(2016) Simple But Effective Tools for Management of ME/CFS and FM

(2016) Simple But Effective Tools for Management of ME/CFS and FM - Lucinda Bateman, MD

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8 жыл бұрын

Simple But Effective Tools for Management of ME/CFS and FM - Lucinda Bateman, MD
Bateman Horne Center is a non-profit clinic and research center, advancing the science, treatment, and education of ME/CFS, fibromyalgia, and related conditions.
Bateman Horne Center of Excellence - Education Meeting, August 3, 2016

Пікірлер: 34

@buzzwaffle 6 жыл бұрын

Finally, someone who gets, that we get sicker with more activity!

@sheilasingleton7904 7 жыл бұрын

I'm having to travel six hours to Hunter Hopkins, then pay cash-probably close to $5k-in order to get diagnosed. I live in a medical community and am also an RN yet 90% of the docs believe it's all psych and the other 10% don't feel comfortable diagnosing. I've been going through the disability process for over two years now-WITH a great attorney. I can't believe how ignorant the medical community locally wants to remain. I bet my frustrations are showing 😌

@truthprevails7085 7 жыл бұрын

Sheila Singleton hang in there, Sheila. .it took a long time with attorney - but they finally came through, thank God.

@RamblinLamb 6 жыл бұрын

Hi Sheila, I hope you are feeling ok these days. Thanks for your comment. I took my husband to the Mayo in Phoenix. He finally got a diagnosis after some 8 1/2 years of hell. Knowing the diagnosis helped a lot even though it broke my heart to hear there is no known common cure and everything out there is trial and error. It took my guy 2 years 7 months to get through the ssdi process. Way too long. When he was finally approved, it was a huge weight off his shoulders, and suddenly that added stress lifted and he was so relieved. I'm not sure about Hunter Hopkins. They do have a Facebook Group. There are many others too. NL

@mecfstraveler 6 жыл бұрын

Sheila Singleton I had to do my own research to try to find out what was wrong with me. And it wasn't my idea. My neurologist assigned me that. He firmly believed that all of my symptoms could be explained by my fibromyalgia. And I told him I had lived with fibromyalgia and this was a beast with a different name and a different personality. After all anybody with fibro knows that you feel better when you move even though it hurts when you first start moving. And that's every time you start moving. Whether you're getting up from sitting down or climbing out of bed in the morning. It is very difficult to move and it hurts so much! But ME-CFS leaves you stranded in the middle of a large store because your legs suddenly can no longer move and you are draped over your cart trying to not fall on the floor. and I might also mention the panic you're feeling at that time not knowing what is happening! And then about an hour later, after receiving no help from anybody that saw you struggling, you're finally heading for your car dragging one of your legs because you cannot make it move on its own and you're now at the point of Tears from the sheer exhaustion you are experiencing from all of that struggle and you still have to keep going to get to that car! Good-looking guys or standing there staring at you like you're a freak dragging your leg and crying draped over an empty cart because you left your cart full of groceries behind and grabbed an empty one to get out of that store. And then you finally get to your car and you can't raise your legs inside of the vehicle so you put your hands and arms underneath your thigh and lift first one leg, then the other into the vehicle and shut the door. Finally feeling like you have some privacy you just burst into tears. And you can't control it the crying. When you get exhausted with this disease you start crying whether you're in public or not you can't help it. And it means that you are about to pass out and not wake up for hours on end even if your house catches fire. You would be able to hear the smoke detector, but in that crash induced state you cannot come totally aware and talk or move even if in your head you're terrified! And nobody knows. They think you're just sleeping and leave you that way. It's taken me hours, being aware of what's going on around me, 2 finally manage to open my eyes or make a sound so that I get somebody's attention in the house. and that's with me sleeping right in the middle of the living room in a hospital bed. The rails don't do you much good when you can't operate your body to grab them. Self-help measures are not usually effective as prescribed, but you learn to get very creative and finding a way 2 help yourself as much as possible. I studied fibromyalgia like my neurologist ask me to because he was too busy and came across an understanding that CFS was constantly hooked on to fibromyalgia like it was part of it. and I all I could think was I'm not sleepy and I don't have a sore throat or swollen glands in my neck. So why in the world is CFS sitting here by fibromyalgia every written thing I can find? I remembered then the fibromyalgia support group I had been in that had had CFS patients and it as well years before and this was an online group. the moderator told us the CFS patients were extremely ill and wouldn't be able to interact as much so to not type questions to them specifically or try to draw them into the conversation. that they were there for the educational materials that came with the support thing and the lessons that we were assigned every week. it was after remembering how sick those people were that I thought well I may as well read my study materials CFS portion and see what that disease is aboutsince it's hooked to fibro somehow, and I know I have that. Well it is a book that was written by a doctor that just retired that is a specialist on CFS. I didn't have to read very far to find out that they were talking about me. I never dreamed CFS was the monster disease that it truly is. I had never heard anything about it except being sleepy and having sore throats. and I wasn't even sleepy half the time I was out. it felt more like I couldn't remain conscious. There was no yawning involved! and there was no precursor or warning before I would just suddenly go out like a light and be awakened by something going on like choking on the food I was just chewing, or my kids shaking me because I'm driving the car and I have gone out cold at the wheel! Fatigue as such an inaccurate word for this disease. Will when I took the test in the book The only symptoms I didn't have a lot of were the neurocognitive symptoms. if I'd have had those then I would not have been able to study. And I still finished the test and scored at 15% of normal functioning for me. I went on to the Canadian consensus criteria and read that then took their diagnostic testing and scored the same as I had with the test in the book. So I took photo copies of the test scores which included the questions and my answers. I provide a copy to my neurologist, my rheumatologist and my general practitioner. all of the questions I had answered had to do with things I had already been diagnosed with or had been documented as a symptom I had complained about to my doctors. All three of them agreed that I had m e c f s. that's how I got diagnosed. the neurologist dumped me as a patient. the rheumatologist dropped me as a patient. My primary care physician had a panic attack when they did that because he didn't know what to do. so he spent the next 10 years telling me I was sick in the head and being verbally abusive and intimidating even though he had diagnosed me with a real illness. The Institute of medicine report has not been respected by our government. They chose not to act upon any of the recommendations put forth by The Institute of Medicine. and there has been no trickle-down effect as of 2018. The NIH is doing a very very small study after giving us big words to make us think it was going to be a big study. I'm tired of getting my hopes up. these government agencies and Congress even Barack Obama all say oh this is terrible we can't stand for this to continue. And then once they get us quiet they turn their backs and don't proceed forward or do anything that could possibly help us or validate us to doctors and our peers and our loved ones. I sound bitter because I am at this present moment. but that's just because I read an article earlier with a cold harsh reality of what was actually happening at the NIH after I had put my hope in them. I think it's detrimental to get our hopes up. I plan on making the most of every moment and doing the best I can. the climate out there is not friendly to this illness. and even when presented with actual biological facts studies and large-scale controlled studies and research they still do not act on it. they will say yeah it's a real disease. but they don't do anything. so what do I care about new research? the government isn't going to tell my doctor about it. They've known for years and they have not let the medical community know how terrible this disease is. I so tired right now. Too many emotions going on.

@arfarishtanahida1538 4 жыл бұрын

@@mecfstraveler tnx for sharing, but is it govt not telling to medical community..?? I guess the medical community has told the govt, but they are not pushing the required funds to forward the research and meds that can be developed..

@Felix_Effex 4 жыл бұрын

Amazing Video.. I've had this for over 32 years with bouts of improvement, then rock bottoms, viral encephalitis, mono, bouts of exreme fatigue, job loss, raynauds, pain, exughstion, sjrogren, EBV (repeated tests) EXTREME ALLERGIES, Hyper Ige, (all my life) and and hundreds of false diagnosis that have landed me in the hospital.. WHY are there NOT more doctors like you

@Felix_Effex 4 жыл бұрын

Michigan IS terrible, they will put you on Psych meds, Steroids, and Opiate Pain meds, and tell you you need a shrink.. it's terrible.. anything to make people addicted, sick, and DEAD.

@jrhoads4849 7 жыл бұрын

Lucinda is not only inspirational, she has a power of compassion that sets her apart from most medical people. 30 years ago, that's my time frame. I need to go back to Kansas! BTW, to quickly test your orthostatic intolerance just tilt your head back as far as it will go, hold for a few seconds and then bring back upright. My ortho intolerance on bad days will trigger anxiety attacks, especially something as stressful as grocery shopping. 4 hours is the typical window of energy for me. Mornings are best after good sleep while afternoon is crash time with more malaise and pain - especially the mid/lower spine and never goes away. PEM causes insomnia which in turn causes more malaise. Your comments on sleep nailed it, especially the catch up sleep. I have a 4-5 hour sleep window, wake for a period of time and then crash again for another 2-4 hours. The young man's inability to talk was probably an anxiety attack. Vertigo wasn't common in the first years but now is occasional. Fasting and Ketogenic diet do help actually. I can feel less inflammation. Fatigue in CFS is a mitochondria/ATP issue which probably implicates oxygen the most. I cannot tolerate Gabapentin, nortrypteline etc etc. I am wanting to try LDN.

@KidCity1985 5 жыл бұрын

Thank all of you, please keep fighting for us.

@kristinae.7084 2 жыл бұрын

This is so helpful-- THANK YOU! Most people can fly on a plane one day and return to work the next day. If I spend a day traveling, I know that will put me in energy debt, so I have to schedule a whole day to be in bed after a travel day.

@RamblinLamb 6 жыл бұрын

Thanks so much. I finally looked at your website. I'm thrilled to see this. Perhaps when I complete the "healthcare marketplace" education program, I can do something for you from the business/marketing and fundraising end of things. We've got to find a way to help people -- families as well as patients. With 100% focus on the patient, the families get no support. I want to change that.

@YoganandaOM 2 жыл бұрын

Thank you!

@snowstorm1956 Жыл бұрын

I am in my 30th year, and 30 minutes into your video . Excellent chart! You 've got me for the next hour and forty minutes!(smile). Just excellent! You see there was no available info 39 yrs ago.. It's been 30 yrs. of pure lab rat hell.. My thanks and prayers for newcomers.. Will watch this in it's, entirety later, brain fog starting in. (cognitive). I'm at the post office, my envelope has no stamp and I spent my dollar this morning doing 2 loads of personal laundry instead of 1 🤦.. 😣🥺. My thanks, really great chart! Wishing you all well.💞

@snowstorm1956 Жыл бұрын

Had to do this for 30 yrs. without monitores .Did not know about it,..it is dead on!!ok Doc let's see what u got for it.😉

@mecfstraveler 6 жыл бұрын

Okay, I cannot tell what is believed to be "beneficial" management for this disease? The diagnostic criteria is far from what is actually happening. Pacing? Is someone about to say "GET"? The patient MUST be debilitated by at least 50% of what is normal for them. If they have pem, it will be so freakishly surreal to hear the patient describe. It is not illness relapse. There is NO way to pace yourself accurately in an attempt to fend off PEM. The envelope becomes smaller with no warning. You just suddenly lose yet another functiin that was not causing PEM. The patients need to be put in bed , at home, in a darkened room, and they cannot go to a ton of doctor appointments. The fact is that the way things happen, and operate in our society, forces us to go beyond our boundaries. Yet we are required to go to appokntments, fill out paperwork, etc. Pacing... I was walking a short distance using my walker, once a week. I'd never had PEM from this. One day, after doing this activity for 2 years after being initially diagnosed I was in a crosswalk in a 4-lane busy thoroughfare when my arms literally gave out without any warning. I collapsed onto my walker and could not get up, because my arns would not bear any weight, I was experiencing absolute muscle failure. THAT'S THE FATIGUE IN ME/CFS! Absolute muscle failure for who knows how long! You are so wrong to think being active helps us stay active. It is a guarantee that more debilitation will be arriving. And you're telling us to keep track of our sleep and to write things down record it. I did all of this. I wrote down all of the details trying to stay on track pacing myself, resting, getting back up to do a little bit more, resting again. All it happened is every single thing that I was getting up to do was eventually something that I lost the ability to do entirely. I can't write by hand anymore. My brain can't figure out how. I can't cook anymore because I am totally unable to extend my arms forward from my torso. And I cannot stand or sit upright for more than 5 minutes or I begin to suffer orthostatic intolerance and structural fatigue. Muscles begin to cramp and the pain is excruciating. If I try it much longer next thing I know someone is waking me up because I have fallen asleep and slid out of the chair onto the floor without even knowing I had fallen asleep. To think that if I'd have gone to bed and stayed put the first few years of my illness that I could be much less ill then I was at onset. That's the key. Let the person rest during those first few years because science has now proven that those years are crucial to a person's chance of recovery. People who go past 3 years with this disease actually have a physiological change in what starts going wrong according to all of the research. Certain things that were present in our fluids during the first three years totally disappear and we become extremely ill people. Everything I tried to do that didn't cause me to have any issues afterwards became things that brought on post exertional malaise. I paced myself into a bedridden status. It's absolutely horrible and the truth needs to be told now that a few years down the line so much more has been found out. These videos are outdated and actually harmful if we implement the things suggested here. It's well intended but unfortunately no longer supported by science technological improvements allowing people to see what is happening in our bodies.

@JohnBedson 3 жыл бұрын

I agree. 99% of KZfaq videos are pushing "treatments" for ME/FM that have either been debunked by science, or that we patients know don't work.

@mecfstraveler 6 жыл бұрын

What is the core message that defines the view of how the people in this Bateman Home Center?

@cissi168 Жыл бұрын

Is there a place to read this video in a short text format? It's very long and difficult to watch for me

@kennethmoore3783 4 жыл бұрын

Fibromyalgia Facts - Cochrane Library - Fibromyalgia is a clinically defined chronic condition of unknown etiology characterized by chronic widespread pain that often coexists with sleep disturbances, cognitive dysfunction and fatigue. - Duloxetine and milnacipran are FDA approved for the treatment of fibromyalgia - Duloxetine and milnacipran had no clinically relevant benefit over placebo for pain relief of 50% or greater - Duloxetine and milnacipran had a clinically relevant benefit over placebo in patients global impression to be much improved: 888 of 1710 (52%) on duloxetine and milnacipran. - Milnacipran had clinically relevant benefit compared to placebo for pain relief of 30% or greater. - Quality of evidence considered to be low for studies evaluating duloxetine, milnacipran, and desvenlafaxine. - A minority of people with fibromyalgia experienced symptom relief without side effects from duloxetine and milnacipran. - European League Against Rheumatism ( EULAR): Strong evidence was available only for drug therapy. Based on a good response in several small trials, the group recommends heated pool treatments with or without exercise (strength of evidence: B). Tramadol, antidepressants, tropisetron, pramipexole, and pregabalin are effective for reducing pain, and antidepressants can improve function (strength of evidence: A). There is only weak evidence supporting the use of talar exercise programs, cognitive behavioral therapy, acetaminophen, or weak opioids. No research has evaluated the relative benefits of treatment, and most of the studies are short in duration, creating the possibility of a potent placebo effect. - Bottom line: Antidepressants, pramipexole, pregabalin, tramadol, tropisetron, and heated pool treatments have been shown to have short-term effectiveness in the treatment of fibromyalgia pain. LEVEL A-very confident that the true effect lies close to that of the estimate of the effect LEVEL B-moderately confident in the effect estimate. LEVEL C-confidence in the effect estimate is limited. LEVEL D-very little confidence in the effect estimate. There is no scientific evidence that any dietary supplement or a particular diet will relieve fibromyalgia symptoms. There is no scientific evidence that spinal cord compression or a primary autonomic disorder are important causes of fibromyalgia. Fibromyalgia is a horrid condition that is poorly understood. -

@trouble9862 6 жыл бұрын

Thank you for your talk it was interesting, good explanation and good tips to take away. Please do not see what I am about to say as a reflection of my opinion of you, you clearly know your stuff. Unfortunately your advice on the Ketogenic diet is misinformed. Recent ME research points to a problem with the Krebs cycle in ME patients. In the Krebs cycle the electron transport chain takes electrons from glucose to produce ATP (a very simplified explanation I know) ME patients are running anaerobic respiration in cells which is less effective at converting glucose to ATP and they produce far less energy. So a high carb(high glucose) diet is not an effective way of producing energy for us. A diet low in carbs (low glucose) moderate protein and high fat causes the body to switch to fat burning metabolism. Fat can be converted to ATP in ME patients (and healthy people) it is a cleaner fuel for the body and produces less inflammatory problems too. You referred to gluconeogenis ( the liver turning fat and protein into glucose) this is not a dangerous process it is natural and the human body has been doing it for thousands of years without adverse effects on muscle mass. The body contains a lot of protein, it does not break down the good stuff, it breaks down the excess proteins. You are confusing this natural process with the unhealthy process of the body entering starvation mode. Starvation is when the body starts to break down essential protein and damage is done. For a more detailed explanation of the difference and the actual mechanisms that are at work in the Ketogenic diet and its positive effects on a multitude of chronic diseases including cancer please watch ‘ Emerging Applications for Nutritional Ketosis by Dominic P. D’Agostino PHD. Also search Ben Bikman. There are many other brilliant doctors to look up but I’m sure you will find them. As for reduced energy. Many endurance athletes use Ketogenic diets, the Australian cricket team are low carb/ keto and Usain Bolt eats a low carb (30%), high protein diet. My personal experience? I have had ME/CFS and fibromyalgia for 8 years with gradual deterioration year on year until forced to stop work. Bed bound 3 to 4 days out of 7. Seated the rest of the time. Medications have not helped, treatments have not helped. I found this way of eating last year, it took a while to stop fearing eating fat having been told my entire life that fat is unhealthy and it took a while to understand what to eat. It has not cured me, but the positive changes I have seen to my health are very noticeable. Acid reflux gone in two days, IBS reduced within one week from daily to once or twice a month, reduced hair loss, improved teeth health and nail growth, noticeable reduction in pain never achieved on medication, reduced skin itching, rashes, and infections, more restful sleep, improved cognitive function and a slow but steady reduction in weight (17lbs and 13.5 inches loss) without need to calorie restriction or exercise. A recent visit to the doctors showed my blood glucose levels are in the health range, no pre diabetes (I’m over weight and 48 so this is unusual) and my cholesterol levels are all in normal healthy range all this on a high fat diet. Often doctors are blinkered to the realities of ME/CFS and fibromyalgia and there is a lot of prejudice. Unfortunately the Ketogenic diet suffers the same sort of prejudice but the science is out there. It is overwhelmingly positive and from my experience for the first time in many years I have ‘moved the needle’ in a positive health direction. I hope you find this information useful not critical as it is not intended to be.

@rainicascadia5514 3 жыл бұрын

Thank you for this helpful info♥

@trouble9862 3 жыл бұрын

@@rainicascadia5514 I had forgotten I write this essay 😂 I progressed on to carnivore diet last year & 6 months in I saw dramatic improvements so if keto doesn’t do it for you try that. MeatRX is a great source of info on that

@rainicascadia5514 3 жыл бұрын

@@trouble9862 thank you for responding! Keto has been helping alot especially with energy. I've been considering carnivore since a terrible "crash" I'm having difficulty overcoming. Wondering if I even can. Due to one of my doctors insisting on 45 minutes aerobics every other day. Knew I had fibro. Found out about ME CFS 2 months ago. I'm learning as drs know next to nothing. I hope you are doing well! Sounds that way! Thank you♥♥♥

@barbh1 7 жыл бұрын

I love aqua aerobics, but it makes me overtired and I don't recover for several days.

@amygregg1658 6 жыл бұрын

barbh1 I know what you mean. When I tried water exercise in the past, I found that I felt good in the weightless environment in the water and I did more than I should. As soon as I got out, I could tell, and then I'd crash for several days after.

@jeannieleasa1579 7 жыл бұрын

I too have been suffering with CFS for 26 years. I have several other diagnosis that are Chronic pain related. Arthritis at an early age, Fibromyalgia, MCTD, and DDD. I notice you have been trying alternative medicines/treatments. I have become slightly interested in "Cupping". I don't mean a menstrual cup but cupping such as the American Olympic athletes are doing. I thought it seemed weird and silly at first, but as I have heard more and more about it, I am wondering about its efficacy for people with fatigue and pain. I have always said it feels like there are toxins that need to be gotten rid of. I picture the toxins or inflammation in my muscles and connective tissue. I wondering if cupping could help me. Does anyone have some advice?