The Realities of ME/CFS

[kjgumm]

I became sick in 1989 and was told I had Mononeucleosis (again) ,but was not diagnosed with CFS until 1990. I am 60 now, and heard of this "Synthetic" XMRV virus that was made in the 80s, and accidently got out... Luckily my doctor told me NEVER to donate blood. But how many have >>?? Who knows. My life ended when I was 38, I just didnt die. :-(

[kfrank1954]

Watching this video made me realize that my "feeling horrible" the past 4 weeks are just another sympton of the fibromyalgia I have had for 15 years. It's nice that someone can empathize and not say, "But you look just fine".

[kmrtn6]

very moving video and sums it up perfectly

[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!!!!

[JohnnyX1239]

I'm having this painful disease for years..I had it when I got 15...Now I'm 17and I still have it. It took away all my friends, my school career and my childhood. I would do anything to cure this awfui, dreadful disease. No human being should have to go through this hell...

[flyashx]

If you are at a diagnostic end I think you whoever you are owe it to yourself to look into medical cannabis. It melted my CFS away in seconds. I cried.

[judyrayem]

This has been a very bad week with CFS/FM for me. This video expressed my feelings so well. Sometimes we just don't want to keep on fighting, but we must.

[fogggygyrl]

To All: I will always monitor comments for my videos. I think it's a responsible thing to do considering the kinds of comments some people make at times especially when the video is about a controversial subject which happens to attract a lot of spam as well.

[eutuveCinema]

fogggy..thanks for the "pending approval " very soothing for my nerves !

[charmie0926]

ME and CFS are not the same - ME is a neurological disease - tho many of the signs and the symptoms do appear to be the same - the sad thing is so many doctors don't care to find out more about these illnesses

[Colvee09]

nice video and good information 

[FreeBritain1]

Disabled or sick? Problems with dwp or any public body or organisation?

The equalities and human rights commsion is collecting evidence. Please respond with your experience/s. This is very important.

[TheGlitteringHorses]

i hate it when i try to get up in the mornings and my dad tells me "for god sake just get up and go to school, stop faking it". |'ve had cerebral palsy all my life and now on top of that my M.E has made me wheelchair bound. I try to lift my legs and cant, they are now just dead weights due to muscle wasting, just because i am laughing and trying to be normal for my friends at school, doesnt mean i'm not battling every minute of the day. thank you for uploading this, now i have proof.. xx

[BondGirl070]

Reading these comments just wrenches my heart. So many of us are in this hellish existance and there's no way of escape. Some people have assistance and for those who don't... well, it just compounds the distress of your already broken world. Thank God we have the internet to connect with others. Check out my video's and follow me on facebook... M E Myalgic Encephalomyelitis. This offers another road of compassion and support. Hope this helps.

[eutuve]

A person suffering from CFS is understood ONLY by another "sufferer"....

It is still "all in your head" by friends, relatives ..and.."Doctors" !

Fuck me for having it ( since 1984 )

fuck the Sky

fuck the world around me !

I get no comfort knowing I am not alone..

I am alone !

Fuck me for not dying ..yet !!

[BondGirl070]

@eutuve Yes, we do battle alone. We have those days of asking, "WHY??!!" No, there is no comfort... and it's hard not to become angry and withdrawn. I understand. :(

[Ashapa1]

@eutuve I'm so sad of your situation , and the strangled situation that all the sufferers of this destructive disease deal with , every second of every single day.

The real sad thing is that even the ones who have been there , like me , can not fully identify with the sufferers, because they are not there. But , I think they DO understand what you are undergo. I truly understand the enormous frustration !!.. The least I can do is hold the HOPE together with you, and pray there will be a cure.

[wizardscar]

We have both suffered from M.E and decided to set up a project, 'From M.E To You' to help try and raise some awareness & understanding about the illness.

The first video is on our channel now, it'd be great if you could watch and spread the word.

[freedomfromme]

Thank you for this video. We also have many specialised ME/CFS videos on our channel so please do take a look

[traceynorthernstar]

It is so unbelievably comforting to find other people who understand the full extent of this. NOBODY believes me...not one person. My boyfriend gets mad at me for not keeping up with him. My dad just tells me to get a job and stop pretending to be ill. Even tho i am doing a home-study Aviation Degree. I'm trying my best. But nobody cares...

[BondGirl070]

@traceynorthernstar It is sad than anyone of us feels isolated with this tormenting illness. To talk to others with the illness who understand and have been there.. done that can at least give an avenue of compasion. Check out my site, videos and follow me on facebook... M E Myalgic Encephalomyelitis. Hang in there.

[fogggygyrl]

ME is Myalgic Encephalomyelitis, that's the name for CFS in the UK and Australia and Canada, New Zealand too.

[justinreilly1]

Also rational suicide is a leading cause of death. i'm actually surprised the suicide rate isn't even higher since this disease is pure hell to endure.

[RubyMiami]

That is just what I think of it also - a never ending hell or purgatory...My faith gets me through the worst times. It is against my faith and beliefs to commit suicide, but I can tell people reading this, my life is at an end. Without future plans what is life any more? Without being able to go to family events, to see family at all? To see anything but four walls. I shouldn't watch these things it only reminds me of my limitations. My best bets are to distract myself endlessly as much as I can

[BondGirl070]

@RubyMiami Yes, our faith gets tested to the very core of our being, but just keep on keeping the faith. Check out my videos and follow me on facebook... M E Myalgic Encephalomyelitis

[fogggygyrl]

Also, SolidScore-- try googling for "How would my doctor know if I have CFS?"

[fogggygyrl]

Solidscore-- google for butyoudontlooksick and click on the message board. See if you think you have similar symptoms as the kids there that have CFS or other illnesses. Let your parents know if you do. Let me know if you need more help.

[fogggygyrl]

I understand how you feel Multi. It's horrible dealing with this day in and day out.

[SolidscoreX]

i might have this...any suggestions on how i can find out if i really do? the bad thing is that im 16 =/

[MultiCherryLips]

i have fribromialgy and fatige cronic ,and is really exausted living with this i use acunpunture and omeopatic , because the traditionals medicins(pills antidepresives ,lyrica etc.. no work, no cure) i always use a ansiolitic 0,5 mg only . WE have a lot PEOPLE in the world With this ilness WHY the ciebtifics no make a cure yet is terrible this... the patients we have this ilness suffering a lot , is pain and fatige all the day, OMG :(

[fogggygyrl]

We have hope today!! Thank you Researchers from the Whittemore Peterson Institute (WPI), located at the University of Nevada, Reno, the National Cancer Institute (NCI), part of the National Institutes of Health, and the Cleveland Clinic. :)

[1nerdse]

This illness has been around for a long time-a lot of nurses have it, and I notice too that there are a lot of really severe cases in younger people in the UK. I lived over there in the 80s - Chernobyl raciation was all over Europe and you all don't have the land area the US has so it was likely more concentrated. Plus "mad cow" was worse there. Can't help but wonder if somehow those make it worse there...or if it is a prion disease, like mad cow, which can't be diagnosed except on autopsy.

[PostHuman2113]

I probably replied to this with another name, but have forgotten. I have had this since I was 13 and I don't feel things like the experience of joy at all and feel like I have been living inside a nightmare for over 16 years. It's like the song says, "It's a very bad world". Transhumanism will fix us one day and take away the suffering, but I will not make it. I don't even want to, not feeling like this for another decade or more.

[04033004]

in my land germany the doctors are so fuckin stupid about this terrible sick cfs.

its a shame.people like me ,who have cfs

must fight alone.

[DeathlySerenity]

It's taken 5 years but recently I was given the diagnosis of ME. It's horrible and I'm willing to help anyone else through this. x

[dysautonomia1]

What Is ME

[fogggygyrl]

Hi Rie3ful,

I sent you a Private Message with some info that should be helpful for you. Hang in there!

[Rie3ful]

How do you get out of the hell you're living in?

My child has this and it has so far ruined her life and is fast ruining ours because of the lack of disbelief and help from education authorities and doctors.

How can this be allowed to happen:(

[GBCTwo]

Given the possibility...no...probability­...that this has been used as, for many people, a dustbin diagnosis by the medical profession, the only treatment available to me from my GP is psychiatric. Given that I have a document from a psychiatrist stating that I have a clean bill of mental health, where are the other treatments? It's not necessarily a case of having a "strategy" because there are no other options available.

[AllieRaymond]

Hi - I am also sick. I have also had trouble with doctors! I'm in London. I have some suggestions if you still need avenues... feel free to message me! allie

[Rie3ful]

Hi I have a daughter who is 13 and has CFS she has been ill for 18 months now. We have done everything asked of us by the Paediatrician and now we have no support from the GP or Paediatrician. She has had no education either, how do i go about finding a decent GP?

Any help would be great as i feel we are losing in everything now.

[fogggygyrl]

ilove2dance, I'm so sorry you have gotten CFS at such a young age. That's very unfair. Hopefully, they'll find some treatments for us soon. The Whittemore Peterson Institute may have something in the works. Prayers and Hugs. fogggyrl

[ilove2dance4eva]

Im 12 and have cfs :(

[PostHuman2113]

Sorry I clumsily clikced on the thumbs-down symbol. Sorry to hear you have it too.

[JasonSilvestri]

Awesome M.E,/CFS video!!!!

[MCFLYnBUSTEDLOVER]

this is very good to other M.E/CFS videos i've seen.

i'm an CFS sufferer and it makes me really glade some1 has thought about us sufferers

[Azraelev]

Good video, I think alot of doctors in the nhs either don't believe in M.E or are unwilling to help, whatever happend to their hippocratic oath? it seems more like a hypocritical oath to me.

[essy111]

Theres no cure for this disease. The governments are trying their level best to make as many people ill by polluting our water foods the air we breath!

[niansenx]

Yes because that's what any government wants, a country full of sick invalids.

[fogggygyrl]

Personally I've spent many thousands of dollars on natural and pharmaceutical remedies, and only a handful help some of the symptoms some of time. None are a cure. There is no cure.....yet. We need funding for scientific research and we need it NOW!

[essy111]

Please stay away from NHS intrying to get help cos they wont! Here is some remedies Ive tried that helped tremendously Licourice root powder Echinacea tea Milk thistle and Miricle mineral solution MMS for short.

[Timebandit720]

Does anyone know if theres any kind of network out there, to bring people with M.E. together, where they can maybe compare notes for what treatments they've tried and if they've had any positive results, (and to what degree?) I think this couild really help. I've tried many herbal tablets, a couple from the US did help a bit, maybe 8%, just enough to get me through the day, but they are expesnsive. There are many other treatments I've heard of, but am wary of throwing good money away. Any input?

[gillbatty]

Hi. Ive been thinking the same thing. We all need to compare these so called 'cures'. Ive spent a small fortune on all sorts of things, but nothing really stood out and worked. Im always looking on the internet for M.E. sites for people to 'talk' on so let me know if you find one..thanks. Gill.

[ShowalterdontlikeME]

Excellent video. It really underlines the tragedy of M.E./CFS (CDC) in children and young people.

[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!

[danielfarrell2008]

I am currently 18 and have CFS since 11 I find that you should find and optium balance between rest and activity that daramticly reduces symptoms. Then you should very very slowly decrease rest and very very slowly decrease excersise, to go up the scale. If you feel you yourself going backwards you should decrease activity and increse rest until symptoms are under some control and then revert to the plan I stated at the begining. Reading books on the illness can also help

[danielfarrell2008]

my made a spelling error below where it says decrease excrsie in the first paragraph I meany increse excersise

[bubblesocks]

Thankyou for this, it's really helpful to find that you are not the only one. ME is very isolating, and although I wouldn't wish it on anyone it's great to know there are others going through the same thing.

[spamsalot]

This video is so helpful to me,and Im glad you used those images from the pain exibition,Im looking at the site now,and the art gives me great comfort that maybe,if people look closer,they can see and understand what M.E/CFS sufferers like me go through.

[SANDMANCASTHISSPELL]

Your video was very moving. I could identify with the women loOking out the bars. Thanks you so very much.

Sandman Cast His Spell

[fogggygyrl]

Ty so much Peacelove! I hope you continue to improve. I know just what you mean too. I totally appreciate when I can get out now as well.

[peacelovemiffy]

Have M.E.+fibromyalgia.video shows girl in prison cell looking out to natures beauty.i so UNDERSTAND that feeling+was housebound for years.I am now able to go outside occasionally+really appreciate all i see,smell+hear as i had been starved of outside life.When i get out, it makes life worth living again.Those of u who are only able to look out of the window,hold strong, keep going,1day u may b as lucky as me + actually get out there for real!!

love and blessings....x

[theblinkisyou]

(cont) I'm not very eloquent today sorry lol but hopefully that makes sense. You have to think of it like we just get "less" than everyone else. It can be managed, SORT OF. Not what normal people call "managed" but what you or I would call that.

Who is the singer on your video? They seem familiar to me

[fogggygyrl]

Hi blink,

This is Gary Jules covering the song Mad World by Tears for Fears.

You've explained how I get through life with this DD. I have to rest before doing anything and now that I'm much worse I have to rest after I do things as well. People can look up the Spoon Theory which explains this as well even though that is for MS I believe, it's the same phenomena.

[theblinkisyou]

(sigh, I had to post the rest of my comment on a second post because of the "over the limit" thing on comments)

For me I've learned to "save up" ahead the times I need to go to the doctor or GO places. Think of it as "life force". My definition of this disease and how I explain it to people is "We have less "life force" than other people. And once you use up the allotment for that time period, it doesnt replentish until..." something like that..(Is how I explain it.

[theblinkisyou]

The def of CFS has one very small but important part that ppl miss so don't be disheartened:) I forget how its worded in the def but we all call it "cfs payback" VIP :) its there, and it's what makes CFS cfs. I think its "followed by a period of...(something about "fatigue") but its there.

[fogggygyrl]

As Rich Carson stated the other day, many people probably develop CFS from a variety of assaults on the immune system combined with genetic tendencies. We don't know for sure. But Chronic Lyme Disease is certainly similar to CFS and FMS and it's very possible to have two of these illnesses or all three as well as others.

[fogggygyrl]

From what I've been reading most autopsies of PWCs show high levels of HHV-6 in the brain and spinal fluid and other organs and tissues of the body. Like Sophia Mirza, for example. May she rest in peace.

[runninghoove]

CFS is simply undiagnosed Lyme Disease. I have CFS. I also have Lyme Disease. I have had lifelong depression. Great video by the way!

[xxxsusserxxx]

A wonderful and poignant video. The only problem I have is that the illness has a proper name. MYALGIC ENCEPHALOMYELITIS. I know..I HAVE IT. I refuse to call it the absurd name chronic fatigue. I am not tired..WE are not tired. WE ARE SERIOUSLY ILL. WE are dying of a serious virus. We have been denied the truth. The song is perfect-Thank you for the posting.

[fogggygyrl]

Thanks for your feedback everyone. I'm glad that this video is being shared so much and helping others understand more about our illness. Your comments all mean a lot to me. :)

Ever since YouTube shut down for servicing last night this video won't play in Firefox. It plays in IE though. I'm going to try to get that fixed.

I hope we all see better days in the future.

fogggyrl

[gangstagrannie]

I believe ME/CFS exists and I also believe there is something very suspicious going on when the govt won't acknowledge an obvious illness. I am aware that the general public have often been 'used' for testing in spraying bio-chemicals which often work on the immune system. Might be something to look into? Also, check out how damaging flouride in water is, yet they continue to flouridate the water. Many would be amazed.

[baloneks]

Why government don´t accord that the ilness exists?why have I to permit every day,every second in my life 5 years yet?I´m so exhausted a don´t have any help???I wanna cry..

[crash1094]

Oh my, lovely and sad. Mostly true.

The governments may be hiding us away, but there is new research at different universities around the world. They can't keep us hidden forever.

I've done better on an experimental medicine (which costs a small fortune) - but FDA took it away from me three months ago. The clock is ticking. If I don't get it back in 9 months, I will disappear again. I don't want to.

Beautifully done, beautifully done.

[octrosie20]

Excellent: many thanks.

[gapsych]

Fogggygyrl. Your video is beautiful. I am going to send it to friends and relatives.

Thanks, gapsych

[Route625]

Great video! People need to be informed about this!

[redrachel76]

This video is a work of art.

[fogggygyrl]

I feel for all of you who are suffering with CFS. It can really take your life away and it's tough to live with constant suffering. I'm hopeful that we can get better funding for biological research for it. This is what's so desperately needed.

[luminescentfeeling]

Your friend lock is on, when you write messages to people, they cannot reply. :(

[redchant]

I have had CFS/ME for about 8 months or so. I was shocked to see that you can die from the illness, I didn't know that. I've started seeing an osteopath who is uses a technique to drain toxins from the lymph tissues. It's too early to say if the technique works yet (perrin technique) but many cfs patients have got back to 85-90% health, some even a full recovery. It usually takes months rather than weeks, but it could be a good idea to look at this technique if you aren't already aware of it.

[WayneinOregon]

Hi Redchant,

I'm not sure if you'll get this message as I normally don't try to figure out how to work these things. I was interested however, if you followed up on the lymph drainage you mention, and what your results were. I've had this illness for decades. -- Thanks

[Abendemfindung]

This is a really great video - I especially connected with the painting of the girl in a cement room looking through bars at the world outside . . . I've been suffering with this beast for 18 years, started when I was 16, never really had a chance to have a life. Very well done video.

[LadyfyreGraphics]

Thank you for this, I have had this illness for 14 years, being very severely effected for much of that time unable to leave the house foe months at a time and much of that spent in bed :( Nowadays I am able to get around a bit and look *normal* but things that most people take for granted leave me so exhausted I can't move anything, not even my tounge to speak.

I find it very difficult when people ask me what M.E. is and the way that they look at you when you try to explain.

[korkyackland1969]

Great video foggy...greetings from a fellow sufferer across the pond!

[pricklesxpq]

Thanks for making this :) It gets across facts in a very powerful way

[mamie0697]

Wow. Powerful. Informational. Very good Video. Very tragic illness.

[fogggygyrl]

Thanks for your kind comments everyone. I'm glad I could make this video that shows what ME/CFS specialists have been saying for years about this crippling illness.

[ParsonJRT]

Fabulous and i've always loved that version of Mad World, much better than the original, your friend's rendition is beautiful. I also think the way you linked the pictures and lyrics will help non-sufferers to remember the details and how tough it is to live with this illness. Thank you.

[Naturebound]

stunningly powerful...

[Englander72]

Good video, FG :)

[kholmes39]

I like how your video conveys facts about ME/CFS as well as the sense of melancholy that can result when lives, even those of kids, are so deeply affected by it. Nice use of text, song, and artwork. What was that line in the song about "the dreams I'm dying are the best I've ever had"? As a fellow sufferer, I can relate to that!

[cappster24]

WOW! Fogggy that was terric! It should definitely add to public awareness. Suffering from CFS/CFIDS/FMS myself, I know how important it is to get the message out there. Seeing young kids at the Fibro & Fatigue Center breaks my heart! It's bad enough having this at an older age.

Thanks for doing this!! You're one SUPER lady!

....btw.....this is andi...lol

[Peach1968]

Great job fogggy...

[ElisabethBry]

Moved to tears...Thanks my friend!

[Xavialynn]

Great video, TJ/FogggyGyrl, excellent imagery and info! This needs to be taken seriously and the possibilities of other infections such as lyme, mycoplasma and other 'stealth pathogens' (including viral) also looked into.