Saturday, May 28, 2011

Anonymous #3 - CFSAC testimony


May 10, 2011 To the Members of the Chronic Fatigue Syndrome Advisory Committee:


In 1994, I was a healthy 20-year-old college student who led an active, happy life. One afternoon in June, I was struck down by ME/CFS. Over the years I got gradually worse until I became essentially bedbound in 1999 and again in 2005.


My plans for graduate school, a career, marriage, and children have been on hold for 17 years..


I think there is a common misconception, even among doctors and researchers well-versed in ME/CFS, that this illness is not especially disabling. Even if they are unable to work, the thinking goes, most patients are able to take care of their basic needs and engage in activities of daily living.


That’s not the case for me and many people I know. Due to my extreme post- exertional fatigue, muscle weakness, and orthostatic intolerance, I’m forced to spend 95% of my time lying on my back on this mattress in my small bedroom with one window. I haven’t been able to take a shower since 2005—not even with the help of a shower chair. I bathe and clean my teeth in my bed. Once a month my elderly mother washes my hair for me in the bathtub.


My parents bring all of my meals to my room on a tray. If I want to go to another upstairs bedroom I have to be pushed in my wheelchair. I haven’t been able to go downstairs or outside since November. I’ve gone years at a time unable to leave my home, even to see a doctor. I’ve had periods of being incapable of feeding myself. I spend my worst days immobilized and unable to think, watching my bedroom get light, then dark, then light again. Outside my window, the seasons change, over and over.


My incapacity is not unique. One of my friends with ME/CFS hasn’t been able to leave her home in seven years and can’t walk; she uses an electric wheelchair to get to the bathroom. Another needed a catheter in her bladder because she couldn’t get up at all. Other friends are so weak that they can’t lift a cell phone or speak above a whisper. I’m lucky that my parents are supportive; some of the worst off have no financial or physical help from their families.


This intersection of severity and poverty turns their lives into a hellish struggle for food, shelter, and other basics of survival.


As severely ill as my friends and I are, many people are considerably worse off. At least I can type a little bit, lying down, and talk on the phone a couple times per week. But some patients have virtually no contact with other human beings or the outside world; their minds are too weak to hold a thought or to interact. They spend their years in an abyss of isolation and suffering.


How many patients are like me or worse? No one knows, because our government and advocacy groups have never studied us. Most doctors don’t know we exist because we have extreme difficulty going to their offices. We are excluded from virtually every research study, meeting and conversation about this disease.


Despite the realities imposed by severe ME/CFS, our government and even our largest advocacy group continue to portray this illness as a relatively benign condition that might slow people down for a few years, but otherwise isn’t a big deal. Average patients, according to them, should be able to undergo the CDC’s recommended treatments--exercise and psychotherapy—in addition to caring for themselves and maybe even working part-time.


For me, exercise is changing my nightgown. And the exertion of leaving my home for psychotherapy sessions—transported lying down—would set me back so far that I might not be able to lift a glass of water for a year.


Our government so devalues this illness that it spends 100 times more per capita on MS research than it does on ME/CFS research. As I struggle to brush my teeth and walk a few steps to the bathroom or bedside commode, I remember that our government considers my life only 1% as valuable as the life of someone with MS.


The government claims that ME/CFS is a poorly-defined condition, but surely I have as many abnormal test results as an MS patient: an abnormal SPECT scan; a LMW protein in RNase-L; undetectable IgA and low IgG3; POTS/NMH; and evidence for numerous infections (Lyme, Bartonella, Babesia, Erlichia, Mycoplasma, C. pneumoniae, EBV, and HHV6-B). I am also XMRV-positive.


On behalf of all the severely ill patients who can’t represent themselves at CFSAC or anywhere else, I ask you to pass vigorous resolutions on the following issues:


1. The International Classification of Diseases must accurately categorize CFS. This is an extremely urgent matter because the draft proposal is due to become final within months. The International Classification of Diseases 9 Clinical Modification (ICD-9-CM), currently used in the United States, will become the ICD-10-CM in 2013 and remain our country’s medical bible for years or decades. Unfortunately, the draft proposal for the new edition continues to place CFS in a wastebasket section of the ICD for “ill-defined conditions”. Another problem is that CFS will be renamed to CFS NOS (Not Otherwise Specified) . Excluding CFS from classification as a neurological disease under G 93.3, and renaming it CFS NOS, perpetuate the myth that CFS is a vague, poorly-defined non-disease. These actions may cause us to be labeled as hypochondriacs or malingerers, may adversely affect our insurance and disability payments, and will undermine research efforts into biomedical causes of CFS.


You must strongly advise that the CDC reclassify CFS as a neurological disease under G 93.3, the code used for CFS by the rest of the world in their versions of the ICD.


Secretary Sebelius must be made aware that this is a serious issue with a looming deadline. Furthermore, please discuss additional means of pressuring the CDC to recode CFS under G 93.3.


2. In the name of equal rights for equal disability , you must pass a resolution seeking parity in funding for ME/CFS research. ME/CFS should receive funds from Congress commensurate to the serious nature of the disease, and equivalent to what is received by similarly disabling illnesses, like MS. Asking for $100 million in funds would be a step toward righting the current gross disparity in research dollars.


3. The NIH has rejected every grant proposal from the Whittemore Peterson Institute since the publication of its landmark paper in Science linking ME/CFS to the retrovirus XMRV.


Please pass a resolution stating that this is unacceptable, and investigate why this has occurred. Is it because the Special Emphasis Panel responsible for reviewing ME/CFS grants is composed of so many dentists, psychiatrists and psychologists? If so, the review process for ME/CFS grants needs to be changed, perhaps by moving ME/CFS research out of the ORWH to NIAID.


4. Please resolve that the use of the Empirical Definition (Reeves Criteria) in research is absolutely unacceptable and should not be funded by the United States government. The Empirical Definition does not correspond to any disease entity but to a hodgepodge of psychiatric conditions, simple tiredness and unwellness.


Research based on this definition, which grossly inflates the number of Americans with CFS, is virtually meaningless. Furthermore, please advise the CDC and NIH to adopt the Canadian Consensus Criteria, or the equivalent, as the its official ME/CFS definition.


Thank you. It will take me a week to recover from writing this letter, which was the only activity I could manage for several days.


Sincerely, Anonymous

Tuesday, May 24, 2011

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.

Sunday, May 22, 2011

An open letter to Wanda Jones

Dear Dr. Jones,

I am addressing my concerns to you because you were the Designated Federal Officer for the CFSAC meeting on May 10 and 11 of this year. I understand that future responsibility for CFSAC is passing to Nancy Lee, but you are responsible for the events that transpired at that meeting.
You were aware that people who were attempting to attend the CFSAC meeting were turned away from the HHS building on the second day, May 11. I know of at least eight people, myself included, who were told by the guards at the entrance to the HHS building that the CFSAC meeting was not a public meeting, and we were not permitted to enter the building unless we were on “the list”. This is obviously false. The Federal Register states that the meeting is open to the public. Some people were also told by guards that we were required to register for both days of the meeting. I have attended three previous CFSAC meetings; registration to attend the meeting has never been required. Four of those who were denied entrance on May 11 had entered the building without challenge on May 10. All of those denied entrance had travelled a considerable distance with the attendant expenditure of time, energy and money, and most were disabled patients.

Later we were told that there was a limit to how many people could be in the room because of fire codes. This clearly points to the need for planning for a larger room or some way to handle overflow. In any case, information obtained from someone in the room stated that all seats were not filled on the morning of May 11. I observed that there were many empty seats in the afternoon when I was finally allowed in.

Staff indicated that these new policies had come from you. Sick patients and their family members spent money and time to get to Washington to attend a public meeting in a building which, as taxpayers and citizens, we own. Several people insisted on their right to attend the meeting and were ultimately admitted but were forced to wait at the entrance to the building for a long period of time. At least one person assumed he would not be admitted and left. This should never have happened. It must never happen again.

Turning to another matter, I have heard of at least four instances where members of the public were prevented by CFSAC staff from giving written information to committee members and, in one instance which I myself observed, even from giving a document to another audience member:

Pat Fero was not permitted to make copies of her excellent summary of recent NIH funding available at the back of the room.

Meghan Shannon was not permitted to pass out copies of her testimony and other literature to Committee members.

Charlotte von Salis was not permitted to give copies of a petition regarding concerns about the CFIDS Association of America or copies of the Canadian Consensus Definition, which were both mentioned in her testimony, to Committee members.

I personally observed an incident where Ms. von Salis was prevented from giving a copy of the condensed version of the Canadian Consensus Definition for ME/CFS to another audience member. A CFSAC staff member told her to "close her box and put it away".

I am not an attorney, but it seems to me that these incidents are violations of these three citizens' right to free speech and assembly. Meanwhile, I’ve been told that you yourself were observed distributing Bob Miller’s testimony to Committee members. Why was his testimony treated differently than Ms. von Salis’ and Ms. Shannon’s?

At past meetings, literature and/or copies of testimony were available at the back of the room. Information was passed freely between audience members and between audience members and Committee members. Why were policies arbitrarily changed without notice at this meeting?

People spend time and money making copies of testimony and other documents for distribution to Committee members and audience members. This exchange of information is vital to the advisory role of this Committee. There is no excuse for limiting the flow of information to Committee members as long as it does not disrupt the meeting. I cannot think of any reason why patients should not be allowed to exchange documents among themselves or distribute them to interested Committee members. We live in a democracy. We have freedom of speech. We are citizens of the United States of America.

Security at the meeting was extremely tight. We were told it was because of bin Laden's death. Meghan Shannon has talked with someone who works at the FDA, and was told there was no heightened state of alert at that agency on May 10 and 11. Several people were admonished in loud voices when on their way to lavatories or the cafeteria. This is an unjustified invasion of privacy. Usually only small, naughty children and prisoners are watched and spoken to in this way. Were staff members instructed to be insulting to patients and to raise their voices when they spoke to them? I observed no misbehavior among the meeting attendees. What can possibly justify treating law-abiding citizens, many of them disabled, like naughty children or criminals?

I was not permitted to remain in the conference room during lunch on the first day, which I wanted to do to get a little peace and quiet. Is this reasonable accommodation for disability? We have not been subjected to this level of scrutiny at past meetings. It is not clear why a group of disabled patients are treated as though they are a threat their own government. Our goal is to educate government officials about the severity of our disease and contribute to the solutions for the problems of one million Americans with ME/CFS. The current treatment of ME/CFS patients is a national disgrace.

The events that happened at the CFSAC meeting on May 10 and May 11, 2011, should never happen again. Attendees should not be shouted at. Attendees should be free to distribute literature to Committee members and to each other. Attendees should be allowed to rest in the conference room whenever they need to. Attendees should be free to come and go to the cafeteria and lavatories at will. These are basic rights. Above all, this is a public meeting. All who wish to attend should be accommodated.
It is surprising to me that these issues even have to be addressed. Who would think that American citizens would be treated in this way?

Finally, all of the Committee’s recommendations should be reviewed at the end of every meeting. Most patients are not able to watch or attend the entire two days of meetings. When I spoke to several people who attended or watched the meeting, including two Committee members, I got several different versions of the recommendations. Even the two Committee members differed in what they thought the recommendations were. It is important that everyone involved in the meeting have a clear idea of what the Committee’s recommendations are, as well as what progress has been made on previous recommendations. It is very important to review the recommendations during the time allotted for that purpose in the last session of the meeting, so that everyone understands them. Given that the meeting was adjourned almost an hour early, there was plenty of time to do so at the May meeting.

The recommendations from the May meeting are not yet listed on the CFSAC website. When will the recommendations be posted?

I am posting this letter on the internet, because I think it is important that people know what occurred at this meeting. I have also sent an abbreviated version to the White House. Many people will be interested in your reply.

Of course, many people are grateful
for what you have done for the ME/CFS patient community in the past
. It is unfortunate to have to ask you to address these issues now.

Sincerely,
Joan Grobstein, M.D.

Saturday, May 21, 2011

Please vote for the Whittemore Peterson Institute and ME on Chase Community Giving!

Vote for WHITTEMORE PETERSON INSTITUTE FOR NEURO IMMUNE DISEASES on Chase Community Giving!

By NKR:

Every single vote counts! If you are on Facebook please take just a few seconds of your time to vote for the WPI - and then please encourage as many friends as you can to vote too. They need to beat several other organizations also vying for the same funds in order to win - if everyone with ME voted, they would win easily!

STEP-BY-STEP Instructions:

1. From your Facebook page, go to Chase Community Giving:

http://www.facebook.com/ChaseCommunityGiving.

2. "Like" Chase Community Giving by clicking on the "Like" button. (If you have done this before, no need to repeat)

3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.

4. Cast your vote for WPI by clicking the "Vote Now!" button. That's it! Easy!

If you would like more information about WPI and their work, please go here: http://www.wpinstitute.org/help/index.html

Thank you so much!

Thursday, May 19, 2011

Statement for InvestinME

Unfortunately, because of circumstances, I am unable to attend the InvestinME conference taking place May 20, 2011. I was asked by Invest in ME to write about the current ME/CFS situation in the USA. The following is my contribution that was presented in the conference brochure. I did not really have enough time to thoroughly work on it so I would welcome any additions or improvements that others might like to add in the comments section. It is worth reminding the reader how very important this conference is and how much direction comes out of the efforts of the directors of InvestinME including Richard and Pia Simpson. If one wants a prototype for an ME/CFS conference, here it is.

Statement:

A month ago President Obama was asked a question about Chronic Fatigue Syndrome at a news conference. The question came from Courtney Miller, the wife of CFS advocate and patient Robert Miller. For one second, ME/CFS hit the big-time. Obama answered that he had heard of Chronic Fatigue Syndrome but "did not know much about it". He said, "he would look into it". If Obama has heard of CFS, no doubt it was from Senator Harry Reid of Nevada. If Obama sincerely wants to know more about CFS, he only needs to ask his friend Senator Reid. Senator Reid was instrumental in the formation of the Whittemore Peterson Institute in Reno, Nevada. Senator Reid is the best friend of ME/CFS in the US government.

In the last year and a half, the patient voices of ME/CFS have become more spirited, consolidated and articulate. This is a very important development. This elevated collective voice can be seen in many blogs, posts, message boards and advocacy groups. Significant among blogs are those of Mindy Kitei (cfscentral.com) and Jamie Deckoff-Jones (treatingxmrv.blogspot.com) and XMRV Global Action Facebook page (http://www.facebook.com/pages/XMRV-Global-Action/216740433250). There are many worthy blogs and voices. Forums on phoenixrising.me and mecfsforums.com have many strong and clear voices. To be further convinced of the strength of these patient voices one only needs to read the current testimonials of ME/CFS patients that will be presented on May 12, 2011 at the CFSAC conference. All this increased vocal and written activity can be directly attributable to the WPI and their effort to find a cause for ME/CFS. The publication in October 2009 of an association of the retrovirus XMRV with ME/CFS ignited a broad and increased interest in this illness. The publication of this fine study stirred great interest, one that went way beyond the particulars of XMRV. The paper was a real jolt - and with ongoing repercussions.

In the past year, Amy Marcus of the Wall Street Journal and David Tuller of the NY Times each have written a series of articles on ME/CFS and on the scientific struggles that surround the association of a retrovirus (or virus) with this illness. In doing this both of them have painted a broader picture of the devastation of this illness. These articles have had nationwide coverage in the United States, and have brought ME/CFS to a higher consciousness for many people. These articles and this coverage of ME/CFS can also be directly attributed to the efforts of the Whittemore Peterson Institute. The October paper has fueled a discussion on the cause or potential cause of CFS/ME that has never been seen before at this level. Lombardi and Mikovits raised the stakes.

Meanwhile the battle over XMRV continues. In the larger picture, XMRV is a detail. The battle really is about another issue - and it is a furious fight to the death. The issue centers on whether ME/CFS is either directly virally induced or an immunological problem that is virally induced. For 25 years there have been great efforts to sink any association of ME/CFS with viruses, (or bacteria, for that matter). Very few people have been looking for such a cause, but very many people have made great efforts to squash any viral cause association. One would have to wonder why? What is the real issue here? It is difficult to comprehend. Do these people just have an individual stake in their absurdities or are there larger forces at work here? Why is there so much hostility towards this disease and the patients who suffer from it? Why is there so little research into the illness and into potential treatments, some of which are currently available?

The recent NIH State of Knowledge conference did very little to advance anything meaningful. A number of government and academic scientists did meet in the same room and exchange ideas - which are always a good idea. However, the NIH meeting itself came to no conclusions, no attempt was made to put the pieces together, no plan was made for future research to address gaps in our knowledge (as promised in the introduction to the meeting) and most importantly, no funding for research was proposed. All of this has to be seen as "by design" - or incompetence. More can be read about this on my blog, cfspatientadvocate.blogspot.com, with particular attention to the longer report that was actually not written by me.

One recent positive sign involving the government was the presentation of Dr. A. Martin Lerner at the October 2010 CFSAC Science Day meeting. Dr. Martin Lerner was invited to make a presentation on his treatment data involving antivirals in selected ME/CFS patients. I believe this was the first time that the government sponsored a talk on a potential treatment for a subset of ME/CFS patients. However, neither the HHS nor the CDC has recommended Dr. Lerner's treatment for any patients, continuing their position that there is no known cause for this illness and no known treatments.

While it is clear that the surge in articulating the seriousness of this illness can be attributed to the WPI, Judy Mikovits, Vincent Lombardi, Annette Whittemore and others, this is not to say that important research and treatment are not ongoing in other areas of the United States.

Various long-term ME/CFS clinicians have continued the struggle to understand this illness and what might work as treatments. Their good work has continued. This includes the practice of Dr. Dan Peterson, who recently made a presentation in Calgary. Dr. Peterson continues to work with some success with the drug Ampligen, as do Dr. Charles Lapp and Dr. Lucinda Bateman. Hemispherx sponsored an important conference on Ampligen in ME/CFS, detailing new studies and attempts to increase efficacy of the drug. Dr. Paul Cheney continues to work on his own treatment protocol, sharing treatment and research ideas with other clinician/researchers, including Dr. Kenny de Meirleir - and also the WPI. Dr. Cheney is doing experimental work with GcMAF and also with Stem Cells. Dr. Joseph Brewer has been working with HIV, ME/CFS and Lyme patients for many years and is interested in new treatment protocols, examining in particular biological associations between CFS and HIV patients, looking for commonalities. Dr. Brewer, too, is interacting with others. Dr. Patricia Salvato has also worked extensively with ME/CFS patients and HIV patients. She, too, is examining a broad treatment protocol based on emerging ideas combined with her vast clinical experience. There certainly are those in the ME/CFS field, including myself, who believe ME/CFS is best characterized or described as "non-HIV AIDS". Dr. Derek Enlander, who also has his eyes and ears open to new treatment protocols, is perhaps starting his own Ampligen trial. Dr. Enlander worked closely with Dr. Kerr, until Dr. Kerr was stripped of his academic job and was forced to end his very promising ME/CFS research. Dr. John Chia continues to work with enteroviral involvement in ME/CFS, building his research - with possible new treatments coming in the next couple of years.

Several researcher/clinicians have opened their own ME/CFS clinical/research operations. The first is Dr. Jose Montoya at Stanford who runs the Stanford CFS clinic. Dr. Montoya is working on a large study ferreting out the relationship of a host of pathogens associated with ME/CFS. He is working with Ian Lipkin on this study. Another is Dr. Andreas Kogelnick of Mountain View CA. Dr. Kogelnick will be speaking at the 2011 InvestinME conference. The third is Nancy Klimas in Miami FL who combines a clinical practice with a research effort that she shares with Mary Ann Fletcher and Broderick Gordon. No systematic framework is in place for these clinician/researchers to work together. No one, except for the WPI, even seems to think about this. For instance the WPI, Dr. Klimas and Dr. Montoya are all working on a cytokine array to identify patients with this illness. No one seems to have an interest in or even an awareness of, what the other is doing. As my daughter characterizes it, ME/CFS is the Wild West of illnesses.

Sparked by this InvestinME conference, more researchers and clinicians are talking to each other - and exchanging research and treatment possibilities. The positive that can be taken away is that there are many very smart and dedicated people working on this illness - additional candidates to get involved emerged at the NIH State of Knowledge conference, particularly Dr. Michael Dean, and Dr. Theoharis C. Theoharides.

We do not want to forget the contributions made by Rich van Konynenburg and his ideas about methylation blockage/glutathione depletion, Dr. Kenny de Meirlier's work with GcMAF, Marian Lemle's hypothesis of H2S involvement in ME/CFS, and Jill Belch’s important research at the University of Dundee and the important work being done with Rituxamab in Norway - to mention a few. I apologize to those whom I might have left out.

The biggest problem in ME/CFS is the public and "behind the scenes" working of what I would call the "dark force". These are the many people with "black haloes" who want to submerge these ME/CFS patients for the next 25 years - as they have done for the last 25 years. Who are these people? They are many, and it would take up too much space to name them. Some are now even dead, to be replaced by new heartless people. Since October 2009 a fresh and resourceful concerted effort is being made to stop all meaningful research into the cause or treatment of this illness. This is a continuing phenomenon and again one must ask why? What is behind this hostility and indifference to a broad and deeply suffering patient population? There are many people who seem to enjoy the negative positions that they can take relative to ME/CFS - and very few who will stick out their necks, and actually try to do something with this illness. Certainly the US government has made it clear that they are not going to directly grapple with this illness. The aggravated, grinding, mean-spirited, indifferent attacks on this illness are ongoing. Does this happen in other diseases? The answer is no, this situation is particular with ME/CFS. Why?

The bottom line is the negative forces have been splendidly successful in blunting any momentum forward with this illness. Great confusions have been generated, with many attendant sideshows of power and ego involvements that are difficult to comprehend. What are the stakes of the game that is being played?

Meanwhile a few patients taking selected antiretroviral drugs show improvements. In talking to Dr. Dale Guyer about a year ago, I mentioned that some patients were going to start taking antiretroviral drugs. Dr. Guyer suggested that he felt these medications certainly might work for a subset of ME/CFS patients, even though one does not know exactly what the drugs are hitting. Dr. Guyer has no problem realizing how sick these patients are.

It has become apparent that the WPI is developing a framework to try a number of protocols or combo protocols on patients in limited trials. Because of a lack of funding, it is possible that they might just bypass trials and start treating patients and building data. Dr. Judy Mikovits pointed out quite clearly that the WPI was not going to wait another two years to move on to the treatment of these sick patients. They feel that there is a very sick patient population of ME/CFS patients that can clearly be identified. They feel that there are the means by which these patients' immune function can be measured and tracked. They feel that there are treatments to try both on the side of pushing back pathogens and on regulating the immune system. Some of these treatments already exist, some are experimental, and some are coming down the line. From the WPI’s perspective, everything is in place to start treating these patients. The WPI is also actively looking for clinicians, researchers and drug companies to help in this effort.

The question now is will the United States government help or hinder the WPI's efforts? All signs right now indicate that the government will hinder the advance of knowledge about ME/CFS. At the end of the NIH State of Knowledge Workshop there was no indication of further plans to accomplish the stated goals of the Workshop: to identify gaps in knowledge and make a plan to solve identified problems. There is also no indication that agencies responsible for health care delivery in the United States have plans to improve the deplorable situation patients face when they try to find a doctor knowledgeable about ME/CFS. Until the U.S. government shows clearly that they are going to address these issues, patients have few choices. We must continue to support those researchers and institutions that are working independently, especially the WPI, who ignited the field in 2009. It is as yet a small spark, but we must nurture it until the causes and treatment of this disease are found.

Monday, May 16, 2011

Ben's Struggle




The above video and the text below can be found at http://www.13wham.com/news/local/story/CFS-Chronic-Fatigue-Syndrome-Ben-Di-Pasquale/g3CLUP-ROEOXNcAzkEnkmA.cspx?rss=102

Pat Fero read part of Ben Di Pasquale's testimony at the recent CFSAC meeting.

Chili, N.Y. - "You can't judge it by the name, the name is so misleading," says Ben Di Pasquale about his battle with Chronic Fatigue Syndrome. "It's not just about being tired, tired doesn't even come close to describing it... this is my reality and it might be too much for some people to take."

Ben Di Pasquale's reality five years ago was good. He was an 18-year old with lots of friends, who played sports and got good grades. In 2006 he graduated from Churchville Chili High School and went to RIT for a semester before the full reality of Chronic Fatigue Syndrome set in. It kept Ben from his life and his friends. "I would go out with them for about an hour and walk around the mall," he says. "I would come home and crash and I'd be in bed for the next couple of days just aching and exhausted."

It got worse. About to celebrate his 23rd birthday, Ben is almost completely bedridden. On a good day he can take a few steps with a cane. At 6'2 he's down to 118 pounds. He needs others to wash his hair and cut his food. In 2010 he left the house just twice, both times in a wheelchair to see doctors.

"I'm amazed that he's kept his sanity with all the things we've been through," says his dad Jim Di Pasquale. Jim retired to take care of his son. He worked for 29 years as a Rochester police officer, so he knows what hard work is. He knows what tired is. He knows CFS goes far beyond that. "Its way more than tired, it's a complete exhaustion and when you talk to him and you listen to him he sounds normal, he sounds fine."

That's part of the problem. To many doctors Ben looked and sounded fine. They said maybe he's depressed, maybe he should take more vitamins and get more exercise. Ben tried. It made things worse. He's now sick and sick of the medical community seemingly not paying attention.

He wanted to testify at a hearing Tuesday in Washington before a subcommittee of the U.S. Department of Health and Human Services but he was too sick to make the trip. Instead Pat Fero, a CFS patient and patient advocate from Wisconsin read Ben's words. It started this way: "My name is Benjamin Di Pasquale. I'm 22 years old. This past April marked my 4th year with this devastating illness. We desperately need doctors and clinicians to be educated. Please look to my experience to see how clinical ignorance can lead to disaster." Pat read as much of Ben's statement as she could fit into her five minute time frame.

Back in Chili, Ben doesn't know if he'll ever get better or if he'll ever have a life like what his friends write about on Facebook. "I'd see them going out and moving on with their lives and a lot of them going through school and having fun and that was hard to look at them and not that I wasn't happy for them, it's just I wish I was doing that with them."

The Centers for Disease Control does have a CFS section on its website but many patients at the hearing Tuesday complained it was outdated and in some cases wrong. The committee may even push to have it taken down.

So where do you turn for help?

Ben was diagnosed by Dr. David Bell who is a world renowned Chronic Fatigue Syndrome expert who happens to live in Lyndonville in Orleans County. Dr. Bell is now retired but does maintain a website.

Saturday, May 14, 2011

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."