Tuesday, November 23, 2010
Monday, November 22, 2010
The decision about who fills this position is likely to occur soon, perhaps within the next few days. It’s time to restate our opposition to Dr. Unger. Please send a new email to Dr. Monroe, Dr. Frieden, Dr. Koh and Secretary Sebelius. A suggested text and all the contact information is listed below. If you want to reword it, add to it, send it to other people, please do. This is planned as a one-time email (again), but if you want to send several emails please do. If we hear nothing back again, we may send another email (or two) in December. If possible, please also send a copy to challengeCDCcampaign@gmail.com so we have some idea how many emails are sent. It doesn’t matter if you’ve already sent one or if you haven’t. We need to emphasize how we feel about Unger and the past actions of the CDC.
This is important. Thanks for helping all of us.
Dear Dr. Monroe, Dr. Frieden, Dr. Koh and Secretary Sebelius,
I am writing to express my opposition to the appointment of Dr. Elizabeth Unger as Chief, Viral Diseases Branch at the Centers for Disease Control. In this position, Dr. Unger will be supervising the Chronic Fatigue Syndrome Translational Research Program at the CDC. Dr. Unger has served as Acting Chief, Viral Diseases Branch for several months. During that time she has shown no understanding of the importance of improving the accuracy of the CDC’s CFS website, which is referenced by physicians and patients all over the world. She has continued to allow research to be published using a definition of Chronic Fatigue Syndrome that was rejected by the Department of Health and Human Services’ own Chronic Fatigue Syndrome Advisory Committee (CFSAC) in October, 2009. She has failed to communicate or collaborate with CFS experts outside of the CDC. She has not established “progressive leadership at the CDC that can achieve efficient, meaningful progress in CFS research, clinical care, and education,” another CFSAC recommendation from October, 2009. She has not shown that she is qualified to be permanent Chief. I urge you to select another candidate to fill this important position.
Patient for years
City or Town, State or Country
Suggested recipient email addresses:
Please send a copy to: email@example.com
Here is additional contact information if you want to call, fax or snail mail:
Stephan S. Monroe, PhD
Director, Division of Viral and Rickettsial Diseases
Atlanta, GA 30329-4018
Thomas Frieden, MD, MPH
Director, Centers for Disease Control and Prevention
Atlanta, Ga 30329-4018
Howard Koh, MD, MPH
Assistant Secretary for Health, Department of Health and Human Services
200 Independence Ave., SW HHH B
Secretary, Department of Health and Human Services
200 Independence Ave. SW
Sunday, November 21, 2010
Laura Hillenbrand became ill in 1987 and has been housebound or bed bound ever since. Her list of symptoms (no doubt incomplete) culled from the Internet is listed here:
daily flu-like symptoms
vertigo, a neurological abnormality
consistently weak and dizzy (too weak to sit up or talk)
inability to stand (orthostatic intolerance)
inability to recover after exertion (post-exertional malaise)
This set of symptoms meets the 2003 Canadian Consensus Criteria of virally-induced sudden onset ME/CFS. This definition can be found here. This is a critically important document.
At the recent HHS so-called "Science Day", Dr. Joan Grobstein voiced her opinion that the above 2003 Canadian Consensus Criteria were sufficient for determining who has this illness (ME/CFS). It is her conviction that the government does not need to spend more money trying to define a disease outline - they already have one. Both my daughter and Laura Hillenbrand fall under the Canadian Consensus Criteria. (In the case of Laura Hillenbrand this is an educated guess on the part of the Patient Advocate. He has not seen her medical records and has no interest in seeing them - as he sees plenty with his own daughter.) They both have the same serious neuro-immune, neuro-endocrine illness. Many ill patients (between 67% and 84%) meeting the CCC guidelines are XMRV or MLV-related positive. They have a retrovirus of unknown pathogenesis.
Laura Hillenbrand is the public face of ME/CFS at this critical time, and has been for some time. Considering her illness state, Ms Hillenbrand has done valuable work as a ME/CFS advocate - appearing on talk shows (via tape) and radio interviews, as well as writing a wrenching account of her illness in the New Yorker in 2003. She has raised awareness of this illness nationally, perhaps more than any other individual. We owe her a great debt of gratitude.
And yet, in spite of all this, the Patient Advocate must strike a discordant note. In the last year, many things have changed in the world of ME/CFS; there has been a dynamic shift. These changes do not seem to be reflected in any of the reviews or interviews about Hillenbrand’s fantastic book.
To the Patient Advocate this seems like an opportunity missed. Here is a chance to bring two threads, two stories together – recent XMRV - ME/CFS research and the major ME/CFS figure with this illness. The public does not need to hear the old stories about CFS. They have digested Hillenbrand’s CFS and found it to be quaint. In the general public's assessment, this remarkable person has to "lounge around" while she writes her books. The public either has no idea or no interest that ME/CFS is a serious, devastating illness – and that there are answers in terms of diagnosis and treatment on the near horizon. This is not 2003. Today ME/CFS is most likely a retroviral-associated illness. We need to find well-known people to raise up this disease. This illness needs to be elevated in order to bring money and funding for research. Out there in the real world there have to be voices connected to this illness who could speak up and broadly focus the issue. We, the patients and advocates, have to find them.
The Patient Advocate would like to see Laura Hillenbrand connected in a real way to the Whittemore Peterson Institute. The WPI is the best bet to unlock her illness and bring her improvement.
Saturday, November 20, 2010
In his quest to help his daughter get better, the Patient Advocate went to hear Dr. Marcus Conant at the recent ILADS conference. Dr. Conant was one of the courageous few that clinically engaged the AIDS epidemic in San Francisco in the early 1980's. Dr Conant did not flinch in the face of this terrible burden thrust upon him. Instead he treated these near dead and dying patients - and became a great advocate for them. He knows the business of disease advocacy, and when he speaks it makes sense to listen.
Recently Dr. Conant moved from S.F. to New York, where he is a consultant. Among other things, he has an interest in this XMRV retrovirus. Dr. Conant sees many parallels of the current situation with neuro-immune illness and the early years with AIDS. An astute Dr. Burrascano invited Dr. Conant to lecture. Dr. Conant gave his lecture without remuneration.
In his half-hour lecture entitled "Lessons learned from AIDS", Dr. Conant gave a stirring talk enumerating a number of key points. The Patient Advocate has read over his notes on this lecture and Dr. Conant's advice to us follows:
"What the AIDS patient learned to advocate for was not compassion from the public, was not sympathy from the public - what they learned to advocate for was research dollars, research funds."
"Focus energies on getting money for research. Find out the etiology of this disease." (in this case he was speaking of Lyme)
"Focus on research, not suffering."
"Don't trust the press." "The press is not your friend." - they are corrupt and have another agenda.
"Congress is your last resource, not your first." "The federal government is not your friend." You first have to prove that something is there.
"Dont blame your adversaries" "Bring them (your adversaries) in, don't cut them out." Otherwise you will have to wait until they are dead - and that could be a long time. (Dr. Conant was not talking about deadly enemies here. He expressed clearly that he would not waste any time on someone whose mind he could not change. In this above quote, he was emphasizing the notion of inclusion - and of not unnecessarily making enemies)
“Develop coordinated activism" How do we best get funds to study this disease?
A month later this presentation still reverberates in the mind and heart of the Patient Advocate. This talk could not have come at a better time.
With ME/CFS, we stand at a crossroads. At this moment the government is sitting on the HHS XMRV blood study group's phase II study. The government is worried about the blood supply. The government has the data and it is pretty convincing. What will they do and when?
Meanwhile NIH research money is not coming to the WPI. The WPI funding applications have been turned down at least four times. They are having trouble getting their current research published in legitimate journals. Why is this? Whatever limited funding they have is drying up. Whether this all is by design is anyone's guess.
Meanwhile other research into XMRV is going on around the country in both expected and unexpected places, fueled by discretionary funding or siphoned off from other projects. Researchers are drawn by natural interest to this new retrovirus. Here is one recent study. And here is another (from MN, no less). These ongoing research projects hold the key to the solution of this ME/CFS XMRV-related illness. Science is the answer. The WPI and their affiliates triggered this. They tripped the switch on all this research. This flashpoint Institute needs funding in order to come up with more answers. Research is the answer. We cannot wait any longer.
(The PA wrote about Dr. Conant before, but this needs repeating)
Sunday, November 14, 2010
Saturday, November 13, 2010
With the spate of recent conferences, the Patient Advocate has seen things moving along in the larger world of ME/CFS. Currently we are in a lull - although it is clear where things are going. In the near future, the HHS XMRV Blood working group will issue a report. Although their findings are unknown, the results are painfully obvious to anyone who has been paying attention. The government has seen now the data. The question is, what will they do with it? They have a problem here. How big is anyone’s guess. At the very least, ME/CFS patients in the USA will be banned from giving blood. Most likely the government will have to undertake fishing XMRV out of 4-7% of the blood supply. This will not be cheap or easy. At this point the federal government will be exposed and their resistance to the reality of this new retrovirus will partially collapse. In the meantime the Patient Advocate expects them to try to water down the findings - as they did with the Lo/Alter paper (unsuccessfully). They will try some type of bait and switch.
Various "groups" at Stanford, in Florida and in Reno are working to complete their work on meaningful cytokine/chemokine arrays for diagnosis and treatment of ME/CFS. A few patients and doctors will continue to test existing antiretroviral drugs against XMRV-related illnesses. Labs will be testing additional drugs against XMRV and PMRV. Small pilot treatment trials or individual experiments will be or have been started with a variety of drugs, whether they be antiretrovirals, GcMAF, peptide T, rituximab, stem cells or other drugs. Some will even involve existing therapies. It is worth remembering that existing therapies have brought betterment to many virally-compromised patients. Now these therapies will be able to be tested in a more refined manner - and it is hard to imagine a situation where existing therapies will not be rolled into future treatments. The window of observation and tracking treatment will broaden
It is worth reminding the reader that the consolidation of the research comes only in the wake of the October 2009 paper. Many other clinicians and researchers over the years have made significant contribution but the WPI has been the flashpoint and they lit the match.
The Patient Advocate started this blog to communicate his experience as a patient advocate - in hopes that it might benefit others in a similar position. Over time, the content has drifted into the ongoing struggles of advocacy, and the battle over research into ME/CFS.
The subject of the blog has become bifurcated - between practicality (the daily nitty-gritty) and abstractions (research and potential treatments surrounding the discovery of XMRV). These are two different worlds in which a Patient Advocate must live: the daily grind of particulars, and the more rarified abstractions involving "potentialities". The one is very real; the other is very theoretical.
Recently, the Patient Advocate has begun an effort to find an Infectious Disease doctor in the Twin Cities - someone who will take an interest in his daughter’s case. The Patient Advocate has systematically and slowly searched out and emailed 50 I.D. doctors in the Twin Cities. Each doctor gets a letter explaining the particulars of the PA's daughter's illness and a request for help and suggestions. The PA has received ten responses, some with very general advice that indicates that the recipient did not read the email very carefully. None of the responses made a specific suggestion. The Patient Advocate has no illusions here. This is not going to be easy. This might take some time.
In the meantime the PA is going to learn the names of every I.D. doctor in the Twin Cities. Each one of these doctors is going to get the report of the HHS XMRV blood working group as soon as it is published, along with every other significant piece of information that emerges in this unfolding drama. It might take a few more years in order to get a doctor for my daughter.
This effort to find a compliant I.D. doctor conforms to the aspirations of the Whittemore Peterson Institute. The WPI is looking for or searching out I.D. doctors with whom to work. The WPI already has reached out to make a connection to Dr. Brewer, an infectious disease doctor in Kansas City, Dr. Montoya at Stanford, Dr. Burrascano in NY and Dr. Conant - all who have expressed interest or partial interest in collaborations.
Patients all over the country are looking for doctors who might be open-minded about the ME/CFS- XMRV connection. Patients and advocates ask what can they do to help? One specific thing that they can do is to try to find doctors who are willing to take on XMRV-related patients. In the Patient Advocate opinion HIV doctors are the best bet.
Friday, November 5, 2010
From his small perch in MN, the Patient Advocate looks out over the ME/CFS landscape. The PA has arrived once again in this frozen city to help his daughter. The Patient Advocate’s daughter has started a new blog here.
The internet is a funny place. Yesterday a message was left on the PA’s blog under an old post on Dr. Kenny de Meirleir. (The reader will remember that Dr. de Meirleir has said that XMRV “is not everything” in this ME/CFS illness.) The poster of yesterday’s message was a certain E.F. Ramos, M.D. The name is not known to the Patient Advocate, nor was the PA able to find out much about him from an internet search. So E. F. Ramos remains an enigma. Here is the message:
“With the help of De Meirleir and his team I’ve gone beyond them. Although he and his groups unveiled ONE fundamental pathophysiological mechanism in ME/CFS, he did not reach the ULTIMATE CAUSE of the disease. And it seems I did. So far I have tested as REAGENT 127 patients with his NEUROTOXIC METABOLITE test, and 82% became NEGATIVE after the therapy I’ve developed. Also most got real clinical improvement, or full remission. I’ll soon publish my data.”
On another blog, an October 19, 2010 message, also by a certain E. F. Ramos M.D., states:
“Hello folks, I have been studying ME/CFS for 11 years and I’m finishing a clinical research with already 148 patients, all tested with a miniaturized version of de Meirleir test. This test doesn’t detect the CAUSE, but rather a POWERFUL PATHOPHYSIOLOGICAL MECHANISM involved in ME/CFS. However, I’ve developed a unique treatment that leads to a NEGATIVE test in previously REAGENT patients, with impressive clinical improvements in most of them. Very important I have tested and treated 16 DOCTORS and NURSES with the disease but their skepticism faded with successful targeted treatment.
I’m not hunting patients, I do not intend to continue diagnosing and treating ME/CFS patients; and I am not involved with business related to ME/CFS. In fact de Meirleir just sent me the tests for evaluation; and he doesn’t even know my results. I just intend to discover how to cure the disease. Meanwhile I can only affirm the test is a good diagnostic tool, especially useful for those not acquainted with ME/CFS clinical coherence, something that takes time to achieve. Soon I will publish my results.”
Perhaps a reader can shed some light on this?