Dr Joan Grobstein - CFSAC testimony May 2011

Hello. I’m Dr. Joan Grobstein. I’m a physician.

Here we are again.

At the beginning of the NIH State of the Knowledge Workshop, Dr. Mangan emphasized that the Workshop was “not designed to prioritize or establish an agenda for future initiatives.” But we need to do this. In the absence of leadership from the NIH, the CDC, this committee or any other agency in the Department of Health and Human Services, I’m going make suggestions that should be implemented within the next six months.

First, I'm going to present a case.

I have Pat Fero’s permission to talk about her and her son, Casey. Pat’s acute onset ME/CFS started in 1980 with a viral-like syndrome. Casey was born prematurely in 1982. He was first diagnosed with ME/CFS at age 9 and worsened at age 15. He died suddenly at age 23. An autopsy was done. The pathologist told Pat that Casey’s heart tissue was “loaded with viruses, inflammation and fibrosis”. The University of Wisconsin lost the heart tissue blocks. The viruses in Casey’s heart were never identified.

What does this case tell us about priorities and an agenda for future initiatives?

First, it tells us that it is very likely that ME/CFS is transmitted within families. Establishing the mode of transmission should be the highest priority. As far as I know, the CDC has never investigated family clusters. It also hasn’t investigated geographic clusters for more than a decade. ME/CFS should be a reportable disease, so that clusters can be identified. To make it possible for physicians to report the disease, they must have a precise case definition. The best definition available is the Canadian Consensus Definition. It should be adopted now and disseminated to all physicians. Until we know who has and doesn’t have the disease we cannot study it. Epidemiologic studies should start immediately. Special attention must be paid to identifying the sickest, housebound patients, many of whom aren’t receiving any medical care. This is a disgrace.

Second, Casey’s disease progressed over time and resulted in death. We don’t know the natural history of either untreated or treated ME/CFS, although many people with the disease are not only untreated but undiagnosed. The CDC should conduct observational, longitudinal studies of Canadian Consensus-defined ME/CFS.

Third, it’s very likely viruses are involved in ME/CFS, and myocardial infection is possible. Japanese researchers have identified “small heart syndrome” in ME/CFS patients, which may reflect cardiac infection. Of course, other organ systems, including the CNS and Gi tract, may be infected. Sites of infection may vary from person to person. It’s urgent that associated viruses be identified and treated, if possible. New antivirals may need to be developed. The NIH and the CDC should work together to identify viruses that are associated with or cause ME/CFS. This is a very high priority.

Fourth, medical schools don’t take ME/CFS seriously. The NIH should convene a meeting of medical school leaders to educate them about the seriousness of this disease.

Finally, Casey was not treated successfully. Treatments for ME/CFS exist. Expert ME/CFS clinicians are using antivirals, dietary supplements, sleep medications, and treatments for orthostasis among other therapies, and they are improving the lives of many patients. The NIH should convene a meeting of expert clinicians to formulate guidelines for diagnostic testing and treatment.

The CDC website is inaccurate and misleading. It needs updating immediately. For example, the CDC says that tilt-table testing for orthostatic hypotension is experimental. This is incorrect. The test has been used for 15 years at Johns Hopkins, and orthostasis is a frequent and treatable finding in ME/CFS patients. The website also says testing for viruses is not indicated, yet several clinicians are having success treating viral infections. The website should cite the Canadian Consensus Criteria as the correct definition for ME/CFS. Many people visit the CDC website for information about ME/CFS. It must be accurate.

Thank you.

Mindy Kitei testimony - CFSAC, May 2011

Here is the testimony of Mindy Kitei at the recent CFSAC meeting. Mindy has a strong and clear voice and this testimony is especially powerful.

Laurel's testimony and video

In rooting around for Dr. Joan Grobstein's 2009 CFSAC testimony, I came upon once again Laurel's powerful video testimony from October 2009 CFSAC meeting. Perhaps there are a few new or uninitiated persons reading my blog this weekend. This is for them.

Also please watch this video on ME/CFS made by Laurel, ill and housebound with CFS for 13 years. It gets the major points across in a powerful, concise and beautiful manner. Laurel is the very best! Learn from her. Both these films are on youtube.

Dr. Joan Grobstein, continued

I have looked further and carefully for the video testimony of Dr. Grobstein of the October 2009 CFSAC meeting. It is no longer online. Many of the other testimonies and committee discussions are still available. (leelaplay supplies this: found it! http://www.hhs.gov/advcomcfs/meetings/index.html Look under CFSAC Oct 29-30 Day 1. I think you need Real Player (and a free down comes up if you don't have it) Dr. Grobstein is the 5th speaker at 3h 35 min. Thanks leelaplay!)

On a related matter - sitting near Dr. Grobstein at the CFSAC October 2010 meeting - I could not help noticing that Wanda Jones would not recognize Dr. Grobstein for a question.

Here is Dr. Grobstein's written testimony, which she read at the 2009 CFSAC. It is different than the online version. It is a well known detail that those presenting patient testimony have to submit an sanitized version. At the presentation they then say whatever is on their minds.

CFSAC Oral Testimony October 2009

"Hello. I’m Dr. Joan Grobstein. I’ve been a physician since 1977, last working at Children’s Hospital of Philadelphia Division of Neonatology. I’ve had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome since 1999. I’m a doctor and a patient. I‘m going to talk about science and ME/CFS.

To be blunt, scientific research on ME/CFS is a mess. Given how little time I have, I’ll focus mainly on the worst offender, the CDC. The CDC has underfunded and underinvestigated this disease since their initial involvement in the mid-‘80s. They’ve also failed to correctly define the disease. In 1994, they created the Fukuda definition, which is flawed but which has been used to define the CFS data set for fifteen years, resulting in a significant body of research. However, oddly, in 2005 the CDC redefined the data set. Perhaps they noticed research using the Fukuda definition seems to suggest physiologic explanations for ME/CFS symptoms. One wonders. In any case, using the new Reeves 2005 “empirical” definition, their estimate of the number of people with CFS in the United States suddenly jumped from one million to 4 million people. Basically, they created a new, unverified definition which defined a new, much larger data set, and they still used the name CFS for this very different data set. This is outrageous! This isn’t science--it’s a shell game.

Dr. Peter White was involved in a similar definitional misadventure in the ‘90s, also muddying the research waters. He helped develop the Oxford definition, which was actually a description of Idiopathic Chronic Fatigue, which is not CFS. Putting a prestigious name on a definition does not necessarily give it a useful meaning.

As Dr. Mikovits and her colleagues have shown so brilliantly in the past month, when researchers look at patients that meet the Fukuda & Canadian consensus criteria, they can quickly begin to discover potential mechanisms and possible treatments for this severe illness.

So how do we find our way out of this mess? We need to tidy up the literature, so we know when we’re talking about apples and when we’re talking about oranges. I suggest the following solution: Until we have a better name, call the cohort of patients who meet the Fukuda criteria: CFS-Fukuda; the Canadian Consensus cohort: CFS/ME; the Ramsey cohort: ME; the Oxford criteria cohort: Idiopathic Chronic Fatigue; and the Reeves definition cohort: Reeves’ disease. After removing CFS-Fukuda, CFS/ME and ME from the Reeves cohort, Reeves’ disease will probably consist of a group of people with Idiopathic Chronic Fatigue, various other undiagnosed conditions, and some, but not all, people with major depressive disorder. These people deserve study and treatment, but they do not have ME/CFS.

It is very important that any ME/CFS study published states in its abstract which group is being studied. A retrospective review of all previous CFS studies should be funded in order to determine what group of patients were actually studied. Research on Idiopathic Chronic Fatigue is not relevant to ME/CFS.

I suggest the following recommendations to Secretary Sebelius:

1. No taxpayer dollars should be wasted on ME/CFS research which uses the Reeves definition. All federally-funded research should use the Fukuda criteria & the Canadian Consensus Definition.

2. Abandon the CDC’s current proposed 5 year plan. Ensure that this Committee’s previous recommendation for a change in the CFS leadership at the CDC actually happens. The new leadership should propose a new 5 year plan which should then be reviewed by an unbiased panel. Meanwhile, make the taxpayer-funded data that the CDC has already collected available to all researchers to analyze.

3. If the XMRV connection to ME/CFS is confirmed, initiate a congressional inquiry into why Elaine DeFreitas’ research into retroviruses and ME/CFS was not pursued in the early ‘90s. Many people may have been harmed by this decision.

Finally,

4. Increase funding for ME/CFS research. Patients and doctors need more information. Designated funding for a collaborative trials network is imperative, as is the retrospective review previously discussed.

I could say much more, but my time is up. I have submitted written testimony. Thank you."

Dr. Joan Grobstein

I want to consider Dr. Joan Grobstein once again - as what she says is so important. I don't pretend to be able to articulate issues as well as her - and I don't think there is a finer mind in analyzing the current situation with ME/CFS. Dr. Grobstein was a pediatric physician at CHOP in Philadelphia (forced out of work by ME/CFS), one of the finest hospitals in the world (I know firsthand.). Despite being sick for twelve years, she can still reach out in any situation and put her finger precisely on the pulse. It is unfortunate that she is so ill - as the good guys could use more of her insights and expertise. For the past few years Dr. Grobstein has struggled to make semi-annual trips to DC to testify before the CFSAC committee. (I tell her not to waste her time and energy. When was the last time that a committee - particularly a government committee - accomplished anything? The short answer is - never.) Dr. Grobstein persists in the face of this known reality, and here are several of her testimonies.

The video of her October 2010 testimony can be found here. On this HHS website Dr. Grobstein is identified as "speaker 2" - an Orwellian reduction of this very smart woman. This video is worth watching. Being a government website, it, of course, takes forever to work, if in fact it does work.

Here is a written statement of Dr. Grobstein's 2009 presentation. At the moment I cannot find the video although I am still looking for it.

ME/CFS is presented to the world, especially by the press, as an astounding set of confusions. The issues are not as difficult as they are made out to be. If one is seeking clarity, one can start here - with the Canadian Consensus Criteria. This 2005 CCC criteria gives an unambiguous basis by which ME/CFS patients can be identified. Who can't see this - and why?

The Sound of a Wild Snail Eating

An Appreciation

A small book with the improbable title The Sound of a Wild Snail Eating was published in the late summer of 2010. It was written by an ME/CFS patient using the pen name Elisabeth Tova Bailey, who, by the nature of her illness, is forced to limit her contact with the outside world.

The Patient Advocate first saw this book in the hands of Dr. Joan Grobstein. As a result I have read it, and given it to various people for the Holidays. Every one of the recipients has expressed admiration for Bailey’s work.

A quote from Rainer Maria Rilke’s Letters to a Young Poet begins Part 1 and sets the tone for the book:

"Try to love the questions themselves as if they were locked rooms or books written in a foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is, to live everything. Live the questions now."

The Sound of a Wild Snail Eating is disarmingly simple but has a great reach. It is a book about observation and its implications - about gathering information from a small, seemingly insignificant source and looking for larger meaning. The work, while appearing to be the modest effort of a severely disabled individual, instead is comprised of powerful feelings and observations, proving that a story or poem or a piece of music does not have to be large to be emotionally profound.

The author of The Sound of a Wild Snail Eating was given a small woodland snail by a friend. At first mystified as to what possible purpose this gift could have, the bedridden author became curious about this other living being who was now a resident of her isolated world. Knowing nothing whatever of the nature of snails, she began, through observation, a "relationship" with the snail. The result is both an investigation of the world of snails and of chronic illness. The author cites various literary sources on snails as well as relying heavily on obscure nineteenth century scientific books on gastropods (stomach feet). She delves into dusty volumes, recording the habits of snails - their eating habits, locomotion, amorousness, strength, disguises and defenses, reproduction, and many other aspects of snail life.

Throughout the book the author's curiosity and thoughtfulness construct larger meanings from the simplest of events - the wonders of a snail in a terrarium. This book is part biography, part memory-play, part journal, part observational record, and part disease description as Bailey interweaves observations of her own physical state with gastropod lore. For a period of months the author describes, with self-deprecating modesty and humor, her snail observations and discoveries. Many of these cloak larger profundities, as the author draws parallels between the tiny habitat of the snail and the larger world. We learn all sorts of particulars about snails and their habits, as well as terms that we have never heard of: schneke, gastropods, radula, dextral, sinistral, pedal mucus, foot drinking, estivation, slime plates. Along the way the reader learns all one needs to know about slime.

While this book is ostensibly about a snail (or snails in general), it also includes finely expressed feelings describing the strange debilitating nature of this nasty illness, ME/CFS. To those unfamiliar with ME/CFS, these insertions of the disease reality might seem jolting, but to the initiated they will read as authentic and familiar . Alternating between elegant and humorous write ups of her observations and research, are the author’s personal revelations of the very nature of this dispiriting, restrictive illness and her methods for living with it. They are among the very best written. Bailey’s description of the process of receiving visitors for someone with ME/CFS, for example, is particularly moving and convincing.

Several other elements of The Sound of a Wild Snail Eating are worth noting:

This erudite book is laced with small, significant quotes from Rilke, Billy Collins, Patricia Highsmith (Strangers on a Train), Edgar Allen Poe, John Donne, Elizabeth Bishop, Emily Dickinson, Florence Nightingale and many others, thus revealing the author as a reader of great breadth and scope.

Bailey’s book is the product of a rigorous writing process: - paring down, compression, editing, and reduction make it a very powerful statement. At the end the author acknowledges the editorial help that she received. The result of this honing is a finely wrought, compressed and readable story line that contains just the essentials

On the back cover, in extremely small print, is this statement: "Author and publisher will donate a portion of the proceeds from the sale of this book to the Whittemore Peterson Institute and to a national conservation organization".

I highly recommend this book, and further recommend that the reader follow the advice of Thomas Mann of what to do when one finishes a good book: “Read it again.” The PA particularly recommends it as a gift for someone who knows little or nothing about ME/CFS, but is receptive and open to learning more. It is a splendid book.

Repost of Laurel's video

Here is an exquisite Holiday gift from Laurel. Take a look at this video. It is the one of the best that the Patient Advocate has seen on ME/CFS - perhaps the very best. Yes, it is the very best. It was made by Laurel of dreamsatstake.blogspot.com

Her blog is one of the premier blogs on this illness. The Patient Advocate only posts this video here in order to direct you to her blogsite.

The Patient Advocate recommends going to Laurel's site to look at this video - as she has a commentary on the making of it. This is a remarkably poignent and powerful video made my a remarkable woman. What a fine effort!