Saying No

Posted on December 4, 2015 by Jennie Spotila

lotus flower buddhaHow To Live Well with Chronic Pain and Illness is Toni Bernhard’s latest book. I’ve reviewed Toni’s previous books (here, here, and here), but over the course of years, Toni has become one of my most beloved friends. So while she provided me with an advance copy of How To Live Well free of charge, it doesn’t feel right to “review” the book. I love Toni, I love the book, but that’s not really a helpful book review. So instead, I thought I would share how I engage with the text and apply Toni’s lessons in a way that makes sense for my life.

I’m going to out myself right now by revealing the hardest – absolute hardest – lesson that I am trying to learn from Toni: saying no as an act of self-compassion. Toni writes about this in chapter 4 of How To Live Well:

Unless saying yes would be true, kind, and helpful to me, I’m working on saying no.

Toni shares that it is hard for her to do this because she was raised to accommodate others. I was raised to put my family first above all else, and then to put meaningful work above all else. I learned by example that my personal comfort and health do not come first. And I have also learned through hard experience that this is a recipe for disaster when coupled with a chronic disease.

The first part of Toni’s test is whether saying yes would be true to yourself. She explains:

When you become aware that it might be time to say no, either to what you’re doing (such as continuing to work) or to what others are asking of you, stop and ask yourself what would be true to yourself. Will your response reflect your values?

This is so hard for me in the realm of advocacy. Over and over, I hold my work and participation to a high standard. I participate in advocacy precisely because it reflects my values. But Toni’s test doesn’t stop with that. She goes on to say:

Will it ease your suffering – mentally and physically – as opposed to intensifying it? Finally, ask yourself what the self-protective and self-compassionate response would be in this situation.

I completely understand why so many patients take breaks from advocacy, or never get involved much in the first place. ME/CFS advocacy is like David facing Goliath without his slingshot. It is a hard uphill slog each and every day because there is so much resistance to progress. It’s not impossible, and it’s not without successes. And there are certainly many allies to collaborate with. But for ten years, I have persisted in advocacy despite the fact that it intensifies my physical suffering. I was too sick to go to the P2P meeting last year, but I did it anyway. I was too sick to give my IOM presentation, but did it anyway by phone only because I had a high fever and had spent three days in bed. I throw my body down on the train tracks more often than not. But stepping back would not be true to my values and ethics, even though it would ease my suffering. How to reconcile these conflicting impulses? I don’t know.

The second part of Toni’s test is whether saying no would be kind and helpful to yourself. She writes:

In working with this test, I apply helpful to what I think would benefit my emotional and mental well-being. Then I apply kindness to my body. Often what’s helpful to my mind is not kind to my body . . . This means that even if saying yes would be uplifting mentally, if it’s not also kind to my body, I should be saying no.

I don’t do this. I prioritize what benefits me emotionally much more than what would be kind to my body. As just one example, I attended a concert with several loved ones before Thanksgiving. I knew I would love it, and in fact, I was completely transfixed by the experience. And I used my wheelchair to minimize the strain on my body. But going out at night always induces a crash. In making the calculation to do something like this, I usually decide I don’t care how much it hurts afterwards. In fact, if I did not sacrifice my physical comfort, I would likely only leave home for doctor appointments, and would have even less of a life than I do now.

I also faced this calculation during the last two years my mother was sick with cancer. I helped my Dad take care of her, making it possible for him to keep working. I can’t drive or do housework, but I kept her company, supported her emotionally, and kept her eating. And every time I came home from staying with her, I crashed. My husband would take care of me, and then I would go back for the next treatment cycle. I was too sick to be doing this, I was too sick to be in the hospital with her as much as I was at the end, too sick to stay with her for the days of hospice care. But I did it anyway. I gladly sacrificed my physical comfort and even perhaps my long-term health in order to take care of my Mom. And I am so glad that I did. I absolutely treasure that time I had with her. Saying no would have protected my body but injured my soul.

Toni has faced this too. She writes,

I used to let what I thought would help my emotional well-being trump what I thought would be kind to my body – and that may be warranted on special occasions . . . This may not be the case for everyone but, for me, a day spent in bed feeling terribly sick almost always wipes out whatever emotional benefit I gained from the evening [out].

I don’t see this as black and white, and I don’t think Toni does either. Sometimes we have to tip the balance toward emotional well-being over physical comfort. But what I’m trying to learn from Toni is to tip the balance a little bit more towards protecting my physical well-being. My instinct, especially where my family is concerned, is to say yes even when I know my body will suffer. I’m trying to dial it back, and be a bit more selfish self-compassionate than I am naturally inclined to be.

How To Live Well is, like Toni’s other books, very compassionate and gentle. She concludes the chapter on saying no by saying, “Think of it as a practice. That way, you won’t hold yourself to too high a standard.” This is one reason why I find Toni’s books to be so helpful: she only makes suggestions and shares what works for her. Try it, experiment, and see if it works for you. But if not, that’s ok.

For me, deep reflection on Toni’s writing reveals the wisdom behind her practical advice. Each chapter in How To Live Well is short and seems straightforward. But I find layers of meaning and lessons in each short chapter. So I’m practicing. “No” is not as comfortable a word for me as it should be, but I’m practicing.

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A Year of Thanks

Posted on November 24, 2015 by Jennie Spotila

bigstock-Gratitude-37954498This year has been hard, y’all. HARD. Sometimes I think that my Mom’s death took a scoop of my soul along with her. And then just over six months later, my husband (my caregiver, my best friend, my everything) had a stroke. So when I say this year has been hard, what I really mean is this year has been a journey through a dark, terrifying, life-changing, earth-shattering, health-destroying, nauseating, twisting tunnel that we do not quite see the end of yet. HARD.

And so it is time to give thanks.

I am grateful for everything my mother taught me, from how to read a scientific paper, to how to make meatloaf, to how to nurture others, to how to be a feminist.

I am grateful – so overwhelmingly grateful – that my husband is alive, still my caregiver, my best friend, my everything. I am grateful to the healthcare professionals who have helped him on his recovery, and grateful that we live near a city that has some of the best medical help available in the country.

I am grateful to our families and to our friends, both the old friends who have come through at every turn and the new friends who have shown up. And I am especially grateful to my friends whom I mostly know through the phone or email, but who are just as dear to me as the friend who can give us a ride to the ER on a Saturday afternoon.

I am grateful to my own body, for not collapsing under the weight of this year. Well done, body. I’m trying to take care of you. I am grateful to my own healthcare team for playing its role in keeping me going.

This week, especially, I don’t want to focus on HARD. I just want to treasure all the gratitude I can make space for in my life.

Thou knowest full well, O my God, that tribulations have showered upon me from all directions and that no one can dispel or transmute them except Thee. – The Bab

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Add Your Voice to the Call to Investigate PACE

Posted on November 18, 2015 by Jennie Spotila

(reprinted with permission)

20120818_boom_volumeTwelve U.S. ME/CFS organizations have called on the Centers for Disease Control and Prevention (CDC) and Agency for Health Research & Quality (AHRQ) calling on them to investigate the PACE trial concerns outlined by David Tuller and then take the steps needed to protect patients. The letter to Director Thomas Frieden of the CDC and Director Dr. Richard Kronick of the AHRQ can be found here.

Take Action

You can add your voice by signing this accompanying petition. While the petition is directed to the CDC and AHRQ, their response will affect other countries as well, so we encourage people from all countries to sign.

Background

Recently, journalist David Tuller, DrPH, published an investigative report outlining serious concerns with the conduct, analyses, and results of U.K.’s £5 million PACE trial for chronic fatigue syndrome. PACE investigated the efficacy of cognitive behavioral therapy (CBT) and graded exercise therapy (GET)

Since then, other researchers and journalists have voiced their own concerns with the fundamental problems in the trial. Most recently, Julie Rehmeyer wrote an excellent overview of the situation in Slate Magazine and six researchers called on The Lancet to “seek an independent re-analysis of the individual-level PACE trial data.”

The PACE treatment approach is based on the theory that the debility of ME/CFS is caused by presumed deconditioning, which is the result of patients’ belief that they have an organic disease and that activity will harm them. CBT and GET is claimed to lead to improvement and even “recovery” by reversing patients’ “illness beliefs,” “fear of activity,” and deconditioning.

PACE is hugely influential in how patients are treated in the media, by society, and especially in medical practice. In the U.S., many ME/CFS clinical guidelines, including those of the Centers for Disease Control and Prevention (CDC), recommend CBT and GET, based in part on the PACE trial. This is true even in medical education and clinical guidelines published since the 2015 Institute of Medicine (IOM) report. The IOM report makes it clear that the problem is not deconditioning. It states that the hallmark of the disease is a systemic intolerance to exertion, which would be exacerbated by PACE’s treatments.

The impact of PACE is also seen in scientific evidence reviews. In 2014, the U.S. Agency for Healthcare Research and Quality (AHRQ, part of HHS) recommended CBT and GET, based in part on PACE, which it ranked as a “good” study. This is significant because the AHRQ Evidence Review can be used to support CBT and GET recommendations in future journal articles and in the clinical guidelines of any country. This evidence review already has been used for this purpose in at least one U.S. clinical guideline.

Even aside from concerns with the conduct of PACE, the AHRQ Evidence Review recommendation for CBT and GET for all ME/CFS patients is questionable since the review itself acknowledged that PACE’s Oxford definition was overly broad and could include patients who do not have ME/CFS. NIH’s 2015 Pathways to Prevention report felt this problem was so serious that it called for the Oxford definition to be retired.

Continuing to use PACE and similar Oxford definition studies to support treatment recommendations for all ME/CFS patients is an issue of grave concern because it confuses doctors on the nature of the disease and results in medical treatment that can harm patients.

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A Request That Should Not Be Ignored

Posted on November 13, 2015 by Jennie Spotila

20120818_boom_volumeSix scientists have sent a joint letter to the Editor of The Lancet asking for an independent re-analysis of the PACE trial data.

The letter, published today on Virology Blog, is signed by Dr. Ron Davis (Stanford), Dr. Jonathan Edwards (University College London), Dr. Leonard Jason (DePaul University), Dr. Bruce Levin (Columbia University), Dr. Vincent Racaniello (Columbia University), and Dr. Arthur Reingold (UC Berkeley). It states:

The PACE study was an unblinded clinical trial with subjective primary outcomes, a design that requires strict vigilance in order to prevent the possibility of bias. Yet the study suffered from major flaws that have raised serious concerns about the validity, reliability and integrity of the findings. The patient and advocacy communities have known this for years, but a recent in-depth report on this site, which included statements from five of us, has brought the extent of the problems to the attention of a broader public. The PACE investigators have replied to many of the criticisms, but their responses have not addressed or answered key concerns.

After summarizing the main flaws of the PACE trial, examined in detail in David Tuller’s series published on Virology Blog, the letter concludes:

Such flaws have no place in published research. This is of particular concern in the case of the PACE trial because of its significant impact on government policy, public health practice, clinical care, and decisions about disability insurance and other social benefits. Under the circumstances, it is incumbent upon The Lancet to address this matter as soon as possible.

We therefore urge The Lancet to seek an independent re-analysis of the individual-level PACE trial data, with appropriate sensitivity analyses, from highly respected reviewers with extensive expertise in statistics and study design. The reviewers should be from outside the U.K. and outside the domains of psychiatry and psychological medicine. They should also be completely independent of, and have no conflicts of interests involving, the PACE investigators and the funders of the trial.

That statement I placed in bold – “Such flaws have no place in published research” – is absolutely true. It is something with which no rigorous scientist can disagree. It is to the advantage of The Lancet and the PACE investigators to have such an independent re-analysis of these data. Unless of course the PACE investigators are concerned an independent re-analysis would not confirm their results. In that instance, I can understand why they would resist. But surely The Lancet would like to have independent confirmation to protect its own reputation.

I am quite certain that I am not the only advocate who, when discussing science, has been dismissed because I do not have “PhD” after my name. This is most definitely true for the advocates who have spent years gathering information, filing requests for data, and conducting their own analyses of the PACE papers based on those data they could actually get their hands on. These advocates have been writing about the PACE defects for years, and they have been ignored. Worse, they have been dismissed as “vexatious,” as a “vocal minority,” or “motivated-intruder.” Some researchers have also published critiques of the PACE trial, but their critiques have not been much more successful than that of advocates.

David Tuller’s investigation of the PACE and FINE trials took this to another level. Nearly 10,000 advocates (as of this writing) have signed the petition calling for the retraction of misleading PACE claims and release of the raw data to independent investigators. Dr. James C. Coyne, blogging for PLOS publications, has urged release of these data. Coyne quotes Dr. Jon Merz, a prominent bioethicist, as saying, “The litany of excuses – not reasons – offered by the researchers and Queen Mary University is a bald attempt to avoid transparency and accountability, hiding behind legal walls instead of meeting their critics on a level playing field.”

Today’s letter from six well-respected scientists to The Lancet turns up the volume yet again. It is time to test the PACE data on a level playing field.

This is no different than the cacophony of calls for replication of the XMRV finding, which turned into demands for retraction when it was clear that those data were deeply flawed. Good science is self-correcting, but it requires rigorous and ongoing testing for assumptions and biases.

ME/CFS has spent most of the last 30 years on very uneven ground in research funding, diagnosis and treatment, and in the quality of some science. We deserve better. The call for an independent re-analysis of the PACE data can no longer be ignored.

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Someone Had To Say It

Posted on November 10, 2015 by Jennie Spotila

A long story about this moment in ME/CFS research and advocacy by journalist Virginia Gewin was published in Mosaic, a publication of the Wellcome Trust today. The article includes a great profile of Dr. Lenny Jason, coverage of the PACE trial and UK research, and includes quotes from Mary Dimmock and myself, among others. Here’s what I had to say:

Spotila thinks NIH views patients as “a pain in the ass”. “Maybe we are, but are we more of a pain in the ass than other groups waiting 30 years for improvements?” she asks. “I’ve been sick for over 20 years, my entire productive time of life is gone. I’m stuck in my house and couldn’t have kids. But that’s just me and I’m not even the sickest person.

“The pain, disillusionment, anger and frustration comes from watching the government not deal with this problem for 30 years,” she says. “If they listened to what people have been through, it would change opinions.”

I might take some heat for saying that NIH sees ME/CFS patients as a pain in the ass. But I have personally experienced that vibe from some people at NIH (not all!). And I absolutely believe that NIH (and HHS) does not understand where our anger comes from, and how they have contributed to it through their own inaction and inattention.

But this interview was conducted months ago, when I was still fighting with NIH over the misplaced P2P comments (a story which is still not over, by the way). Now we have the potential for more action and funding at NIH. And Dr. Vicky Whittemore is quoted in the story, acknowledging:

“We need to hear the concerns of the community,” she says. “At different meetings, I’ve seen these patients get cut off; people be rude to them, roll their eyes. It’s so disrespectful.”

We are a pain in the ass; I have personally been a pain in the ass to NIH and HHS on occasion. But you know what? You have to be a pain in the ass to get attention. You have to make people uncomfortable to catalyze change.

We have an opportunity now to make good on that change. If NIH is willing to listen, then let’s talk. If Dr. Collins wants to “start fresh with the patient-advocacy community,” as Brian Vastag says in Gewin’s article, then I am all in. I’ve seen the impact of having a patient representative participate in the FDA Working Group. If NIH is willing to change its orientation towards ME/CFS research and the advocacy community, then I will not let this opportunity slip.

Like I said in my post on the NIH plan: Let’s do this. We’ve waited long enough.

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FDA Progress on Measuring Outcomes

Posted on November 9, 2015 by Jennie Spotila

I have an update on the progress of the ME/CFS Outcomes Measures Working Group working with FDA.

As I reported in March 2015, the FDA helped convene a Working Group comprised of representatives from FDA, NIH, CDC, and academia in order to create and qualify a clinical outcomes assessment tool for ME/CFS. This is critically important in the drug development process. If FDA officially qualified an assessment tool, then it could encourage drug developers to get into the ME/CFS area. Such a tool does two things for drug developers: a) it saves the money of creating and qualifying the tool and b) they know that FDA will accept use of that tool in clinical trials.

I am happy to report that our effort to create the tool has officially been accepted into FDA’s Clinical Outcome Assessment Qualification Program. This means that FDA has reviewed and provided guidance on the design of a study to create the tool. The Working Group plans to test whether items from NIH’s PROMIS question bank are applicable in ME/CFS.

The Working Group understands that this is not simply a matter of measuring fatigue. In fact, figuring out how to measure post-exertional malaise is one of the puzzles we are tackling. It may turn out that PROMIS items don’t work for the ME/CFS population, but we need to test that. Starting from scratch to create a new measure takes much longer and is more expensive.

Right now, we are actively seeking funding for the study. I’ll keep you posted as things develop.

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The NIH Plan

Posted on November 4, 2015 by Jennie Spotila

Green-Start-Now-Button(updated November 9, 2015)

Unless you have been avoiding the internet for the last week, you already know that NIH has made a big announcement regarding its plans for ME/CFS research. Dr. Francis Collins has made some remarkable and welcome statements in the press:

Given the seriousness of the condition, I don’t think we have focused enough of our attention on this. (from The Atlantic)

Give us a chance to prove we’re serious, because we are. (from Science Insider)

Personally, I have waited a very long time to hear the Director of NIH make statements like this. But the details of the new plan are of primary importance, and sometimes difficult to come by.

The biggest news, in my opinion, was first mentioned in the Science Insider piece: that a new request for proposals would be issued for extramural research. In an NPR article today, Dr. Collins said that “It will be substantially greater than the current five or six million a year. We are going to ramp this up.” This is huge progress, especially if the new request is an RFA, because those have a guaranteed amount of money attached.

Researchers and advocates have been asking for an RFA for the last ten years, so the confirmation that we may finally get one is extraordinarily good news. But the real question is whether NIH and advocates define “substantially more” the same way. The last requests from the CFS Advisory Committee, the IACFS/ME, and members of Congress were for $7-10 million, and perhaps that would be a realistic expectation. But given the needs identified in the P2P report, and the thirty years ME/CFS research has spent in Siberia (as Bob Miller put it), I’m not sure we can cry victory over that kind of number. It also matters how well targeted the request for proposals is, especially in terms of case definition and types of studies. Fatigue research won’t cut it, in my opinion. Dr. Collins said the idea is to award the money in FY2016, so we should get these details soon.

The second piece of good news, confirmed on NPR today, (see update below) is that ME/CFS research will be overseen by the National Institute of Neurological Diseases and Stroke. There was initially confusion about whether this meant just the  Trans-NIH ME/CFS Working Group would move, or whether ME/CFS research itself was going to have a home at the Institute. Having an Institute home is extremely important, for three reasons:

First, being assigned to an Institute means that ME/CFS will be included in an Institute’s strategic plan. To my knowledge, that has never happened. As NIH moves increasingly towards use of strategic plans to guide funding decisions and reporting to Congress, having someone thinking about ME/CFS in that context is critical.

Second, being assigned to an Institute means that ME/CFS has a chance at getting a piece of the Institute’s budget. The Office of Research on Women’s Health, where we’ve been for many years, does not have a research budget. In 2014, funding for ME/CFS research grants was cobbled together from four Institutes (NINDS, NIAID, NIMH, NINR) and the Office of the Director. We’re not talking a lot of money, so that represents tiny investments from each of those sources. Undoubtedly other Institutes will continue to be relevant in funding ME/CFS research (especially NIAID), but having a home gives us a chance at a bigger slice.

Third, being assigned to an Institute should mean that ME/CFS will have an assigned Program Officer. The importance of this cannot be overstated. Program Officers are research portfolio managers at NIH, assigned to specific areas of focus. They write Program Announcements and Requests for Applications. They monitor grants once awarded. They must stay current on developments in their assignment areas and interact with the research community. After grant applications are reviewed (in our case by the CFS Special Emphasis Panel), Program Officers make funding recommendations to their Institute Councils. In other words, a good Program Officer is indispensable to research progress. (Here’s a great first hand account of being a Program Officer).

In 2014, seven different program officers oversaw ME/CFS grants. Seven. That does not mean we had seven people staying abreast of ME/CFS research and managing a portfolio. It means that no single program officer was responsible for doing so. And that is a huge loss. It is one of the barriers to the success of ME/CFS researchers in applying for NIH funding. The good news is that Dr. Vicky Whittemore at NINDS managed more 2014 ME/CFS grants than anyone else (five), followed by Dr. Timothy Gondre-Lewis at NIAID (three). So if Dr. Whittemore is assigned to be the ME/CFS program officer, we have a head start. The caveat is that she is already the program director for epilepsy, so it’s not likely she’ll be working on ME/CFS full time. But it’s a start.

Third, a new study at the NIH Clinical Care Center will bring the latest technology to bear on the “clinical and biological characteristics of ME/CFS following a probable infection” (that’s from the press release). We don’t know many details about the study, but the Clinical Care Center is one of the best medical facilities in the country, if not the world. Bringing in ME/CFS patients and working them up with every possible test is a great idea, and has been needed for a very long time.

We don’t know how much money will be invested, but the NPR story does say it will include 40 patients. We don’t know how patients will be selected. The Atlantic reported that the study will focus on patients left “permanently impaired” after an acute illness, but the NIH press release said that the study “plans to enroll individuals who developed fatigue following a rapid onset of symptoms suggestive of an acute infection.” (emphasis added) We don’t know if the study will focus on the newly ill, or what case definition(s) will be employed. And it’s likely that some of these decisions have not actually been made yet. We’ll have to watch how the protocol develops, and what testing is used. This study has incredible potential to yield the answers we need, if it is appropriately designed.

Here’s the bottom line of the NIH announcement: It’s a promising start. There are a lot of details we need to know. And until we actually see how much money is on the table and how it’s spent, we can’t judge the quality of the effort.

As Dr. Collins told Science Insider, “Give us a chance to prove we’re serious, because we are.”

Ok. Let’s do this. We’ve waited long enough.

Update November 7, 2015: I continue to hear conflicting reports about whether ME/CFS research will be overseen by NINDS, including having a single program officer and being included in the NINDS strategic plan. Sources who have spoken directly to NIH continue to report different answers to this question. I’m not sure if the explanation is a lack of clarity at NIH, or that advocates don’t speak NIH’s language such that people are interpreting answers differently. I think we will have to wait and see how this plays out. If we are not included in NINDS’s strategic plan or if we do not see someone step forward to truly manage an ME/CFS portfolio, then we’re quibbling about semantics instead of solving the problem.

Update November 9, 2015: Cort Johnson spoke with Dr. Vicky Whittemore and reports that she said: “To be clear, no one NIH institute, office or center has single oversight for research on ME/CFS. We will work together through the Trans-NIH ME/CFS Research Working Group to coordinate, stimulate and support research.” That sounds to me like we do not have an Institute home the way other diseases do. We are going to have to wait and see how this plays out in order to just whether this is a good development or not.

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21

Posted on October 9, 2015 by Jennie Spotila

October 6, 2015 was my 21st “sickaversary.” I know the date because the onset of ME/CFS in my case was so sudden and dramatic.

Not a single doctor told me that I could be sick for years. Not a single doctor, as the years passed, said this might be permanent. Not until I had been sick for five years. Then, and only then, was I told that where I was at five years was likely to be where I would stay. The phrase “if you are lucky” went unspoken.

But I never believed this could happen. I never imagined being in my forties, still unable to work or to live independently. In 1994, I never would have said or imagined or even feared that I could still be sick twenty-one years later.

In the past I have marked my sickaversaries with tears, testimony to the CFS Advisory Committee, and prayer. And hitting 21 years in 2015, which has been the absolute hardest year of my life, has basically sucked in almost every way. So for this year’s sickaversary?

I MADE A CAKE.

IMG_4722

My mother died in January. She was one of my best friends. But I am still here.

ME/CFS took my career, my independence, my dreams. But I am still here.

My husband had a stroke that could have killed him, and he is still out of work. But I am still here.

Two people I love had surgery this year. Others lost loved ones to cancer, disease, or old age. But I am still here.

I have spent the last twenty-one years suffering from a disease that almost no one cares about, that has no treatment, that leaves patients to suffer and die early deaths in isolation from a world that has forgotten about them and moved on. But I am still here.

In 2015, I have cried more tears than in the rest of my life combined. There have been days when I knew I could not take any more bad news or suffering, and then I did. There have been days when I breathed more out of habit than desire. But I am still here.

I have rested and found comfort in the arms of my loved ones and my faith. I have found strength deep in the marrow of my bones when I thought I was sucked dry of life and hope and endurance. I have continued. And I am still here.

So this 21st anniversary of the day my life changed irrevocably forever in ways I never would have chosen or foreseen? This day was not a sad day.

It was a fucking victory lap.

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A Miracle, and a Break

Posted on August 28, 2015 by Jennie Spotila

This year has been the most difficult of my life, starting with my Mom’s passing in January. Losing her was just the first in a cascade of bad news, and I made the decision to stop maintaining that laundry list because it just made me feel worse.

But three weeks ago, one of the worst and luckiest things happened to us. My husband had a stroke. Not only did he have a stroke, but he was misdiagnosed in the emergency room with vestibular neuritis. So he did not begin receiving treatment for the stroke until we got the accurate diagnosis last week.

As part of getting that accurate stroke diagnosis, we discovered that the stroke was in his medulla. One doctor told him that he was lucky to be alive, let alone walking around and not permanently disabled. He “dodged a bullet,” this doctor said. To have this type of stroke untreated for two weeks because of misdiagnosis, and to be walking/talking/breathing/swallowing unassisted just three weeks later is . . . . well, it’s a miracle.

My husband is my primary caregiver. Through the unwavering kindness and support of family and friends, we have been transported to every doctor appointment, had meals to eat, and all the emotional support that we need. But I had to become the primary caregiver in many ways, especially in making medical decisions and logistical arrangements. And because of that 2015 laundry list of bad news, I was crashed and depleted long before I had to summon an ambulance to our home three weeks ago, not even realizing that my husband was having a stroke.

The time has come for me to take a break. My use of social media, including this blog, will be extremely limited for a few weeks (at least). I will be monitoring email, but probably not responding to much of it. I am not “retiring” from advocacy, but I need to take care of my husband and of myself. That is my prime directive and top priority.

As I said, this is the worst and luckiest thing to ever happen to us. The only reason my husband is not dead or severely disabled is our good fortune. The stroke was extremely small, and the misdiagnosis did not kill him. Both of us will be ok, but we need some time.

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CFSAC Testimony, Jennie Spotila, August 18, 2015

Posted on August 17, 2015 by Jennie Spotila

Unfortunately, I am too sick to offer public comment by telephone for the August 18-19, 2015 meeting of the CFS Advisory Committee. I submitted these written comments for the record. Thank you to all of the advocates who are speaking by phone or in person.

Dollar-on-HookWhen I was a kid, I used to go fishing with my Dad. It was nothing sophisticated: just a borrowed boat on a small lake, live bait and a plastic bobber on the line. But there was a hitch. There was no way I was going to squish a live worm onto a hook. And even though my father is a herpetologist, he did not insist that I learn to bait the hook myself. He baited my hook and we fished. My Dad also did not ask me the obvious question: was my fishing strategy going to consist of waiting in the boat and hoping the fish would come to me on their own?

Yet this is the kind of fishing strategy that seems to be NIH policy as far as ME/CFS is concerned.

For the last ten years, advocates, scientists and this Committee have urged NIH to invest more money in ME/CFS research. Both the IOM and P2P reports reached the obvious conclusion that substantially more research is needed in this area. The IOM committee said, “Remarkably little funding has been made available” to study this disease, and “More research is essential.” (IOM, p. 225) This advisory committee has urged greater investment, and has repeatedly recommended that NIH issue an RFA with dedicated funding in order to stimulate this field.

Last year, NIH’s response to this Committee was that issuing an RFA “would not be an effective strategy”. On August 11, 2014, Dr. Francis Collins wrote to Representative Zoe Lofgren, “The lack of sufficiently trained individuals applying for NIH research funds to conduct ME/CFS research projects contributes to the low number of applications received and subsequently the annual spending on ME/CFS research.” This is in and of itself a remarkable assertion, since researchers like Dr. Ian Lipkin and Dr. Ron Davis have applied for NIH funding and been rejected. Are they not sufficiently trained?

Every time NIH has been urged to issue an RFA to stimulate research in ME/CFS, NIH’s response has been that there are not enough researchers or data to make it worthwhile. In other words, NIH is sitting in the boat and expecting that the fish will catch themselves.

This is not NIH standard operating procedure when it comes to other areas of research:

What these diverse initiatives share is an NIH investment policy designed to stimulate research in an area that needs development. But this policy is not applied to ME/CFS.

Worse, NIH’s current position on ME/CFS is not even consistent with its previous actions. In 2005, NIH issued an RFA on Neuroimmune Mechanisms and CFS. How could there have been enough known about the disease and enough qualified researchers to do the work sufficient to issue an RFA in 2005, but not now in 2015 when we have more data and more scientists than at any time in the history of the field?

Everyone – patients, advocates, researchers, members of Congress, the IACFS/ME, this Committee, the IOM and the P2P – EVERYONE has told NIH that more research is desperately needed in ME/CFS. EVERYONE has said that this is an under-researched area that needs an immediate infusion of money and personnel if patients are to have any hope at all for effective treatments. Everyone has said this, and NIH refuses to do what is necessary. Instead, NIH is sitting in the boat, waiting for the fish to come and fling themselves out of the water and into the boat on their own.

NIH knows how to encourage interest in under-researched fields. It declares an interest in the field, backed up with dedicated funding. In other words, simply bait the hook, and the fish will swarm the boat.

I say to NIH: Bait the hook. Go fishing. I know you will catch some keepers.

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