A Young Woman's Powerful ME/CFS Video Story

[Cort]

A young woman with a severe case of ME/CFS matter of factly and dispassionately stating in a powerful way what she's been though. After coming close to the edge she felt she had to speak out.

Question: who gets shingles so bad they end up in the hospital for eight days?

Answer - some people with ME/CFS

"Now I am back home, still bed-bound, after spending 8 days at the hospital. I wonder if I never went to the hospital and tried to just rest at home, I’d at least be able to stand up for 30 seconds to get to the restroom. But I can’t play what ifs and the reality now is, I am a severe M.E. patient. While at the hospital, I also tasted what it would be like to have very severe M.E. During those moments, I was practically paralyzed and could not eat, drink, or speak. I think it really solidified my resolve to be an active part of M.E. community. I am not going to wait passively hoping for a cure, knowing in the future, my mind could be trapped in the shell of my body."

Check out her blog here.

• Check out more ME/CFS patient video's in our Patient Stories section in the media department

 

[Cort]

Marina II

 

[AnIrishGuy]

Hi Cort,

Are you sure you have that right? The top video was posted on YouTube on May 17. The one in hospital was posted on YouTube on May 31.

In her May 31 blog post https://marinaexpress.wordpress.com/2015/05/31/my-m-e-story-2/ she says:
"When I posted my first M.E. story video recently, I didn’t realize I was was going through another viral reactivation. etc"

I think at this moment in time she may not be at the level in the first video but at a worse level.

 

[Cort]

Hi Cort,

Are you sure you have that right? The top video was posted on YouTube on May 17. The one in hospital was posted on YouTube on May 31.

In her May 31 blog post https://marinaexpress.wordpress.com/2015/05/31/my-m-e-story-2/ she says:
"When I posted my first M.E. story video recently, I didn’t realize I was was going through another viral reactivation. etc"

I think at this moment in time she may not be at the level in the first video but at a worse level.

Hmm...it's a bit strange she talks about being in the hospital in the first one and then states she's in the hospital in the second but they were posted at times that suggest otherwise. She certainly looks worse in the second one! I'll remove the "dates" from the first post. Thanks

 

[Marina]

Hi, Cort,
Thanks for sharing my video here! I've been visiting your site frequently (you probably could tell from links I put on my blog!) although I was lurking until just now, and was pleasantly surprised to see my video here.
AnIrishGuy is right that I am doing much worse now than when I made the first video. I don't remember if I mentioned hospital at all in the first one, but that week, I was going in and out of ER and school clinic to get IV fluids because all my symptoms started to get worse. So if I mentioned anything about hospital, I was probably referring to that. The pain part of shingles doesn't start until 2-3 weeks in for me, so I didn't know then what was about to happen. When I showed up at the ER for the third time in 6 days, they decided I should be admitted. I kept getting worse day by day at the hospital and by 22nd, I was completely bed-bound. My personal definition of "severe" ME is 100% bed-bound, and I guess I'm there now.
I guess I should write a quick post on changes that happened over past couple of weeks. I hope this clarified any confusion!

 

[Brenda Hankins]

While it's terrible for Marina that she became severe, she agrees that the timing of it was great for the M.E. community's awareness because as she was becoming more ill and taking trips to the E.R. for fluids, she made her first video for the #chilliMEchallenge (the 10-minute one). Then as she rapidly became more severe and admitted to the hospital, I asked her to make another/2nd video from the hospital this time, as this was a great opportunity for awareness. She'd be going into what we're calling "total body shut-down" (not able to breathe, vitals going nuts - the episode she described in her 2nd video) and she'd think in those brush-with-death type moments, "People need to see this," and I'd ask her, "Well did you tape it?!" Lol #Fate Marina is going to do amazing things for the M.E. community's awareness when she is more able and she already has been while so ill. Watch out for this one!! Proud of our chili.

 

[Cort]

Hi, Cort,
Thanks for sharing my video here! I've been visiting your site frequently (you probably could tell from links I put on my blog!) although I was lurking until just now, and was pleasantly surprised to see my video here.

AnIrishGuy is right that I am doing much worse now than when I made the first video. I don't remember if I mentioned hospital at all in the first one, but that week, I was going in and out of ER and school clinic to get IV fluids because all my symptoms started to get worse. So if I mentioned anything about hospital, I was probably referring to that. The pain part of shingles doesn't start until 2-3 weeks in for me, so I didn't know then what was about to happen. When I showed up at the ER for the third time in 6 days, they decided I should be admitted. I kept getting worse day by day at the hospital and by 22nd, I was completely bed-bound. My personal definition of "severe" ME is 100% bed-bound, and I guess I'm there now.

I guess I should write a quick post on changes that happened over past couple of weeks.

I hope this clarified any confusion!

Thanks Marina. I think it was my brainfog that was behind my misstating the timeline. On the other hand it's good to make your acquaintance on the Forums...

What a time you've had. The upside of it is that your video is so evocative that good must surely be coming out of it. It has touched many. Thanks for stepping forward and doing that. (Thanks to Jen Brea for putting it up on her site as well- that's how I found it).

Good luck on getting better!

 

[Cort]

While it's terrible for Marina that she became severe, she agrees that the timing of it was great for the M.E. community's awareness because as she was becoming more ill and taking trips to the E.R. for fluids, she made her first video for the #chilliMEchallenge (the 10-minute one). Then as she rapidly became more severe and admitted to the hospital, I asked her to make another/2nd video from the hospital this time, as this was a great opportunity for awareness. She'd be going into what we're calling "total body shut-down" (not able to breathe, vitals going nuts - the episode she described in her 2nd video) and she'd think in those brush-with-death type moments, "People need to see this," and I'd ask her, "Well did you tape it?!" Lol #Fate Marina is going to do amazing things for the M.E. community's awareness when she is more able and she already has been while so ill. Watch out for this one!! Proud of our chili.

What is the chilliMEChallenge?

 

[AnIrishGuy]

What is the chilliMEChallenge?

I'll leave that to Brenda. Hope you do a piece on it when you hear.

 

[Hello!]

Hi, Cort,
Thanks for sharing my video here! I've been visiting your site frequently (you probably could tell from links I put on my blog!) although I was lurking until just now, and was pleasantly surprised to see my video here.
AnIrishGuy is right that I am doing much worse now than when I made the first video. I don't remember if I mentioned hospital at all in the first one, but that week, I was going in and out of ER and school clinic to get IV fluids because all my symptoms started to get worse. So if I mentioned anything about hospital, I was probably referring to that. The pain part of shingles doesn't start until 2-3 weeks in for me, so I didn't know then what was about to happen. When I showed up at the ER for the third time in 6 days, they decided I should be admitted. I kept getting worse day by day at the hospital and by 22nd, I was completely bed-bound. My personal definition of "severe" ME is 100% bed-bound, and I guess I'm there now.
I guess I should write a quick post on changes that happened over past couple of weeks. I hope this clarified any confusion!

Hi Marina,

Has a dysautonomia specialist evaluated your difficulty being upright? It is possible that targeted meds, like Midodrine, beta blockers, or Florinef could greatly improve your quality of life.

Nice job on the videos.

Hope your health improves soon.

 

[Marina]

Has a dysautonomia specialist evaluated your difficulty being upright? It is possible that targeted meds, like Midodrine, beta blockers, or Florinef could greatly improve your quality of life.

Yes, I have a neurologist whose specialty includes autonomic dysfunctions. I actually had some good results from Florinef and salt. My sitting tolerance went from a couple of hours to several hours. But then this viral reactivation happened and anything I gained got lost, plus more. We actually even increased the Florinef dose during the week I was going in and out of the ED, but all it seemed to do was dropping my potassium level - I just kept getting worse anyway. Now I get worse symptoms from reclining even if my heart rate doesn't go up (and hypotension is usually not observed), so it seems like my orthostatic issue is more than just POTS now.

And thanks for watching the video and your concern!

 

[Brenda Hankins]

What is the chilliMEChallenge?

The #chilliMEchallenge launched May 12, calling the M.E./CFS community to make 2 types of videos:
1) M.E./CFS sufferers make a "My M.E. Story" video, and
2) their friends, family, acquaintances, and kind strangers show their support by making a video of their funny reaction to eating a spicy chili pepper.
Just like the ice bucket challenge - spread awareness in a lighthearted way, nominate 5 others ,and donate to M.E./CFS research. We chose to target Columbia University and Invest in ME for donations.
2 EXAMPLE VIDEOS:

1) A "My M.E. Story for the Chilli M.E. Challenge" by Nicola Lavin, who organizes the challenge with me:

2) And her spicy chili-eating video:

TO DONATE:

• GoFundMe donation page for Columbia University: http://www.gofundme.com/chillimechallenge
• JustGiving donation page for Invest in ME: https://www.justgiving.com/ChilliMEChallenge/

OR Ireland text code for Invest in ME: text HOT to 50300 (€4)
OR UK text code for Invest in ME: text CMEC73 to 70070 (£4)​

MORE INFO/SOCIAL MEDIA:

• WordPress - www.chillimechallenge.wordpress.com (FAQ, background story, where to donate, etc.)
• Facebook - www.faceboook.com/chillimechallenge (updates &where most of the videos get posted)
• Twitter - @MECFS_challenge
• And those videos above are linked to our YouTube PlayList.

The challenge has helped unite the community in a global bonding experience and has allowed us to feel like we're all doing something worthwhile to help our situation. Many M.E. advocates and researchers have taken the challenge. Cort, you should too!

 

[GypsyAnna]

Quite a bit going on here. First off, when there are so many other diagnoses going on besides M.E. or Chronic Fatigue or Fibromyalgia, etc, there is a chance that there could be some mis-diagnosing going on. I am not saying that that is the case here, but the chance is greater if there are so many other diseases and symptoms going on. I most certainly hope that Marina finds a lifestyle that will allow her to feel better. It is an individually motivating challenge for those with Chronic Pain issues. Some accept the responsibility of the challenge and some rely on the medical remedies to resolve the symptoms. Who is to judge?

I would also like to address the milk drinking. Many who are taking responsibility for experiencing symptoms of CFS, M.E. or Fibromyalgia, would not drink the milk. Milk is extremely inflammatory to the human body. I am not here to judge, but so many people do not realize the implications of aggravating pain and fatigue levels, because of what they continue to put into their body. Dairy, sugar, flour and artificial sweeteners and artificial non-foods (being primarily boxed/canned/frozen) highly contribute to symptoms on a daily basis. Of course there is more to it than can be put into a few sentences, but anyone who is telling themselves the truth about their eating habits, and has done the extensive research and experimentation that I have, knows what I am saying here.

I have had Fibromyalgia and CFS symptoms going on anywhere from 24 − 38 years. The only real relief has been from eating properly. Primarily eating Organic vegetables and, or, clean meats, and cutting all sugar, flour and most dairy out of my eating habits. However, even then, the symptoms continue to progress. Although stress is a serious contributor as well, and I must admit that I am not eating the way I want 100% of the time. Sometimes due to finances, unplanned days, letting my guard down, etc, I am not always perfect with my plan. That is something I work on, to make better every day.

I am at the point of having flare-ups every day. if I do not use "Plant Therapy" every night, I would be 95% non functional. The Rx's that were prescribed to me over the years were destroying my body and mind. I had no choice but to switch to an alternative substance that was non-toxic to my system.

I wish I did not need any substances to get through the day, but I will not go back to the Rx meds. I have known of so many others who suffer the additional symptoms of the Rx side affects, and some have even died from the toxicity and organ failures. It is extremely sad what horrific remedies the medical "professionals" have resorted to, when looking at Chronic Pain and treatments.

 

[Merida]

Hi, Cort,
Thanks for sharing my video here! I've been visiting your site frequently (you probably could tell from links I put on my blog!) although I was lurking until just now, and was pleasantly surprised to see my video here.
AnIrishGuy is right that I am doing much worse now than when I made the first video. I don't remember if I mentioned hospital at all in the first one, but that week, I was going in and out of ER and school clinic to get IV fluids because all my symptoms started to get worse. So if I mentioned anything about hospital, I was probably referring to that. The pain part of shingles doesn't start until 2-3 weeks in for me, so I didn't know then what was about to happen. When I showed up at the ER for the third time in 6 days, they decided I should be admitted. I kept getting worse day by day at the hospital and by 22nd, I was completely bed-bound. My personal definition of "severe" ME is 100% bed-bound, and I guess I'm there now.
I guess I should write a quick post on changes that happened over past couple of weeks. I hope this clarified any confusion!

Marina,
Thank you so much for sharing and for teaching others about this devastating illness. In my experience ( 17 years) 'Western Medicine' has failed to provide any satisfactory treatment - or even a satisfactory explanation. Don't know where you are located, but check out: The Institute for Noetic Sciences, The Chi Center - Master Mingtong Gu. Also, Adam McLeod, Naturopath ( and more!), Sean Tsai, DO ( L.A. Area). Also, Grand Master Zhou, El Monte, CA.

Please appreciate that I, as a biologist and clinical diagnostic microbiologist, believed in, and depended on, the scientific method. I have had to chart a new course when it came to 'healing.'

 

[Cort]

The #chilliMEchallenge launched May 12, calling the M.E./CFS community to make 2 types of videos:
1) M.E./CFS sufferers make a "My M.E. Story" video, and
2) their friends, family, acquaintances, and kind strangers show their support by making a video of their funny reaction to eating a spicy chili pepper.
Just like the ice bucket challenge - spread awareness in a lighthearted way, nominate 5 others ,and donate to M.E./CFS research. We chose to target Columbia University and Invest in ME for donations.
2 EXAMPLE VIDEOS:

1) A "My M.E. Story for the Chilli M.E. Challenge" by Nicola Lavin, who organizes the challenge with me:

2) And her spicy chili-eating video:

TO DONATE:

• GoFundMe donation page for Columbia University: http://www.gofundme.com/chillimechallenge
• JustGiving donation page for Invest in ME: https://www.justgiving.com/ChilliMEChallenge/

OR Ireland text code for Invest in ME: text HOT to 50300 (€4)
OR UK text code for Invest in ME: text CMEC73 to 70070 (£4)​

MORE INFO/SOCIAL MEDIA:

• WordPress - www.chillimechallenge.wordpress.com (FAQ, background story, where to donate, etc.)
• Facebook - www.faceboook.com/chillimechallenge (updates &where most of the videos get posted)
• Twitter - @MECFS_challenge
• And those videos above are linked to our YouTube PlayList.

The challenge has helped unite the community in a global bonding experience and has allowed us to feel like we're all doing something worthwhile to help our situation. Many M.E. advocates and researchers have taken the challenge. Cort, you should too!

That's a great challenge!

 

[Cort]

Quite a bit going on here. First off, when there are so many other diagnoses going on besides M.E. or Chronic Fatigue or Fibromyalgia, etc, there is a chance that there could be some mis-diagnosing going on. I am not saying that that is the case here, but the chance is greater if there are so many other diseases and symptoms going on. I most certainly hope that Marina finds a lifestyle that will allow her to feel better. It is an individually motivating challenge for those with Chronic Pain issues. Some accept the responsibility of the challenge and some rely on the medical remedies to resolve the symptoms. Who is to judge?

I would also like to address the milk drinking. Many who are taking responsibility for experiencing symptoms of CFS, M.E. or Fibromyalgia, would not drink the milk. Milk is extremely inflammatory to the human body. I am not here to judge, but so many people do not realize the implications of aggravating pain and fatigue levels, because of what they continue to put into their body. Dairy, sugar, flour and artificial sweeteners and artificial non-foods (being primarily boxed/canned/frozen) highly contribute to symptoms on a daily basis. Of course there is more to it than can be put into a few sentences, but anyone who is telling themselves the truth about their eating habits, and has done the extensive research and experimentation that I have, knows what I am saying here.

I have had Fibromyalgia and CFS symptoms going on anywhere from 24 − 38 years. The only real relief has been from eating properly. Primarily eating Organic vegetables and, or, clean meats, and cutting all sugar, flour and most dairy out of my eating habits. However, even then, the symptoms continue to progress. Although stress is a serious contributor as well, and I must admit that I am not eating the way I want 100% of the time. Sometimes due to finances, unplanned days, letting my guard down, etc, I am not always perfect with my plan. That is something I work on, to make better every day.

I am at the point of having flare-ups every day. if I do not use "Plant Therapy" every night, I would be 95% non functional. The Rx's that were prescribed to me over the years were destroying my body and mind. I had no choice but to switch to an alternative substance that was non-toxic to my system.

I wish I did not need any substances to get through the day, but I will not go back to the Rx meds. I have known of so many others who suffer the additional symptoms of the Rx side affects, and some have even died from the toxicity and organ failures. It is extremely sad what horrific remedies the medical "professionals" have resorted to, when looking at Chronic Pain and treatments.

You are right about dairy, Gypsy Anna. Peter Rowe - a traditional doctor and researcher - has said that if you have a milk allergy nothing will make you better if you don't avoid milk - it's just too big of a hit to your system. Thanks for bringing that out.

 

[Cort]

Yes, I have a neurologist whose specialty includes autonomic dysfunctions. I actually had some good results from Florinef and salt. My sitting tolerance went from a couple of hours to several hours. But then this viral reactivation happened and anything I gained got lost, plus more. We actually even increased the Florinef dose during the week I was going in and out of the ED, but all it seemed to do was dropping my potassium level - I just kept getting worse anyway. Now I get worse symptoms from reclining even if my heart rate doesn't go up (and hypotension is usually not observed), so it seems like my orthostatic issue is more than just POTS now.

And thanks for watching the video and your concern!

It's such a complicated disease!

 

[Marina]

Marina,
Thank you so much for sharing and for teaching others about this devastating illness. In my experience ( 17 years) 'Western Medicine' has failed to provide any satisfactory treatment - or even a satisfactory explanation. Don't know where you are located, but check out: The Institute for Noetic Sciences, The Chi Center - Master Mingtong Gu. Also, Adam McLeod, Naturopath ( and more!), Sean Tsai, DO ( L.A. Area). Also, Grand Master Zhou, El Monte, CA.

Please appreciate that I, as a biologist and clinical diagnostic microbiologist, believed in, and depended on, the scientific method. I have had to chart a new course when it came to 'healing.'

Hi, Merida,
I've done quite a bit of acupuncture sessions, well, as many as I could get with my insurance. As for other alternative healing, we just don't have monetary resources to see someone who charges a couple of hundred dollars on a regular basis. And I am too ill to travel nowadays (all the places you suggested are too far) even if I had money anyways. I can assure you though, that I have been doing best I could to help myself.
It really is unfortunate that we have been neglected so long by medical communities past few decades, but I see changes coming. I haven't given up hope on so called western medicine yet. I've tried many things to get healthy but I could not stop the progression of this disease. To be honest, at this point the western medicine is the only thing I can rely on now. I need to get healthy enough to even think about visiting anyone new or try anything like diet change, etc. I wasn't even diagnosed until this past winter and by then, I was mostly house-bound already. Now that I cannot leave bed at all, it's just mucI more challenging to try anything.
I grew up in a culture that strongly believe in non-Western medicines. So I don't doubt they help. But I also think they are not mutually exclusive. I think they can compliment one another. And right now, I just don't have luxury to try new things. =(
Thanks for taking time to share your advice!

 

[Cort]

Hi, Merida,
I've done quite a bit of acupuncture sessions, well, as many as I could get with my insurance. As for other alternative healing, we just don't have monetary resources to see someone who charges a couple of hundred dollars on a regular basis. And I am too ill to travel nowadays (all the places you suggested are too far) even if I had money anyways. I can assure you though, that I have been doing best I could to help myself.
It really is unfortunate that we have been neglected so long by medical communities past few decades, but I see changes coming. I haven't given up hope on so called western medicine yet. I've tried many things to get healthy but I could not stop the progression of this disease. To be honest, at this point the western medicine is the only thing I can rely on now. I need to get healthy enough to even think about visiting anyone new or try anything like diet change, etc. I wasn't even diagnosed until this past winter and by then, I was mostly house-bound already. Now that I cannot leave bed at all, it's just mucI more challenging to try anything.
I grew up in a culture that strongly believe in non-Western medicines. So I don't doubt they help. But I also think they are not mutually exclusive. I think they can compliment one another. And right now, I just don't have luxury to try new things. =(
Thanks for taking time to share your advice!

It's severely ill ME day. I was thinking of you! How are you doing?