Laura Hillenbrand: Leaving frailty behind

[Sidereal]

The audio (which is 44 minutes long) discusses the illness in much more depth and is far less disappointing than the written summary (which is unfortunately the only thing most non-patients will read).

 

[Gingergrrl]

Actually, Gingergrrl, don't worry about criticism. If someone can't stand the heat, they should stay out of the kitchen. Your points are well taken. The more I think if the interview the more disappointing and even irresponsible I find it.

Yes, the more I think about it, the more I do find it disappointing. She was very ill and really suffered and it makes it sound like finding a boyfriend and going on a road trip can cure the disease (if you didn't know better of course)!

 

[Groggy Doggy]

The audio (which is 44 minutes long) discusses the illness in much more depth and is far less disappointing than the written summary (which is unfortunately the only thing most non-patients will read).

I listened to the podcast and ignored the written summary. But the other way around would paint a different picture.

 

[Groggy Doggy]

I'm happy Laura is doing better but also was discouraged reading this for the reasons others have mentioned... and that it is in Stanford Medicine.

Edit: Meant to say disappointed instead of discouraged.

I can see what you mean from only reading the summary (which I ignored). I wonder if we can post feedback somewhere about the editing. It needs to be unedited.

 

[ME_guy]

I listened to the 44 minute interview earlier today and just scanned the text summary. As others have said, the podcast audio includes a lot of detail not included in the text version. Also, listening to the audio, you get nuances in voice inflection/feelings that could not be gotten from the text even if it were completely transcribed.

While the interviewer asked some good questions, and Hillenbrand gave thoughtful answers, the interview was only 44 minutes long, not 44 hours. We should all ask ourselves if we could completely and perfectly describe our own ME/CFS experience in just 44 minutes. I could never do that, even if speed-talking.

She has been suffering from ME/CFS and a similtaneous (but perhaps separate?) case of full-time vertigo. Hell indeed.

I had a lot of vertigo from Menieres disease for a few years, but that ended before I ever developed ME/CFS. She has had it pretty rough. It seems like her relative improvement of late is as much or more to do with conquering a lot of her vertigo, but probably also improving somewhat on the more traditional ME/CFS symptoms. I am glad for her that she has made real progress and the quality of her daily life is better, on average.

My only regret is that the interview was only 44 minutes long. Her often thoughtful answers left me, and others here, with some great follow-up questions that it would be nice to resolve (for our own curiosity and for the edification of people without ME/CFS).

A fascinating interview. I wish it were Part 1 of a series.

I may list a few of my wished-for follow-up questions in this thread.

In the meantime, THANK YOU Laura Hillenbrand, for helping the cause by sharing your life example!

 

[Snow Leopard]

Yes I also wonder what treatments she has been doing. Im so happy for her, but the article makes it sound as though all she needed was the courage to change her life and that she did a kind of car based GET in order to get out of her house and travelling again. Im pretty sure it wasn't that easy- but I would like to know what else helped her.

I think something a healthy reader might miss is that she is still quite ill - only she went from severely to moderately ill.

I know of a few people who have more or less recovered. They don't tell people what they did to improve. Why? Because it wasn't about how much activity that they did or the supplements/medications they tried - their illness improved spontaneously.

 

[Groggy Doggy]

I may list a few of my wished-for follow-up questions in other post

As much as I want to know her treatment protocol, I respect her right to privacy. If her treatments were expensive or difficult to obtain, then she would get criticized that she is priveledged. If they are psych meds, then she could get critized for that. If they include CBT, GET, or PT, she WILL get criticized. So if I were her, I would not reveal any details. From what I read, the woman has gone thru enough. She deserves some peace and tranquility.

 

[taniaaust1]

Yes I also wonder what treatments she has been doing. Im so happy for her, but the article makes it sound as though all she needed was the courage to change her life and that she did a kind of car based GET in order to get out of her house and travelling again. Im pretty sure it wasn't that easy- but I would like to know what else helped her.

listening to it was far better then reading that article.

 

[taniaaust1]

Honestly, I was pretty disappointed with the interview... I came away thinking that sheer willpower and "pushing" beyond ones comfort level is all that is needed to be somewhat well again. I would have preferred more discussion on her actual treatment(s) and less about doing more = feeling better. Its just difficult knowing that I've personally pushed myself until I was in the emergency room. And I've never been able to "teach my brain to tolerate" the symptoms.

That said, I am very happy for Laura and I really appreciate that she is raising awareness. I wish her all the best!

I guess being an interview directed at general public, going into all her treatments wouldnt have been relevant to them. It is a pity as we know that some will pick out bits she said to suit their GET purposes.

but on the other hand this interview was very very good in many places of it. If you havent done already give it a listen to.

She did say she's still sick so hopefully this interview did make it clear that we all arent easily fixed and though her attitude or whatever else she did helped, it certainly hasnt been a cure.

 

[justy]

Thanks for the info about the audio interview- I will take a listen. I did realise just how ill she had been and also realise she has improved, rather than cured/in remission. Fir myself going from severe back to moderate (with odd severe weeks or days) has really helped enormously - although us mod/severe patients always teeter on the edge of being fully house/bed bound again and slipping back into extreme hell.

I had vertigo for about 8 months after a trial of Armour thyroid went awry and it is truly awful on top of the ME symtpoms.

Its a shame that the article was edited this way so as to represent improvement as a challenge that one can overcome with will power. Really hope she continues to keep at her current level or improves further. I hope for that for all of us.

 

[Sidereal]

I've had vertigo during certain bad spells as part of my ME and it was pure hell.

 

[Mij]

The vertigo is very debilitating- mine is always viral. It has gotten worse over the last 14 years. Sometimes it will last only for the day and sometimes up to 6 months.

 

[alex3619]

Agree. And as we feel a bit better, with treatments, we will be able to 'test the waters' and do a bit more. Recovery from a debilitating chronic illness is a long process filled with ups and downs.

I have had treatments that allowed me to do more so I did, testing and pushing my boundaries. The treatments didn't last for me, its nice if they do for someone. Sometimes though they helped for years. In every case its been treatment first, followed by testing to see what I can do.

 

[alex3619]

I've had vertigo during certain bad spells as part of my ME and it was pure hell.

Some patients have this as a constant thing. I mostly got past that two decades ago, but from time to time they return for a bit.

 

[mango]

I've had vertigo during certain bad spells as part of my ME and it was pure hell.

Same here I still get it sometimes.

 

[u&iraok]

I know lots of people want to keep medical details private, but it always ends up with ME with it looking like a miracle of some kind and reinforces the belief that its possible to get well with will power.

I didn't like the way it came across there, either in the beginning of the article, but as the article went on, it seemed to show that it is a physical disease.

I liked this part:

I don’t feel contempt for the medical community. Different doctors are different people. I got my diagnosis from a wonderful guy, the head of infectious diseases at Johns Hopkins, who was the first person who was willing to say, “You have a serious disease, and the other people who have dismissed you are simply wrong. I don’t know what’s wrong with you, but I believe that you’re very ill.” That took humility for him to say. I am so grateful for it. I walked out of there happy even though he said, “I can’t treat you. I don’t know what to do for you.” But simply telling me, “I respect you, and I have a limit to my understanding of disease,” was a beautiful thing.

My physician in Washington, D.C., would exhaust himself trying to help me, and he would stay with me for hours. He would make house calls because I couldn’t come to him. He was wonderful to me.

 

[Nielk]

Everyone is happy for Laura and I wish the same for all patients.

The problem with the interview, starting with the title is the connotation that her increase in functioning was due to
motivation. She used to be frail but the inspiration of her boyfriend and the fact that she wanted to move to be close to him was an inspiration that got her out of her frailty.

That's like saying I have suffered from heart failure for years, but because I fell in love - my motivation enabled me to be much more functional.

The written article does mention new treatments once - "Recently, Hillenbrand has made a lot of changes in her medical treatments and in her life.", but noting again as far as treatments. It does go into great details though about her inspiration and motivation enabling her to do more and more.

The decision to focus on motivation as opposed to treatments will not only not help patients, but will be another testimony to quote from for those who want to make this disease into a psychosomatic or somatoform condition.

 

[Gingergrrl]

The problem with the interview, starting with the title is the connotation that her increase in functioning was due to motivation. She used to be frail but the inspiration of her boyfriend and the fact that she wanted to move to be close to him was an inspiration that got her out of her frailty.

@Nielk This is how I read it as well (although I did not listen to the audio which sounds like it was much better by everyone's comments).

I have had opportunities to go on amazing trips with my husband and daughter in the last 2-3 years but there is no amount of willpower or motivation that allowed me to be well enough to travel or to walk without a wheelchair so I did not get to go. If it just came down to love, motivation, persistence, desire to be well, then I would be cured and traveling but instead the last two years I have gotten progressively worse. My family either does not go on the trip, or on a few occasions has gone without me, and either way there is guilt and sadness involved.

If I find a treatment that improves me (even if not relevant to others) I feel compelled to shout it from the roof tops even if it means I end up getting criticized for it. I'll take the potential criticism if the information can help someone else. I still adore Laura, my happiness for her is not diminished in any way. I just wish she would have shared a little bit about her treatments so people reading would know the hell she had been through to reach this point and that the love she felt for her boyfriend did not cure her.

 

[ME_guy]

I had not realized that vertigo can be part of ME/CFS and I am glad to be more aware. I had vertigo a lot years ago, before ME, and it's obviously no picnic. Best wishes to all who have it.

 

[Mij]

@ME_guy my acute onset was severe vertigo, I thought I was having a stroke. I woke up with it one morning and that was the end of my healthy life.

http://www.ahummingbirdsguide.com/whydesynonymousterms.htm

Phase #1 This prodromal phase is associated with a usually short onset or triggering illness. This onset illness usually takes the form of either, or any combination, of the following, (a) an upper respiratory illness, (b) a gastrointestinal upset, (c) vertigo and (d) a moderate to severe meningitic type headache. These are only the most common onset illnesses or symptoms of which there are several.