ME / CFS Phoenix Rising Video

Friends | Posted by Jannie on 26 May 2010 @ 1:51 PM 30 Comments

I get occasional headaches that last less than a day, and as debilitating as they are for the short time they last, I can’t really imagine what chronic pain sufferers must go through — people who have to endure the ”constant pain, crushing exhaustion and neurological problems” of ME / CFS.

ME stands for Myalgic Encephalomyelitis and CFS stands for Chronic Fatigue Syndrome.

But… could the cause of ME / CFS have been discovered ?

The Whittemore Peterson Institute For Neuro-Immune Disease has recently detected the retroviral infection XMRV “in greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested.”

This is a potentially AMAZING discovery to help ME / CFS sufferers!

Read more about it in this post written by one of our own — blogging buddy Cinderkeys of the Cinderbridge band. She suggests 4 excellent calls to action to help those with ME / CFS.

Edit: Here is the link to donate to Whittemore.  Imagine if we all gave just $10.00 each!!

And guess what, friends?! — Cinderkeys wrote, sings and plays piano on the haunting song “Everybody Knows About Me” in the Phoenix Rising video above! I’d listened to the Mp3 on her site a while back, but hearing it with the images brought the importance of raising awareness for ME / CFS to a new critical height for me.  Cinderkeys wrote the song for a friend of hers.

I hope you will watch the video, check out her post and help spread the word!

Thanks so much!

Love, Jannie.

xoxo

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  • 1

    On 26 May 2010 at 7:35 pm

    Jingle said, 

    sorry,
    get well soon.

  • 2

    On 26 May 2010 at 8:08 pm

    J.D. Meier said, 

    I like it — inspired action.

    Actually, I really like the package. I can imagine a bunch of future Jannie videos with slides and haunting songs like “Bones” that inspire action or simply spread the fun.
    .-= J.D. Meier´s last blog ..Lessons Learned from John Maxwell =-.

  • 3

    On 27 May 2010 at 2:24 am

    SnaggleTooth said, 

    Wow- hope I can load the video soon-
    Great info on an important discovery that may help so many, including my Big Sis with Fibromyalga, MS, n major nerve n memory issues!
    Intrigueing science n music going on!
    Best of luck to Cinderkeys!
    .-= SnaggleTooth´s last blog ..Poem =-.

  • 4

    On 27 May 2010 at 2:26 am

    SnaggleTooth said, 

    BB, Howdy Pardner! I noticed the new hat yesterday-
    .-= SnaggleTooth´s last blog ..Poem =-.

  • 5

    On 27 May 2010 at 2:45 am

    cinderkeys said, 

    Thanks for posting this! I told the nice people on the Phoenix Rising forum that you did, with a link back.
    Now to tell Ron the Drummer (Cinder Bridge bandmate). :)
    .-= cinderkeys´s last blog ..Rhyme redundancy =-.

  • 6

    On 27 May 2010 at 5:28 am

    sheila said, 

    Yeah, I can’t imagine that kind of constant pain either. That’s gotta be awful!.

  • 7

    On 27 May 2010 at 7:39 am

    Hilary said, 

    Hi Jannie .. great to let everyone know about the challenges ME sufferers have. I had a friend who had ME .. but she was one strong lady & came through, then her husband had an eye tumour .. talk about life challenges for them all – but the doctors sorted the tumour.

    I too can’t imagine anything quite so horrible to cope with .. an unknown – is always impossibly difficult to explain to others ..

    Cinderkeys has written some wonderful music and lyrics .. which are very evocative ..

    Thanks for highlighting this .. and all the best to everyone on the video – Hilary
    .-= Hilary´s last blog ..A stroll on the wild side … =-.

  • 8

    On 27 May 2010 at 8:42 am

    Glenn Buttkus said, 

    Chronic pain, ah yes, my constant companion, more prevelant than my shadow or
    my tiny moments of happiness as I plunge myself into the wonders of Funsterland. Autoimmune diseases are much more common, or at least there is more awareness of them, these days. I have been living with CIDP, chronic infalmmatory demylonating polyneuropathy, for 15 years. I take IVIG treatments for it monthly. Got one tomorrow actually. My immune system attacks the peripheral nervous system, leaving the central alone; like a cross between fibromyalgia and chronic fatigue syndrome, with a little MS thrown in for chuckles. One learns to accommodate, to accept, and then move on and have the best quality of life possible. So good luck Cinderkeys, I feel your pain, and three hurrahs for Jannie for caring enough to promulgate data on all this.
    Hey BB, I do like your hat, kind of a Crocodile Dundee look to it.
    .-= Glenn Buttkus´s last blog ..Thursday =-.

  • 9

    On 27 May 2010 at 9:17 am

    Jannie said, 

    Hey Jingle — thanks. I am feeling GREAT today, and wish the whole world did too. I feel so sad in my heart konwing there are those in such chronic pain.

    Hey J.D. Inspire people to do what with “Bones,” I wonder ? :) Maybe become osteopathic surgeons??! :) :) I have NO idea! :)

    Hey Snaggle, the longer I blog, the more friends I meet with fibromyalgia and chronic pain conditions. I am so keeping my fingers crossed that this XMRV research could hold the clues and keys to relief for the pain sufferers. Oh, and BB is not sure if he likes his new hat, so you may see him with a new one your next visit. He’s asking for me to photograph him with his hoe and / or shovel too. :)

    Hey Cinderkeys, you are SO welcome. It’s a very haunting song, and topic. I sure hope Whittemore’s research moves forward to great news for chronic pain sufferers — and I have a very very good feeling it will!

    Hey, Sheila, it must just be awful. I don’t know how I’d cope if I had constant crushing pain and exhaustion. I think I’d have to turn to heroin, or something. I seriously do.

    Hey Sweet Hilary, I am very interested as to how your friend managed to get out from under the grips of ME. And had she had it for a long time? Did it just “lift” one day? I saw another ME video a few days ago about how one woman came down with it after severe mononeucleosis. So heart=breaking. I just can’t imagine the depression that must come with ME.

    Hey Glenn, you are very stoic about your painful condition. I really had NO idea, you always seem so chipper and extremely up here, and making us all laugh and smile. You are a true hero. I am so glad to hear you get some relief from it via your monthly treatments. We’ll probably be back to more Funsterish topics here tomorrow — but I felt so strongly about this,I had to post. And am so GLAD I did!!! Oh yeah, BB’s hat — see my words on that to Snaggle above.

    You ALL are SO WONDERFUL!!!!!

    xooxox

  • 10

    On 27 May 2010 at 10:08 am

    Davina said, 

    I’m with you Jannie. I can’t imagine what chronic pain sufferers go through. I get the occasional migraine but otherwise, I’m pretty healthy. I really appreciate my health; it’s definitely something not to take for granted. Good thought to start off my day.

  • 11

    On 27 May 2010 at 12:59 pm

    mrs. ott said, 

    blog is powerful that way. i hope this message is spread. excellent video. i am happy to hear they have discovered an accompanying virus associated with this disease. the more we know, the more we can help. God Bless.
    .-= mrs. ott´s last blog ..[the struggle] =-.

  • 12

    On 27 May 2010 at 1:23 pm

    Lane Savant said, 

    Yeah, he is a hero, isn’t he?

  • 13

    On 27 May 2010 at 2:04 pm

    Paige said, 

    that is good, finding a real cause.

    I have a headache today, well actually this would be day 3. It started at the DMV, may have been the 4 hours spent there in a room full of strangers acting strangely and junk

    The weekend starts today at 5pm, when Beloved gets home. Can I hear a yea for the long weekend?

    YEA!
    .-= Paige´s last blog ..Money is "GREEN" =-.

  • 14

    On 27 May 2010 at 2:35 pm

    Julie said, 

    I can’t imagine what they go through, either. I am such a baby when I get a headache. My Mom has fibromyalgia and has to live with that all the time. She suffers so much – I would hate to have to go through that all the time.
    .-= Julie´s last blog ..Back from all the chaos… =-.

  • 15

    On 27 May 2010 at 6:39 pm

    Natalia said, 

    Hey Jannie,

    Thanks for posting this video. I never heard of this disease before. I can’t even imagine what chronic pain sufferers must go through. I had a tiny glimpse of it when I was having problems with my neck. It’s no way to live! Thanks for helping to raise awareness!

  • 16

    On 27 May 2010 at 8:31 pm

    Jannie said, 

    Hey, Davina — that’s a really good way to look at it — be thankful for our good health. I sure do feel so fortunate I am able to function and flourish. I want to do some good works with my good health!

    Hey, Mrs Ott — so awesome for you to drop in here again, I apologize for being behind on blog reading. What an insightful comment “the more we know,” the more we can help. The gene discovery is just the best news! I hope it pans out and leads to futher research that can find cures. Wouldn’t that be AWESOME!!!

    Lane!! I had No idea what he has to go through. What a guy. I am humbled by his spirit.

    Hey, Paige, I am so so sorry about your headache, I know how awful they can be — well, there definitely looks like a possible root cause with that XMRV. I so hope they get lots of research dollars to keep looking into it. Yes, YAY for the long weekend. And I will e-mail you tonight!!!!!

    Hey, Julie, you know all about Fibromyalgia, with your mother being a sufferer. My heart just goes out to those with such debilitating chronic pain. I so hope soon there can be a cure found and people be rid of this sadness and sickness.

    Hey, Natalia, this is obviously not much of funsterish subject but one that I really hope we can spread the word, to help the people who suffer so much, and often in silence. And Natalia — you keep on swimming — that’ll help keep your neck pain at bay. And guess what ?? I drank 2 waters today!!! Yep, amazing. I feel so much better. THANK YOU!!!

    xoxoox

  • 17

    On 28 May 2010 at 1:19 pm

    Patricia said, 

    Good information sharing here – thank you for this teaching moment. One of my children’s friends mother committed suicide because her chronic pain was so severe.

    It is a big issue

  • 18

    On 28 May 2010 at 1:36 pm

    Tweets that mention ME / CFS Phoenix Rising Video | Jannie Funster -- Topsy.com said, 

    [...] This post was mentioned on Twitter by patriciaswisdom, Manuela Durson. Manuela Durson said: ME / CFS Phoenix Rising Video | Jannie Funster: CFS stands for Chronic Fatigue Syndrome. But… Exciting news! After… http://bit.ly/9yba1M [...]

  • 19

    On 28 May 2010 at 5:34 pm

    Jannie said, 

    Patricia, dear Patricia, I can understand how someone would get so low because of the constant pain. I think what I’d do if my migraines were non-stop. It just doesn’t seem fair at all. It must be so depressing. And thanks for Tweeting.

    xoxo

  • 20

    On 29 May 2010 at 8:28 am

    Mia @ Finding Balance said, 

    One of my neighbors has CFS. I just can’t imagine. Thanks for the video.

  • 21

    On 29 May 2010 at 10:13 am

    Jannie said, 

    Hi Mia, you are so sweet to come and catch up with me. In fact, you are FREAKING AWESOME!! how do you keep up with being such a wonderful human being??

    I was not aware of the depth to which ME and CFS affect their sufferers, this has been a very learning experience for me. And I admire Cinderkeys for writing that song, it could not have been easy to dip and dwell on the subject, but she came up with a valuable gift.

    And this makes me want to help out the Whittemore Institute.

    xoxox

  • 22

    On 29 May 2010 at 10:52 am

    trisha said, 

    they are horrible- i too have headache once in a blue moon- they are terrible, cant do anything without taking a dispirin.

  • 23

    On 29 May 2010 at 1:57 pm

    cinderkeys said, 

    Thanks for all the comments. Most people don’t know how serious ME/CFS is, probably because it’s usually referred to as “chronic fatigue syndrome.” If you hear just the name without any context, it just sounds like being tired a lot. It’s a pretty stupid name.

    Donating to the Whittemore Peterson is easy! Just go to http://www.wpinstitute.org and click the big donate button. :D
    .-= cinderkeys´s last blog ..Brainstorming =-.

  • 24

    On 29 May 2010 at 2:39 pm

    Jannie said, 

    Hey again , Sweet Trisha. When my migraines hit I take a combo of Advil Migraine and or Excedrin Migraine, and usually it helps.

    Hey Sweet Cinder! I just put in an edit in the post with a link directly to Whittemore’s donation page — good idea!! And this has been an AMAZING learning experience for me. I am so glad I got involved in spreading the word.

    xoxo

  • 25

    On 29 May 2010 at 6:45 pm

    tammy said, 

    My mom-in-law dealt with CFS for awhile. It was not fun.
    .-= tammy´s last blog ..memorial day, more than just a long weekend and a bbq =-.

  • 26

    On 30 May 2010 at 2:02 am

    Jeanne said, 

    Jannie,

    I think it’s wonderful that you are raising awareness for ME/CFS. Patients with ME/CFS need and deserve far better than what they have gotten for decades. This is a very serious illness that warrants understanding and serious research dollars.

    Many people don’t realize that ME/CFS can actually be fatal. For example, the Sophia Mirza case is documented on YouTube (among other places). It is just heartbreaking. :(

    Thank you, Jannie!

    Jeanne

  • 27

    On 30 May 2010 at 3:07 pm

    cinderkeys said, 

    Jannie: Once again, Cinder Bridge thanks you (and so do I!).

    Jeanne: This is very true. Sophia Mirza’s case is especially tragic because she died so young, and because she probably would have lived longer had it not been for egregious mismanagement on the part of the medical establishment. But even where that doesn’t happen, ME patients die 24 years earlier than others on average. The clock is ticking.
    .-= cinderkeys´s last blog ..Brainstorming =-.

  • 28

    On 1 June 2010 at 10:23 am

    Jannie said, 

    hey Tammy, I am really sorry to hear that. She must’ve gone through a really hard time. It sounds like she is better, tho, and that must give her a new lease on life.

    Hey Jeanne, well I’m not doing much, but I guess every little bit of awareness helps. Hopefully together we can all do a little bit, tho I know you do a lot to raise understanding and awareness. Yes, so heart-breaking about the premature death. So very sad, it makes me cry. I wish I could help more.

    Hey Cinderkeys,thanks again for your song, your caring, your post and for everything. 24 years on average earlier than non ME people, is just so sad. I sure hope we can raise even higher awareness, and get more research dollars to Whittemore. And soon!

    Thanks all. Thanks so much.
    xo

  • 29

    On 5 June 2010 at 6:00 pm

    Jeanne said, 

    @cinderkeys:

    You are right. The clock really is ticking. :(

    @Jannie:

    Every little bit does help. :) By the way, June 6th is designated as the “Day of Visibility” for several illnesses, including ME/CFS.

    ~~~

    Jeanne

  • 30

    On 11 June 2010 at 6:39 pm

    Jannie said, 

    Hey, Jeanne, sorry I did not see your comment until just now, as I’m passing through my posts to make sure I’ve not missed getting around to peoples’ blogs.

    I saw that post on your blog after June 6th. I hope it got lots of awareness out there.

    xoxoxo

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