Caring for someone with severe ME/CFS

[reddolphin65]

ME is not CFS - Check out AHummingbirdsGuide to learn the differences. They are two distinctly different illnesses that have been lumped together.

[essy111]

I recommend a really great book out there called THE JOURNEY THROUGH ME/CHRONIC FATIGUE by Janet Hurrell. Its an ATO Z packed with great information on Amazen Auther House publishing

[835283]

I had a roommate in the mental hospital I was in 2009. He had the disease M.E and the psychiatrists forced heavy anti-psychotic drugs on him without his consent and he had no choice but to take them. They made him so much worse it was HORRENDOUS watching him suffer from what the psychiatrists were doing to him, I am only 22 and have witnessed the worst of the worst, they gave me a medication which I had to take and it made me throw up for 3 months giving me M.E as it destroyed my immune system.

[835283]

I had a friend who was my roommate in the mental hospital I was in. I got ME from a medication they gave me that made me throw up for 3 months in there and said I had to take it. Anyway about my friend he had M.E and was sectioned and they gave him drugs without his consent and he had no choice but to take them. He got so much worse from the anti-psychotic drugs they were forcing onto him, I will never forget him and what the psychiatrists did to him, that memory is with me for life!

[nz1ify]

Life with CFS is a never ending bloody story that never lets up. I am 22 I have had M.E for 1 year now my life is ruined I can't even get a job if I go for a 15 minute walk I end up in bed for days to recover. I get people telling me to harden up I get people who say it is all in my head, I get people who say I just have depression, NEVER ENDING FUCKING STORY!!!!!!!!! I may as well dig myself a grave now and be done with this!!!!

[jujujoyseeker]

Greg-- i have a 21 year old son with this. :( God bless you--am watching all your videos. The doctors here have no clue on what to do, and I have decided it's time for us to be more proactive in seeking answers.

[priyaluce]

thank you for keeping your heart open, when it's so easy to shut down in your position. sending you a big hug.

[LuvTeal1]

You are a wonderful man, Greg. This is a good release for you. You don't have

to be there, but you remain. I cried listening to you, for I lost my sociopathic husband to an affair with a woman & abuse that gave me PTSD for ten years. I'm certain that you cannot imagine Linda having to leave you because you had no empathy for her? By now, after 35 years with M.E., now severe M.E. with Congestive Heart Failure, I'm alone & fear that I have little time remaining. God is with you both.

[dutchieu]

I've been looking for you as I have kept up with your wife's situation from the start but lost you! I also have M.E. =NO LIFE, ALONE and wish the Lord would just take me because I don't believe in taking of my life. I did not give it to myself so I cannot take it.

[gregcrowhurst]

@dutchieu God bless you dutchieu. The Lord is with you right now , He holds you in all your suffering, He will bring you through. You are not alone. God knows it is so hard to carry on often. ME destroys lives, yet it is still not taken seriously. Sufferers are left to just get on with it. No wonder you feel like this. Let the Lord hold you now dutchieu, let Him lift you into His love and fill you with His power. He will bring you safely through this . Greg

[dawnten]

@dutchieu You have taken the words right out of my mouth dear dutchieu. Bless you sweetie. I do feel your pain and hopelessness and say the exact same prayer to God each and every day. Do you have family? I do not and am alone save for one friend I am trying to save the money to move there. ((hugs)) xo

[luminescentfeeling]

Greg your videos are so good, and you're unique not only in life - but on youtube.

Thanks for making this and being so incredibly open and honest.

[feckedupmummy]

I'm lucky compared to your wife.

I only have moderate m.e...thats the 1st time I've ever said only in relation to my illness!

Its a struggle day to day, I'm registered disabled, my husband is my carer but he has terrible arthritis too. I'm only 24 and he's 32, we have 2 children aged 12 weeks and 2 years and its so hard not to be able to play with the kids or even keep the house nice myself! I've went from doing manual labour jobs at 70+hours a week to getting tired out washing clothes!

xxEVxx

[nese67]

You are a good man,God Bless You Both!

[xjadeclaridgex]

this made me cry, i havn't got it, but a very good friend of mine has it and has anyone got any advise that i can help her?

[RuthsFather]

That was hard to watch. I have been dealing with CFS for 8 years. It is easy to know the facts of it all, but so hard to understand, or to accept. The pain is worse more on some days than others. Depression is a huge factor. Losing my job was the hardest part. After that, it was hard to go on. My wife helps me, but it is just as hard on her. She loses out as much as I do. Pain. Sickness. Loss of freedom. Year after year.

[antares4141]

Mold and CFS symptoms are directly related to each other. You can prove this to yourself by going to walmart buying a $37 dome shaped 9x7 tent,(no stakes needed, nylon very low on VOC'S) setting it up in your bedroom and putting a medium to large size hepa filter in it. Don't come out without a respirator designed for asbestos and mold abatement EVER,For about a week anyways. I know I am not the only one with this condition. PLEASE TRY IT AND CONFIRM IT FOR YOURSELF WHAT YOU ARE UP AGAINST!

[poppymoone]

ME is NOT i repeat NOT phycological... I had encephalitis when I was 13 this caused my body to become auto immune... causing ME... its neurological not phsycological and I cannot be cured.. I have good and bad days... but I wil never get well until there is proper research to admit its REAL and not in the mind but neurological.

[fortunmakr]

I will try anything- I've had it for 28 years-

every little thing I try that helps has helped me get a decent quality of life back

[tcherry70]

hi, what are the little things that have helped you, so far i have found nothing to help? wud love to no anything that helps you.. i no u posted this a yr ago but i am so hoping that u see my reply.. thankyou

[mesufferer]

The lightning process is a form of psychotherapy and cannot cure neurological ME. I am glad that it helps people, but it is an expensive therapy which is closely guarded and that alone makes me very suspicious. If the 'inventor' had really come up with a cure they should give everyone the 'secret' but you won't find any specifics on their website.

I can't stand the lightning process. I want real research, not new age psychotherapy repackaged.

[coopercityhomeforsal]

You have right to be angry,overwhelmed,to want to walk away, to feel the need to walk away for your own sanity but you don't. You and your wife are amazing. Take the well needed brakes. Recharge your batteries. Have a friend or family fill in for a day or two. YOU TOO NEED SUPPORT. You both inspire me. My love goes out to you both. I am you, you are me and together we push forward. If we stop fighting we admit defeat and change will never come in benefits, research, Dr's opionions or a cure. xox

[aleinXinsect]

you suffer in Jesus and with Jesus just rememer that

[mrskaykins]

now you're just being silly.

[eutuve]

My life has been a nightmare since 1984 due to Cfs

jesus is a myth for dumb people

Be he damned if I am suffering IN him

fuck you and him !!

[tcherry70]

and how will remembering this help us to be able to be a normal mum/dad to play wiv our children, to not suffer in the deepest of meanings.. if you truly knew how it was for all of us, you would not have posted such an unfeeling comment

[Bluebottle83]

Thank you so much both of you for continuing to share your experience and wisdom when you look so exhausted Greg and you are so very ill Linda. I have been in the unrelenting living hell & pain of severe M.E. for 20 years & my loving husband has had a breakdown trying to cope.

Until a scientific test is developed for this there will always be people claiming to be cured by talking and other psychological based therapies who most probably never had M.E. in the first place.

Love to you both x

[matbubbles123]

This is as wonderful video, I was severely ill with M.E for a year and I was cured by the lightning process! I have recommended it to many people I know with the misunderstood nightmare of M.E! Please go on it and be cured! Just type it into google, it is so amazing, it gave me my life back! It will cure you!!!

[gregcrowhurst]

It is wonderful you found healing and thank you for your good wishes. Linda has been severely ill for 15 years, with a mass of neurological raging symptoms. The prognosis for anyone this ill for more than 4 years is extremely poor. With the utmost respect, ME is a serious neurological disease, and is not cured by any process of motivational thought changing.

Greg

[matbubbles123]

Just to say some people have been cured on the lightning process that have been ill for thirty years. Its more than motivational thought changing, it is using the brain to heal the body by changing neuron pathways. It really worked for me, I am just trying to spread the word because I have some idea of how hard it is. Best wishes, I will continue to pray for you both.However whatever the future holds I wish you every happiness, stay strong and well done for posting this amazing video. God Bless.

[vincent4500]

ME is a complex chronic 'syndrome'.. i had the severest form of ME since 20-21 until about 32-ish..there will never be a simple cure..but i understand it's complexities & dynamics of it as a syndrome, (constellation of other disorders).. i realised it would take an exceptional ingenuity and fight to beat this.."experience is the greatest teacher" and i truly think i understand it better than practically anyone you'll meet, if you want my wisdom as to how i chipped my way of this hell let me know

[souleeze]

please look into "mms" by jim humble

projectgreenlife(dot)com\jimsm­ms

take out spaces

[fortunmakr]

Thanks- i will look it up!

[EutuveX]

@matbubbles123

lighting my arse ! If it were true, how come the heath institutions have not adopted it to get rid of us, the crazies " who have all in our heads " ?

Thank you and fuck your light !

[radarme2]

God Bless you and thank you so much for doing this video. I have suffered over 20 years and was married when I first became ill. My husband at the time was first scared to death he would catch it and then suffered guilt from not being able to help. Ultimately he left as to not have to deal with it. For me it was easier not having to pretend I felt better then I really did or wasting what energy I had trying to look good for him. I hope you find other caretakers to support you.

[momofcfs]

I'm praying for you and Linda. As the mother of a 21 year old daughter, suffering since the age of 16, I can empathize with your situation. Stay strong, know you're not alone, and thank you for giving your voice to this cause. Praying for a cure and the strength to live with the pain, for all.

[victorian246]

I have Fibromyalgia ! Thank you so much for making the video diary . People really need to know whats this does to a person . All the best to you both !!

[FalseRecall]

My husband cared for me for 3 1/2 years when I was bedridden with ME. I know I was such a bitch to him because I just couldn't adapt. Suddenly I got better- I don't know why - I think this illness runs through cycles. We got our life back but I think we're both a bit more flexible in what we expect from now on.

Take care of each other

[daisyvon]

Thank you

[memotherof4]

best wishes

[zenstudent37]

Greg, As a guy who has suffered from M.E. for 11 years I have total empathy for not only your patner, but you to. Have faith. Although the both of you may well despair know that others feel for you and recovery is possible.

[custardyhayles]

Thankyou.. I'm 18 years old and have been suffering for years now. Let's help raise awareness of this evil monster

[jacqui39]

Greg, just did a note but it must have been longer than 500, then tried to delete some and lost it. So sorry about your partner, keep up the good work and take care of yourself,

Regards, Jacqui, 20yrs of ME

[darudes]

Thankyou

[cathiedee]

You describe it SO well. I have M.E/CFS ... I used to be bedbound and unable to feed myself. Now I'm in Uni doing a degree. People DO get better. You may feel helpless to help her sometimes, but just being there and understanding means so much. (The drug Seroxat helped me enormously ... it's had a bad rep in the media, but it changed my life.)

[tcherry70]

hi cathiedee... not sure if u will get this, but i was wondering as it is three yrs on, how you are now?? wot was the bad media on seroxat? been a sufferer of fms/cfs/m.e since i was in my early 20s im 39now.. i dont thnk i no of anyone who had it for so many yrs and recovered , how llong did u suffer wiv this? pls add me on face book.. trudy dillaway. i wud love to hear ur story or anyone else who can hlp mex