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Live webcast IoM meeting Jan. 27th 1:pm starting

Ember

Senior Member
Messages
2,115
bummer, i wanted to hear what enlander had to say to them.
Posted by Wildaisy: "At the IOM meeting today, January 27, 2014, Jay Spero read the following statement on behalf of Derek Enlander, M.D."
I was honored and pleased to have been asked to sign what has become known as the 'Experts' Letter,' where several dozen colleagues have expressed opposition to possibly altering or redefining the criteria of M.E. &--ampersand, not slash--C.F.S. by virtue of the pending IOM contract. If it was the case that there was opposition to the existing Canadian Consensus Criteria, then open discussion about these criteria would be more useful than closed door redefinition by a panel where the majority are not known to be familiar with the disease, Myalgic Encephalomyelitis. At present, the Canadian Consensus Criteria are used by a majority of experts who diagnose and treat this disease; they adhere to the concepts defined by Dr. Melvin Ramsay, who helped pioneer research in this disease, in contemporary clinical settings. Were discussion and debate even necessary, one million dollars could still have been saved--a not insignificant percentage of NIH research funding dollars in this area. Given the paucity of funds allowed for research and study of what we know as Chronic Fatigue Syndrome, it seems, with all due respect, to be a shameful waste of money. Open discussion on the IOM method of approach has not been made available; we can only hold out hope that the result is closer to one of the more strictly defined criteria. However, given all we have seen recently, marvelously chronicled by several patient-bloggers (notably, Jeannette Burmeister, Jen Spotila, and Erica Verrillo), it seems inevitable that any preference given to the "Evidence Base," may produce a set of loose criteria. In this area, where the 'evidence' has long been grossly distorted, and to date has produced a flawed, inaccurate model of this very serious physical disease, such criteria may well describe other conditions or disease models that are, simply put, not the disease described by Ramsay. A group of us are forming the "Academy of M.E. & C.F.S. Physicians," composed of experienced clinicians and researchers familiar with the disease, M.E., and related conditions. The Academy will be an Independent resource for government, corporate and private groups to derive information relating to the latest research, diagnostic methods and treatment approaches. Training of young physicians in this area will be of prime importance. Dictatorial direction will continue to do a grave disservice to a long-suffering patient community. My patients deserve better, as does anyone suffering from this horrible disease, and I must register my protest at this sadly unnecessary contract. Derek Enlander, M.D. New York M.E. and C.F.S. Center at Mt. Sinai 860 Fifth Avenue, New York 10065
 

Ember

Senior Member
Messages
2,115
Susan Kreutzer- speaking on behalf of mecfsforums; 5,002 signatures against IoM contract! Maybe this was why mecfsforums was not invited to speak.
Posted by Wildaisy: "Here is the IOM statement from MECFSForums, sent in written form to IOM and also presented verbally to IOM by Susan Kreutzer."
MECFSForums is an internet forum for people who suffer with Myalgic Encehalomyeitis (M.E.), which is also sometimes called “Chronic Fatigue Syndrome” or “CFS” and friends of M.E. sufferers. This forum began in June 2010 and now has 6850 members. MECFSForums was not invited to present information to the IOM at the January 27 meeting. (http://www.mecfsforums.com/)

Perhaps MECFSForums was not invited to present because a forum administrator, Patricia Carter, created the Petition to Stop the HHS-IOM contract and accept the CCC definition of M.E. on October 7, 2013. This petition now has more than 5000 signatures.

https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/ )
The Petition to Stop the HHS-IOM Contract and Accept the CCC Definition of ME is solid evidence of the position of thousands of ME/CFS stakeholders on the contract HHS has made with the Institute of Medicine to define ME/CFS--and these thousands of patients and friends oppose this contract.

A poll of the forum membership was taken asking forum members’ positions as to the IOM contract. The result was that 100% of members who voted agree with this statement: “I oppose the contract and I support the experts letter urging HHS to adopt the CCC now.”

This Statement from MECFSForums represents the views of thousands of M.E. patients, families, caregivers and friends in opposition to this IOM contract. Millions of people worldwide suffer from Myalgic Encephalomyelitis (M.E.).

For decades, sufferers have been left with no real biomedical research and no effective treatments. Now the HHS is attempting to prolong this time by contracting with the Institute of Medicine (IOM) to redefine the illness. This is unnecessary because experts in the illness, researchers and clinicians alike, have reached a consensus that the Canadian Consensus Criteria (CCC) should be used for both research and clinical purposes. They have sent an Open Letter to Secretary Sebelius expressing their support for the CCC. (See: http://www.mecfsforums.com/wiki/Open_Letter_to_Hon._Kathleen_Sebelius_9/23/2013 and http://www.mecfsforums.com/wiki/Ope...etary_of_Health_and_Human_Services_10/25/2013 ).

This HHS contract with IOM would simply be a waste of precious resources.

This is the text of the petition which now bears more than 3700 signatures: “We, the undersigned people suffering from Myalgic Encephalomyelitis, along with our families, caregivers and friends hereby ask Secretary Kathleen Sebelius to cancel the contract HHS signed with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria” for ME/CFS. We further urge Secretary Sebelius to respect the consensus reached by a group of experts and adopt the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS.”

We ask this IOM committee to be dissolved now and we request that HHS adopt the Canadian Consensus Criteria (CCC) as the research and clinical definition for ME/CFS.

Patricia Carter, Esq.
Administrator
http://www.mecfsforums.com/
 

Ember

Senior Member
Messages
2,115
Posted by Wildaisy: "Charlotte Von Salis read this statement for Maryann Spurgin, ME Society of America"
Testimony by Dr. Maryann Spurgin, Founder, Myalgic Encephalomyelitis Society of America

There are people in this country who spend decades of their lives in silent, darkened rooms, crippled and in excruciating pain. They have orthostatic intolerance, of variegated causes (low blood volume, cardiac diastolic dysfunction, and haemotological and RBC pathologies): they are unable to sit up or to stand. They suffer hyperacusus: they cannot tolerate any light or sound without becoming severely more ill and without suffering additional pain that does not subside, nor can they summon the strength to speak. Some are too weak to feed themselves, others paralyzed. Many cannot even focus on a thought. A significant group of such patients have died of complications of this disease, some at a young age, others some 20 years earlier than their peers of similar backgrounds and socioeconomic stati, according to a paper by Dr. Leonard Jason.

Known as Myalgic Encephalomyelitis, this disease has a long history; it was recognized by the World Health Organization as a neurological disease in 1969.

These severely ill people, and others with the same or similar yet milder symptoms have been tossed into a pot with a group of other individuals whose symptoms look strikingly different: persons with depression, some with something so mild as unspecified fatigue, others with pain syndromes like fibromyalgia. These are not the same diseases as Myalgic Encephalomyelitis.

This pot is what the government calls “Chronic Fatigue Syndrome,” a name that was the government's 1988 response to an outbreak of M.E in Lake Tahoe in the early 1980's, the Holmes criteria. Unfortunately, the Holmes criteria was broadened in 1992 with the Fukuda criteria, and even further with the Reeves criteria. Some youths with M.E. have died or become worse due to inappropriate treatments (Cognitive Behavioral Therapy and Graded Excercie Therapy) based on these "fatigue" definitions. M.E was never recognized by the U.S government, but it is not new or fatigue based.

It is scientifically unsound to take people who are sick with M.E. and throw them into a pot with people whose illnesses look very different, and then to conclude that M.E. has no universal biomarkers.

There are more than 500 papers in the medical literature that show measurable physiological abnormalities in the melting pot of "CFS." These papers show a pathophysiology for all three of the essential components of the M.E. criteria that Dr. Melvin Ramsey described: circulatory, immune, and muscle impairment. Articles describing all of these pathophysiologies in M.E patients, although published under the name "CFS," are available on my website. Although the cause or causes of M.E. are unknown, the pathophysiology of M.E is not "medically unexplained." It is available to anyone willing to read the research. Patients who show these abnormalities should be separated from the "CFS" pot and studied separately as M.E patients.

The Canadian Consensus Criteria (CCC) is a description of these M.E. patients and requires all three of the components that Dr. Ramsey originally described to meet the definition of M.E. It appropriately identifies milder M.E. patients and those who are homebound and/or bedridden. "CFS" does not name a specific disease. The study of "fatigue" and the term "CFS" should be abandoned.

We urge that the IOM cease from it's re-definition effort and recommend that the government adopt the CCC as a clinical and research definition of M.E. until more research can be completed. Further, unrelated diseases such as fibromyalgia, depression, or unspecified fatigue should not be lumped or studied with M.E. We further urge that M.E be called by its long-recognized name by the World Health Organization, "Myalgic Encephalomyelitis."

Sincerely, Dr. Maryann Spurgin M.E. Society of America
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
What we are seeing from our experts is what we have needed all along ... them to stand up and say, enough is enough, now we will act to fix things and not rely on agencies that claim to have patient's best interests at heart.

Though I want to know more about the "Academy of M.E. & C.F.S. Physicians".

Excellent job by Dr. Enlander. Yes, it feels so good (and is absolutely necessary) that our doctors are finally speaking out more than one at a time here and there.
 

Ember

Senior Member
Messages
2,115
Accurate and Precise
January 27th, 2014 Jennie Spotila
This is the text version of my presentation to the Institute of Medicine Panel today. I delivered my comments remotely, because a fever has kept me bedridden for three days. I tried to speak as naturally and extemporaneously as possible, so there are some differences between the spoken and written versions. I also submitted a much longer version with more details and references to the Public Access Folder.

My name is Jennifer Spotila and I have been disabled by ME/CFS for more than nineteen years. I’ve been involved in advocacy for most of that time, including past service on the CFIDS Association Board, and appointment to the FDA’s Patient Representative Program. I write about politics and other ME/CFS issues at occupycfs.com. My perspective on this IOM study is informed by all of that experience, and I believe the one thing you must keep in mind throughout this study is to be as accurate and precise as you can in order to create sensitive and specific diagnostic criteria....
 

leela

Senior Member
Messages
3,290
You know, I'm thinking again of susan maier's bizarre performance, and how much I wanted to throw a shoe at my screen when she remarked that oh my gawsh they've been working on this since june 2013, "We've been at this a looooooooong time!" she exclaimed.

Yeah, that's like what *fraction* of time most of us have been ill? I found her whole demeanor to be trivializing. At least the chair took the opportunity to genuinely thank everyone for presenting, and to respectfully acknowledge how hard it was for them to be there.
Ms Maier really got my goat.
I might be especially biased because I am so sick of this illness remaining in the dept of women's health. Why doesn't she make herself useful with all that "up" energy and recommend to her colleagues at HHS a more appropriate departmental transfer for this neuroimmune disease that has caused the illness and death of how many men and boys?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
On a positive note, I was (unexpectedly) impressed by Nancy Lee's presentation. She gave the impression that she really did understand our perspective. And she said some really helpful things. And I thought she directed the committee in a good direction.

Did any one else get that impression, or have I allowed myself to get carried away because it was a much better presentation than i had been expecting?
 
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Nielk

Senior Member
Messages
6,970
On a positive note, I was (unexpectedly) impressed by Nancy Lee's presentation. See gave the impression that she really did understand our perspective. And she said some really helpful things. And I thought she directed the committee in a good direction.

Did any one else get that impression, or have I allowed myself to get carried away because it was a much better presentation than i had been expecting?

I feel that she was very well prepped considering her failure at the last CFSAC debacle. I was disappointed though at the very limited questioning considering that her presentation was the most relevant to the IOM study.
 

leela

Senior Member
Messages
3,290
I missed her presentation. Glad to hear maybe she's taking a cue from the climate of increased patient/advocate scrutiny?
 

rosie26

Senior Member
Messages
2,446
Location
NZ
I only got to see the first hour as I had an appointment I couldn't put off, but I too was impressed with Nancy Lee, she came across well. Can't wait to watch the whole meeting when video is available.
 

SOC

Senior Member
Messages
7,849
Thanks, all, for reporting here. :hug: I was tutoring throughout the meeting and so couldn't watch myself, so your reports were valuable to me.

I was surprised and pleased to hear that Dr Lee seems to have finally figured out that ME/CFS is a serious illness that requires attention. I had long since given up on her after listening to her massive ignorance of the illness in CFSAC meetings.

The idea that a nurse should be able to diagnose when GPs claim we're too difficult seemed quite strange, though. o_O So maybe the appearance that she grasps the magnitude of the illness is illusory. Still, it was heartening, even if it's only temporarily so. :D
 
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JT1024

Senior Member
Messages
582
Location
Massachusetts
Charlotte von Salis- Your job is already done: CCC and ICC. "that's right, it's based on science, not politics!"

Now here was a fireworks finale: You are in a unique position to hand out these pamphlets!!

She reduced their highest and best use to being pamphleteers! Yes!!! rofl

Too bad I can't like this more than once! I think it is hysterical!
 

Kati

Patient in training
Messages
5,497
I was not particularily impressed by neither Dr Lee or Dr Meir, and after both presentations, I was very confused and perplexed as of what this committee was meant to do, and to be quite honest, I think some of the committee members were also confused.

i worry when the IOM is being given a mandate to pick a definition that will suit the general practitionners- do they actually and should they assume that there won't be a medical specialty for us?

No medical specialty will cause harm for us, and delay in research and clinical trials.
 
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