The biggest problem with ME/CFS is the lack of funding into research. Robert Naviaux is doing great work with his cell danger response hypothesis and could find real treatment for us, but he said that he spends 90% of his time trying to find funding and only 10% on actual research. Funding for ME/CFS needs to be on par with all other major diseases - HIV/MS/Parkinsons/etc...
Cheers for the Video! Sorry for butting in, I would love your opinion. Have you thought about - Dinanlinson Rebooting Health Approach (do a google search)? It is an awesome exclusive guide for getting rid of chronic fatigue syndrome without the normal expense. Ive heard some extraordinary things about it and my close friend Aubrey got astronomical results with it.
I've had me/cfs fibro for 12 years now . I got it after having glandular fever . It strips you of your pride , dignity , independence and so much more . I have tried everything to get better . For the first 7/8 years I kept working listening to people telling me to push on through , don't lie down to it . I had no guidance from doctors . Now I'm a shadow of the person I once was . I don't work anymore I spend most of my time by myself not because I want to because I have to . I never see friends . I've lost a lot through this disease . I'm also going through divorce at present . I can't thank Jennifer Brea enough for making this film I'm sure it will make a huge difference . Also Dr Shepherd .. His work with me/cfs is amazing . We need more doctors like him . I've tried so much to make people aware of this horrendous disease . I've contacted BBC .. ITV .. Scottish government doctors that do research up in Dundee university where the do a lot of research . Thank you Jennifer and Dr shepherd .
Upvote for empathy and support to you, Lorraine. Thank goodness we are in a time where researchers and doctors are catching on more and more. I think social media, oddly enough, has possibly helped accelerate this. I have no idea, maybe interest and research may have accelerated anyway.
Good luck dear Lorraine! Hang in there, you truly are worth it. If anything else fails, train your mind into thinking, no: knowing that, although your body isn't, YOU still are okay! Biggest hug
Suffering too month 4. I noticed when outdoors im less fatigued and more fatigued standing . But i noticed when i take a product called Immune Stay by Xtend life i feel slightly better. Ubiquinol CoQ10 too. I hope this helps
One of the best parts of this interview, in my opinion, is toward the end when Dr. Shepherd is discussing diagnosis. Everyone says that ME/CFS cannot be formally diagnosed with tests, and perhaps that's right. But Dr. Shepherd describes very well the patient who presents with classic ME/CFS systems. He articulates them beautifully -- one, two, three, four, five, six. He lays it out clearly and says THAT patient should be diagnosed with ME/CFS. Maybe the patient's physician doesn't know how to treat it, but the criteria for diagnosis ARE clear. That alone will help with the "legitimacy" of the disease.
I have been disabled now 10 years from CFS & Fibro. The movie Unrest was like watching myself in so many of those in the movie suffering. Thank you Jennifer Brea!!!! I pray this great movie brings awareness, contributes to greater research & funding along with a finding to the link that so many of us have but cannot be found today.
Christine Messaros. Recommended viewing > a short video (What is true cellular detox and cellular detoxification DR Dan pompa). A wise quote > fix the cell to get well. What is important regarding disease reversal is (cellular health).. Alot of people don't know about the said mentioned. Thought it was worth mentioning.
Thank you Jennifer Brea. I first came down with CFS in 1982 and have been living with it ever since. It is very hard to describe to people, and it was great for me to ask my loved ones to please watch Unrest.
👏💯 Especially since 2020 when such cases or similar have at least doubled. I am now part of the chronically ill club with little diagnoses or help. Thus far I likely have one disease that I cannot find a doctor to help with in 4 years, and another that is written off by the medical community because there is so little understanding of it and no one told me I have it. I had to find it in my test results and was shocked. It is unconscionable.
@@Karuna221 diagnosed 27 years then neurosthenia diagnosis then pots now it's more fybromyalgia are you hypermobile? Found out I have autism ADHD causation after a trigger😊 father has CFS to but better than myself at 75
@@Truerealism747 I'm so sorry. I'm not hypermobile but feel I'm a good candidate for EDS though no doc has mentioned it. Fibromyalgia gets thrown around as well as MCTD in my records. They can't decide. "Likely dysautonomia" with no help (definite POTS symptoms) and self-diagnosed Tarlov Cyst Disease as I have "hemangiomas" all throuhout my spine on the nerve roots. It's rare to have them and 95% are found in the sacrum yet I have them everywhere else. Docs dismiss them and I'm symptomatic. It's hard to not give up hope. I wish you all the best. 🙏💗
Thank you Jennifer and Charles Shepherd for speaking out . It’s been incredibly tough living with this illness. It’s also been terribly painful to not be believed let alone given support or empathy . I dream of a treatment . I lost so much life due to this illness .
Something I haven't seen mentioned. Every textbook on orthomolecular medicine, and many medical descriptions of ME have said "alcohol intolerance" is a symptom of ME/CFS. What that means is, if I drink even one beer or wine or two shots of liquor, I feel, within 30 min, that I have been run over by a truck. My body bursts into pain as if into flame. I walk stiffly if I can walk at all and I end up lying in bed wishing I was dead. Notice that's one or two drinks. You won't find any alcoholics among ME/CFS patients. It hurts too much.
A sub group of ME patients respond very well to alcohol. They feel like almost all symptoms vanishes. The research group at Haukeland are aware at this, and they are doing analysis' at the lab. Check out Phoenix Rising forums for more.
A Google User there are dozens and dozens of M.E symptoms, so there's never enough time to talk about them all. There's such a huge list of symptoms that everyone with M.E is affected so differently from each other. I think that's why it's so hard to find a cause too. I have alcohol intolerance too. I do have a couple of drinks occasionally, but I pay for it the next day. Sometimes it's worth it, just to feel 'normal' for a while, if that makes sense?
Jan Hansen Someone once postulated that this was due to a sluggish liver. After alcohol, your liver 'wakes up' and works harder for a while, which may make you feel better in the short term. I'm not sure how true that is.
To me that sounds not plausible at all. Some have said that it could be due to dilation of the vessels, or the fact that some PWME can utilise etanol from alcohol, but not glucose for energy.
Jan Hansen Those theories make sense too. Maybe they're different things though. PwME often complain of feeling poisoned, and a heavy toxic burden on the body would put strain on the liver. The effect I was talking about takes place the next day (when people should be hungover), but the effect you're describing would seem to be pretty much instantaneous? I've never met a pwME who felt better *while* drinking, but many who feel better the next day. But everyone's different, of course.
Fantastic interview I think as a start and really nice to see Dr Charles with Jennifer Brea together , thanks so much for this magnanimous effort , I'm so grateful personally thanks
I have CFS and POTS as well. I fight through every single day praying that one day I’ll miraculously get better. Doctors know nothing about it and they’ve given me no treatment. I am done pretending to be a normal functioning working adult. I am disabled by this illness, period.
It looks like this thing starts after an infection which clears from most people as they recover. But with ME/CFS patients, the infection changes something with the immune system for good. I admire Jennifer Brea for being outspoken about this condition.
The biggest problem is actually that you have to pull yourself together on a good day to even see a doctor. They never see you when it's the worst! Only when it's best, in comparison. Actually there is only the way of filming to make others see you at your worst.
It's interesting that I have read so many differences from people with it here, and am able to make new links than I have been given information by any doctor including a world known ME doctor. Still parts of it are being kept secretive from us. I am also glad to see references from people here that there are different 'versions' of this illness, which is what I have been saying for years. I also am angered as to why 'professionals' do not listen to me when I am the one experiencing it. It is such a complex illness, very few will be able to grasp. Each day is stopping yourself thinking about being dead is better, and having to silently deal with it. I'm lucky I am so strong minded but I feel empathy so much with those who are not.
Ich glaube viele dieser Behandlungen kannst du machen wenn du viel Geld hast. Leider gibt es viele ME /CFS Patienten die am Existenzminimum leben, da hat man keine solche Möglichkeiten. Aber es ist schön zu sehen das es ihr besser geht.🙏😊
Amen, I also learned this after being born again of Jesus' Holy Spirit! I Immediately felt amazingly better after 10 years of being bedridden. Demonic oppression is real. Stay close to the Lord Jesus Christ, don't open doors, and don't have fellowship with unbelievers. We can't lift them up (other than sharing the Gospel), but their demons will torment us and drag us down. The Bible says have nothing to do with unbelievers. For what has darkness to do with the Light? Put on the full armour of God daily. Msy God Bless you and keep you. ✝️🙏💖
I was 34. I believe my illness (ME/CFS) started after the 3 part series of Hep B Vaccines, after exposure to blood, as a RN. I had not had a flu. But another possible factor was a pesticide that was being heavily sprayed in the apartment complex where I lived. It was when Dursban was being used, but once I found out about that, this apartment manager said, "We are under new management and we do not have that information." Meaning, who was doing the spraying, and what they were using, they weren't going to tell me. I called every pesticide company around and NONE OF THEM would admit to having the contract for that place. So did they do it themselves? It smelled like black pepper. This info is just for those who care to know how I got it. These are my theories. For 11 years, I was told I had "Conversion Disorder," like Jen Brea, then just stress, depression, and then bipolar disorder type 2. Even though I was never manic, I would be "OK" in the morning, go to class (as I could not be a nurse anymore and tried going back to school), go home and crash, get up feeling somewhat better, then crash by bedtime. So that's why my psychiatrist said it was bipolar type 2. Ridiculous! She finally admitted that they didn't KNOW WHAT WAS WRONG WITH ME, THEY HAD TO PUT SOMETHING ON PAPER SO THE INSURANCE WOULD PAY. Well, at least she was honest. Finally. In 2001, I moved to Birmingham, AL, where there was a brand new CFS clinic, and the doctor said after a 45 min. talk and 15 min exam, that it was his opinion that I had ME, and Fibromyalgia. And I have to tell you this, I was crying out to the Lord saying, WHAT IS WRONG WITH ME? I FEEL LIKE I'M DYING OF BONE CANCER. AND I CLEARLY GOT THIS THOUGHT IN MY HEAD: GO LOOK UP THE EPSTEIN BARR VIRUS ON YOUR COMPUTER. I knew it was the Lord, Jesus. But I went inside, and got distracted, and actually forgot. That's how bad my memory is and was, even back then. I went to church two days later, for Wednesday night service and went to the altar for a healing, hopefully. But no one came to lay hands on me. And I heard it again: GO HOME AND LOOK UP THE EPSTEIN BARR VIRUS ON YOUR COMPUTER! (more firmly). So I nearly ran out of there, and got on my computer, and found that Epstein Barr, at that time, was thought to be the cause of CFS, then a link took me to info on ME, and I had the symptoms more for that, and then (long story) the Lord led me to this new clinic, which wasn't there long, and didn't stay long either. The treatments were not insurance approved. So I guess not many could afford it. One was IV vitamins, and IV hydrogen peroxide. There are videos on here about using medical grade hydrogen peroxide, which I just learned about, and will be getting some any day now. Maybe it will help. God bless each and every one of you with this, or who works with this, or takes care of someone with this!
I have very serious autoimmune issues that my doctors have been unable to diagnose. I also noticed that in all her interviews, Jennifer is always sitting Indian style. I have always done that, it's the only way I can sit comfortably. I cannot bare for me feet to touch the floor, but it's not something I have ever noticed or been concerned about. Now I'm wondering if there is a connection there!
Has anyone done a survey to ask if these patients have ever been given a Fluoroquinolone antibiotic BEFORE their chronic fatigue syndrome? Antibiotics like Cipro and Levoquin are commonly given for simple urinary tract and sinus infection to otherwise healthy, young, active people. These people suddenly or even months later experience symptoms of chronic fatigue, joint pain, tendon tears, nerve pain, disability, and neurological disorder and autoimmune disorders! These symptoms seem to appear out of the blue because patients and doctors don't connect the dots!
I always say my symptoms started during and because of my not so merry pregnancy, due to Hyperemesis Gravidarum (I just feel there is a link there!). But right before I got pregnant I got my first urinary tract infection. During pregnancy I also had a severe one and after that I had tons. Treated with.... Bingo, antibiotics! So you have a point there. Also I developed PDS with many bowel troubles, and Epstein Barr virus was detected in my body.
The name ME was already being used in the 50s, CFS was first used in 1988, if I'm correct. I was diagnosed with ME in 1992 and back then it was just ME. The name CFS became more popular later on and ME is often called CFS now, while there is actually a difference between the two. If MrApplewine meant that, he is correct. CFS is a syndrome, a collection of similar symptoms whereas ME is a specific disease process. ME is seen as the more severe one and for years ME patients have not been happy with it being called CFS, mostly because the diagnostic criteria for CFS are quite different. ME patients fear the mix-up leads to the downplay of their illness. There are now calls for ME/CFS to be renamed to SEID: Systemic Exertion Intolerance Disease. A new name AND a proposal for 1 list of diagnostic criteria which would focus on the central symptoms.
dimsel I’m afraid that you are wrong. The illness is actually most well known by both of those names; so M.E./CFS. There is also no difference between the two. We do not know what is the cause of the illness, and the two names simply come from different people at different times. CFS is a non-scientific name for the illness and ME relates to inflammation of the brain and spinal cord, which was thought to be the cause of the pain experienced by patients but has NOT been proven. ME is not seen as the more severe one, the illness is categorised into three severities: mild, moderate (which most people have) and severe (which 25% of ME/CFS patients have), but these are not affected by what you want to call it. As the cause of the illness is not proven, it could be possible that there are different underlying causes for patients, and so different diseases under the umbrella name ME/CFS. But again, this has not been proven. There are also theories that there could be a genetic element to the illness, like a trigger switch. Which is activated when a person experiences trauma, such as surgery, infection or another illness causing strain on the body (such as endometriosis). I believe there is so be a study on Me/CFS in the next few years here in the uk, and I amongst others are hopeful that it will help ahead some light on the condition. CFS has much more stigma attached to it due to the “Yuppie flu” epidemic that became such a big thing in the mid 80’s, and therefore a lot of patients choose to use ME, or ME/CFS to avoid this stigma - it’s bad enough that people don’t understand it as it is without them thinking that you’re lying about it as well!
Mr Applewine and Dimsel are most definitely correct. There is a difference between Chronic Fatigue Syndrome and M.E. with M.E. being seen as the more debilitating one. A C.F.S. and M.E. comparison chart www.hfme.org/comparisonchart.htm However, the two are just muddled up now and M.E./C.F.S. is now indeed an umbrella term.
The more difficult one is Fibromyalgia vs. Myalgic Encephalomyelitis. Even with Fibromyalgia I would say that the myalgia is not the only symptom, but that there are other immune and neurological symptoms such as paresthesias as well as brain fog, fatigue. I know some people say M.E. is different than fibromyalgia in that it is caused by an enterovirus or something like that. However I think perhaps these two diseases could be grouped together. I know the non-profit Bateman Horne center/clinic for example is dedicated to ME/CFS and Fibromyalgia all together. This is probably because any of these terms may be used to describe it. Also, there is a report and article online that I found saying the Bateman Horne Center treated somebody successfully for something like ME that was also Diabetes insipidus and used Desmopressin and the person recovered. I find that very interesting because I know when I press on these muscle pains and hold I feel the urge to drink water and a thirst sensation. I keep coming back to the hypothalamus, NMDA receptors, nitric oxide, ATP, and maybe a virus. However I can also hypothesize that perhaps a dysfunctional homeostasis has been achieved between systems and the system merely needs to be nudged back into the original more function homeostatic position. Similarly to how a joint can become dislocated. There maybe be sub-optimal hemeostatis positions in relation to the systems of the body which will be sustained after a provoking event and they will remain there until a way is made to push them back into the original homeostatic position. This is of course just one of countless hypothesis. However I do wonder if desmopressin could do that if the hypothalamus is in such a state. I'm not aware of if homeostatic dislocation is a known form of disease in medicine or if examples exist where the body will resume normal function with an appropriate nudge back. Also, I notice there is a strange relation to dysfunction of Acetylcholine and I'm very sensitive to foods high in choline (eggs) or any foods containing Cholinesterase inhibitors such as potatoes or blue berries for example. I found a helpful website by a person named Anne R. Write. I will get very agitated, stimulated and have insomnia and only recently found that website after tracking it down to Acetylcholine related systems. One thing I'm going to try is d-ribose and Ubiquinone CoQ10 powder mixed with coconut oil. The coconut oil is just to allow absorption because coq10 is not water soluble. That should be synergistic. That may improve the ATP in the mitochondria giving more energy and/or less muscle pain.
blows my mind me only human as an old school neighborhood public Health service family doctor in the history of humanity figured out PREGNANCY is fatal to females sexually transmitted disease neuromuscular metastatic malignant cancer ... thank Mother Nature God the cures for pregnancy are already built in working perfectly miraculously no human intervention required once a 9-year-old is impregnated by her father! she is obligated to carry that child through Labor and delivery and forced to nervous that child until she falls over dead of malnutrition vitamin mineral depletion copper zinc selenium lithium magnesium iron postpartum depression anxiety Neurosis psychosis hallucinations complete neuromuscular collapse organ failure which is equal to that of shell shock battle fatigue combat stress ...
I have now a lot of balance coordination problems. I have been about to fall many times.l'm worried about😢 But there's nothing I'm afreid but a stick maybe!
