Sushi
Moderation Resource Albuquerque
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This thread is wandering.....Let's get back to the article and start other threads to discuss other topics.
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Laura Hillenbrand: Leaving frailty behind
- Thread starter mango
- Start date
This thread is wandering.....Let's get back to the article and start other threads to discuss other topics.
Thanks sushi I know it got off topic my bad. I spun it that way.
Keep the positive news coming on improvements.
Always nice to hear hope.
Note: The posts on Advocacy have been moved here.
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@justy, Just read a point about medical details kept private in the community the sooner this stops happening amongst everyone the sooner they will be able to solve this web of choas for millions.
We are not Drs ME groups, Drs, NIH and others need to take this on.
We are not Drs ME groups, Drs, NIH and others need to take this on.
taniaaust1
Senior Member
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I think we also need to remember that there is also some need out there to protect some of drs who are treating us. We have no idea but with all the off label useage around our illness etc, she could of been getting a treatment which could of got her dr into trouble. Hence wanting or expecting another to publically share treatments, may be unreasonable at times.
Some may not share for this reason.
Totally understandle this is where the research, publications, funding and communication between groups needs to take presidence to make this happen.
We have help, though limited and face a massive load of reliance on ourselves when we pay into medicare or have done so.
This is not ok.
This needs a new thread. As had been discussed.
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- Grand Rapids, MI USA
I was going to list some wished-for follow-up questions for Laura Hillenbrand regarding the recorded interview and summary. Thinking back on hearing it a couple of days ago now, and seeing everyone's comments, I keep wondering about Ms. Hillenbrand's illness journey over the last couple of years and how that progressed. She did a very good job of portraying some of her symptoms during many earlier years, including long-term vertigo and feeling as though she were, "encased in plastic," I think is how she put it (I will relisten to confirm this wording). The encased analogy is an interesting way to put it and I can relate, especially when most symptomatic.
Like others have noted, her current ME/CFS health status is less clear than her former symptoms. Thinking back, it seems that only brief seconds acknowledged that she is still symptomatic in some ways (what ways?) since her move and still needs to pace herself. As noted, GET or psych proponents with tunnel vision regarding treatments could overly interpret this as validating their view of ME/CFS.
If the interviewer and had more time, it would have been great asked her to draw out the following:
-- Her specific changes in vertigo symptoms in the last few years. She covered conquering some or all of the vertigo before her move, but a few more details would paint a fuller picture [not precisely clear how much vertigo affected her on cross-country trip or in weeks/months afterward].
-- Changes in her other major ME/CFS symptoms in recent years. How much have her whole-body aches or "encased" symptoms changed? Are they still present, but briefer? Less intense?
-- Is waxing and waning brain fog a challenge for her? Less so than before? This could be a sensitive subject for her, a writer, as it very directly affects her profession and personal identity as a writer. Brain fog is probably a sensitive topic for all of us. No one wants to be labeled as periodically mentally slower. It can affect how others percieve us and how they are willing to engage with us.
--What are her best guesses as to what helped her the most with symptoms?
-- Did her other symptoms improve as much as her vertigo? What appeared to help most with aches, exhaustion?
-- Does her treatment include a combination of approaches, like Rx, vitamins, supplements, immunotherapy, or others?
-- She did not claim victory over her ME/CFS. It could be helpful for her to say why not, in her opinion.
-- Do her symptoms still change on a weekly/daily/hourly time frame? How predictable are her symptoms for tomorrow or the next day? (An invasive question, as all of these are, but she could answer at whatever generality or specificity she is comfortable with. She does not owe us all the details.)
-- Regarding the invisibility of ME/CFS, to what extent could this be from the following:
(a) people with ME/CFS keeping a low profile to cope and pace oneself to stay as healthy as possble.
(b) a lack of outward, seeable symptoms that makes us look normal health-wise to the people around us (lack of skin blemishes, dark blue nose with a yellow tip, or bright green tongue when symptomatic. The "you don't look sick" issue.)
(c) Societal norms, personal pride, or wanting to fit in socially with acquaintances, strangers or family members (or all three), so we fake that we feel okay for the minutes/hours we are with others (and then collapse on the couch or bed for few hours or the next couple of days).
(d) Occaisionally feeling not as symptomatic, so we are seen doing things that belie the illness as it usually manifests.
-- What kind of prep did she have to do to have the energy for this interview?
-- Was she planning down time for after this interview so she could recover from it?
-------
I would need to listen to the interview again while taking notes to ask more specific questions.
Like others have noted, her current ME/CFS health status is less clear than her former symptoms. Thinking back, it seems that only brief seconds acknowledged that she is still symptomatic in some ways (what ways?) since her move and still needs to pace herself. As noted, GET or psych proponents with tunnel vision regarding treatments could overly interpret this as validating their view of ME/CFS.
If the interviewer and had more time, it would have been great asked her to draw out the following:
-- Her specific changes in vertigo symptoms in the last few years. She covered conquering some or all of the vertigo before her move, but a few more details would paint a fuller picture [not precisely clear how much vertigo affected her on cross-country trip or in weeks/months afterward].
-- Changes in her other major ME/CFS symptoms in recent years. How much have her whole-body aches or "encased" symptoms changed? Are they still present, but briefer? Less intense?
-- Is waxing and waning brain fog a challenge for her? Less so than before? This could be a sensitive subject for her, a writer, as it very directly affects her profession and personal identity as a writer. Brain fog is probably a sensitive topic for all of us. No one wants to be labeled as periodically mentally slower. It can affect how others percieve us and how they are willing to engage with us.
--What are her best guesses as to what helped her the most with symptoms?
-- Did her other symptoms improve as much as her vertigo? What appeared to help most with aches, exhaustion?
-- Does her treatment include a combination of approaches, like Rx, vitamins, supplements, immunotherapy, or others?
-- She did not claim victory over her ME/CFS. It could be helpful for her to say why not, in her opinion.
-- Do her symptoms still change on a weekly/daily/hourly time frame? How predictable are her symptoms for tomorrow or the next day? (An invasive question, as all of these are, but she could answer at whatever generality or specificity she is comfortable with. She does not owe us all the details.)
-- Regarding the invisibility of ME/CFS, to what extent could this be from the following:
(a) people with ME/CFS keeping a low profile to cope and pace oneself to stay as healthy as possble.
(b) a lack of outward, seeable symptoms that makes us look normal health-wise to the people around us (lack of skin blemishes, dark blue nose with a yellow tip, or bright green tongue when symptomatic. The "you don't look sick" issue.)
(c) Societal norms, personal pride, or wanting to fit in socially with acquaintances, strangers or family members (or all three), so we fake that we feel okay for the minutes/hours we are with others (and then collapse on the couch or bed for few hours or the next couple of days).
(d) Occaisionally feeling not as symptomatic, so we are seen doing things that belie the illness as it usually manifests.
-- What kind of prep did she have to do to have the energy for this interview?
-- Was she planning down time for after this interview so she could recover from it?
-------
I would need to listen to the interview again while taking notes to ask more specific questions.
frog_in_the_fog
Test Subject
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In case you have never read it, here is Laura Hillenbrand's award winning essay: A Sudden Illness