The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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Thoroughbred Daily News interviews Laura Hillenbrand

Discussion in 'General ME/CFS News' started by Webdog, Mar 26, 2017.

  1. Webdog

    Webdog Senior Member

    I am just starting to listen to the 36 minute audio podcast now.
     
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  2. Sushi

    Sushi Senior Member Albuquerque

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    If she talks about the improvement that she reported recently, that would be very interesting. Please let us know with a time stamp, if she talks about it. Thanks!
     
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  3. Webdog

    Webdog Senior Member

    I kept wondering what treatment(s) helped her improve. She mentioned physical therapy being beneficial. She also mentioned that moving from Washington DC to Oregon helped her health, but wasn't clear why.

    I'll relisten and try to get the time stamps. (looks like @Hutan already did this, thanks!)
     
    Last edited: Mar 26, 2017
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  4. Hutan

    Hutan Senior Member

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    Laura talks about her illness from the 8 minute mark until 15.30.

    She conveys the seriousness of the illness very well and counters the stigma (e.g. 'you are just lazy'). There's no suggestion from her or the interviewer that she has suffered from a condition that is fixed by just thinking right. And both she and the interviewer draw parallels between her illness and the subjects of her stories who overcome great obstacles.

    She makes it clear that her illness has waxed and waned over time. When asked how she is now, she replies that she is very much better. She mentions new medication (no specifics) and physical therapy.

    While she isn't coming out and saying GET is bad (and that would not have been appropriate in this very wide ranging interview and given the target audience), neither does she imply that what people with CFS need to do is just get out of bed and get moving. Her illness seems to have had a large component of orthostatic intolerance and of course she has had years of little activity. So, I can see that physical therapy could be helpful to improve function as her illness loosens its grip.

    Later when asked what she will write about next, Laura says she doesn't know. She says that people have suggested a memoir but that she isn't sure that she wants to relive her life yet (something like that anyway).

    So, it was an interesting interview that will make more people aware of the seriousness of CFS (and she mentions ME as the 'new name') without having any specifics about how she has improved or touching much on ME politics.
     
    Last edited: Mar 26, 2017
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  5. trishrhymes

    trishrhymes Senior Member

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    She also mentioned she's on 'different medication' but didn't specify. It would be interesting to know, though her main symptom of vertigo is not a central ME symptom for many people, I think, so her treatment might not be relevant for many of us. It was good to hear her making it clear what a serious illness it is, and the problems we have with disbelief etc.

    Edit: I notice @Hutan refers to orthostatic intolerance - I thought that was different to vertigo???
     
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  6. Hutan

    Hutan Senior Member

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    Yes, Laura did mention vertigo (not orthostatic intolerance) and the contribution of that symptom to her illness sounds rather different to what most of us experience. She spoke about writing most of the (Sea Biscuit?) book lying down in bed. I think of orthostatic intolerance as getting symptoms that may include dizziness when upright.


    Here's some of what Laura said that does touch on the politics of the illness and is, I think quite compelling for friends and family wondering if they should believe that we are truly sick:

    Interviewer: I've read previous interviews with you where you've said a lot of people didn't really understand your illness, that some people just called you literally 'lazy', which is obviously anything but the case, could you just talk a bit about that? I imagine it must be very hurtful.

    Laura: Yes, it's the worst thing about this disease in a lot of ways.

    CFS is a horrific disease. There is one researcher now with NIH who is used to working on AIDS and she said that if she had to make a choice between this disease and AIDS, she'd choose AIDS because this disease is so incapacitating and causes so much suffering.

    So, it is very difficult and it has this added stigma because it was not readily obvious in .. medical tests what was going wrong. The conclusion people kept making was that nothing was wrong. I was told that I was going through puberty (I was 19 when I got sick (laughs)), or that I just didn't want to stay in college, you know it was written in my medical notes that I couldn't handle school (I actually had a better than 4 0 average). I loved school.

    It was stigmatised. And that makes it very hard to get good medical care. It makes it very hard to get kindness from other people, just basic compassion and support from people, that you need when you are really struggling.

    That is fading because the research is turning up many, many things that are going wrong. It is very obvious that our bodies are failing in a lot of ways. So that is still a problem but it's not nearly the problem that it was. But it was a very big problem before (laughs).

    Because of that, I have tried to devote a lot of my efforts to writing about what this experience is like, I wrote a long piece for the New Yorker about my experience and it's been interesting, the amount of interest in it. That article, which is called 'A Sudden Illness', is the second most requested article in their whole archive. So people are interested in learning about this illness and the stigma is going away. But it was quite terrible when I first got sick.
     
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  7. dangermouse

    dangermouse Senior Member

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    Thanks for sharing this :)
     
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  8. Forbin

    Forbin Senior Member

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    Balance problems have long been recognized in ME. It's certainly not universal, but nor does it seem to be all that uncommon. Connecting the problem to orthostatic intolerance seems to have been a more recent development, and it clearly contributes to many cases. On the other hand, there also seems to be vertigo that is more specifically related to a vestibular disorder and is independent of standing. Back in the early 80's, I had a series of tests and it was ultimately suggested that my balance problem was due to an impairment in the blood flow to the smallest blood vessels of the vestibular system. This seems like it might be consistent with other work suggesting that blood flow is restricted in the small blood vessels in ME/CFS.

    Here is an excerpt from a 1987 ABC Nightline program on the then "new" phenomenon of "chronic fatigue syndrome." Guest Gidget Faubion-Jones then headed the "Chronic Fatigue Syndrome Society" (née "Chronic Epstein Barr Virus Society") out of Portland, Oregon. The group had some 12,000 members at one point.


    In 1986, Dr. Melvin Ramsay described the onset of the disease this way:
    I'm not suggesting that vertigo / dizziness is universal in ME, but nor do I think it is all that uncommon. Orthostatic intolerance no doubt accounts for many cases, but something else - perhaps also related to blood flow - may be going on.
     
    Last edited: Mar 27, 2017
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  9. perrier

    perrier Senior Member

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    Because there is no official treatment for this devastating illness, which more often than not, puts people under house arrest, deprives them of earning a livelihood, and relegates them to poverty, and to non stop physical and spiritual suffering, I think she should ( if not on this programme then elsewhere) indicate what she is taking that has brought her improvement. And yet, this information is Impossible to acquire. She shows great sympathy for the suffering horse and war time hero. These have given her strength. I applaud her work. And her writing about CFS. However, I urge her to please show compassion to all our young people who are suffering by revealing what she takes that has permitted her such an improvement. It may or may not apply to everyone, but just maybe it could help someone to crawl out of hell.

    She's a first rate researcher and documentary writer, and is very pleasant to listen to.

    But due to the state of things with this catastrophic illness, I'm not sure privacy is warranted. Forgive me for my insistence. I can no longer endure to think about what all the severely ill are going through.
     
    Last edited: Mar 27, 2017
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  10. Sushi

    Sushi Senior Member Albuquerque

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    This is only surmising but she has such a huge public profile that she may be cautious about revealing specifics about her treatment plan as, we know all too well, that many, many patients would jump in and copy what she did with or without medical advice as to whether it was appropriate for them. Perhaps she feels that it is responsible to not reveal the details of her treatment. From what she has said about her symptoms, she seems also to be a bit of an outlier symptom wise.
     
  11. Esther12

    Esther12 Senior Member

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    Yes - imo it's probably wise for those in the public eye to avoid (even just by sharing an anecdote) encouraging others to pursue a particular course of treatment.
     
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