How does Myalgic Encephalomyelitis affect my life?

[andeed888]

God Bless you! I have the same horrible disease. We need to rally together and het some help and healthcare, especially in America!

[mahmoods]

So sorry sor you..I developed various complaints almost 7 yrs ago.I was happy,healthy and worked full time until I was hit by I did'nt know what.I was'nt diagnosed until just over 2 yrs ago,with ME. Like you say my life,my world have been turned up-side-down by ME.I am a shell of the person I once was.ME is crippling,the mind as well as your body and spirit,and people just dont understand.I am in the UK,and at the moment I am having to fight the dept of work & pensions,they want me to work !!!

[AHummingbirdsGuide]

@mahmoods I'm so so sorry to hear that. As if we wouldn't LOVE to work if we could...I dream of one day being able to pay tax, that would be so wonderful! Best of luck making the Govt see sense in your case, and soon. Forcing you to jump throygh hoops only makes you sicker and need the pension even LONGER...if they only knew.

[properprim]

really good vid your symptoms are similar to mine so i empathise

[george05032010]

sorry if i sound like an idiot but, what are the symptoms of when u become ill? is it just extreme fatigue?

[AHummingbirdsGuide]

@george05032010 It is actually NOT severe fatigue at all. Severe fatigue is essential to a misdiagnosis of 'CFS' but ME is a neurological disease that also affects the heart. Fatigue is one possible minor but non-essential symptom. Early symptoms often include severe problems maintaining an upright posture, huge changes to the brain and the ability to think...it feels like having had a stroke often, there are also problems with dealing with hot and cold temperatures. Lots of neuro symptoms.

[AHummingbirdsGuide]

@AHummingbirdsGuide For more info see hfme.org

[george05032010]

What meds are you taking? cheers

[AHummingbirdsGuide]

@george05032010 see the 'Treating ME' section on the HFME site!

[tomtom21194]

continued... even though my case is not incredibly severe it did leave me bed bound for around 2 months, it also lead to me passing out if i did slightly too much. The thought that ME could keep returning throughout my life terrifies me and the lack of support for ME/ CFS sufferers angers me.

[tomtom21194]

I've just turned 16, i first had ME when i was 13 years old it took me over a year to recover and i went back into school and began to be 'normal' again. Last summer i came down with it again; i was devestated! ive been off school and unable to see many of my friends for 6 months now :( im slowly recovering but its a very long and hard process, made worse as there is no treatment for this condition even though it effects out lives so dramatically!

[NatashaJane15]

(cont) the chances of me having ME for the rest of my life are high even though im young. but im not gonna let it be a burden or ruin my life im just gonna carry on and be happy because bad stuff happens and you just have to confront it and carry on.

[NatashaJane15]

I became ill in november 2009, and the symptoms i have at first looked like kidney problems but thn i had a scan and they didnt find out they then realised that i had the symptoms of ME. i was 14 and i was ill over my 15 bday. im not bed or wheelchair bound, but i have to be carefull as i do no no when i will become badly ill with it and i have an appointment with a pedoatriction soon. im also at school part time, but has not affected my GCSE's, though ME has caused me to louse friends, (cont)

[moonwitch1981]

As i said in previous post I have had myalgic encephalomyelitis and Fibromyalgia since I was 13, and the one thing that has always kept me going even when i'm bed bound, wheel chair bound, is to always look on the bright side of life, everyday I always look for some thing I am happy with really really simple things and it as always helped keep my spirits up, Surround yourself as much as posible with postive it dont take the illness awys but it do make you feel Loads better.

[moonwitch1981]

I also have myalgic encephalomyelitis (ME) ,plus other illness fibromyalgia, pcos, meniers disease, ibs and acide reflux disease.

Some times the illness can be very hard to live with I am 28 now and have had it since i have been 11years old.

But Persoaly I have also managed to carve a life for myself, I am unable to work but take great pleasure in caring for my nieces and nephews, card craft for charitie ,writing short stories (might take me a while),

[Aintgotmine]

Why have you not been able to make phone calls, even short calls? You didn't say why you're not able to do this or other things ...... ??

Is it that holding the phone will use your energy? Is it that you can't cope dealing with communication / social skills anymore?

Sorry for sounding rude, just would like to know .....

[AHummingbirdsGuide]

Holding the phone is no problem at all and I have social skills galore, no problems there, I would talk all day if well enough:)

The problem is the core problem of M.E. as explained all over the site etc. That ME causes severe limits with how much you can think, and handle sensory input such as noise.

Talking on the phone requires a high level of cardiac output...which my body just cannot supply. So the reason is cardiac insufficiency in fact.

[AHummingbirdsGuide]

Every thought thought, every word spoken requires the heart to work harder, and mine can't any more than it is.

I can only do things which require only a very low level of cardiac output such a s a luttle TV watching, modified painting and computer time and so on. Talking on the phone is like a level 8 task, while I can only do those things that are about a level 3 or less.

I can sometiems force self to do more demanding things for short periods, but is not worth it.

[AHummingbirdsGuide]

(Please read my comments in opposite order!)

Last time I used the phone, I was 10/10 ill, just hell, couldn't have company at all and it lasted 2 weeks, uust from one hour phone call.

Hope that answered your q, it wasn't rude at all:)

[FreeBritain1]

M.E. has been a fantastic blessing to my life. It has humbled me and I've come to meet and appreciate the poor, the weak, the disabled and the elderly in whom Christ shines like a great beacon.

I've developed my life skills, my management skills. I have found yet again that my spirit which is Christ's alive in me to be unbreakable. I have developed great courage and great insight.

I am utterly thankful.

Everything taken in service is replaced by great gifts. Lean on God!

[AHummingbirdsGuide]

CFS is a bogus fatigue syndrome, a diagnosis of exclusion. ME is a distinct neuro disease similar to MS, which occurs in outbtreaks and is very disabling or fatal. For more info please see the HFME homepage!!

[neil1758]

i thought cfs is the same condition, you said in your video that it was different, i hope one day there is treatement.

[AHummingbirdsGuide]

Me too. Actually there is treatment and even cures for many of the things misdiagnosed as CFS, sadly many don't get it as they are told they have 'CFS' instead of being given a correct diagnosis. ME and CFS could not be more different, chalk and cheese. Sadly a very small amount of ME info is printed under name CFS which confuses many, but 99.999% of CFS nonsense is not about ME or any distinct disease.

[FreeBritain1]

We with M.E., over 240,000 in the UK are very afraid right now, as both the media and the gvmnt are constantly attacking the disabled and sick, with a view to robbing us of the little we have. Many are on the brink and there will be many more suicides. Those of us who can, with our very limited ability, trying to protect the most sick who cannot stand and speak for themselves, are worn out fighting now. We must pray. Please pray for our protection. Christ is with 'us'. Thank you. God bless x

[firnonaP]

I know it was difficult for you to put this together - thank you so much for sharing your story.

[lucrene1112]

I have the same thing from a large brain tumor removal. It's in my memory, and I'm forgetting , It is scary

[scianamblo1]

do you have to become paralyzed in any way to have this disorder ?

[FreeBritain1]

I think that paralysis is a much more accurate description than 'fatigue'. It's trying to overcome the paralysis that is likely to be the tiring factor. God bless x

[AHummingbirdsGuide]

Tiring emotionally, dealing with so much disability and so many limitations, for sure! For many of us a sort of seizure state, and tachycardia...ANTI-fatigue, are what makes the illness so hellish however. They make it so hard to be restful and so hard to sleep, and just make you feel so ill. Would swap all that for tiredness any day!

[AHummingbirdsGuide]

yes and no. Muscle weakness is essential, a certain type of it, yes. BUT this may be experienced as cardiac insufficiency causing cognitive probs, neuro probs and so on, rather than actual paralysis. The muscle weakness affects all muscles including, the brain and the heart you see. See HFME site for more info!

[moonwitch1981]

@scianamblo1 Just speaking from my side, as i have ME and fibromyalia I haven been confined to a wheelchair for months at a time, because my legs and back become to painfull and "heavy" to move, when i'm not in the wheel chair i get about on my two walking sticks which i have done for the last 16years since i was 13, So to your qustion yes you can become paralzed with this illness, but your arms are also greatly effect too.

[Aeryn87]

I can relate to what u have said, I am also an m.e sufferer and am in the severe stages.

Take care x

[Jansbin]

Thankyou very much for your video and especially your web site. As a carer for my husband who has severe M E I agree that there is a total COVER UP. Why is nothing being done to research into this severe illness; with epidemics worldwide , millions of sufferers who lose their existence. I hope the answer is not just money!! To anyone out there suffering , I wish you all the best and I will try and do all I can with others to get this disease given the rightful acceptance it should have.

[GBCTwo]

This whole thing seems like a mess. Firstly there is the very real possibility that this has been used as a "dustbin diagnosis" (check one of Jodi's other videos for that), exacerbated by there not being any one single recognised test. Secondly, and I've fallen foul of this many times, the M.E. "community" often doesn't do themselves any favours. I've had posts banned on lists and when I was recording a video about the NICE JR, a number of people ignored my appeals. Not even a "no thanks".

[AHummingbirdsGuide]

Agreed:) BUT of course there are recognised tests for ME, and far more than just one!

There are of course no tests for 'CFS.'

But for ME we have brain scans, NK cells tests, tests for POTS and so much more. It can be tested fgor with a series of tests with no more difficulty, medically, than MS!

[GBCTwo]

I should have clarified myself. Diagnosis is, quite often, through process of elimination; Everything else is tested for but not *M.E.*. I still can't go into a surgery and have one universally acknowledged test for it. As a result, there is the real possibility that, as you've pointed out before, there is a dustbin (waste basket) diagnosis.

[AHummingbirdsGuide]

Yeah, 'CFS' is a huge wastebasket all right!:)

[AHummingbirdsGuide]

Sorry, I knew I had misunderstood your comment GBC! Know u know ME has tests!

[donaghec]

Thank you for sharing your story. I admire your strong will.

[100blades]

i am only a kid but i was diagnosed with M.E when i was around 3 years old. i am now 13 and i searched for this video to find out how other people have coped with it. my sister used to be paralyzed and used to be in a weelchair. she can now walk atleast but still has this ilness. also i miss alot of school so i have to be home educated and i missed 3 years of primary school. but this video helps to know that its not just me and my sister who understands how bad this is.

[ShowalterdontlikeME]

Excellent video. Thank you especially for making the point about abuse from family members. The concept of CFS Oxford Criteria might as well have been designed to cause abuse of M.E. patients. The Wesselyian School of Thought have never accepted responsibilty for this "side effect," although it was clearly predicable.

[crmfghtr]

I was a top cop in my state, now Im nothing, this thing has destroyed me completely. No hope

[AHummingbirdsGuide]

Hey, thanks P! Merry Xmas to you too, hope yours was as nice as mine turned out to be!:):) And a happy and much better new year to you too P:) And to all MEites!

[PhoenixShield77]

You can find out more by looking up M.E on google or Wikipedia. I need youre help to uncover the real truth so that we can help educate the ones who are suffering with this syndrome and fight for the right for a cure. Any feedback or comments are appreciated

[AHummingbirdsGuide]

Actually, while CFS is merely a syndrome, ME is a distinct testable disease!:) It is a myth ME is just a syndrome!

[AHummingbirdsGuide]

Also, Wikipredia nd Go9ogel are terrible sources of info on ME! Esp Wikipedia, its been taken over by those supporting vested interests did u know Phoenixshield? Love your passsion and fire tho!

[PhoenixShield77]

Thank you for youre feedback AhummingbirdsGuide. Youre site on M.E is absolutely terrific. It has helped me tremendously. Merry Xmas!!

[PhoenixShield77]

Is this a huge COVERUP by the government? Why have they not funded research for a cure until supposedly now? Its evident that CFS has a negative stigma on the inflicted sufferer of a serious illness, and not a made up one. Doctors dont believe it exists, or are they actually told NOT TO. Without funded research backed by the government it seems to me they are keeping the diagnosed and the public mislead and and in the dark.

[vincent4500]

They funded a £10 million psychiatric investigation into how to cure ME with a psychiatric approach in the UK, based on the convenient assumption ME is psychological..yet not one pound has been put into studying it's physical components, that is because by defining it as 'psychiatric' they can just say its in your head and don't have to put any effort into treating you, plus they inevitably line the pockets of the pharmas by prescribing anti-d's to us as neurotics..they abandon then exploit us!

[AHummingbirdsGuide]

'Is this a huge COVERUP by the government?' YES, it is. CFS does not describe or label a serious disease though, it's a made up syndrome, that is the whole point!

[PhoenixShield77]

Why are doctors diagnosing patients with CFS or Fibromyalgia when it actually is

M.E (Myalgic Encephalomyelitis). Why have the medical organization come up

with a new name (CFS) (CFIDS) years ago for an illness which already existed as M.E

[AHummingbirdsGuide]

While its true most MEites get misdiagnosed as 'CFS' it is NOT true that most of those told they ahve CFS have M.E. Those facts are very different! CFS is not ME!

[cernamacka]

Thank you for sharing. So many suffer in silence while the CDC continues to silence our existence.

The 8 year decline in health, the guilt, the sense of loss, the loneliness, the loss of ability and will to call a friend. The loss of self. My life is running parallel. In search of a means to find a way to accept my loss, and improve my problem, I found your page. All I ask now is if I could have the 40% back as I had something better. My true belief is time will heal. I'm waiting.

[Macmador]

I sympathise completely with you all. I have suffered from both M.E. AND Crohn's Disease since at least 1994, and they have claimed my job, my hobbies (I can hardly draw or read), my social life, and my mental health. Every day is one long nightmare of fluctuating energy, depressive fits, bowel pain and - most of all - the sheer anger and frustration of being denied a normal life, and of being passed over by the medical community.

[amazatbogadov]

Hang in there !

[amazatbogadov]

hang in there!i was the same, even worse. i am not for one second that i am ok, but the miracle did happen and i felt better after a very very long time.

[FynFlyte]

These symptoms are very similar to Post Polio Syndrome.

[AHummingbirdsGuide]

Yes, some real similarities there for sure, due in part no doubt to the fact both are enteoviral diseases. M.E. also has a handful of unique symptoms and pathology not seen in PPS as well of course, but yes, they are certainly similar in some ways!

[marilynmagnificent]

Thanks for this. I'm going to look at your website. Scared at the moment cos in the U.K. the government are apparently going to 'crack down' on people claiming sickness benefit. Could do without the stress.

[CillRos]

My M.E. was also made much worse by (wilful) medical ignorance. None of my symptoms have been investigated or treated, and I was and still am treated with hostility.

I want to thank you for your wonderful website.

[chronichell70]

Hey Jodi, you are amazing. I corresponded with you about 1year and a half ago, I went to recover to about 90%, but then I relapsed and I'm housebound/bedbound pretty much in the same place that you are. I'm 32, was training for a triathlon when I got sick. There is no worst disease than this. I think eventually M.E will take my life (by my own hands).

[CillRos]

Please don't give up.

[xxxsusserxxx]

Thanks JODI..So great to see you here on YOU TUBE. So hard to explain the truth to people about this illness..YEAH it is scary.

[angelsolace]

Thank you so much for posting this Jodi, you are so brave to post it, and it may not feel like it, but you do make a difference in this world. Your website is awesome, and you should be very proud. Sending you big hugs from one ME sufferer to another.

Amy xx

[amyhar]

Bless you Jodi hun. I too have ME and it's not as severe as your own experience but I really do undestand where you are coming from. I really hope that things do get easier for you. xx

[magdalene74]

Thank you... my ooh so loving doctor has "diagnosed" me with CFS because i have all nine symptoms he was told to look for ... nevermind the fact that i have a good nine more symptoms that put me squarely in the ME catagory... primarily because he has never heard of ME....and the fact that he cant be bothered to look at the cardiac findings done when i was on medicaid

[luminescentfeeling]

Well done for posting this Jodi. No doubt the 'CFS' fools are laughing at us both now they have done their CBT/GE. Hopefully there is a God and they will all burn in hell for hijacking our illness and ruining any chance we would have had of a life. Keep it up. x

[26mae1987]

hi, i have cfs/ME to and your stoy is so much like mine my friends want to come round and see me but i always cancel cause it makes me ill! and i love to draw but my wrist swell to much! i had to drop out of college it effects me so much, that ive also become anorexic! which also sucks! but you are coping so well your very strong x

[htael111]

Hi Jodi, Thank you so very much for sharing your terrible illness with us. I also suffer from CFIDS/M.E. I have been decimated by this too.

I appreciate your courage. I will pray for you.

Thanks, Hal

[Nemi133]

You are an amazing woman, Jodi! It is sad that so many resourceful human beings are bedbound and housebound due to M.E.

I've said to myself: "Imagine what we could do if/when we get well, or even better." You manage to do it regardless! :)

Thank you for your many contributions to our cause!

All the best,

Rachel

[lordrisingham]

I wish the entire medical community would take a look at your videos and website. Thank you, I wish you the best, and stay brave.

[vivianaheck1]

Well done for being so eloquent and informative about M.E. and thanks for putting the energy into doing the video. You are a beautiful young woman and I pray that your health with improve soon.

Fellow M.E. sufferer

[H4NDCRAFTED]

Thanks for sharing. It all sounds too familiar by far. I used to have serious problems being able to concentrate enough to speak to people.

I can manage about 40 mins of intense convo now.

I wish you well.

'you look well though' thats a joke btw ;)

[H4NDCRAFTED]

I was a happy 23 year old, busy well and then M.E.

I was happy even though I was ill, but it is the rubbish ignorant treatment I have had that is destroying my soul , not M.E.

It is very real as real as the flu as real the ground you walk on. I was well happy and for no other reason other than I got a virus..I got M.E.

What part of that does the medical profession not understand :eyesroll:

The professionals in the UK should be embarrassed about the way they deal with people with M.E .

[RAWRAMP1]

just found this site on M.E.C.F.S.brilliant,ive suffered with it over 20yrs now and would love to hear from fellow sufferers.pete

[aspTim]

You poor thing, I know what you feel like. I'm in bed most of the time myself.The only thing that has helped me has been a good doctor who prescribes me Methadone for the pain.. It seems that this illness has something to do with the chemicals in the brain, and I personally (Although I'm not a doctor) believe it's something to do with lack of the pain chemicals we normally have.. I hope you are ok and get more help than you are getting.. God bless you from the US.

Tim

[medsman101]

great stuff, jodi, stay brave

paul, liverpool , uk

[flenithganthry]

Ah Jodi! My heart breaks anew when I consider all of this... I am about to take on the "establishment" over the death of my husband who was killed by so called modern medical practices...different...but devastating still... you are such a brave bold person and your work is more valuable than anything you could have done... I just do still hope for you that small miracles happen...small ones are still goodies.

[kaazoom]

I relateto so much of what you say. I am fortunate because I still have some mobility. I know what you mean by talking on the phone, it is so difficult to maintain a conversation without visual ques, I lose track of what has been said, and find it a mental strain. Thank you for sharing your story.

Paul

[stillwaterguy04]

Unless it's an immediate family member, it makes me nervous to talk on the phone. I will procrastinate for days before making a business call. This disease impacts EVERYTHING

[DiamonDie]

Thanks for posting this video. I've been following your website for a few years. I'm not severely affected and I have a great doctor who treats me based on my own expertise, which so far has worked well. Sadly I can't even get on a paid sick leave because G93.3 just doesn't exist here, so the chances of getting on disability seem grim. My friend who's wheelchair-bound actually has PTSD from the abuse she's had to endure from the doctors.

[indemnis4]

I am listening. Kath

[dexhaven]

I agree totally Jodi. Many people are also neglected by the medical establishment. It is sad to see how money - and not human kindness - has changed healthcare. Thank you for your videos and excellent website. You are an inspiration.