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Tell US Congress to Increase Funding for ME Research and More - with one click easy app.

Nielk

Senior Member
Messages
6,970
One of MEadvocacy.org’s aims is to empower ME patients and their supporters with a strong voice. For the past three decades, these voices have been ignored. The Department of Health and Human Services (HHS) has continuously neglected and marginalized this disease, by using overly broad definitions, trivializing disease names, and consistently underfunding research.

This has resulted in substandard care for ME patients by the medical community, leaving a generation of ME patients suffering with little hope for the future. Unconscionably, the upcoming generation of patients are facing the same issues as 30 years ago.

We must go over HHS' heads directly to Congress. Tell your Congressional representatives - we have had enough of this abuse. NO MORE!

Click here to participate:

http://www.meadvocacy.org/tell_congress_to_increase_funding_for_me_research
 
Messages
15,786
One of MEadvocacy.org’s aims is to empower ME patients and their supporters with a strong voice. For the past three decades, these voices have been ignored. The Department of Health and Human Services (HHS) has continuously neglected and marginalized this disease, by using overly broad definitions, trivializing disease names, and consistently underfunding research.
This sounds like another dig at IOM. While there have been multiple broad definitions pre-IOM, there has only been one trivializing name for it: CFS. Hence by pluralizing "names" it would seem that SEID and it's definition are being included as "overly broad" and "trivializing".

I'm not going to agree with, sign, or support any action which explicitly or implicitly aims to undermine the IOM report.
 

Nielk

Senior Member
Messages
6,970
This sounds like another dig at IOM. While there have been multiple broad definitions pre-IOM, there has only been one trivializing name for it: CFS. Hence by pluralizing "names" it would seem that SEID and it's definition are being included as "overly broad" and "trivializing".

I'm not going to agree with, sign, or support any action which explicitly or implicitly aims to undermine the IOM report.

This initiative is only for U.S. residents to reach their own congressional representatives.

It is a chance to tell congress how you feel about the lack of funding and the need for only expert authored ME criteria and the historical name Myalgic Encephalomyelitis. We need congress to put pressure on HHS, NIH and the CDC to stop the neglect of patients, the overly broad definitions and the marginalized names.

If you agree that this is an important message that you would like congress to hear, please take the time (about one minute) to sign and it will automatically send the letter out to your senators and congressional representatives based on your zip code.
 

Denise

Senior Member
Messages
1,095
Question @Nielk - do you mean just for U.S. voters/citizens or all U.S. residents whether or not they are citizens/voters?




I am wondering if @Valentijn is concerned about the statement in the letter that the sender (signer) is a support of MEAdvocacy.
"I am writing to you as a constituent and supporter of MEadvocacy.org which represents patients suffering from the chronic, debilitating neuro-immune disease Myalgic Encephalomyelitis (ME), also known in the U.S. as Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)."
 

Nielk

Senior Member
Messages
6,970
Question @Nielk - do you mean just for U.S. voters/citizens or all U.S. residents whether or not they are citizens/voters?

It is for anyone who is a resident of the U.S.
Edit - this is wrong. One needs to be a voting citizen.

Question @Nielk - do you mean just for U.S. voters/citizens or all U.S. residents whether or not they are citizens/voters?


I am wondering if @Valentijn is concerned about the statement in the letter that the sender (signer) is a support of MEAdvocacy.
"I am writing to you as a constituent and supporter of MEadvocacy.org which represents patients suffering from the chronic, debilitating neuro-immune disease Myalgic Encephalomyelitis (ME), also known in the U.S. as Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)."

By stating that one is a supporter of MEadvocacy, it just means that one agrees with the policy of MEadvocacy such as the fact that we want HHS to adopt an ME, expert authored, criteria and the name Myalgic encephalomyelitis.
The letter states the following:

I am writing to you as a constituent and supporter of MEadvocacy.org which represents patients suffering from the chronic, debilitating neuro-immune disease Myalgic Encephalomyelitis (ME), also known in the U.S. as Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

An estimated one million men, women and children in the US have ME/CFS. It is so severe that it renders a quarter of its patients bedbound and unable to care for themselves. More than half are disabled and are unable to work, attend school or participate in activities of daily life. The burden on the economy for this disease is estimated by the CDC to be between 17 to 24 billion dollars. Notwithstanding these staggering statistics, ME has consistently been funded at a paltry $5 million for years. Due to this grossly inadequate research funding, there are no FDA approved treatments, no cause and no cure. In order to move the science forward for this disease, ME needs well defined criteria and an appropriate name.

ME has a long history, appearing worldwide in epidemic and endemic forms. A 1955 outbreak in London led Dr. A. Melvin Ramsay to describe it as an infectious neuromuscular disease and to coin the term Myalgic Encephalomyelitis. Yet, here in the U.S., HHS has repeatedly attempted to marginalize the disease by creating overly broad criteria and by re-branding it with undignified, marginalizing names. These actions by HHS have been the cause of three decades of confused research findings and the lack of viable treatments. HHS has defiantly ignored the plea by its own Chronic Fatigue Syndrome Advisory Committee (CFSAC), medical experts, patient advocates, patients and their families to adopt M.E. expert-authored, well-defined criteria and name for the disease. I need your help to overhaul the paltry NIH funding pattern for this disease and to bring it to the level of other similarly burdensome diseases.

The burden on the economy for this disease is estimated to be between 17 to 24 billion dollars. Notwithstanding these staggering statistics, ME has consistently been funded at a paltry $5-6 million for years. NIH has consistently placed ME/CFS at the rock bottom of their funding budget list. The yearly allocation for ME/CFS is a mere fraction of what other similarly burdened diseases receive. HHS/NIH funding data for 2014 US patient population Funding per patient M.S. - $102 million 400,000 $255 Parkinson’s - $139 million 1,000,000 $139 ME/CFS - $5 million 1,000,000 $5

It is wrong and illogical to continue to burden ME patients with a gross lack of funding, an overly broad criteria and a name which invites abuse. This time the ME community is saying, “No More!”

I need you to be my champion for this disease and I urge you to use your powers to direct the HHS to do the following:

Fund biomedical research for ME commensurate with its severity and burden to patients and the economy. We are asking for specific funding in the amount of $250 million, the amount we believe is needed to bring ME on par with other similarly burdened diseases. HHS should clearly allocate funds to study patients from past ME cluster outbreaks as well as the study of the epidemiology of patients with severe ME. The additional funding needed for ME might be accomplished by means of prorating the allocation from other diseases related to immune, cognitive and nervous system dysfunctions.

Heed the ME stakeholders’ voices requesting the adoption of the diagnostic and research criteria authored by those experienced in the disease, namely the Canadian Consensus Criteria (CCC), which has long been adopted by the field’s professional organization, the International Association of Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME). In a letter to the Secretary of HHS, 50 experts in the disease declared their consensus agreement to adopt the CCC. This was endorsed by a letter signed by 171 advocates as well as a petition signed by over 6,000 patients. The 2011 revision known as the International Consensus Criteria (ICC) would be an alternatively acceptable criteria for adoption.

Retain the historical name for this disease, Myalgic Encephalomyelitis (ME), which has been coded since 1969 by the World Health Organization (WHO) under neurological disease code G93.3. It is already known that ME will appear in the 2015 U.S. ICD Codes as U.S. ICD-10-CM under the neurological category of G93.3.
 
Last edited:

Nielk

Senior Member
Messages
6,970
@Denise

It seems like I got it wrong. One needs to be a citizen voter in order to mail their representatives.
 

Nielk

Senior Member
Messages
6,970
The letter to congress campaign has been extended for another month with a new and improved letter to be sent with a 'one click" easy method that will simultaneously reach all your congressional representatives in the U.S.


http://www.meadvocacy.org/tell_congress_to_increase_funding_for_me_research

The letter states:
I am writing to you as a constituent and deeply concerned citizen. I need you to be my champion regarding the severely debilitating, chronic, neuro-immune disease Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). ME patients are too sick to advocate for themselves, and so this condition doesn’t have the widespread awareness that other severe diseases do. That’s why political action on ME patients’ behalf is vital. Specifically, I need your help to increase National Institutes of Health (NIH) funding, establish Department of Health and Human Services (HHS) nomenclature, and modify HHS diagnostic criteria for this horrific disease.

An estimated one million Americans suffer from ME, a long-term disease that primarily targets young, previously healthy adults from diverse ethnic and socioeconomic backgrounds. The disease is so severe; it renders a quarter of its patients bedbound and unable to care for themselves. More than half are disabled and can’t work, attend school, or participate in daily life activities. ME patients do not spontaneously recover. ME patients are known to be “more functionally impaired than those with type 2 diabetes, congestive heart failure, [and] multiple sclerosis.” The Centers for Disease Control (CDC) estimates ME’s annual burden on the U.S. economy to be $17-24 billion. However, the NIH consistently places ME at the rock bottom of its budget, with barely $5 million/year. This is less than the NIH allocates for hay fever, and is nowhere near its allocation for other similarly burdensome diseases:

2014 HHS/NIH funding U.S. patient population Funding per patient

HIV/AIDS $2.9 billion 1,200,000 $2,481

M.S. $102 million 400,000 $255

Parkinson’s $139 million 1,000,000 $139

ME $5 million 1,000,000 $5

As a result, ME has no known cause, no FDA-approved treatment, and no cure. The lack of progress in ME research over the past 30 years is appalling, and is reflected in the absence of a standard of care for ME or even a knowledgeable response from most medical practitioners when encountering these patients and their families. Accordingly, I strongly urge you to direct the HHS to fund biomedical research for ME in the amount of $250 million, which is commensurate with the disease’s severity and burden.

To move the science forward on ME, the disease also needs appropriate nomenclature and well-defined diagnostic criteria. Originally named Myalgic Encephalomyelitis (ME) in London in 1955, ME is known in the U.S. by the less scientific and more trivial name, Chronic Fatigue Syndrome (CFS). For this reason, HHS’s Chronic Fatigue Syndrome Advisory Committee (CFSAC), ME medical experts, patients, their advocates, and their families have long implored the HHS to adopt the disease’s historical name, Myalgic Encephalomyelitis, which more accurately refers to the disease’s infectious neuromuscular nature. This makes particular sense given that ME will appear in the 2015 U.S. ICD Codes as U.S. ICD-10-CM under the neurological category (G93.3), and it has been coded under the neurological disease code (G93.3) by the World Health Organization (WHO) since 1969.

Similarly, HHS’s Chronic Fatigue Syndrome Advisory Committee (CFSAC), ME medical experts, ME patients, their advocates, and their families have entreated the HHS to strike its current, overly-broad ME diagnostic criteria in favor of the well-defined, globally-accepted Canadian Consensus Criteria (CCC), which was established in 2003 by a team of international ME medical experts. The International Association of Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME), the field’s professional organization, has officially endorsed and adopted the CCC standards, as have at least 50 ME medical experts, almost 200 ME advocates, and more than 6,000 patients. The 2011 International Consensus Criteria (ICC) revision is also well-established and alternatively acceptable.

In conclusion, as a deeply concerned citizen and your constituent, I strongly urge you to use your powers and direct the HHS to:

1. Fund biomedical research for ME in the amount of $250 million, which is commensurate with the disease’s severity and burden;

2. Adopt ME’s historical name, Myalgic Encephalomyelitis, and cease using Chronic Fatigue Syndrome; and

3. Endorse the well-defined, globally-accepted Canadian Consensus Criteria (CCC) for U.S. ME diagnosis and research.

By taking these three critical steps, you will eliminate the greatest obstacles to finding an ME cure and thereby significantly ease the enormous physical and economic burden of ME on millions of American patients and family members.

Please take the time to send this important message to Congress now by using the easy one click letter here.