Why everyone with Myalgic Encephalomyelitis needs a computer

[scooby22290]

hi,i suffer with sleep paralysis to.this is such a scary thing.i thought i was the only one to suffer from this to,so you have opened my eyes.thankyou for sharing this information with us.take care now...

[ZacharyMoonlight]

Wow, I had no idea other people had the sleep paralysis too - I always worry that if I can't get moving to get my breathing going again, I will actually suffocate. Both my medical family and doctors simply dismiss this. It's really frustrating when it takes hours of your sleep away, when sleeping is difficult as it is. And I'm also being made to take antidepressants and do exercise, which is really making me worse. Don't know how to convince them otherwise.

Thanks for this video, keep it up x

[AHummingbirdsGuide]

@ZacharyMoonlight I hope you can find a way to stop being forced into 'treatments' that make you sicker and are totally inappropriate...bad enough tio have no proper treatment but to have to face this as well. It's so sad...and often when you are made much sicker they see tey were wrong and are so so sorry...but is too late then often, so hope you can convince then soon to stop all this nonsense!

[Megan1710]

How is M.E. verifiable by scientific testing, at this point in time?

[AHummingbirdsGuide]

By MRI and SPECT brain scans, holter monitors, tilt table testing, blood tests of the immune system and so on.

I can't post links here, but see 'Testing for ME' on the HFME site, it's in the Navbar on the left. Can't miss it. Full referenced and detailed.

:)

Don't belive anyone who says ME can't be etsted for, it can, and even more easily and reliably than diseases like MS! It is true you can't test for chronic fatigue however!

[MollyMate1]

Until this week I had no idea that ME could be so debilitating. Please all of you, don 't give up. Rearch for a cure could happen any time.

[don4121]

i too had sleep paralysis in the early years of me, it is one of the most scarry symptoms of our dissorder

if anyone wants info please send me an e-mail and i will help you . jodi you are our hero keep up the good work !!!

[livingfaith17]

Really good video

[kimmytheechidna]

If it wasn't for my computer, I would go insane from loneliness due to being too ill to socialize normally.

[AHummingbirdsGuide]

Me too:)

[KerliFanatic]

A fantastic video! Thank you so much for posting this. :)

[GBCTwo]

Having a computer with internet connection is vital if diagnosed with M.E.. I'm not so terribly bothered with hearing about how other people are suffering (!) because I know that already but for campaigning, I have to have the 'net.

[skas246]

this is a fantastic posting, thank you!

[2hotinaz]

I have also had sleep paralysis for many years, compounded by hallucinatory experiences at the same time. It IS very scary. For so many years I was afraid to tell anyone about these experiences for fear they really would put me in an asylum!! I never knew that others were having these same experiences. It is so sad, that we are made to suffer in silence cos we have had so many bad things happen when we tried to explain things to our doctors or families. At least things are changing, but slowly

[BretagneShrew]

I think I get sleep paralysis sometimes, but it only lasts for a few minutes at a time - an hr sheeesh!

[iwillforu]

Very helpful.

[H4NDCRAFTED]

This might be a repost, sorry

I didn't know I had sleep paralysis till 7 years in LOL

Thanksyou so much for your videos you are great!

Sleep paralysis can be very scary...trying to twitch your face is supposed to be the quickest way out. I hate it when you can't even breath.

[livingfaith17]

can you pls explain what seep paralysis is?

[H4NDCRAFTED]

Wow I get sleep paralysis loads!

I only found out about it 7 years in.

Thankyou so much for your videos.

[redrachel76]

Thanks for posting this. Ill, living in Israel and have this for 15.5 years now. The Israeli CFS Fibro group is pathetic and goes by the loosest US definition. The internet and films like this keep me going.

[mesufferer]

Well said!

I linked to your website on my latest video, keep up the great work.

[DiamonDie]

I was able to work from home (as a freelance journalist) for the first six years of my illness, thanks to my computer. I've met several good friends on CFS/ME related IRC channels and through my own website - and of course non related forums as well. My own Finnish forum has been a great help to me as well as others. Without the people I wouldn't have heard about my doctor and would be a lot sicker now.

[brownt16]

2  short

[deadgirldreaming]

Thanks Jodi!

For the first few years I couldn't look at a computer - was in dark noiseless room. I got online a few years ago and it has helped so much with the isolation and that feeling that maybe you are just mad... I still find looking at the screen very disorientating - but at least I know I can when I feel up to it now.

love and strength,

Joss

x

[Suzanne42]

I'm ill with CFS//ME for almost 9 years now. You are very intelligent, and one of the many problems I incur is that because I 'sound' good, people think I must 'feel' good. Very frustrating. Keep up these great videos!

[Alexsk1]

You talk so much sense Jodi.

Alex

xxx

[dexhaven]

True. without a computer I wouldn't have been able to know any of the facts about M.E. I also wouldn't have known about things that help, or have 'met' people who can help through experience. ahummingbirds guide is the most valuable resource available, Thank You.