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.

Monday, March 14, 2011

ME&CFS Patients and Researchers Share a Common Goal

Recently I've been puzzled by a couple of articles portraying a drama that simply doesn't exist. I guess they think it's a good story: Impatient Patients versus Sober Scientists. It's an odd story. It doesn't add up and I'll tell you why.

In this story we desperate patients whine and importune the scientific community, demanding that they put carts before horses and give us a cure now, but research it later. The wise scientists sigh that while they understand our concern, we're actually impeding progress by disturbing them while they work in their ivory towers in the only reasonable way: slowly and painstakingly, making certain that they won't endanger us. We wouldn't want to take a drug that wasn't proven safe, would we?

Then there's the third figure: between the Sober Scientists and the Impatient Patients stands the Rogue Researcher. She understands the patients and we adore her. We take up all her lab time with our hero-worship and tearful phone calls, but we do that because she's the only one who seems to really care. She has gone out on a limb for us, trying to push her exciting new Theory X past the Reasonable Reviewers and Dauntless Doubters in the community of Sober Scientists.

When a scientific paper is published which seems to confirm Theory X, the Rogue Researcher quickly claims vindication, but when many more papers are more swiftly published which call Theory X into question she is even swifter to discredit them.

Those pesky Impatient Patients, meanwhile, refuse to see how much progress science is making in spite of an almost complete lack of funding.

It's a fascinating story, full of heroes, villains, and victims, and you can choose for yourself which is which. But it's a lie.

The true story can be seen in part right here: http://mcwpa.org/resources/research-funding-comparison/

Thanks to the ME/CFS Worldwide Patient Alliance for the easy-to-follow chart. It shows, clearly, how woefully underfunded research is for ME/CFS in the US as compared to some other neuroimmune diseases.

Take NIH's 2012 budget for CFS versus Lyme, for example. (CFS is the only name under which the disease receives research funding in the US; the name is a separate issue and since we are discussing US government funding here I'll call it what they call it.)

There are nearly 7 times more people suffering from CFS than from Lyme, but Lyme receives more than 4 times more research funding.

But why look only at CFS versus Lyme? There are plenty of patients suffering from both, or even suffering from one but misdiagnosed with the other. We need to see more research done on both those disease. And anyway, both are in the little leagues compared to the Big Neuroimmune Disease.

My researching brain is not what it once was but I've done my best to read the CDC's 2009 budget request summary here http://www.cdc.gov/fmo/PDFs/FY09budgetreqsummary.pdf

It looks to me like with an estimated near-equal number of sufferers, the CDC allotted over 200 times more money to AIDS than to CFS.

Now, maybe you think AIDS is more serious. But CFS kills as surely as AIDS does. It even kills in the same way that AIDS does: not directly but through secondary diseases such as rare cancers and heart failure.

The difference is that CFS kills more slowly. Instead of getting sick and either getting treatment or getting dead, CFS victims get sick and stay sick for decades: sick and disabled, drawing on government disability funds and social services. Taking a long time to die, we cost a whole lot more in the long run.

Well then, do we suffer less? Is the spending lower because we just aren't really that sick? More than one doctor has publicly said no, ME or CFS patients actually are worse off:

“… I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”
-Dr. Nancy Klimas, HIV and CFS Researcher and Clinician -   as quoted in the NY Times Oct. 15, 2009

So there's really no reason for research funding to be so low for ME (or as the funding bodies insist on calling it, in this country, CFS). But the bottom line is, there's more than 200 times more money being offered for the study of AIDS, even though the patients already have treatments, the pathogen and method of transmission is already known and we already know how to prevent and to test for the disease.

ME patients have no proven treatments. The cause of the disease is still in question. Tests are being developed but meanwhile, not knowing how it's spread, we don't know how to prevent ME/cfs. So of course anyone can see that we ought to be spending more money at this point to research, and prevent the spread of, ME (or cfs).

Is it just that researchers aren't really as interested in boring old CFS as they are in exciting, glamorous AIDS? No. The glamor is where the dollars are. The motivation is where the dollars are. Even for researchers who have a strong interest in CFS research, the bottom line is, the ability to proceed is where the dollars are. Nobody can research in a vacuum, or without a lab and a paycheck. As long as there's next to no spending on CFS, there will be next to no research. That's all.

As for the Rogue Researcher part of the story, it's true that sometimes we're fortunate enough to have a researcher and/or clinician come along who cares so much about the plight of sick people that they put extra passion and commitment into their work. Those are the sorts of scientists about whom hero movies get made sometimes, and what is wrong with being a hero? Why the effort to portray the caring and committed as looking ridiculous to other scientists and being bothered by the very patients they're helping?  The most committed and caring researchers need exactly the same financial support that a cold and uncaring researcher would require to carry out scientific inquiry.

So what researchers want is the same thing patients want. We share a common goal: a reasonable budget allotment for solid science to examine the biomedical workings of ME or, if the funding agencies prefer, CFS.

That's the real story. Researchers and patients require more funding for ME/cfs research. If there is an urgency in our demands, it's not because we want to push science through too fast and end up with shoddy results. It's because strides are being made and should be followed up. Studies show the effects of exercise on cytokines, the presence of unusual proteins in spinal fluid, neurological damage evident in autopsies and yes, retroviral infection in a majority of well-defined patients. These findings should all be followed up with more research. Other avenues of biomedical inquiry should be pursued. What little funding there is should not be wasted in repeating dead-end psychological studies. Funding should be increased and allocated to serious neuorimmune study.

The urgency is also because more people are getting sick every day. To help those sick, and to keep healthy people well, patients and researchers alike demand fair funding for the study of this devastating disease.