Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]
ฝัง
- เผยแพร่เมื่อ 5 มิ.ย. 2024
- Professor Tate has a daughter who suffers from ME/CFS. As an award winning biomedical researcher, and close family member of a sufferer, Warren provides an invaluable perspective on the illness.
Professor Warren Tate is a biomedical researcher at the University of Otago. He was awarded New Zealand's highest scientific honour, the Rutherford medal, for his outstanding achievements in molecular biology and molecular neuroscience.
Keywords: Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Post-viral fatigue
This man’s daughter is fortunate to have so much support and a WITNESS to her illness. Too many of us are alone with CFS , with little or no support and no one to see and validate our daily struggles. Thus we are believed even less, diagnosed with depression due to our “single status”.
Penelope Lambson Praying for you!
Or friends & family bail 😕
Yep, very sad to be single with this illness. Also it makes it worse on those days/weeks when you would need a helping hand in your daily survival.
Yes this young lady was extremely fortunate to being a position where she had someone who could witness it and cared for her and validated her and then more so acknowledged her. It's such an unbearable horrific condition and as you get older it doesn't get easier. My family doesn't live in the same state as I do and they really have no clue they know I've had this for a long time but what I have they don't know and do they really care to know. Come from a very stressed out type a type family it would be very difficult for me to explain it and it's been too difficult to be around them so I'm alone I live alone it's isolating. I've seen a few things that look like I'd like to try them I just don't have the strength and support to go out and get these treatments.. anyway I'm 66 and I thought I'd be over this. God bless to all you people out there wherever You are I have empathy and compassion and love for all you folks!!
Ya. My family just says I'm a lazy low life. So I just isolate now
I just hate when someone tells me I can work. They don't even see me day after day,when i can't even do the most simple of household tasks, if any.
It is very upsetting, people don't understand the effects of this syndrom. My daughter has it and thank God it didn't take long for us to figure out what she has. People around here thought don't get it.
LDN never helped me. CFS does not get more attention and research funding, because direct death does not result. ME/CFS is a living death. A nightmare.
It's a lot like having cancer, though you know deep down you're never going to die from it. You just have to deal with the pain and fatigue, everyday until you become stronger from it.
Per Ardua ad Astra Unfortunately, it can cause death. The average age of death for people who die of ME complications is 45. Because they are just now doing research on the most severe patients they are learning just how horrific this illness is. Of course not everyone with ME dies from it but it definitely can kill. I think they now believe it's a 10% fatality rate but as they do more and more research, I'm pretty sure the rate will get higher
Ur absolutely right took the words right out of my mouth. Vitamen b and myers iv cocktail r wastes of time. Nes health is a scam!
I call it a silent thief, it steals your health and hope while leaving you near alive. Such a rotten thing that surely climbed out of the gates of hell. Hang in there show it who boss. Don't listen to its lies. Try and find one small thing everyday to be thankful for.
@@AlyciaC what do people die of lack of nutrition with not been able to make food etc
Indeed! Where's the curiosity? I was setting the world on fire before this shut me down.
I developed ME/CFS last year due to COVID. It makes me sad that people have known this for so many years and still refused to listen. I genuinely thought I was listening to a video made very recently.
I've had it 26 years they have known for decades do you have hypomobility check out rccx gene theory pain is my worst symptom
Its 2018 and I'm watching this video. Sadly nothing has changed, and Ive been told a number of times that I should see a psychiatrist. There is nothing more I want than to be able to be active again. I still manage to work, albeit mostly from home (bed), so I can't understand why I would fake an illness - there is no advantage to me whatsoever. I'm isolated, lonely and can't even go for walks any more, let alone go to competitions with my horses any more.
You are not alone. My wife is fighting this and I got into it with her FEMALE family care physician with her bullshit remarks about it being in being mental. Idiots. I will fight for her and for all of you to get to an answer. You need to just be strong and I fully understand because you hear this all the time. God bless!
@@AB-he3bx God bless you too.
Prayers for you, God bless you. You are speaking for many others! 💙 Never loose faith!
Yes it's insulting in 1988 when contracted was told get my hair done or have my husband take me to dinner. One said seek psychiatric counseling.
So I became one to help those with chronic illness.
Took ten years half time in college to make it happen. Sorry to hear this is still going on in 2021.somw things never change people are stupid., Insensitive.
@@jewelleryaddict Well done, your determination to become a counsellor, studying through your illness for a decade, is remarkable. Your 'clients' must be so relieved to have someone to help against the ignorance and pain of other's often wilful misunderstanding. I know it too well. !7 years since I was diagnosed. Longer with the condition. Now 67 and so hopeless I could die.
CFS ME feels like God has turned away from me
It's a very debilitating illness.
God doesn’t turn away from us when we cry out to him. He’s the great shepherd, and leaves the 99 sheep to rescue the 1 😢
Keep trusting xx
@@carolebutt139well lost my mum to severe ms she did everything fir God before prayed daily and just got worse I've had this 26 years hasn't cured me either maybe it's the wring gid we support.
Same.
What a fantastic father
Praying for a cure!!!
If parents in the medical profession trying to help their daughter are also climbing this uphill battle. The rest of us are most certainly at a major disadvantage. I simply do not understand the politics of the medical system and the funding of disease research. How can this disease persist over decades and yet nobody has taken enough interest to even funds the research on such a debilitating disease?
At age 25 i got this disease , Ruining my career , I got depressed due to this.
Simple: because a patiënt cured, is a client lost.
This condition is far worse than a life long jail sentence.
I have all of the symptoms and the diagnosis. I am so sad this is happening to so many young people. Isolation is real. The book you read shows this illness effects every organ of the body. The doctor I have is rare. However, I could have a brain tumor and he will tell me the symptoms are Fibro/CHF. A real problem in my care.
I just stumbled upon your speech. Thank you for validating this disease. Something you said at the end made me remember that my mother always said that I never bounced back easily from viruses that I had during childhood. I had mono in high school that nearly put me out of commission. One other interesting fact is that when I fight a virus now, my regular pain gets better. It seems the whatever that is working on fighting the virus leaves my regular pain alone. Thank you for your hard work.
Same
It happens sometimes to me, that even though I can be feeling lousy from a virus, my general fatigue improves.
Anyone able to explain this? Thank you 🤸♂️ 🛌
@@carolebutt139yes the pain effects run by immune system I've found out why alot of us with thus illness have autism ADHD! Took me till 43 fof diagnosis type in autism ADHD CFS fybromyalgia connection
I also had Mono when I was in Highschool. My spleen was so enlarged I was put on strict bed rest for over two months and I missed over two months of school. NOW, years later, I am so tired of being sick and tired, I pray for GOD to get me out of this body. Fibromyalgia, CFS/ME, failed back surgery with titanium rods and screws holding my spine together from my bra line to the very bottom of my spine. So tired, in so much pain, every day is a fight just to get out of bed.OH, I forgot Diabetes.
@@breathless8075 do you have hypomobility
The story of his daughter is so much like me! Even the food allergies. Thank you so much.
Great Presentation. Please update us.
Dear Dr Tate, this is me also, I have had a lifetime of experiencing the same things that you all have. I know now that I had a predisposition, but my switch was flicked in with Glandular Fever, then continued to catch “viruses” for 2 decades and lived with much exhaustion and nervous breakdowns. Then later in a workplace back injury, spinal fusion, the other surgeries like hysterectomy etc, then discover I have thoracic outlet syndrome and was completely debilitated, had 4 decompression surgeries to come out of it in the most hypersensitive state it was hell….now have had 2 moderna vaccines and are back in a ME flare again……I can’t keep having vaccines for covid, I can’t fall any further down than I am now…
Please don’t have any more vaccines Jill. They are not good. Do your own research, you should find that every different brand has a different nasty affect. My boyfriend had a heart attack. Yes I am legitimate. He lived. I just hope he keeps living.
Never take those especially with this
You tos what were your symptoms it's part of this
I wonder whether in some people it’s an infection. I had something like this for 3 years and was continually declining in ability to the point where I became bedridden. My doctor put me on antidepressants and just continually increased them until I had serotonin syndrome. He didn’t believe me, nor listen to what was happening. I felt like a mental case, but also knew there was something really wrong. The symptoms were non-specific, every part of me was affected. Fortunately I developed early stage cervical cancer and had an infection in the uterus, that was life changing, because a gyno put me on 3 different forms of antibiotic for 7 weeks prior to surgeries. I had also told the gyno what I had been experiencing and he said he had a theory on this himself, and called it fibromyalgia, so I wonder whether the extensive and long course of antibiotics were maybe him experimenting with his theory. At week 4 on antibiotics I noticed I was able to get up and around again and do more day to day tasks, more energy and less pain. At week 5 a black, and puss blood stained discharge began to be released from the top of my sinuses and the dizziness went away. By week 6 my constant migraine had ceased. By week 7 on those antibiotics I had normal energy levels, which felt like super human energy because it had been so long since I had been able to even function.
Once I had the hysterectomy to remove the cancer I then weaned myself off those terrible antidepressants under the supervision of a better gp, and then I got fit and started growing all of my own food organically to get the maximum nutrient content possible, I’ve never looked back.
Sounds like you had Lyme ?
It's hard to understand what's happening to me. I'm 39 and it's gonna be hard to get on disability
I hope that you did get on the disability and doing better now!
Excellent......from the adversity of ME coming to his family's door,it gave Prof Tate the resolve which would be wonderful in every medic facing an ME patient.Speaking from the Dark Ages of the UK where the ludicrous psychiatric notion still persists,as in those days people were put in the stocks,sufferers I suspect could think of several medics they'd like to see in the stocks....a case of,if you inherit the world of the Dark Ages in medicine,you should suffer the comeuppance of that time.Good luck Prof Tate and better health for your daughter.X
So nice to hear your validation and support for your daughter and survivors in general.
Same..can I ask what kind of symptoms did you have?
I was dx'd FM 1995. I was involved in patient advocacy in the ACT ME/CFS & FM society for quite a few years and ran the Canberra website. I remember the name Roz Vallings ... I got back to work eventually but at a lower grade and as "a third of a person" ... Thank goodness I'm retired now and can stay in bed (which is where my body wants to be, despite what I'm missing). I'm not any better. And now I am getting arthritis ...
Same here. Now age setting in pushing 70 had since 1988. did my own support group at hospital for 23 yrs.have a study published in medical journal. So sad all this time and no cure no help.
@@jewelleryaddict
Hi there! Love your name, jewelry addict! I love jewelry also and I guess I buy it just to enjoy in bed! Ha! I was diagnosed with fibromyalgia over 20 years ago and I am 74 now. I feel so sad for young people who get it when they should be out, socializing, dating, getting married, and raising a Family! I guess I can count myself lucky because I was able to do that before my diagnosis! However, after working full-time for 27 years, I was hoping to do more in my retirement, like travel, etc. it is difficult to see and hear about my friends who can do that! Please take care. I needed to write to you, because I felt a connection!
@@susanturner139I've had it sunc 17 now it's fybromyalgia my worst symptom or muscle pain of CFS which I believe it is. Found out I have autism ADHD heds causation do you my father is 74 better now than 40 he had it 1989 19995 after virus though his glands still hurt at times.mune isn't my glands muscles seams it changes over decades
Thank you!
Do you think there is a link between Fibromyalga and CFE to MS?
This is a good question
I can so relate to your daughters story
Watching this in 2024. Nothing ever changes. They don't care about us.
God bless you.
A connection between Prof. Tate & colleagues and the Open Medicine Foundation/Dr. Ron Davis/Gordon Medical Research/Dr. Robert Naviaux Metabolomics study could be good.
How familiar are you of the outbreak at Lake Tahoe in the 1980's? If you aren't...please check out Exposing Mold & Erik Johnson who was the prototype for CFS in Lake Tahoe.
I have this illness. What he teaches is the only thing that actually truly helped me.
I would never wish this illness on anyone it's awful. I have no one. Your daughter is lucky she has you two.
I'm just like your daughter started at 19. In the military. I'm 34 now
Chronic pain anonymous-very helpful
I would like to help with the research
Graded exercise made me MUCH worse for a few weeks I felt like death...then i noticed i could do a little more and a little more. I started to have stamina I hadnt had in years i could even drink coffee and work part time in small amounts and feel OK the next morning it was amazing. As soon as I stopped the daily exercise for a few weeks I went back to extreme exhaustion. Brain retraining is also working for me...but my body has been stuck in fight or flight mode for years. Im doing something called a stella ganglion block soon many have said this resets this nervous system feedback loop and can allow you to heal.
Which brain retraining u doing?
@@youknowtherules8888 The lightning process . Im doing it daily and it's helping. The gupta therapy....lighting process, reverse therapy ect all work on the same thing , chronic stuck sympathetic nervous system. It briefly trains the body to come out of that ...over time it allows the body to rest and recover longer periods of time like a normal body does and not crash.
Best wishes for continued success with the treatment! 🙏
Is the injection safe have you got pain all over or in certain places
The number 1 thing doctors are missing for M.E/CFS recovery! on youtube think of emdr, fishoil, magnesium, melatonine, vetgetables and fruits on a daily base, take care
21:00 anyone know what this book is titled and the author? Tried to look it up online but no luck finding it
It's called Chronic Fatigue Syndrome M.E. by Dr Rosamund Vallings
Was lyme disease ruled out by western blot to identify antibodies specific for borrellia burgdorferi or other tick borne illnesses?
You've got a point there. Unless there is a puncture in the spine,.borrelia cannot be ruled out. The blod results for borrelia and Mononucleosis are very similar. Once borrelia is ruled out, and people are mononucleosis free, ME/CFS starts
@@MariaM-fu6wmI found borelia with bioresonance..
@@stellaancimer8505 Wow! When was that done? My daughter wasbwringfully treated for borrelia at the hospital until we got the initial results (which the hospital neglected to provide for three weeks) and they came back few y from borrelia, but showed mono instead.
Does anyone know the book he mentioned at 13-ish minutes?
It’s Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management by Dr Rosamund Vallings!
Shame about the funding issue. Good idea. Mitochondria don’t utilise oxygen as efficiently to produce atp in neurones of stroke patients, causing neurofatigue.
you dont have to use the oven. When the microgolf-oven is there he sends waves day and nigt also when not in use
If 50 more dr,s kids would get Cfs they were outdoors be working none stop on this.
Sad
Right after epstein barr I have all the papers
Please distinguish between ME (G93.3) and CFS (R53.82) since they're not the same thing.
DossierME they are a bit different in that on is considered post viral however when you look up the codes the definition is word for word the same.
@@lorinewcomb4717 ME is a disease, CFS a research label for unexplained fatigue and malaise. The difference can hardly be bigger.
We have enough to deal with without having someone in a clinical way split hairs. Unless you are helping our community and living with our illness you have no right to speak to and about us. If you look up our community and actually learn about ME/CFS you could be more informed.
@@lorinewcomb4717 No thanks. Go troll somewhere else, we're fed up with fakes jumping on our every comment. Goodbye.
@@JohnBedson This is not true. ME is the same disease all over the world. CFS criteria are up to the researcher, but are unrelated to any actual disease including ME. Please read www.hfme.org/
Test Me lol
Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwave-oven(magnetron).To stop you have to eliminate the oven out of the house.The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor.The distance between an oven and a person is very important.After a 2 weeks without microwaves health becomes better.(total recovery=2months).The victims are more sensible and also the distance between victim and oven is important.(Also possible: nightmares, change of character)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 less radiation is allowed by law.BEANTWOORDEN
Lol. Wrong.
You are a serious whack-job!
Thank you!
Thank you!