ME: What Hope? (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome CFS)
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- เผยแพร่เมื่อ 1 ต.ค. 2024
- My personal reflection on ME, a severe complex neurological illness affecting millions of people around the world, and hope. I gave this talk at the Speakers of Felixstowe meeting last night.
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Thanks for posting this. When I had ME, it was hard for me to articulate exactly how I felt (you know how it is -- your mind just plain won't work). You explain it in a way that I totally couldn't.
I have dealt with this illness since early 1980's with remissions and never being diagnosed often worked at 60% of normal. Had cervical surgeries. While recovering came down with flu virus and never recovered. That was july 4, 2005.. I pushed myself to work while sick for six months. When quit, became very ill, was running on adrenaline and just crashed. Have MRI factors that are consistant with M.E. I thought I would have remission. I think I have permanent CNS damage.
Thank you, Giles, for giving such a wonderful speech and sharing it with all of us. I appreciate all you do. Keep up the great work, and remember to take care of you. :)
Thank you! You have been a Voice for many. Like you I was very driven in my studies & future goals. My illness destroyed all that. I am so happy you are doing better now! You are a Ray of Light for many w/ severe protracted illness, suffering all the more in having a poorly understood underlying pathology. To those who say it's in our heads, I can only say: Look to history. Many diseases recognized today were once disregarded as psychosomatic. Keep fighting the good fight!
I found the same lessons learned too. So glad you’re a Christian. So when we get to heaven I will ask to meet you to joyfully thank you. Right now I can barely use one finger to type this message but we will dance as siblings in heaven and beyond the galaxies.
Thank you so much for your videos. My name is Cathy and I am still looking for a good doctor. My old neurologist laughed at me when I asked if it could be ME. I was diagnosed with Epstein Barr Virus 2yrs. ago. I was also diagnosed with fibromyalgia and chronic Fatigue about 12yrs. ago. I have been extremely weak off and on for the past 2yrs. I have been very weak the last month and it's not getting better. I put some of your videos on facebook for all my friends. Thank you!
Stephen Dobrzyn sounds exactly like my story. Bless you Cathy! I’m on Facebook as Crystal Ann Kinsley if you want an extra person on your team
thanks. finally found a naturopathic doctor. she is figuring this out. i have lyme and babesia from a tick. i've probably had it for 25 years. when my symptoms started. i have an abundance of systemic yeast. adrenals are poor, depressed. stomach SIga is 46, should be at least 400. small intestines inflamed. and a handful of other levels that are off. just started treatment with natural stuff to kick yeast first. won't really have hope until i start feeling better. if i do.
had thyroid removed, suspicious nodules. doctors not treating me properly for the thyroid and having ME, well not sure my body is going to survive this. or my mind. i hate waking up everyday after only 1-4 hours sleep. for 3 years now my life has been hell. my hope is gone and i'm not getting the help i need from doctors or family or friends. i'm basically alone and dying. no one believes me, they think it's just depression. sad to think i may be dead soon. body is depleted, no fight left.
Excellect video. I used to 'have a wonderful life,' too. I am now in the 6th yr of being bedridden, had to diagnose myself (was a hospital nurse), but have 3 supportive doctors, 2 of which have no clue what ME is. The 3rd only knows minimal. (Welcome to Hawai'i, land of denial). Psalm 83:18?
Thank you Giles - another excellent speech to help people to understand.
We al have the same story to tell!
Sorry to hear you've been ill so long. I guess it can give us opportunities to become more wise... but you would have thought that after all this time, I would have learnt how to be more patient too!!! I would always trust the Bible more than some people who mis-use it for their own purposes. But there are genuine Christians too (and we're still not perfect, by any means!!) who seek to follow the Jesus of the Bible.
@shoshiplatypus Thank you Shoshi, you're so right, most of the so-called church seems to have lost the ability of discernment, and it's easy to get swept into the teaching and famous "preachers" who seem to keep quoting the Bible but without the truth of what it means, or who say "peace, peace" when there is no peace... I guess most of us are more affected than we think, by existentialism, individualism, and materialism, hence the popularity of "kingdom now" ideas, -instead of what Jesus taught.
@Afrikitty Thank you for your words. It is heartbreaking when Christians (and people who call themselves Christians) can say the most hurtful things. I do believe God is faithful, but people who expect promises of "perfect health" or "prosperity" in this world don't seem to understand the same gospel of the Bible that I see. Suffering is not "judgement" or "lack of faith", but we can trust God for what we have but don't see, and for what we don't have yet but is promised.
@Afrikitty Oh, I so agree with you!!! One of the major concerns in the true church today is at the general level of Scriptural illiteracy in the church and beyond. The unsaved world at least has something of an excuse ("how shall they hear without a preacher?") but within the church it is inexcusable, and worse still for the leaders to have so abandoned the Word of God. Yes, it hurts when people say stuff like this, but I hang onto Jesus and His Word!!!
Part 3 - ... sickness is something we may not be able to avoid, but we can choose to use it for good - to build character, patience and hope, to bring us closer to God as we depend on Him more, and to give us increased compassion for our fellow man in his suffering. Visit Joni Earekson Tada's website and read her articles about life as a quadriplegic for a mature Christian's approach to suffering!
Mayu the Lord bless you in your continued work on all our behalf.
Shoshi
Part 2 - ... that much of the modern church is overly preoccupied with physical healing, which puts tremendous burdens on those who do not get well despite prayer, faith, etc. It reflects badly on those who pray for them and they find that hard to deal with, so tend to apportion blame on the sick person. The Bible teaches that we live in a fallen, flawed world, and that suffering is inevitable until Jesus returns and restores all things to an Edenic state. In the meantime... Cont.
@Afrikitty Oh, I sooo identify with this. Of all the "well-meaners" who make inane comments about my M.E., my fellow-Christians have consistently been the worst. I had a man pray over me once, asking the Lord to cure me of my "sickness of the soul" ("all in my head!!!"). I've been told I had a demon, and someone else told me I was ill because I was harbouring unforgiveness in my heart. Most of the Christians who are understanding are the ones who are, or have been, ill in some way themselves.
2.
In the 25 years that I have dealt with M.E., I have had people say the unkindest things to me. "You don't have enough faith to be healed!" I am sure you have heard them all. On THIS website I have had a "Christian" woman blurb out all my medical information all over the place - a woman I once loved as my own daughter. May God have mercy on her.
The Lord Jesus Christ said:
"All that the Father giveth me shall come to me; AND HIM THAT COMETH TO ME I WILL IN NO WISE CAST OUT." - John 6:37
Giles,
There is a Scripture in Job that says: "But the eyes of the wicked will fail,
And there will be no escape for them; and their hope is to breathe their last." - Job 11:20.
This is a tragedy for those who have M.E. and do not stand on the promises of the Lord Jesus Christ. They have no hope in this world and no hope in the next. Most often it is they who take their lives and in the process jump from the frying pan, into the fire. I am glad to hear you preach the peace of Christ.
cont...
@SheWhoFeels Thank you, you're right, it's absolutely *not* all in our heads, or imagined, or even exaggerated. I do believe that emotional factors can be just a part of the trigger in some but not all cases, but that doesn't change the fact that there are real physiological things going wrong in our bodies which are serious, horrible and disabling. All the best to you :)
@ChronicFatigueSyn Thanks, I loved it there!! (And what use has the Engineering degree and all that study been to me?!!! :p ) I played violin, not regularly, but occasionally in a couple of orchestras and at church sometimes - now playing violin is something I haven't got back to at all... yet! ;)
@Aparajita1008 Thank you - I still sometimes find it too horrible to think about how ill I have been... and to think of millions of others suffering :(
Thank you. I have been seriously ill for years. The diagnosis includes ME/FM and Lupus plus spinal damage from a severe rear end car crash. I have become a wiser person. Though when symptoms flare I can become a bit critical. Your words strike such a true chord. I've read the Bible a couple of times - from front to back - like a book. It is unfortunate that so many "Bible thumpers" "use" this book against the people they profess to want to help. One particular book I found most helpful is calle
@TheLibra2767 Thank you, yes that sounds great! Let me know all about it when you're close to launching it!
Brilliant vid of you talking raising awareness of #MECFS need more people like you. I am launching an internet radio station new year and one of the main reasons is it to raise funds for various charities,including #MECFS maybe you'd like to interview about #MECFS would be great to have you on. ;)
Some of the comments made to me over the years :
“ What are you getting from making yourself imagine that you are sick?”
“ You are such a drama queen”
“ You look fine. Just stop telling yourself you’re sick.”
“ You are just adopting symptoms by doing all this research about illnesses.”
“ you are a fake. Shame on you. “
“ Quit whining. Everyone gets tired.”
“ pull yourself up by the boot straps and do something with your life.”
“ Get busy in service to others and you’ll be blessed to feel better.”
“ Just get over yourself.”
As if it weren’t hard enough being sick.....
I have never known anyone who has had ME for only a couple of years & gotten well. I know people, myself included who have enjoyed (really enjoyed!😊) significant if typically partial remissions, but eventually along comes the relapse, which I think is worse, in particular emotionally, than onset. You're reminded, more painfully, of what has been lost. I can usually manage to be grateful for the gifts of those months or years of semi-reprieve, but not always, especially as age puts icing on the ME cake.
Possibly a link...I had chronic fatigue first...then hashimoto's with my existing chronic fatigue. I think it is stress related
Iv just read some shocking stuff about simmon wessley,hes done alot of damage and now I read he wants Drs to perscribe Lithium as well.
Thanks Giles for your continuing awareness raising. Great talk and great video once again. Well done. Keep on with the good work.
Part 1 - Thank you once again, Giles, for your straightforward, honest approach to M.E. You should be on the BBC at peak viewing times, spreading this message that the medical profession and ordinary people need to hear - and the media too, who are responsible for propagating much misinformation about our condition and making it harder for our families to understand the truth.
As a fellow-Christian, I go along 100% with what you said at the end of your talk. I am concerned, however... Cont.
This sounds like me...I also have hashimoto's
Great videos. You mentioned emotional well being and the hypothalamus on one of your videos, have you tried Mickel therapy or the Gupta program? I have been ill for 8 months now, and was upto 85% recovered, but had a relapse, and I am now worse than ever, I believe my illness was caused purely by stress at work, and I have just started Mickel Therapy - I will let you know how I get on
Boazman Cox how are you these days
I feel for you, please try to stay strong Thomas
@finette4444 Thank you! :)
@anrive89 Thank you :)
Are you in remission?
thank you giles : )
Rev, 21;3-5
Thank you, and sorry to hear you are so ill now, it's devastating, isn't it? Still hoping for better understanding about the disease and any ways to treat it. Of course I'll share anything I know! Glad you have some support from docs. I have heard of some people with ME actually feeling better in (some parts of) Hawaii when they have gone there.
Thank you for posting this...
Thank you Sally. I appreciate your thoughts.