimming pool but unfortunately the water is usually pretty cold early and late in the season which is a pretty short season since I live in the northeast, but I find when the water is cold if I do a quick in and out dip it really helps relieve some of the pain and makes me feel very relaxed and there’s a noticeable improvement for a little while anyway. In my defense I’ve been doing that for years though so don’t lump me in with the people sitting in their freezers lol. also I was able to do float therapy once on vacation, where are you do the sensory deprivation tank with the Epson salts. I noticed a marked improvement after that as well but unfortunately it’s not something I can do on a regular basis. It also wasn’t a complete sensory experience since I had lights and music on in the room so I’m pretty sure it was just the magnesium and Epson salts making the difference. So if that’s something you’re able to do I would definitely try it.
Any time you hear gut it generally means straying into woowoo territory. I love sweets. It's one of the delights of living. Not ever giving it up, wouldn't want to even live without my desserts.
most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the allowed radiation is less.
I've really been trying to eat better. Back when I was healthy I was on a low carb diet and was amazed by how energetic I was, so when I got this illness, it just made sense to go back to that sort of diet. The issue I have now though is that food preparation takes a lot of energy for me and foods that are quick and easy are usually not very healthy. Any tips?
Thats the tough part that I think we all struggle with. Im fortunate to have a great wife who makes healthy food. When I do eat bad I try as hard a possible to avoid sugar. Sugar seems to be my worst enemy.
Healthy eating doesn't have to mean spending a lot of time in the kitchen. I have one big frying pan with a lid. I use it for complete meals. I keep my meals simple with a meat or fish, a potato, sweet potato or lima beans, and a vegetable, fresh. After washing all of it, I simply plop it all in the pan separately, add about a half cup of water, some butter or margarine and sprinkle with mixed herbs from little jars, and put the lid on. I turn it on med low, or low, depending on when I am going to eat. If one needs to be added at the last minute, I do that, but cooking time is not a science around here. If the broccoli gets overdone or underdone, it's not a big deal. I keep a variety of fresh fruit and a couple of raw veggies for a salad if I want. Sometimes, a salad just means carrot pieces dipped in salad dressing.
Finally I find someone who understands how even preparing the simplest meal can be a struggle. With a family and kids to feed it gets worse. As a mom I want to feed them and take care of them first. When I tried going keto the worst part was that. I had to prepare something different for their differ needs then feed myself and do shopping. I just quit after a couple of months because it was too stressful
Try including drinking coffee as well as eating lots of tuna which is high in selenium, the body's master anti-oxidant. Stay hydrated also, drink lots of fresh water.
Hello Haihley, Thats a great question and was thinking of making a video about that. Being in a relationship with someone suffering from an illness like this can be tough. We can no longer plan things ahead, because we dont' know how we will feel. We have to pace ourselves in order to not crash and flare up. We need someone to understand and learn about our illness so that we don't feel alone and isolated. The vast majority of people with illness are stripped of many things in our life and we are trying really hard to cope. Our significant others mean the world to us because most of the world has turned their back on this illness. I can truly go on for days. If I can help in any way, let me know.
Fight4 ME thank you for ur answer; Currently i am talkin with a person who got diagnosed with me cfs. Before i met that person ive never heard of that illness n it is rly new to me. Since we live in other Countrys; our friendship is long distance. I am starting to have feelings towards that person though. It is hard for me to tell if that person just needs space to 'recover' or actually does not want to talk to me. I would appreciate a video covering that topic. Also; that person told me they feel too broken to be in a relationship because of this illness. How do I 'behave' correctly around them, to not make them think I am constricting them in any way, yet still showing I care about them? Thank you
I think the best way is to tell them you are there if they need you. They may sadly feel "ashamed" or "embarrassed" while they have a flare up. We are not ourselves and its hard to be seen in that light for some of us. Do your best to let them know that you are there for them and to contact you to talk if needed. That you won't judge them. A lot of ME/CFSers are judged and they may disappear so that they dont feel judgement while they are sick. Haihley, I got sick with I was in my early 20s. I played sports, boxed several times a week. I was strong and in shape. This illness beat the crap out of me. Its important to know that this is a REAL and devastating illness for many people. If you understand that, I think you will do just fine in your relationship. Too many people minimize the severity of this. I applaud you for reaching out and asking and learning about this.
I wrote and essay on my own personal experience with ME/CFS and all the relevant research that I could find. You can read it here: atlasbiologic.com/2017/06/02/88/ I hope it helps anyone who finds this.
+Fight4 ME Lovely video content! Excuse me for chiming in, I would appreciate your thoughts. Have you researched - Dinanlinson Rebooting Health Approach (Sure I saw it on Google)? It is a great one of a kind product for getting rid of chronic fatigue syndrome minus the normal expense. Ive heard some great things about it and my mate after a lifetime of fighting got excellent results with it.
+Fight4 ME Excellent Video clip! Forgive me for butting in, I would appreciate your opinion. Have you ever tried - Dinanlinson Rebooting Health Approach (do a search on google)? It is a great one off guide for getting rid of chronic fatigue syndrome without the hard work. Ive heard some pretty good things about it and my best friend Jordan at very last got excellent success with it.
Can you share which probiotic you used? I'm totally confused which one to take. D lactate issues,TH1/Th2 imbalances. I presently have a bottle of Prescript Assist,but am not sure if it's right for me.
Hi Jason, I was taking ib flora by metagenix. After 5 years of great success with them, they seem to stop working. I also got on prescript assist and it worked well, but the problem is that its an SBO ( soil based organism) Some of those strains are not naturally found in our gut and there is not enough to studies to prove its safe. So I got off of it right away. Now I take VSL 3 and its pretty strong. It actually made me feel a little worse at first (start with one pill) but now im seeing the benefits for sure and worked my way to 2 a day. Took a few weeks. Mention VSL3 to your doc and see if its right for you. Hope that helps
Thanks for the reply. That is one thing i have been concerned about with the PA,so still trying to find some studies on it's safety. I tried VSL3 and afterwards found that it had Streptococcus thermopiles which stimulates Th2 cells(not good). Also has some Lactobacillus strains that are D lactate producing which i can't take either. So,am still trying to find the most suitable probiotic and is tuning out to be quiet a puzzle.
Hi I have me/cfs. Bad. Fibomalyagia. What I call a flare up. Pain so exIt’s caseating pain excuse she ate in pain heartbeat was up to 300 when I was checked on my flareup I feel like I wanna cut the legs off to anyone else get this to
I was actually interviewed for the documentary. I think it shows the female perspective well and not the male perspective. It also mostly shows SEVERE cases. Doesn't show all the in between. Which I think is very important. Most people with the illness "look fine". That needs to be showcased IMO. Jen Brea is brave for putting her story out there like that and she is bringing awareness to this illness. That being said, Unrest doesnt imply you can't get better. It shows her trying everything to GET better. I for one, do not believe there is a cure yet. I think people who claim to be cured are either lying or they had something else. I do think that you can get a LOT better though if you take the right steps and have a good team around you. I have yet to meet someone with ME who flat out got cured. I do believe we will have medicine out soon that will allow us to live relatively normal lives. Im very hopeful about the future in that regard.
Nobody needs to consult with a doctor to do any of these five things. You're making it sound like this illness can be treated by simple lifestyle choices. I hope you can see why that would offend people like me who've been doing these things for years and all it has done is slow the slide into a semi-conscious coma. This is an illness that needs research, not basic health advice.
Thats why I made it clear that its BASIC things that worked for me. I also mentioned that this video is mostly for people NEW to ME. And anytime you add a new supplement and prescription strength probiotic, its wise to talk to your doctor first. Remember, there are many people that haven't been sick very long. They don't know that sugar hurts your immunity and hurts your gut flora. Or that probiotics can help. YOU may not need basic health advice, but I belong to many support groups and you would be shocked at how many people dont know the basics. Im a bit blown away that you would find this offensive. I've gotten many emails from viewers thanking me for this specific video . Best wishes
A Google User I agree with you. 35 yrs with this condition here, tried almost everything while my health keeps sliding downwards. I get offended by people who think just change of diet will "cure" it, which it doesn't. But, at least, trying these things will somewhat alleviate some of the fatigue. It's a bandage, not a cure.
The irony of this comment is that everyone with ME struggles with people judging them based on looks/approach....And here you are doing exactly what our community hates to see and hear from people. Notice the video title says "BASIC" things that can help? This video was obviously not made for people on the extreme end of the spectrum, its made for people who are just starting their journey and don't know where to start. Its also made to start dialogue in the comments about what others may be doing that helps them in anyway. Cheers
Exactly. I was never a super muscular guy but i had a good 10-12 pounds more of muscle before I got sick. And because Im able to make 1 video every couple months some people think Im totally healthy lol Glad someone gets it
Fight4 ME I immediately lost 10 lbs after initial mono infection, then lost additional 10 lbs in next few yrs with CFS development. That's a lot when considering I started off 115 lbs down to 105 then to 95 lbs (yes, I'm only 5'2" but still). Now that I'm older & slowed metabolism, back to 114 or so but not with healthy muscle this time, rather with unneeded fat by being very sedentary over the years :( Sad thing is aerobic exercise seem to exacerbate my CFS, while without exercise, I know my joints, bones etc will be affected :(
Sorry man But no matter what condition you have or don’t have. Doing all those things will make anyone feel healthy (not as sick) Also they are all good recommendation for mental health. I’m not dismissing you have a physical illness but you also have a mental illness. Definitely give it some thought.
Tom, you know NOTHING about this illness, yet you think you can diagnose me with "mental illness"? Tom, I don't have ONE symptom of mental illness. Never had anxiety, never been depressed. The things I mentioned make anyone feel healthy, you're right. The point of the video is many people new to an illness don't know where to start at times, and the basics can be overlooked.
Indeed Tom, I know a chap who's had this condition for decades and I had a suspicion that it was mainly in his head. Two years ago, however, I had a nasty bout of gastro-enteritis and from which I never recovered. I appreciate that this is purely anecdotal but I can assure you that it's definitely a physical illness and one which no amount of positive thinking, CBT, psychiatry etc. will 'cure'. Yes, these methods might be useful as coping strategies as indeed they may for people with cancer or MS but this is only on the level of helping with the lifestyle alterations having a long term disease necessitates. I've tried pushing through it on my own by attempting to exercise no matter how bad I feel but this results in total wipe out. One thing that is worth noting also is medical professionals who suffer from ME, for there are indeed a number out there, and mark how their eyes are immediately opened by the experience. None of them subscribe to the bio/psych/social model.
Artur Sixpence could not agree more, I hope you can achieve stainable recovery. Medical science has along way to go before it can fully understand and can treat all immune systems disorders. Fight4ME just has a serious superiority complex. Just taking him down a peg or two. Super dismissive about anything to do with mental health. Comes across very narrow minded.
Er, I suspect you've not read my post correctly, as I point out that the condition has little to do with mental illness apart from the depression that can occur due to the longevity of the symptoms and being marginalised by our health systems. These are a consequence of the illness not part of the cause.
Artur Sixpence no it’s ok I was agreeing with you. I don’t think mental illness is the cause of your condition, just makes it worse if you’re not aware of it.
1)I'm really excited about this channel. I'd really love to see those interviews with your loved ones, especially about how they came to believe you if they didn't before. I'd also love to hear more of your journey with ME and whatnot. 2) I can totally agree on cutting down on sugar, but as a fellow Californian, don't you dare take away my In-n-Out :p lol
Thankyou for your videos, they are of great assistance to me as a person who is losing hope fast.
I would like to add some things that help me a lot; water consumption. I suffer considerably more if I don’t drink at least one litre of water and considerably less if I drink close to two litres every day.
;sugar and carb avoidance is a biggie for me also. If I eat sugar It’s comparable to having a severe alcoholic hangover that lasts at least a week.
;ginkgo biloba and high quality fish oil tablets every day has taken me from not being able to speak whole sentences to regaining my ability to read and write fluently. My short term memory has come back, I can drive without anxiety for the feeling of disorientation and I can have unhindered conversation without suddenly feeling spaced out and not being able to recall simple words. I also remember names now. If I go a few days missing my supplements though My cognitive function declines very fast.
;showering as early as possible in the course of my day seems to wake up my body more and makes it easier to focus, have strength for a few daily chores.
;reading (only in combination with ginkgo and fish oil as without them I barely can recognise letters) seems to fight the decline in cognitive function.
My vocabulary has come back to me largely because of reading ever day.
;figure out any intolerances to food!!!! If I eat gluten It exacerbates my symptoms to the point of unbearable (I’m already not functional but Gluten and sugar sends the condition into overdrive past the point where I can handle the pain)
Great advice.
Dont know if you guys gives a shit but if you're stoned like me during the covid times then you can watch pretty much all the new series on instaflixxer. I've been streaming with my brother during the lockdown =)
@Zain Matthias yea, been watching on instaflixxer for months myself :)
@Zain Matthias yup, I have been watching on instaflixxer for since november myself =)
@Zain Matthias yup, have been watching on InstaFlixxer for since november myself =)
I have found eating eggs and higher protein in my diet has helped my energy levels and feeling better overall!
Intolerance to alcohol is a big sign that you have this disease. I feel it in my bladder within 5 minutes of having alcohol. Also the hangover (even after just one drink) lasts for three days.
sara abernathy haven't been able to drink since I got it
@Nessa Jean "I feel it in my bladder within 5 minutes of having alcohol" same for me ... I didn't know why
I have had always low intolerance to alcohol. The same than my mom and brother. I stopped drinking alcohol around 23 of age. Now 38 and realising that I might be sick with CFS/ME.
I’m usually OK as long as I only have one drink. I’ve actually found that it helps me sleep if I have a drink before bed but I still don’t do that often. More than one drink and I find that I’m not feeling well. I also tend to just have alcohol pretty clean with just a mixer like a bourbon and Coke, I’m not usually drinking wine, beer, or anything with a lot of different things mixed in it, so that might be part of it.
Maybe that's why I lost my desire to drink. And I drank a lot all of my life.
❤7yr old video & you still send a ❤!! you are a very kind & caring person Johnny😊
The sleep issue is huge. I tend to be a night owl, with low energy/fatigue during the day. But I find that if I go to bed around 10 or 10:30 I feel so much better the next day. My muscles feel much more relaxed or something. Circadian rhythms, when they are not being honored, in terms of rest/wake cycle, can cause the body to have inflammation, pain, and fatigue. The brain also doesn't rest when it is supposed to. It pays to look this up, because I know how it affects me, and I never feel good if I go to bed after 11, no matter how much I sleep.
Circadian rhythms are vital for life. Low morning cortisol is a huge part of this disease which is responsible for healthy circadian rhythm. With out regular morning cortisol levels we will never get healthy it's not possible. Cortisol hormone is vital for life.
Thank you so much!!! I needed to read this comment so I understand the seriousness of getting my sleep rhythm right! Badly night owl and I have been all my life.
Good you dont suffer insomia🙏❤️
Earplugs and no phones at bed made huge differance for my sleep
@@meeerdock Believe it or not, linen pillowcases will put you in la-la land with vivid dreams. Linen vibrates at a very high level, and it affects our brains. I have some, and have tested them to see if it makes a difference over cotton ones. OMG. But skeptics will have to try it for themselves. Linen isn't the softest fabric, but gets softer with washings and fabric softener. There is more about linen and how it heals online.
25 years in, I'm at the point of just trying to at least shave edges off this thing. (I have tried many things over the years...) My favorite find this year is acetyl L-carnitine. I take 1,000mg 2-3x/day. It's granted my housebound self a little bit of stamina. Took 2-3months before any effect, but I was sure of the helpful effect after running out and then being off of it again for 2 months - a few weeks in and the decline was obvious. Back on, and a couple weeks later improved again. Now, I'm certainly not out walking around the block or running errands, but my day is tolerable to even somewhat pleasant. And from where I've been in recent years, I'll take it! I've also recently been supplementing veggie intake with vegetable powders (ie, spinach, beet, kale, wheat grass, spirulina etc) + vitC powder since that gets lost in the process of powdering the veggies. In a glass of filtered water, I daily mix 1/2 teaspoon of each powder and turmeric + 1 tablespoon each of blackstrap molasses and apple cider vinegar, and about 3 drops of stevia, top it off with a smidge of lemon juice. (All organic.) It might not appeal to everyone, but I love it. And given how difficult to impossible it can be to prepare meals, I feel like this drink covers at least some of the gaps. Other adds can include: protein powder, coconut milk powder, chlorella, Emergen-C, aloe, maca root, pomegranate juice concentrate, etc... (btw, my supplier for all these and more is vitacost-dot-com - economical, and they carry pretty much everything, including a good quality house brand.) Of course, let's be clear, I had to get well enough to tackle the powders, and now that I think about it, the carnitine probably had something to do with that...
100% agree diet is critical - work with a naturopath early on (since all the MDs were abysmally utterly useless) resulted in significant improvements incl via some dietary detox/cleanses (incl at Optimum Health Institute near San Diego) all netted me eventually a return to near normal. For years I stayed pretty well functional, even getting a masters degree, travelling around the world, and sometimes working full time - not without difficulty, but I did it, and had some really great experiences. Had I understood then what CFS is (if anyone had), I may have been able to employ other strategies, like pacing ie, to prolong that functionality. Unfortunately, first a bad case of mono and about a decade later an 18-month round of Lyme treatment ended me up where I've been the past few years. Somehow, I continue to be hopeful of more than 5% improvement going forward...
SignsAllAround I first got this after a very bad bout of mono too! (35 yrs ago) very low grade at first, still pretty manageable, then one day around '85 I came down with high fever, flu like (without coughs, other flu symptom) after I went out jogging. Recovered 3-4 days later, went out jogging again, then wham! Same thing happened, running high fever, bedridden shortly after jogging. That's when I realized somethings weird going on with my body. Realized stopping any kind of aerobic exercise made me feel better, more functional. Then in '96 became severely bedridden, on verge of blood transfusion due to very low platelet count, white cells very low & disintegrated to point couldn't be examined properly by test lab after coming down with CMV infection. Hasn't been able to "work" full-time since then, knowing regular 9-5 hrs work schedule will practically put me in the grave. I've taken gamma globlin shots weekly at the time with L-cartinine?, B5, creatine vitamin regimen. Don't know if it helped too much tho. One thing I knew, taking sugar really affected my energy level, drastically cutting down on it helped, tho my energy-level low & always hungry. Been borderline hypoglycemia all the time too regardless of sugar intake, but worse when too much carb intake. Veggies help a lot, especially kale so I try to eat them often. Yes, also fermented foods especially natto (Japanese fermented soybean) really makes me feel good especially when "craving" sugars, it stops it. After couple yrs of going to different medical specialists due to frequent high fever, collapsing fatigue, in & out ER rooms from viral & bacterial infections shortly after my first child birth, finally diagnosed with CFS by infectious disease doctor in 2000 when pregnant with second. Funny thing is when pregnant, I feel refreshed, more energy (opposite of what most people complain) while pregnant, then severe fatigue after. Doctor warned me I feel better during pregnancy because MY IMMUNE SYSTEM IS LOWERED. He warned me once I have baby, I'll have my fatigue back full-fledged which was so true! Also found out this one time I bought some whole grain meal called "raw food" at wholefoods that made me feel much better! Too bad I didn't see them again. Also at one point given Medrol pack (methyl prednisone graduated pack) for my back injury pain by orthopedic doctor, RENEWED MY ENERGY LIKE A MIRACLE! When my primary doc also prescribed Medrol packs whenever my CFS is very severe, MY ENERGY'S BACK, I'M ALIVE AGAIN! However, there danger with prednisone long term due to it primarily being immuno-suppressant drug. I've had high blood pressure to point of ER in past (probably from doing too much activity, feeling "good & alive" on it. So yes, it's scary drug.) Nowadays staying away from Medrol I'm always bedridden with mild infections from other people's cold, etc so it makes me afraid to see/hang out with much people, pretty anti social, you know. Staying away from Medrol unless severe bout. But I can't enjoy meeting friends, being active like 10 yrs ago when I frequently was on it. Recent yrs I've been having IBS, can't even enjoy eating out with people because I'll suffer severe diarrhea shortly after. Recently had colonoscopy found I have bunch of holes in my colon. Some condition starting with G which they said primary cause is Big Mac diet, which is strange since I'm basically on "healthy" high fiber, low sugar/refined carb Japanese probiotics diet... Unless it's caused by long term ibuprofen prescription intake for my back/knee pains . I wonder how many of us have same "immunological" problems, diabetes-like hypo/hyper glycemia sugar intolerance problems, intolerance to aerobic-type exercises, chronic IBS and holes in the colon problems. I'd like to share opinions!
You are a hero. ❣️
@@user-ti4dl8tw7h bless you...❤
I have been looking for videos on this topic for about a year and am not sure why I am just now finding you but BOY I am happy to have found you!!!
I hope the videos can help !
I'd definetely add basic yoga/stretching moves and meditation/breathing to the list. It also helps to keep distracted, books, tv shows, magazines, puzzles, children's coloring books etc. it could even be daydreaming, putting the focus away from myself aka my problems, helps me stay sane and not depressed. Good video, thumbs up!!!
Good advice Vicky. Thanks
I'm glad these things helped you. I did all of these 6 months ago, but the illness continues to progress. But it cheers me up when others get better. I think it's because I'm older, have no thyroid, and went through menopause at the same time, and that by my age, more damage has been done than to younger people
Hello Heather, have you tried LDN?
I've also tried a number of these as well as a few remedies that border on what I would consider quackery (but, hey, you never know, UK doctors have nothing to offer).
High protein/low carb - seemed to work for about six weeks but crashed in the end.
Drank kefir everyday for a few weeks- no effect but perhaps I didn't continue long enough
Coenzyme q10 - no effect
Rhodolia - no effect
Vitamin B12/folate - no effect but oral so possibly useless anyway.
Vitamin supplements with iron - no effect
LDN - not tried as it's not prescribed in the UK but from my reading, some people respond and others don't so not sure it's worth spending hard earned cash on.
I have seemingly had some relief from my symptoms (as has my 80 year old mum who's also a sufferer) using medical cannabis oil and which I believe has a scientifically proven anti-inflammatory effect. Wasn't instant so it may have been coincidence but since I've run out I've gone downhill somewhat.
I also occasionally use modalert, the narcolepsy drug, which is most effective for masking the fatigue although I'm very judicious with its use as the potential for making oneself worse through over exertion is very real.
Alcohol (generally red wine but not to much) tends to make me feel better in the short term and I believe there's a subset of spoonies for whom this is also true. The theory is that it promotes with vasodilation but again nothing proven to support this.
Finally, it might be worth checking out the phoenix rising forum as there are thousands of fellow sufferers there and lots of info. No cures as yet I'm afraid but it does offer glimmers of hope.
Apols for long post.
Good points... Tips to manage? meditate (briefly), self-acupressure (dry brushing), scent (lavender), pray (Baha'i), breathe (diaphramic), diet (plant-based-hydrate-fermented), laugh (friends-videos), exercise (walking), learn (often health science-ME/CFS), deepen positive belief system (Baha'i-Religious Scripture), music (listen peaceful-sing-chant-hum), fasting (intermittent after 6p), supplement (B12-selective), find beauty (anywhere), sleep (circadian), work (as worship), support (socialize-help someone) :-) ~ Most ideas, Abdul-Baha, Baha'i Faith
Great tips
@@fight4me747 Thanks for your excellent tips. Please continue the great work.
I don't believe that people with ME/CfS have a poor immune system. At least it's never (since 1995) been ineffective from my perspective. If anything I would say at the root of this disease is more like an overactive immune system. I'm constantly feeling a grumbling, slightly fluey and that can be in the morning and by 3pm it's gone. Of course that's the way I understand it but of course most of these health things can obviously help with being healthy but It won't have any effect on the disease itself. In fact you may become more sensitised to the symptoms and feel worse.
I agree. I have had CFS/ME for about 30 years, diagnosed 13 years ago. I dont catch many colds and dont seem to pick up illnesses more often than añyone else. I do not have a bad reaction go alcohol either. I drink very moderately anyway.
Thank you for ALL the videos you have put in your library! Thank you for saving them all! I wish I had a doc like yours. I'm coming back to CA to go to Stanford Med Center and see a PA there in the ME/CFS clinic. I'm doing the five. Non-drinker, non-smoker, non-fast food eater, non-soda drinker, but not a good sleeper. My vitamins are okay and balanced. If I hear one more doc say "Your blood looks good." But I also take methotrexate weekly and get an infusion of Remicade every 8 weeks, and both of those are to shut down what is supposedly an overactive immune system as I've been diagnosed with RA for a long time. I'm still hunting for a doc. THANK YOU FOR ALL YOU DO!
Caffeine definitely affects my M.E and i am much better eating smaller portions of food, little and often. I am trying to cut down on sugar, but sleep is my main problem and stress.
Thank you so much for making a video about what has helped you. I am going through the process of receiving a diagnosis of suspected ME and fibromyalgia. A big one for me is being diagnosed with sleep apnea which I understand can occur with ME. They didn’t expect me to have it as I don’t fit the demographic of being a female with a healthy BMI. I now use a CPAP machine and it’s got rid a lot of my pain, and alleviated some of my tiredness. I’m still struggling with my health so will try to cut out sugar.
Sorry to hear this Jane, Read up on LDN, that may help.
@@fight4me747 Thank you I will do. 🇬🇧💕🙏💕🇺🇸
I get B12 injections every 12 weeks. My b12 levels were very low when I first started getting symptoms of ME. Sadly even though my B12 levels are normal the ME symptoms are just the same!
A ruined sleeping pattern seems impossible to fix.
yeah its a terrible cycle
I have found that the Bach homeopathic remedies work wonders for sleep and relaxation. Specifically, I take Oak. I recommended it to a friend who is bipolar, and off her sleep. She got a bottle, and a few drops under the tongue and she was out like a light. It does the same to me. The preservative is alcohol, though, so if you have a problem with alcohol, I would avoid this particular product. But it only takes 5 or 6 drops when you go to bed.
@@yellowbird5411 Bach flower remedies differ from homeopathy, but both are equally ineffective, and that's a scientifically proven fact. Chronic illness is a huge money drain as it is, so don't spend money on ineffective treatment.
Yes you can fix it, it takes time and effort, but it isn’t as hard as most people with insomnia think. You can start by waking up earlier in the morning and spend less time in bed, as spending too much time in bed will make insomnia worse. The next important thing is to start having a sleep routine which will help you relax 1-2 hours before bed such as reading a book with dimmed lights, listening to an audio book or having a hot bath. You should not use ur phone or any screen at least 1 hour before bed, as it will disturb your body’s ability to create melatonin and this will stop you from falling asleep. Don’t take any naps during the day, your body has to adjust to the new sleeping pattern.
I find CBD oil taken around 8pm makes it much easier to sleep. Xx
1)I'm really excited about this channel. I'd really love to see those interviews with your loved ones, especially about how they came to believe you if they didn't before. I'd also love to hear more of your journey with ME and whatnot.
2) I can totally agree on cutting down on sugar, but as a fellow Californian, don't you dare take away my In-n-Out :p lol
InNout, you know the struggle! haha Thank you. And thank you for the suggestions.
I found by doing all those important changes together that my sleep just got much better over time and I threw out the melatonin which never worked much anyway. To add, I recently took a food intolerance test and found out I'm intolerant to wheat, dairy, eggs, bakers yeast, brewers yeast, pea, amaranth and some other stuff. I had been eating a lot of probiotic foods cos the general consensus is that this helps the gut which helps ME. Well, it turns out that because I'm sensitive to yeast I needed to cut that out too. So I feel that finding out what would help me specifically was a great move. It's early days but my friend did the same and has so much better quality of life now. Shen took an intolerance test bout 7 months ago now.
Melotonin made me feel depressed.
Alcohol make me paralyzed and a flare would last for days.
Annmarie123ize same here!
Thank you, thank you, thank you! Whilst reading these comments a few weeks ago I saw the word LDN and thought "what's that?" And so my Low Dose Naltrexone learning journey began! I've been trawling the Internet obsessively to find an effective treatment for my beautiful daughter's CFS/ME and LDN is the most exciting and safe drug I've ever heard of! We're in the process of obtaining some as I speak, so keep your fingers crossed! I would not of found it if not for you. 😊
Thats great news Denise. I hope LDN works for your daughter. Please remember that it needs to be from a compounding pharmacy. Keep me posted, I really hope that your daughter finds some relief. PS: This is a video I did about LDN. ruclips.net/video/RYV1_3mvLDQ/видео.html
Thank you! Yes it is a very experienced LDN compounding pharmacy, I got all the info from a LDN Facebook page so it's been very straightforward so far. I'll keep you updated 😊
May I ask which FB group? If its LDN research trust I would recommend finding another group. LDN GOT ENDORPHINS is much better. The research trust bans people who talk about any negative aspects of LDN and that can be dangerous in my opinion. Its critical to know the pros and cons before taking LDN. Issues may arise months after taking it and its good to be able to talk to people who have already gone through that. Most things are minor, but its still good to be in communication with like minded people.
I think I've joined both of them..and more! The more opinions the better! And yes, I know who you mean, but being in the UK I can see the posts while she sleeps and before she can delete them!! Ha ha!
I've been apart of the research trust group and there are many people talking about the negative effects. I haven't seen anybody bashing or getting deleted. Not sure why everyone is making a fuss.
for me pilates is really helpfull, about 2 times a week and as long as i go really
gentle. also the food and sleep thing :)
thanks for the video!
Thank you for all your videos. Best explanations and most sincere i have seen.
This is really helpful and uplifting! Thanks!
Glad the videos help! Best wishes
Thanks for using some precious energy making your great vlogs👍😀🌟 Just thought I'd give relaxation/meditation/visualisation /mindfulness a shout out, loads of great stuff free on RUclips but just breathing 5-10 long slow breaths can be hugely helpful with pain, sensory storms, negativity etc it just gives you a bit of distance, takes you a step away so you can remember all the great coping strategies that we all forget at times esp. when feeling overwhelmed, stay strong🙏
Thanks and good advice!
Fight4 ME Yep great advice. Been trying to tell, save me911 this.
In addition, the mental component is critical. Maintaining a positive outlook is key to recovery. I used brain retraining and it is helping take the anxiety aka wired feeling calm down. The negative thought loops can hold someone away from progress. Distractions are helpful but sometimes you should cry and let out the emotions. CBT is great if possible. Dealing with the emotional component can allow for quicker healing.
M.E. will not be cured by re training how you think. I do believe it can help though.
Thanks for this.. For me main things that I learned was pacing! Learning to trust my instincts and intuition and eating Whole Foods as much possible .and sleeping early. I personally never felt any difference with vitamins with diet change the improvement was obvious.
I didn't find vitamins had any effects at all, and recent studies have shown that they can actually be detrimental to overall health. You get sufficient vitamins from a balanced diet, unless you have an actual deficiency in something.
I've found that I have, overall, a lot less energy if I completely avoid sugar and caffeine. My ME is mild to moderate, though - I was unable to thrive on a low-carb diet, I simply could not adapt. I did my best to cut sugar for like 2 months, and couldn't function at all. I can cut back, and eat very little sugar overall these days, but I can't eliminate it without negative consequences.
My understanding of the most recent research coming out of Norway is that our body's burning amino acids for fuel instead of using glucose. Perhaps the degree to which it does so has an impact on how we react to sugar.
I have found probiotics are helpful, as long as you keep taking them. I've never smoked, and drink only a single serving once in a blue moon (once every month or two, maybe).
Getting good sleep sounds a bit of an irony, considering that unrestful sleep is an ME diagnostic symptom.
Lucky you. I have a doctor who sincerely believes the ME is imaginary.
Im sorry to hear that
I had a good doctor, that's until I lost work, lost insurance, now on state Medicaid insurance. Now suddenly, it's an "imaginary" condition which NO infectious doctor on Medicaid plans want to see/treat/investigate. Since I HAD a doctor who was informative of CFS and strong possibility of infectious disease/immunology connections to ME/CFS I'm insisting these ID doctors to at least treat some of my infections to alleviate my condition but they REFUSE to treat me! I'll bet anything these doctors are old school brainwashed by CDC to believe ME/CFS is imaginary!
Martin White I hope you can find a better doctor. Took me a long tine to find one. Shop around. Initially, I had to pay out of pocket, then a friend told me about a good doctor.
don't concern yourself with him, he has shit for brains.
i can see how curing ME/CFS allows one to have good sleep, but not the reverse.
Have had ME and never heard of anyone curing it. But yes, ME ruins sleep
Yes, it's a vicious cycle. At least I'm glad there bit more public awareness these days, compared to before when even the medical community tried to convince us "it's all in your head"
I was advised to cut out gluten and I was amazed that it increased my energy. At first I did gluten free everything, but a lot of gf is so over priced, over processed and the pasta is terrible! So I stuck to an amazing GF muesli (Sainsbury’s UK) and stopped eating bread much (as it def adds to the waistline 😭) but sometimes get gf bread and I don’t worry about the rest and it works well. Gluten free bread is generally a horror show!! Grey, nasty, squeaky midget sized slices.. the only gorgeous one I found is Marks & Spencer in the UK - the rest is horrendous! Some people can tell if they’re gluten intolerant if they’re often tired and constipated! Who knew?
One thing I’ve noticed that helps me feel better is actually a bit of a cold plunge I hate to be cliché because I know it’s a trend right now, but I grew up with having a swimming pool but unfortunately the water is usually pretty cold early and late in the season which is a pretty short season since I live in the northeast, but I find when the water is cold if I do a quick in and out dip it really helps relieve some of the pain and makes me feel very relaxed and there’s a noticeable improvement for a little while anyway. In my defense I’ve been doing that for years though so don’t lump me in with the people sitting in their freezers lol. also I was able to do float therapy once on vacation, where are you do the sensory deprivation tank with the Epson salts. I noticed a marked improvement after that as well but unfortunately it’s not something I can do on a regular basis. It also wasn’t a complete sensory experience since I had lights and music on in the room so I’m pretty sure it was just the magnesium and Epson salts making the difference. So if that’s something you’re able to do I would definitely try it.
Any time you hear gut it generally means straying into woowoo territory.
I love sweets. It's one of the delights of living. Not ever giving it up, wouldn't want to even live without my desserts.
most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the allowed radiation is less.
I've really been trying to eat better. Back when I was healthy I was on a low carb diet and was amazed by how energetic I was, so when I got this illness, it just made sense to go back to that sort of diet. The issue I have now though is that food preparation takes a lot of energy for me and foods that are quick and easy are usually not very healthy. Any tips?
Thats the tough part that I think we all struggle with. Im fortunate to have a great wife who makes healthy food. When I do eat bad I try as hard a possible to avoid sugar. Sugar seems to be my worst enemy.
Healthy eating doesn't have to mean spending a lot of time in the kitchen. I have one big frying pan with a lid. I use it for complete meals. I keep my meals simple with a meat or fish, a potato, sweet potato or lima beans, and a vegetable, fresh. After washing all of it, I simply plop it all in the pan separately, add about a half cup of water, some butter or margarine and sprinkle with mixed herbs from little jars, and put the lid on. I turn it on med low, or low, depending on when I am going to eat. If one needs to be added at the last minute, I do that, but cooking time is not a science around here. If the broccoli gets overdone or underdone, it's not a big deal. I keep a variety of fresh fruit and a couple of raw veggies for a salad if I want. Sometimes, a salad just means carrot pieces dipped in salad dressing.
Finally I find someone who understands how even preparing the simplest meal can be a struggle. With a family and kids to feed it gets worse. As a mom I want to feed them and take care of them first. When I tried going keto the worst part was that. I had to prepare something different for their differ needs then feed myself and do shopping. I just quit after a couple of months because it was too stressful
Try including drinking coffee as well as eating lots of tuna which is high in selenium, the body's master anti-oxidant.
Stay hydrated also, drink lots of fresh water.
Unfortunately stimulants are often really bad for people with ME. And Tuna (although my favorite fish) is riddled with Mercury.
😊Agree👍🏻Thank u J.😊
What should u be aware of if u wanna be in a relationship with a person whos diagnosed with me cfs?
Hello Haihley, Thats a great question and was thinking of making a video about that. Being in a relationship with someone suffering from an illness like this can be tough. We can no longer plan things ahead, because we dont' know how we will feel. We have to pace ourselves in order to not crash and flare up. We need someone to understand and learn about our illness so that we don't feel alone and isolated. The vast majority of people with illness are stripped of many things in our life and we are trying really hard to cope. Our significant others mean the world to us because most of the world has turned their back on this illness. I can truly go on for days. If I can help in any way, let me know.
Fight4 ME thank you for ur answer;
Currently i am talkin with a person who got diagnosed with me cfs.
Before i met that person ive never heard of that illness n it is rly new to me. Since we live in other Countrys; our friendship is long distance. I am starting to have feelings towards that person though. It is hard for me to tell if that person just needs space to 'recover' or actually does not want to talk to me.
I would appreciate a video covering that topic.
Also; that person told me they feel too broken to be in a relationship because of this illness. How do I 'behave' correctly around them, to not make them think I am constricting them in any way, yet still showing I care about them?
Thank you
I think the best way is to tell them you are there if they need you. They may sadly feel "ashamed" or "embarrassed" while they have a flare up. We are not ourselves and its hard to be seen in that light for some of us. Do your best to let them know that you are there for them and to contact you to talk if needed. That you won't judge them. A lot of ME/CFSers are judged and they may disappear so that they dont feel judgement while they are sick. Haihley, I got sick with I was in my early 20s. I played sports, boxed several times a week. I was strong and in shape. This illness beat the crap out of me. Its important to know that this is a REAL and devastating illness for many people. If you understand that, I think you will do just fine in your relationship. Too many people minimize the severity of this. I applaud you for reaching out and asking and learning about this.
I did this with you in mind. =) Im gonna go into more detail on part 2. ruclips.net/video/70Da5u1jUcU/видео.html
Good stuff ... Agree with what u say
I like what u said, But I do all them things.
Only super I must reduce some more and get some prebiotic.
What type of work do you do?
Hi. Could you please post the brand of vitamins you took? Thank you.
How hard was it for you to be diagnosed? It took me 11 years.
took about 4 years
It took me about 20 years.
I wrote and essay on my own personal experience with ME/CFS and all the relevant research that I could find. You can read it here: atlasbiologic.com/2017/06/02/88/ I hope it helps anyone who finds this.
I can't hear you very well
Going through some similar issues and I’m wondering if anyone has found benefit to fasting. 3 to 5 day kind of thing?
Juicing and coffee enemas help too :) also drinking miso
Recently diagnosed with ME/CFS? Must watch: ruclips.net/video/wPntYpff1FM/видео.html
+Fight4 ME Lovely video content! Excuse me for chiming in, I would appreciate your thoughts. Have you researched - Dinanlinson Rebooting Health Approach (Sure I saw it on Google)? It is a great one of a kind product for getting rid of chronic fatigue syndrome minus the normal expense. Ive heard some great things about it and my mate after a lifetime of fighting got excellent results with it.
+Fight4 ME
Excellent Video clip! Forgive me for butting in, I would appreciate your opinion. Have you ever tried - Dinanlinson Rebooting Health Approach (do a search on google)? It is a great one off guide for getting rid of chronic fatigue syndrome without the hard work. Ive heard some pretty good things about it and my best friend Jordan at very last got excellent success with it.
What you're told by the doc is not so important. It is what you experience that matter.
Do you know what caused this symptoms? Or you remember the day when that started?
It was after a real bad flu
What’s the name of your probiotic that you took?
I've changed them up several times since this video. But Visbiome and Florastor are two I currently take
Hey there, wondering what brand of probiotics you use? 🙏
I mostly use Visbiome
Totally agree that's what I've done!! 🙌🏻🙌🏻🙌🏻
Awesome. I hope its brought you some relief!
I wish that I had a group to talk to. So I will be waiting for the next blog xx
Can you share which probiotic you used? I'm totally confused which one to take. D lactate issues,TH1/Th2 imbalances. I presently have a bottle of Prescript Assist,but am not sure if it's right for me.
Hi Jason, I was taking ib flora by metagenix. After 5 years of great success with them, they seem to stop working. I also got on prescript assist and it worked well, but the problem is that its an SBO ( soil based organism) Some of those strains are not naturally found in our gut and there is not enough to studies to prove its safe. So I got off of it right away. Now I take VSL 3 and its pretty strong. It actually made me feel a little worse at first (start with one pill) but now im seeing the benefits for sure and worked my way to 2 a day. Took a few weeks. Mention VSL3 to your doc and see if its right for you. Hope that helps
Thanks for the reply. That is one thing i have been concerned about with the PA,so still trying to find some studies on it's safety. I tried VSL3 and afterwards found that it had Streptococcus thermopiles which stimulates Th2 cells(not good). Also has some Lactobacillus strains that are D lactate producing which i can't take either. So,am still trying to find the most suitable probiotic and is tuning out to be quiet a puzzle.
hmm Look into metagenix ultra flora ib
What about Honey instead of Sugar.
Still has a lot of sugar. For me personally its affected me just like sugar.
Hi I have me/cfs. Bad. Fibomalyagia. What I call a flare up. Pain so exIt’s caseating pain excuse she ate in pain heartbeat was up to 300 when I was checked on my flareup I feel like I wanna cut the legs off to anyone else get this to
Sorry to hear that you are dealing with that
We're are you at in Cali? Great info!
Thanks. Im in Orange County
Fight4 ME May I ask what you think of the movie "Unrest"? I won't watch it, because I know that recovery is possible.
I was actually interviewed for the documentary. I think it shows the female perspective well and not the male perspective. It also mostly shows SEVERE cases. Doesn't show all the in between. Which I think is very important. Most people with the illness "look fine". That needs to be showcased IMO. Jen Brea is brave for putting her story out there like that and she is bringing awareness to this illness. That being said, Unrest doesnt imply you can't get better. It shows her trying everything to GET better. I for one, do not believe there is a cure yet. I think people who claim to be cured are either lying or they had something else. I do think that you can get a LOT better though if you take the right steps and have a good team around you. I have yet to meet someone with ME who flat out got cured. I do believe we will have medicine out soon that will allow us to live relatively normal lives. Im very hopeful about the future in that regard.
What brand of probiotics do you recommend?
I personally use VSL3 but you should talk to your doctor before starting any probiotics. VSL3 is very strong and not for everyone.
Where do you get VSL3? Any local markets in So Cal?
Awesome💖
Sorry sweet things I much reduce.
It only helps 5% but that better then nothing.
Annmarie123ize same here!
Hmm I feel like wine works for me. ✔️
Do you go to a naturopath?
No , just a ME literate Doc
@@fight4me747 haven't met one in 23 years.
@@KidCity1985 What country/city do you live in?
Nobody needs to consult with a doctor to do any of these five things. You're making it sound like this illness can be treated by simple lifestyle choices. I hope you can see why that would offend people like me who've been doing these things for years and all it has done is slow the slide into a semi-conscious coma. This is an illness that needs research, not basic health advice.
Thats why I made it clear that its BASIC things that worked for me. I also mentioned that this video is mostly for people NEW to ME. And anytime you add a new supplement and prescription strength probiotic, its wise to talk to your doctor first. Remember, there are many people that haven't been sick very long. They don't know that sugar hurts your immunity and hurts your gut flora. Or that probiotics can help. YOU may not need basic health advice, but I belong to many support groups and you would be shocked at how many people dont know the basics. Im a bit blown away that you would find this offensive. I've gotten many emails from viewers thanking me for this specific video . Best wishes
What is ur perception I don't understand. @google user
A Google User yup
A Google User I agree with you. 35 yrs with this condition here, tried almost everything while my health keeps sliding downwards. I get offended by people who think just change of diet will "cure" it, which it doesn't. But, at least, trying these things will somewhat alleviate some of the fatigue. It's a bandage, not a cure.
Has anybody tried homeopathy? Please comment.
I did. It can help with some symptoms, but it will not cure ME
There is a type of ME, slow and progressive and genetic.. And nothing helps. Only a miracle.
Lol smh
Whats so funny?
You are obviously not on the extreme spectrum....
The irony of this comment is that everyone with ME struggles with people judging them based on looks/approach....And here you are doing exactly what our community hates to see and hear from people. Notice the video title says "BASIC" things that can help? This video was obviously not made for people on the extreme end of the spectrum, its made for people who are just starting their journey and don't know where to start. Its also made to start dialogue in the comments about what others may be doing that helps them in anyway. Cheers
I hate that comment too. People often asks me why I'm not working because I "appear" fit (
Exactly. I was never a super muscular guy but i had a good 10-12 pounds more of muscle before I got sick. And because Im able to make 1 video every couple months some people think Im totally healthy lol Glad someone gets it
Fight4 ME I immediately lost 10 lbs after initial mono infection, then lost additional 10 lbs in next few yrs with CFS development. That's a lot when considering I started off 115 lbs down to 105 then to 95 lbs (yes, I'm only 5'2" but still). Now that I'm older & slowed metabolism, back to 114 or so but not with healthy muscle this time, rather with unneeded fat by being very sedentary over the years :(
Sad thing is aerobic exercise seem to exacerbate my CFS, while without exercise, I know my joints, bones etc will be affected :(
Sorry man
But no matter what condition you have or don’t have. Doing all those things will make anyone feel healthy (not as sick) Also they are all good recommendation for mental health.
I’m not dismissing you have a physical illness but you also have a mental illness. Definitely give it some thought.
Tom, you know NOTHING about this illness, yet you think you can diagnose me with "mental illness"? Tom, I don't have ONE symptom of mental illness. Never had anxiety, never been depressed. The things I mentioned make anyone feel healthy, you're right. The point of the video is many people new to an illness don't know where to start at times, and the basics can be overlooked.
Indeed Tom, I know a chap who's had this condition for decades and I had a suspicion that it was mainly in his head.
Two years ago, however, I had a nasty bout of gastro-enteritis and from which I never recovered. I appreciate that this is purely anecdotal but I can assure you that it's definitely a physical illness and one which no amount of positive thinking, CBT, psychiatry etc. will 'cure'.
Yes, these methods might be useful as coping strategies as indeed they may for people with cancer or MS but this is only on the level of helping with the lifestyle alterations having a long term disease necessitates.
I've tried pushing through it on my own by attempting to exercise no matter how bad I feel but this results in total wipe out.
One thing that is worth noting also is medical professionals who suffer from ME, for there are indeed a number out there, and mark how their eyes are immediately opened by the experience. None of them subscribe to the bio/psych/social model.
Artur Sixpence could not agree more, I hope you can achieve stainable recovery. Medical science has along way to go before it can fully understand and can treat all immune systems disorders.
Fight4ME just has a serious superiority complex. Just taking him down a peg or two. Super dismissive about anything to do with mental health. Comes across very narrow minded.
Er, I suspect you've not read my post correctly, as I point out that the condition has little to do with mental illness apart from the depression that can occur due to the longevity of the symptoms and being marginalised by our health systems.
These are a consequence of the illness not part of the cause.
Artur Sixpence no it’s ok I was agreeing with you. I don’t think mental illness is the cause of your condition, just makes it worse if you’re not aware of it.
1)I'm really excited about this channel. I'd really love to see those interviews with your loved ones, especially about how they came to believe you if they didn't before. I'd also love to hear more of your journey with ME and whatnot.
2) I can totally agree on cutting down on sugar, but as a fellow Californian, don't you dare take away my In-n-Out :p lol