Monday, March 21, 2011

Agatha and Appearances, Ampligen and ARVs, Algernon and Acceptance, Anger and Advocacy

Fans of Louise Fitzhugh's Harriet the Spy will remember Agatha K. Plummer, the wealthy woman whose hypochondria confines her to a bed-full of bonbons.

IMDb provides this bio for the character as played by Eartha Kitt in the 1996 movie adaptation:

"She was rich. She stayed in bed all the time. She was very negative. But she proved people can change, because in the end she got out of bed and learned the delights of using a reducing machine."

Agatha K. Plummer is able to get out of bed very suddenly, in fact, the minute she hears from her doctor that she is terminally ill. She defies the prognosis and gets busy living the life she has been avoiding.

That's very nice for Agatha K. Plummer who no doubt was getting tired of eating bonbons, ordering her maid about and whining to her friends on the telephone.

But I am afraid of Agatha K. Plummer. I'm afraid that she's the image that comes to mind when people learn that I, healthy by outward appearances, am housebound by illness. Indeed there are even people in the medical profession who have an Agatha K. Plummer image of Myalgic Encephalomyelitis (ME), who believe that if we changed the way we think, we ME sufferers could cast off our bonbons and walk.

The reality is that we would love to have a miracle cure. We are always looking for one. In fact we are notorious for trying supplements, exercise regimes, alternatives and self-helps and prescribed medications, in hopes that the next will be a cure or at least provide a little improvement. They don't.

Sure, there are a small percentage who report full or partial recovery. Many attribute their success to This Protocol or That Regimen. These protocols and regimens are often expensive and of course not 100% reliable or everyone would be cured by now.

I won't suggest that This Protocol or That Regimen never actually helped anyone. I myself find some relief from insomnia via herbs prescribed by my acupuncturist and some temporary escape from pain through his needles. I can shave away a little pain with prescription medications. I meditate, take hot baths with epsom salts, hold restorative yoga poses, use distractions, blog, maintain a virtual social life, eat chocolate as needed*, and all of these things are helpful to some degree.

I will suggest that none of those are a cure or even an appropriate disease treatment. Some of the people who feel better after months or years of illness may have been going to improve anyway. A small percentage just do. Their illness may have been caused by other pathogens than those affecting the sufferers who don't improve, other factors out of their control may have contributed to their ability to bounce back, the treatments may have helped a process that was already occurring or cleared away opportunistic infections or other contributing factors enough to improve their health dramatically.

Myalgic Encephalomyelitis is a seriously debilitating neurological disease whose measurable physical effects include demyelination and other damage to the central and peripheral nervous systems, cardiac and circulatory weakness, anomalous proteins in the spinal fluid, increased cytokines subsequent to even mild exertion, and more. None of the treatments offered address root causes.

So we can't just get out of bed and learn the delights of a reducing machine, like Agatha K. Plummer.

Another way in which we are not like her is that most of us are not wealthy. Many of us had reasonably comfortable incomes before illness, many like me were struggling but managing, but once we're ill most of us are struggling at best. Few are in a position to afford a maid, or spend vast amounts of money trying out treatments. Indeed, that we spend any money on supplements etc., that we push our limits to read and write and share theories and the latest research, shows how not-Agatha-K.-Plummer, how not-hypochondriac, we are. We try desperately to find some relief and believe that with research there will be effective treatment.

No one can see how hard we try. They can hear us occasionally complain but they can't hear how often we hide our pain. They can see us looking well but they can't see how much effort it took to shower and dress, nor do they see us on the days when showering and dressing were impossible. That's appearances for you: we look like Agatha K. Plummer and at it's impossible to see our profound energy depletion and our pain. It's hard to see why we don't get our fat asses out of bed or at least get some mental help for goodness sake.

There are some treatments that show real promise. I'm thinking in particular of Ampligen and antiretrovirals (ARVs). Happily they've been shown to restore ME sufferers to near-normal levels of activity. Sadly, they call to mind another fictional character, Algernon.

Flowers for Algernon is Daniel Keyes' story of a man and a lab rat who share tremendous gains and losses. The man, Charly, is a developmentally disabled adult working as a janitor in a research lab. Charly's fond of the lab rats, and particularly Algernon, a rat who's being given an experimental treatment to increase his intelligence. When it works, well, brilliantly, Charly undergoes the same treatment and experiences the thrill of mental acuity.

The sad part is, it's temporary. Algernon loses his newfound abilities and dies, Charly follows suit, and the poignancy of his awareness that he's losing ground is heartbreaking.

And that's the sad part with Ampligen and ARVs.

Ampligen has not gained approval by the FDA, despite decades of research showing measurable improvement in ME patients taking the drug. The company that manufactures Ampligen can't afford to continue providing it to test subjects, while it is meanwhile prevented from selling it and must continue the expensive effort toward FDA approval. So patients who volunteered for drug trials experienced the thrill of regaining mental and physical abilities, only to end in the agony, Charly-like, of seeing those gains fall away as they sank back into previous states of disability or worse.

ARVs meanwhile have been taken by a few ME patients on their own initiative, only recently, since the October 2009 publication of the discovery of retrovirus XMRV strongly associated with the disease---notably, by Dr. Jamie Deckoff-Jones and her adult daughter, both ME sufferers, who have kept over a year's  public account of their results in her blog, X Rx. They experienced strong gains and then some leveling off and even losses, but the results so far continue to look good on the whole.

The drawback with ARVs is that they can be very hard on the body, they require constant follow-up with an experienced doctor, they are notoriously expensive and, while they are FDA-approved for treatment of HIV-AIDS, they are not approved for XMRV-ME, so won't be covered by most peoples' insurance. So they might not bring patients back to normal levels of activity, and what relief they do provide won't be available to most patients until many years of research and red tape have been crossed.

Most developmentally disabled people never got Charly and Algernon's temporary chance at improvement. Most people with ME aren't getting ARVs or Ampligen, and the few who have, may, Algernon-like, be unable to maintain the improvements they do gain.

How hard it is to accept the loss. I watch my own cognitive and physical abilities slip and feel the frustration of pounding on doors in my brain, to rooms I know are there but that are now closed off to me, and of trying physical activities I should be able to do and finding barriers, my body unable to respond or disproportionately depleted after the effort. Still I slam myself again and again against those doors and barriers. I know I should be able to do these things. I know I can. And yet I can't.

There should be vast amounts of research undertaken to find treatment for an infectious disease already affecting an estimated 17 million people worldwide. Sadly, very little research funding goes to ME, and what does is mostly misdirected to poorly-conceived studies, mismanaged, misspent. A few brilliant and dedicated researchers such as those at Whittemore Peterson Institute are making breakthroughs that could eventually save millions of lives, but meanwhile, in the long wasting of this illness, we have to practice acceptance. Like Charly we have to know it's going, and let it go.

EDIT: WPI and by extension its activism wing ANIDA have been discredited recently. I do not advise donations or membership in these organisations unless they successfully restore a badly damaged reputation. 26 Feb 2012

ME patients become champions of acceptance... or die. One champion is Toni Bernhard, author of How to Be Sick, respectfully offering Buddhist techniques and tools for living with chronic illness. Another is Linda Crowhurst, and I'd like you to take a look at this post at Stonebird, the blog kept by her husband and caregiver Greg, and also see the video of the two of them linked in it.

There is something transcendent in the level of acceptance they achieve, something fine, in the sense that the utmost pinnacle of humanity is fine. That is in itself beautiful to aspire to, but there's something more.

Linda is patient and articulate despite the grip of the disease: nobody could mistake her for Agatha K. Plummer; and Greg is calm and caring though so careworn. Together they not only transcend the ravages of severe ME to reach acceptance, but alongside that acceptance they hold and hone their anger.

There's a lot to be angry about: the funding and research debacle, the misunderstanding and often deliberate misrepresentation of the disease by the medical establishment, the judgment of appearances by the uninformed.

The true art of Stonebird is not only the achievement of astonishing acceptance, but the alchemy of anger into articulate advocacy. Straight A's.


* Chocolate was actually "prescribed" in the 12-week pain management course I took at Kaiser Permanente. The doctors, nurse practitioners, physical therapists and psychologists in the pain management team recommend chocolate for a pain flare as it stimulates pleasure helping the brain redirect from pain channels, and provides a temporary energy boost allowing the patient to get recourse to other longer-term measures.

17 comments:

  1. "How hard it is to accept the loss. I watch my own cognitive and physical abilities slip and feel the frustration of pounding on doors in my brain, to rooms I know are there but that are now closed off to me, and of trying physical activities I should be able to do and finding barriers, my body unable to respond or disproportionately depleted after the effort. Still I slam myself again and again against those doors and barriers. I know I should be able to do these things. I know I can. And yet I can't."

    That's one of the most terrifying and yet bravest things I've ever heard. *hugs*

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  2. Lisa Petrison21 March, 2011

    >I will suggest that none of those are a cure or even an appropriate disease treatment. People who feel better after months or years of illness may have been going to improve anyway. A small percentage just do. Their illness may have been caused by other pathogens than those affecting the sufferers who don't improve, other factors out of their control may have contributed to their ability to bounce back, the treatments may have helped a process that was already occuring.

    This is very timely.

    Dr. Deckoff-Jones tells me that she is going to discuss the issue of biotoxin avoidance on her blog shortly.

    For those interested in reading ahead, here is a brief overview.

    http://www.cfsuntied.com/toxicmold.html

    I have available an extensive compilation of Erik Johnson's writings, which address the topic. For a copy, please write to me at:

    lisapetrison at yahoo

    Following is a succinct summary that I just found, written by a classic ME/CFS Peterson patient who's read it:

    Lisa mentioned earlier about a "book" that contains a lot of the science and personal observation that contributed to both Erik's experience and his explanation of his success. I found it to be a truly illuminating piece....I mean, I'd heard of "Erik Johnson Mold Warrior" before, but it wasn't until I read this book that I saw just how well thought-out this all was and how much sense it made even within the infectious-disease framework that I saw the illness.

    You might want to contact Lisa Petrison to ask for this book. It's a bit lengthy but it's pretty easy to read, and by the first 100-200 pages you might already have enough information to have a pretty idea about whether "mold avoidance" is worth exploring. At that point, there are other ongoing, interactive forums that feature daily discussion on the topic which we could point you to.

    *

    Erik, I definitely got that impression from reading the book that you weren't saying "CFS is caused by mold." If anyone gets that impression from you, they didn't read the book. Period.

    You were very clear on that point. You were also very clear on your point that avoiding mold made all the difference. Those of us that choose to explore this should also be very clear in the difference between these two conclusions and stop presuming that anyone is saying "mold causes cfs." You were certainly clear that you wouldn't be surprised if the following events preceded full-blown CFS, and not in any necessary order:

    1) genetic predisposition to reactivity from mold toxins +
    2) exposure to fill_in_the_blank infection +
    3) exposure to the mold toxins

    Even then, you expressed this as a possibility and not even your hypothesis on the cause. The only thing you seemed to insist on was that

    1) you (and other patients with your guidance) recovered by doing extreme avoidance when Peterson was telling you to do ampligen +
    2) researchers and physicians should look into why you recovered.

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  3. And straight A's to you too Creek for formulating this so well.

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  4. That was you best blog yet, Creekfeet. So well written, poignant and deep. And very true. Thank you for expressing so well what many of us can't.

    This I loved. It's brilliant:

    Myalgic Encephalomyelitis is a seriously debilitating neurological disease whose measurable physical effects include demyelination and other damage to the central and peripheral nervous systems, cardiac and circulatory weakness, anomalous proteins in the spinal fluid, increased cytokines subsequent to even mild exertion, and more. None of the treatments offered address root causes.

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  5. Lisa Petrison21 March, 2011

    Sugar is not the root cause of diabetes.

    But if you've got diabetes, it's still a good thing to avoid it.

    Note, though, that I usually don't dive onto people's blogs -- except Jamie's, because I know her and think it's theoretically relevant to the discussion -- to discuss mold.

    It's only when people start to specifically insist that the only valid treatment is Ampligen or ARV's, and that nothing else could POSSIBLY help much, that I feel compelled to supply a different point of view.

    It's one thing for people to choose not to pursue mold avoidance. That's fine.

    But if they say that mold avoidance doesn't help others, and that the many people who have gotten well from it must be mistaken -- that's when I have to speak up. :)

    Best, Lisa

    *

    At the inception of CFS, Dr. Cheney told me that mold doesn't matter, because this kind of reactivity is just the result of something else.

    So I said, "Fine. While you figure out what that something else is, I'm going to stay away from the mold."

    There's no doubt in my mind that this was a good choice.
     
    Who cares whether it is a result of P450 decoupling or anything else, if one can stay away from it and get a life back?

    -Erik Johnson (2010)

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  7. What a wonderful piece of work it said what I have been trying to tell people for years, but lack the wherewithall to express it so well. The closed doors to rooms I used to frequent is something I will try to remember as it is a very good description of how I feel when I want to do something I used to do without thinking about it but now have to plan and pray that I will be capable of doing at that time, very few people have seen me when I am not well, and they fail to understand how debilitating it can be.

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  8. Kassy, I loved _Harriet the Spy_ as a kid and I loved _Flowers for Algernon_ as a teen. I actually love the Agatha K. Plumber character. I reread the book a few years ago and remember feeling jealous that she could just get out of bed like that, while I couldn't.

    Besides that, while I see where you're coming from as to how people could misinterpret us as being like Ms. Plumber, I am just really amused by her. I think she stands for the way kids see through the facades of certain kinds of adults, and how foolish self-important people come across. Harriet realizes that the doctor tells her she has to stay in bed purely to get her out of it.

    And my blog bio pokes fun at this perception of us. It reads, in part, "...I’m lying around all day eating bonbons. Well, not strictly bonbons, mostly dark chocolate, and not strictly all day, mostly for breakfast."

    And I know a real life Agatha K. Plumber! She's married to the rich lawyer dad of a friend of mine. She has been "dying" of unspecified "cancer" with "six months to live" for a good ten years now, though she never seems to have any treatment appointments to go to. She is actually, unfortunately, a truly unlikeable raging alcoholic with a serious anger management problem. But the rest of the family is, somehow, highly amused by her antics.

    -Jocelyn

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  9. Home run baby!!!

    And we so appreciate when you are able to write that it is always interesting, well put together with a nice balance.

    I appreciate your writing. I appreciate you for the balanced, kind person you try to be even with this disease running rampant in your body and your children's.

    What you give here is a gift. So many blogs out there some good, some not so good, yours is perfection.

    I do like the chocolate thing. : )

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  10. Wonderful post. I haven't thought about Agatha K. Plummer in years!

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  11. This is a very, very well done article. I'm so glad to have read it. Very enlightening.

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  12. You say it all so well.... my brain is mostly on vacation at the moment, so won't write more!

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  13. Brilliant post, Kassy. I don't want to sound trite, but you make poetry from the pain.

    Oh and I have it on good authority that chocolate IS a vegetable!

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  14. Thank you for writing about ME. Much of the misunderstanding and misinformation comes from CFS - and the lack of info and awareness of ME. We need to explain and demand recognition, not allow the linking and connections and overlap with CFS. The problem may be that by the time people with ME realize this, they are too sick and the rest take over.

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  15. Great blog post Creek. Thank you for taking the time to express your frustrations that I know we all share in different ways.

    I respectfully disgree with a few things you said:

    "There are some treatments that show real promise. I'm thinking in particular of Ampligen and antiretrovirals (ARVs). Happily they've been shown to restore ME sufferers to near-normal levels of activity."

    ???

    The reason Ampligen was turned down by the FDA in December 2009 was because it did not show a statistically significant difference between patients and controls.

    And who is being restored to "near-normal levels of activity" by taking antiretrovirals?

    As you said, Jamie and her daughter did well, but have both seen regression in the last 3-4 months. And if you've followed Sue (Daffodil) on Cort Johnson's forums, she's just as bad off today as she was nearly a year ago when she started. Every three days or so she's sure she's going to die. And believe me, I know how that can feel, but thankfully am not following that risky protocol, and don't think I would even if XMRV turns out to play a role.

    With all due respect, I'd take some of the improvements that many have found from supplements, herbs, yoga (when possible) acupuncture, etc., over either of the quite toxic (and as you say, sometimes temporary) results that come from the drugs.

    You said: "These protocols and regimens are often expensive and of course not 100% reliable or everyone would be cured by now."

    We all have different causes and exposures (like mold, as in Lisa's example), so there will never be A cure...but instead, different treatments that address these different triggers or causes.

    Respectfully,

    Kelly

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  16. I just wrote a brilliant response and it didn't post:-) Now I'm too tired to type it again. Suffice it to say..this is a great post. I've had ME/CFS for 20 years and always am pleased to find a sensible blog about it.

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  17. Wonderful post, Creek! I've actually shared it on my personal facebook because I want f&f to read it too!

    It doesn't matter to me whether we agree on treatments or not (I don't think that was what this post was about anyway!) - what matters is that you've perfectly depicted what life is like for us, in a way that could perhaps help someone who is healthy grasp a deeper understanding of it.

    Thank you!

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