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- เผยแพร่เมื่อ 8 ก.ค. 2024
- “Hot Areas in ME/CFS Research: 2018” presented by Anthony L. Komaroff, MD, Simcox-Clifford-Higby Professor of Medicine at Harvard Medical School and Senior Physician at Brigham and Women’s Hospital
Anthony L. Komaroff, MD, provides the latest installment of “Hot Areas In ME/CFS Research: 2018”. With increased momentum in research over the past two years, this webinar is a timely update to his popular presentation from our 2016 series that addressed current understanding of the role of various systems - including the brain, energy metabolism, genes, and immune system - in the pathophysiology of ME/CFS.
15 years doctors basically said this was all in my head. Last 7 years housebound to bedridden. Thank you so much Validation is immensely helpful. This is my life explained
I have had CFS for roughly 24 years. Going from being an energetic, active person with so much hope to fatigued, weak, depressed and suffering from what I called "phantom symptoms". Save a few of my co-workers, everybody else, including family mocked me.
I was just lucky that at the time, the doctor that diagnosed me, who was a cancer doctor by trait, started studying CFS because his own nurse had developed it. He was one of the few who took it seriously.
As a general rule, in the years since I have had it, actually feeling good with some energy can range from 0 - 15 days a year on average. The 15 days are rare. I have learned to joke and smile when I feel weak and sick and other people assume that it means I feel good - no I just learned to smile through it all. Then when I have really bad "I wish I were dead" days, they think I am being melodramatic and looking for pity. If CFS *was* contagious, I'd BITE a few people!😠😠😠
This is so me!! Thanks!
Nobody Uknow! This is me!!!!! Omgsh!!!
You're not being melodramatic....it is real and i feel it too. Some days are just bad and others are absolutely horrible.
Good to hear that you have a positive outlook, honestly Nothing we an do about it....just smile and make the best of the day!!!
YES me too! Amazing how others think you are an hypochondriac and just want attention! Told them you have no room to talk unless you've lived in my body for 36 years with this!
It is so real to us but others can't see what we are going thru, only God, and those closest to us, who often don't really understand it either.
So, for now I try to offer it as a cross God has given me. He has his reasons and to acknowledge this helps me to accept it and not be angry at it or others.
I felt like Crying loud to heard that our extreme debilitating pain and fatigue can now be explained to the love ones who keep teeling us you should exercise more. Tank you so much for caring for the many of us suffering FM/CFS
Plzz use herbs there is no other way out
I HV recovered using it
@@gauravgupta9265 WHAT HERBS, PLEASE TELL US !!!!
You are amazing your devotion to caring about us. Bullied we are over a lifetime of this collectively . So ill and lack of support. Thank you..you stayed with us.
This was a really good info and am glad I found this. I have had ME for 10 years and I can not believe that I’m still alive with the amount of abuse my body has taken from this diease. At the very least I’m encouraged what researchers are doing behind the scenes to help find a cure for us and I thank them from the bottom of my heart. I live and dreamfor the day that I can have my “old and wonderful” life back.
Amen!!
Well I can top that with over 30 years, my whole life near ruined with this since the 1980s and still no cause or cure. I have read over 2000 studies and published my own and we are still nowhere- speculation. Sure hope you get better and don't have to wait this long this certainly is hell. Best luck to you.
Thank you Dr Komaroff for your thorough and very enlightening report. I am amazed at the amount of research that is happening, and so grateful for Dr Komaroff and all the other medical professionsals who press on to find the cause and cure of CFS. Sadly, I still encounter doctors who know nothing about, or don't believe that CFS is real!
This is the first video I've seen that shows a solid, reliable understanding with clear evidence about what this disease really is.
Dentist and ME-sufferer for over 5 years. Thank you all for this information!
How are you working?
Thank you to all the Researchers & the few Drs. who actually care to study ME/CFS! I'm so grateful to you. I miss my career & horses every waking moment. Sadly, most Drs. are woefully ignorant re: ME/CFS. I refused to go to Mayo because all they had to offer was GET & CBT, right up until Aug. 2021 !!! The Mayo Clinic kept recommending GET & CBT, even though the 2007 PACE STUDY (who came up w/ those harmful recommendations 😱 ) had been long debunked. Sad that I am just a regular person, who grew up in a medical family but have no medical training - could do the research & from personal experience - figure out that GET & CBT was harmful? ME/CFS needs to be covered in Medical Schools immediately. Failure to do so is breaking the Hippocratic Oath & causing great harm to so many.
I have suffered for 40 years. Have searched everywhere for answers. This is the best , most comprehensive effort I have seen. However still says at the end of the day. We don't know yet. Still credous to everyone trying.
I was bedridden for three years after a severe adverse drug reaction. Three years of doctors denying what happened right in front of them. Had to have an intervention because they only reached for more pharmaceuticals. I quit my remaining blood pressure and cholesterol ( coincidentally has FDA warnings for brain damage). Within a week the poly pharmaceutical dementia started to lift. Diagnosed with M.E, every doctor ridiculed it. I quit doctors and have improved to a bearable level. No longer bedridden and able to do very little but still improving. I take a rice size piece of Rick Simpson oil( reduces inflamation among other things like controlling dry heaving, temperature, pain, etc. My skin has been on fire for 4.5 years and I just started lymph drainage for my head and body. My burning skin is subsiding. It still returns but with the treatment it also helps with tje brain fog. I have had to research quite a bit and the approaches I have taken have made a significant difference. Doctors only prescribe and seem to have no clue of anything other than pills. Mass prescribing of neurotoxins and they ridicule the injury. The injury that they surely share in creating. Our academics are following along blindly and just do not listen to patients
Mike Sawatsky
What med were you taking that causes brain issues.
What has helped you?
What has hurt you?
Hang in there, Mike. I too, had a severe adverse reaction to a drug but it was not of my own doing. I went to a party and someone drugged my drink. I was bedridden for one year because the drug re-activated my EBV which reactivated CFS. I found an incredible naturopathic doctor that understood my symptoms and helped me for about a year. I am no longer bedridden but I really have to be careful not to push myself. My symptoms are usually fatigue and also hot flashes and brain fog. I don’t take any type of Western medicine drugs. I take all natural vitamins and I’m very strict with my diet. I had to do a raw food diet for a year because I became sensitive to everything. I ate raw veggies and beef. I no longer eat any fowl or eggs because it re-activates EBV.
Now I’m back to eating cooked foods but I will probably never eat chicken or eggs again. Also, I do a lot of meditation and I do EFT which helps my attitude.
I take natural herbs for depression and so far, so good. This is a lifelong, lifestyle change and you have to be OK with that. The reality is you might never be the same as you were in your 20s or before CFS and if you can get to the point where you are OK with that, it will help. You can also keep taking the best care you can of yourself and using natural remedies which will probably help. Also there are a lot of free forums in groups on Facebook that have tons of information about CFS. Try to join and they will be very helpful. Best luck to you.
Library Files i had four infusions of Rituximab. The fourth obliterated me and left me bedridden. I was then dismissed for three years while on a statin for cholesterol(fda waning for brain damage since 2012) and a blood pressure med. After three years of being ignored I had an intervention and fired my doctors. Within a couple days of quitting these two meds the poly pharmaceutical dementia started to subside. I have researched quite a bit and quit all prescriptions almost two years ago. I also take rick simpson oil before bed to sleep and reduce the constant dry heaving, over temp issues of burning up, siezing brain to name a few symptoms. I am now also doing manual lymph drainage on my head and body. This has removed the burning skin all over my body that was unbearable. This technique has helped chemo patients and other types of brain injuries. My wife actually took the course as it coincides with massage and the healing touch therapies though hospice. I have long way to go still but my symptoms have been reduced to a bearable level. All my doctors were doing were reaching for more meds, while not believing the injury was caused by the infusion that happened right in front of them. The nurse called twice to stop as I was shutting down. I am not mad at the injury but how tje injury is ignored. Adrcanada.org has just come on line and they have a lot more data and information on this injury. Had our doctors even considered the injury that they watched happen I may have recovered and already returned to work. Three years with my brain soaking in chemicals because doctors think they prescribe flintstone chewables and ignore the data and the long term research, the patients. I will take kidney failure over the dementia ward. 45 is too young to be put into an extended care facility. Check out poly pharmaceutical dementia in the old folks homes. It is rampant and more meds is all they reach for. When a chemical brain injury is only a symptom that is given more chemicals it is no real stretch to see why alzhiemers and dementia are rampant. Almost non existent in the 60's and prior. They are man made injuries and the way they ignore serious adverse drug reactions is a big part of the injury. I was almost put away into an extended care facility. Fighting a system that ignores the injury to protect the incompetence of our leaders. Fda warnings since 2012 and I still have to argue with doctors of the damage.
Mike Sawatsky
What was reason for Rituximab?
What country are you in?
Who diagnosed you with M E ?
Were you able to get on disability?
With respect to your brain, do you have any fillings or root canals?
Cholesterol?
As I understand, approx 2/3 of our brain is made up of cholesterol. This means if you do not eat the body will produce. Cholesterol heals. It’s high in blood stream if there is injury in blood vessels. Eggs have every nutrient known to man except vit C. Eat with runny yolks so as not to destroy nutrients.
Read Hal Huggins, ITS ALL IN YOUR HEAD, if you have mercury amalgam fillings or root canals. It’s not a cure for M E but it should improve your situation if applicable. Sometimes a little improvement can leverage a lot of life.
Focus on nutrient density.
Have you tried
D Robibose
L Carnatine
What have you read?
Dementia?
Do you forget what things are used or are you just forgetful?
Lyrica and cymbalta have done a lot of neurological damage to many people for example... but most psych drug do brain damage.
Thank you so much Dr Komaroff!!
ME patient and only person invested in keeping informed of research and myself as healthy as possible in this chronic illness journey. CureME2018
Dr Komaroff is an excellent speaker. Clear, to the point and very informed on the research.
6:40 lists the hot areas or research covered in this video, would be great to add to the description so people with Cfs can access key info quickly, adding some chapters to the video for each section would also be super helpful :)
I have been living with CFS for 18 years and it is so interesting that this Professor has done this study and actually have found information that will be helpful and hopefully some GPs will take time to read his research. I am trying to study as i thought but i realise that its like pouring water into a bucket with a hole in it; it goes in my brain and straight out. I was so desperate to try something that will help me, my doctor after 18 years has said you will just have to pace yourself for the rest of your life .......
Well they better get with it. I have been waiting 30 years to get over this but life is running out. I have spent best years of my life fighting this illness. In this time I started college and have my own study published and still we have no cause or cure. Just more studies. Good luck to all.
Great information! I am a patient with CFS and FM. This data gives me hope! Thanks for sharing.
Other research I've come across suggests that one of the causes is antibiotics which wipes out much of our gut flora. The consequential rise of bad bowel bacteria (such as clostridium) can lead to inflammation and all the other symptoms of ME/CFS. Some research shows that a lack of certain bowel bacteria can lead to food sensitivities because that particular bacteria is needed to break down that particular food. Excess toxins which our body can't expel properly are possibly a cause of inflammation, mitochondrial dysfunction and fatigue. But the cause of those toxins may vary: it could mercury poisoning or living/working in a mouldy environment or bacterial issues from antibiotics administered as medicines and/or found in food (e.g. chickens given antibiotics to make them grow quicker) or via glyphosate (an antibiotic type weed killer) sprayed on fields and absorbed by the vegetables we then eat which then contributes to desimating our microbiome. Excess oxylates have also been linked to chronic fatigue in some people - the list goes on. These are just a few of my conclusions based on other people's research. I may change my view in the light of further research. Thankfully there are multitudes of recovery stories out there such as taking massive doses of probiotics or taking botanicals for treating lyme disease, or treating candida with caprylic acid or botanicals for breaking down viral or bacterial biofilms or the Perrin technique for eliminating toxin build up in the lymphatic system, or detoxing the body via a vegan diet or even its opposite, a carnivore diet, which eliminates multiple veg and grain toxins. There is a remedy out there. Let's not give up hope of ever finding it, eh? (ME/CFS patient, 16 years and counting - thankful that if I have NOTHING else I have Jesus and thankful that He's there for everyone else too. He's just a prayer away for those who want to Him).
I thank you ever dearly. Since diagnosed in 1985 , it has been long standing by family & friends to have a hint of understanding. This format gives so much hope for today. We have had to live moment to moment till this info is brought. Into the Light of Day. With deep gratitude ever..tw. God bless!
You and me both got diagnosed with this in 1985/88. When the famous incline village outbreak occured. I have been reading every study written all these years and have my own published. What a ride this has been, from telling me to seek psychological help to all in my head in the begining. I have listened to this doctor for years, waiting for him and others to give us a cause or cure. Getting old now, best years my life gone. Good luck to you.
Dr, please tell us what anecdotal treatments are available, people are suffering and any relief is beneficial.
Someone, please, educate my local MD.
In the 10 minutes appointment (called "dubble time" appointment) she was laughing me out when I talked to her of "leaky gut". Her reaction was: "If that was the case, you would be dead by now". 🙄
I do not ask of any service from her & other MDs, anymore. That was some years ago...
Sad to say: #SelfEducation brought me more insights than all the years spending my time with MDs & "Specialists"
Julia another dope of a doctor
Julia
Fire your dr and find a functional medicine dr.
The way they ridicule patients and myslef is why I research and ridicule them. They say they are there to help but the arrogance is too much to listen to. They intentionally try to dismiss you. Just keep on them and the regulatory boards. If they are being dismmissive take it to a regulatory board, file a complaint and stand your ground. All of mine were the exacr same. They are so tired of me pointing out their ignorance with data to their superiors they have come in line now. Ask them about their views on statins and the damage then show them yhe fda warnings. Tell them they are better educating themselves instead of ridiculing patients seeking help. Once you get some honesty from them, by educating them, they will tell you that they really do not know all that much. Stanford has just had a breakthrough on understanding myalgic encephalomyelitis which doctors have ridiculed since the thirties. I would be more than happy to work with a doctor but will not be dismissed or ridiculed. I only point out where their views are completely out of touch. I believe they are taught to retain control of the situation for trust. If they only realized of they listened and worked with us we would trust them. Trust is earned and they have not eaned it. I ridicule them with data. That shuts them up pretty quick.
That's because they don't give a shit.
Me too
Hi. This is a helpful overview. Thank you for your work! I am a severe MECFS patient and have been for 20 yrs (ranging back and forth in severity but always within what would be considered severe, currently bordering on very severe). Like another patient who commented below, my pain response is not always typical of MECFS but bounces around in extremes as do things like my reflexive nervous system response (which can be completely shut down for no response, shut down on one side of the body and high on the other, way out of proportion on both sides of the body, or regular). Currently my pain is high and my reflex response normal. More puzzling than that, I had a basic blood test for cytokines twice in the last several years, and they were normal. This despite the severity of my symptoms and the regular inflammation of the brain stem. However, I have heard that the cytokine flare only happens at the onset of illness (the first three years). Is this true? Or is the basic cytokine blood test not covering the cytokines that are of interest to this study? I think you mentioned 15-50 different cytokines being tested and doing so via the spinal fluid? I’ve also seen interest in cortisol treatment lately bc of a theory that we have low cortisol after initial high cortisol. While it is true that I had off the charts high cortisol a couple of years before my sudden onset mecfs began, I have normal cortisol levels today. ETA: I suppose my questions are partially answered by the Q&A time where you say the biomarkers are not diagnostic bc they are not universally abnormal nor universally normal in healthy controls.
I am a person with ME/CFS
Thank you Dr. Komaroff and thank you Solve ME!
Excellent information...thank you. I’ve been suffering for years.
Thank you; will watch, ME/CFS patient.
Thank you very very much for this presentation!
I was treated for C Pneumonia and I feel a lot better
thank you!
Thankyou really interesting I've had it years my DR called it ME / Condition I was diagnosed 2 years ago in UK there's no treatment whatsoever unfortunately
This is a great overview. We hope that, as research advances, medical schools will provide information in required courses--at least enough to acquaint med students with the basics. Until this happens, patients will continue to encounter doctors who are not able to make a diagnosis, are disinclined to do so (because it remains a "diagnosis of exclusion"), who confuse the disease w/fibromyalgia, or who prefer to see it as a form of depression. This creates distrust among patients. Even those w/a diagnosis may find that the non-diagnosing doctor does not accept an established diagnosis. People who have this experience will often retreat from standard medicine and seek alternative medical approaches. Sometimes this is helpful. Other times it is not. And the patient, spends whatever he can afford--to no avail. So let's please start w/education--even if we still lack the desired science!
It would be fantastic to post a link to an electronic copy of those slides, and a (machine readable) list of all the papers quoted? Would make it much easier to do further reading.
e.g. the 4 papers about metabolic pathway defects mentioned at +32:19 are:
Naviaux RK, et al. PNAS 2016;113;E5472-80. www.pnas.org/content/113/37/E5472
Fluge O, et al. JCI Insight 2016;1;e89376. www.ncbi.nlm.nih.gov/pmc/articles/PMC5161229/
Yamano E, et al. Sci Rep 2016;6;34990. www.ncbi.nlm.nih.gov/pmc/articles/PMC5057083/
Germain A, et al. Mol BioSysyt 2017;13: 371-379. www.ncbi.nlm.nih.gov/pmc/articles/PMC5365380/
Nick Smith THANK YOU!
good stuff! thanks again! #millionsmissing
I CANNOT BELIEVE THAT SO LITTLE HAS BEEN DONE RESEARCH WISE SINCE I GOT IT IN 1982. It’s ruined my life.
In attendance doesn't make sense unless: 1) I heard incorrectly, or 2) people could select more than one choice.
Results:
80% people with ME/CFS
18% caregivers of loved ones
6% researchers (yeh!)
10% clinician or health provider
2% other
Curious to know what "exercise" was used for this or these studies? Cardio? Stationary or not? Why type of exercise?
Thank you so much for this informative presentation! One thing missing was the significance of historically documented clusters and epidemics of ME (and possibly the same disease with different names "the disease of a thousand names"). Could you cover this aspect in a future presentation, i.e. how documented clusters may be explained by current research?
Lo Kee wow, I didn’t know that. Could you suggest to me what I would search for on Google to find that information? Thank you.
Medical Oncologist and ME patient !
and do you have any clue about the cause..?
seauf No one really knows, there até many suspects, my opinion us that everything start as a injury to the body, usually an infection.
We don't know what makes the disease becomes Chronicle.
hm getting my brain checked out again soon, mý guess is an under-the-radar and partly anearobe bug settling there, so we agree ;)
I wonder what is happening with me?? I have had this for over 2 decades.. yet.. I have the opposite with the "pain thing" I feel very little pain, in fact, when I broke my ankle in 3 places a few years ago I thought it was only dislocated.. didn't even have ONE painkiller.. 6 hours later xray showed the damage and I had to have steel rod and screws put in
Sharon Hagan
It’s not bone pain, it’s in the muscles. Do some strenuous exercise, push yourself hard. You should feel it. Observe how long it takes you to recover.
Many do not have pain..ita fatigue and brain.the fibro people were at all CFS events in herds. They had the numbers and voice. All written is MS/ CFS and fibro.. its all about them their pain..we are different diseases. Am.published..worked in advocacy...group in 8 countries..ill 40 years.
ME-patient in Sweden.
Dr. Peter Rowe M.D. finds POTS and other interesting facrors as part of the overall issues too. Look for his presentarions here on YT and compare how many of their points coincide as well as other test result answers. Interesting stuff.
Thanks for the update! I’m a ME patient and medically retired RN. I’ll participate in any research I can!
I have had ME/CFS for 32 years. My Internist knew what I had the minute I told him my symptoms. Was at career and work on8M building and had to walk away from it permanently at age 50. Now 82 and was so happy to hear of all the research that has been going on. Thank you.
@@beverlycrawford7859 wow u got it when u were 50. I got mine when I was 25 and that was 28 years ago. I hope I don't catch the corona virus. It was a bad flu that started my ME. I am mostly recovered now for the last 13 years however.
Please explain what did you do to recover. Thanks in advance
@@mihaelesov8043 I haven’t recovered. Just one day at a time
these people know shit. Facts are what we want, not what the government tells you to say!!!
if LPS is a big problem in ME/CFS, could CHITOSAN not help to naturally bind to them and excrete them in the stool instead of using cholestyramine ?
So many things wrong - what the hell is going on?
The cause for me was the microwave oven. This may sound unbelievable: the internet states that the use is harmless or that the danger is cancer or a reduction in vitamins.
The first consequences were: pain in the neck, fatigue, sore throat, depression, .....
After 3 months without a microwave oven these symptoms disappeared.
Consequences are greater the closer the microwave oven is to you: if the oven is right next to your dining table, for example.
If you bring this to your members' attention, those who wish can give it a try and let you know about their experiences. Everyone can now participate in the study!
People will not think much of CFS. Organs are not damaged. It looks more like an internal strangulation.
I don't know if that can be found. The muscles tense under the influence of microwaves (microwave), Hence the pain and the intestines are too tense, which makes digestion poor and too few vitamins are absorbed. In the throat one has pain due to the tensioning of the muscles there. Be careful not to cure other diseases with fatigue for CFS.
Reverse engineer vaccinations especially flu vaccinations.
if vaccines cause hyper sensitization of the immune system, then LDN could help to put it back to a normal working immune system ?
Brain may be cause of symptoms but what is cause of disease?
My injury was caused from an adverse drug reaction from Rituximab infusion. I have approached it as a toxic injury. I have gained significantly, still a lomg way to go but what a difference. Simple approaches and leaving the drug pushing doctors is how I started to improve.
I have off the charts Epstein-Barre virus antibodies. Used to hardly ever get a cold but now seems like anything conning down the pike I'll get. Also bug bites recently caused a flare of fatigue and brain inflammation. Took 3 mos to subside.
What's causing it is probably fluoride in toothpaste diffusing from the oral mucosa into the brain, every day, disrupting enzymes.
We evolved with fluoride, but not with swishing a high concentrate of it, for 4 minutes every day, in very close proximity to the brain.
Also, this is most likely the one thing researchers haven't looked at, given all the controversy/career danger surrounding it.
Always feels like it is 3 a.m. and that I am wearing a fat suit.
@28:00 So we get to feel like crap for years and then die early too?! 🤬🤬🤬
We need a cure!
Why should that work?
Can't find a single doctor in the Chicago or Milwaukee area that knows anything about ME/CFS.
I have no where to go for help. All doctors and specialists I've seen don't believe it's real. 😢
My first doctors appointment was back in 2007 but it wasn’t until 2016 that I was actually diagnosed with this. I was on the severe side for a couple years, where I wouldn’t have been able to even type this and they still had no idea what was wrong with me. Print out the CDC or NIH information and take it to your next doctors appointment or look for a new one. Even with the diagnosis my doctor can’t really do anything. It can feel pretty helpless at times but you must fight for yourself. Watching videos and learning the latest from the few experts out there, just like we are now. 🙂 Good luck to you.
Carriedaway when I bring it up to my current doctors and specialists they don't believe it exists or say, "if you had it you wouldn't be able to talk or walk."
I tried showing them information about diagnosis and symptoms but they don't take me seriously.
Leonard Jason is a professor in Chicago, he doesn't treat that I know of but perhaps he can refer you?
seauf Thank you so much for the information! 😊
anytime ;)
Thought he would have more to say. He has been studying this since late 1980s (look him up) he is in or near 80 now I have been following his studies for 40 years and he still has no cause or cure. I have had since middle 1980 myself. Pretty depressing that this is it. Good luck to all.
I asked my gp for my natural killer cell to be checked and she told me she didn't know how to do it and suggested that I did not look sick enough . U.K. are so far behind . 🙄
Fire her
The machine isn't expensive but the test is a pain in the ass. So its not typically used in a clinical setting. Ask her if the lab has a bd flow cyclometer. If they do, and the lab tech has the experience, they can do the test. Even if your doc doesn't know what it is.
Lorraine! WE DONT LOOK SICK ENOUGH!!! 😥😥😥😥
a GP is basically a symptom checker with a basic knowledge how the body works. They get paid a lot for asking you how you feel. LOL. My cfs cleared up 13 years ago after 15 years.
@@sunseeker2009 how did it clear up ? out of the blue ?