A voice for the most severe ME patients

It is always of interest to read about the ineptitudes of the functionaries who work for the United States Government. We must thank Dr. Joan Grobstein for her letter to Wanda Jones, outlining the abuse dished out to those ME patients who can actually move and attend a CFSAC. With these recent incongruities we are entering a zone of total absurdity and contempt. Something needs to change at the highest levels of the federal government in relation to this ME disease. They have gotten a free pass for too long and they take advantage of it with continued abuse toward these patients.

Consider for a moment the reality of this illness and of those who suffer at the very bottom. This is where the nuts and bolts of this illness presents itself and where research needs to be directed. Natalie Bouton has done a great service for the rest of us and for the uninitiated by giving us the InvestinME sponsored book "Lost Voices" which documents the most seriously ill ME patients. Soon we will be able to see an astonishingly powerful video produced by Natalie and her son Josh. It packs a wallop and presents this illness at its ground zero moment.

Another powerful articulate and sustained voice of the desperately ill has emerged recently and can be viewed here.

Dr Joan Grobstein - CFSAC videos

Dr. Joan Grobstein has testified four times at the CSFAC meetings in the last two years. What she has to say is very important and the government knows this. They are afraid of her and for good reason.

May 2011



October 2010

http://hhs.granicus.com/MediaPlayer.php?view_id=5&clip_id=99

Dr. Grobstein's testimony is Day 2 public speaker number two.

May 2010

Dr. Grobstein testified a fourth time and it is available here:

http://www.hhs.gov/advcomcfs/meetings/index.html Look under CFSAC Oct 29-30 Day 1. I think you need Real Player. Dr. Grobstein is the 5th speaker at 3h 35 min.

The text of the original written testimony follows:

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 anunbiased 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 - 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?