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[[File:United_States_flag.svg.png|320px|right|thumb|'''United States''']] ==Demographics== At least one million Americans are estimated to have [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]] (ME/CFS).<ref>{{Cite web|url=https://www.meaction.net/about/what-is-me/ | title = What is Myalgic Encephalomyelitis (ME)?|website=#MEAction|language=en-US|access-date=2019-07-15}}</ref> The [[Institute of Medicine report]] estimated 836,000 and 2.5 million Americans have [[ME/CFS]] at a cost of between 17 and 24 billion dollars annually in the US.<ref name="IOM2015MECFS" /> This represents a prevalence of around 0.3% of the population. A report by the Health and Medicine Division of the [[National Academy of Medicine]] (NAM) estimates the number of people with ME/CFS in the US to be between 836,000 and 2.5 million.<ref>http:https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness</ref> Regionally, there are estimates of up to: *300,000 in California *79,000 in Georgia *52,000 in Massachusetts *76,000 in Michigan *69,000 in New Jersey *98,000 in Pennsylvania *55,000 in Seattle *5,000 in Washington D.C.<ref>http://www.huffingtonpost.com/rivka-solomon/millionsmissing-a-hidden-_b_12183114.html</ref> ==Medical guidelines== *[[Centers for Disease Control and Prevention]] (CDC) :*In the past, the CDC Guidelines for [[chronic fatigue syndrome|CFS]] had been criticized by the [[ME/CFS]] community for its continued recommendations of exercise even though the [[Institute of Medicine report]] did not recommend GET or CBT which were implemented in the UK due to the [[PACE trial]]. Some healthcare practitioners in the US would still implement [[Exercise]] therapies and refer patients to psychiatrists even though the IOMR did not recommend these as forms of treatment. *July 3, 2017, the CDC's Chronic Fatigue Syndrome page has been changed to "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)" and [[graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) recommendations have been removed.<ref>[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - Virology Blog]</ref><ref>[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref> * Jul 12, 2018, the CDC updated its website's ME/CFS page for [https://www.cdc.gov/me-cfs/healthcare-providers/index.html Healthcare Practitioners].<ref>[https://www.cdc.gov/media/releases/2018/a0712-new-website-me-cfs.html New ME/CFS Web Content for Healthcare Providers - CDC - Jul 12, 2018]</ref> :'''MEAction input''' :*Jul 29, 2018, [https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/#comment-56411 CDC Revises its Information on ME] #[[MEAction]] report on the CDC July 2017 and July 2018 website updates. Recommendations for the CDC's ME/CFS page have been created from patient feedback on the updates as well as asking for further patient input. :*Oct 11, 2018, #MEAction sent recommendations to the CDC to update its ME/CFS website.<ref>{{Cite news | title=#MEAction Sends Recommendations to CDC to Update its ME Website - #MEAction|url=https://www.meaction.net/2018/10/11/meaction-sends-recommendations-to-cdc-for-me-website/|work=#MEAction | date = 2018-10-11|access-date=2018-10-12|language=en-US | last =S | first = Jaime|archive-url=|archive-date=|url-status=}}</ref> The #MEAction recommendations include community recommendations in red.<ref>{{Cite web|url=http://www.meaction.net/wp-content/uploads/2018/10/Recommended-Changes-to-the-CDC-Webpages-on-ME-2.pdf | title = Recommended Changes to the CDC Webpages on ME | date = Sep 2018|access-date=|website=meaction.net | last = | first = |archive-url=|archive-date=|url-status=}}</ref> *[[National Institutes of Health]] (NIH) The NIH has announced the [[NIH Post-Infectious ME/CFS Study]]. *[[Food and Drug Administration]] (FDA) The FDA has not approved any drug treatment for ME/CFS. *[[National Academy of Medicine]] (NAM); (formerly [[Institute of Medicine]] (IOM)) The [[IOM]] (NAM as of June 2015) released the [[Institute of Medicine report]] on February 10, 2015. This is the [https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf Clinicians Guide]. The name Systemic Exertion Intolerance Disease (SEID) has not been adopted but the new diagnostic criteria have been incorporated into the CDC's ME/CFS website "for informational purposes only"<ref>[https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html IOM 2015 Diagnostic Criteria]</ref> under the tab [https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html IOM 2015 Diagnostic Criteria]. *[[Health and Human Services]] (HHS) The HHS has a [[Chronic Fatigue Syndrome Advisory Committee]]. (CFSAC) ==National health department== *[[Centers for Disease Control and Prevention]] (CDC) *[[National Institutes of Health]] (NIH) *[[Food and Drug Administration]] (FDA) *[[National Academy of Medicine]] (NAM); formerly [[Institute of Medicine]] (IOM) *[[Health and Human Services]] (HHS) ==Government health insurance== The [https://www.usa.gov/finding-health-insurance Affordable Health Care Act] (AHCA) - (Obamacare) can lower health care costs, provide more health care choices and improve the quality of healthcare. If you are not currently on Social Security Insurance (SSI) or Social Security Disability Insurance (SSDI) but need healthcare coverage due to disability there are resources through local city, county or state government. [https://www.usa.gov/finding-health-insurance#item-36797 Medical and Health Resources for People with Disabilities] If you recently left a job where you had health insurance you may want to consider [https://www.usa.gov/finding-health-insurance#item-36992 COBRA]. ==Private health insurance== There are many private health care providers in the USA. ''Medical News Today'' "Health Insurance" article provides a heading: [http://www.medicalnewstoday.com/info/health-insurance/find-private-health-insurance.php Matching your needs with what is available]. ==Access to care== Although clinicians (see "Clinicians" heading below) are those known to be on the cutting edge of [[chronic fatigue syndrome|CFS]] care, they are still limited by the fact there are no approved drugs, therapies or reliable treatments. As of April of 2016, [[Ampligen]] is provided by only a few doctors and the FDA is limiting the number of patients receiving this treatment to 100.<ref>[http://beforeitsnews.com/press-releases/2013/02/hunger-striker-decries-fda-denial-of-only-medicine-for-chronic-fatigue-syndrome-day-8-2735262.html Hunger Striker Decries FDA Denial of Only Medicine for Chronic Fatigue Syndrome, Day 8 - Before It's News]</ref> A patient needs to live near or move to any doctor that provides the intravenous treatment. The cost is $75 per vial two times a week administered weekly. This does not include the intravenous cost. Costs ''may'' be covered under a recovery program previously known as "compassionate care". The price may go to $200 a vial.<ref>[http://www.meaction.net/2015/08/10/ampligen-price-increases-substantially-available-soon-in-europe/ Ampligen price more than doubles, available soon in Europe - MEAction By: Jen Brea]</ref> Ask your Primary, Rheumatologist or Neurologist to recommend a doctor who specializes in CFS or you can look online for the many lists by state for those doctors who will care for ME/CFS patients. Most will not treat with Ampligen or Rituximab but will treat sleep disorders, [[Orthostatic intolerance]], [[Postural orthostatic tachycardia syndrome|POTS]] and the many symptoms and co-morbids of ME/CFS. ==Social security and disability benefits== Disability benefits for CFS are available under the [https://www.ssa.gov/ Social Security Administration].<ref>[http://www.cdc.gov/cfs/news/features/disability.html CFS - CDC]</ref> [[HHS]] outlines [[SSA]]'s [https://www.hhs.gov/sites/default/files/advcomcfs/meetings/presentations/cfs-ssr-cfsac-presentation-june-2014.pdf ''Social Security Ruling 14-1p'' - PDF]. Jun 17, 2014 The [https://howtogeton.wordpress.com/2017/03/11/how-and-where-to-fill-out-initial-application-forms/ Social Security Disability application] may be completed online, on paper, in person, or through a lawyer or caseworker. [http://www.disabilitysecrets.com/page5-13.html SSI and SSDI have different thresholds and requirements]. "For those who can continue to work part-time with reduced hours and/or responsibilities, state and federal laws require many employers to provide disabled patients with reasonable [http://www.dol.gov/general/topic/disability/jobaccommodations Job Accommodations]."<ref>[https://www.masscfids.org/disability Disability MASS CFIDS]</ref><ref>[http://www.womenshealth.gov/publications/our-publications/fact-sheet/chronic-fatigue-syndrome.html CFS Womenshealth.gov]</ref> === Blogs about navigating SSD process === *Resources for getting approved for disability include this [http://www.meaction.net/2017/04/17/the-sleepy-girl-guide-to-social-security-disability-u-s/ Guide to Social Security Disability for People with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome], available on the #MEAction website. *[https://howtogeton.wordpress.com/2017/03/20/how-pattys-lawyer-never-told-her-the-most-important-thing-she-needed-to-know/ How Pattyâs Lawyer Never Told Her What She Needed to Know] *[https://howtogeton.wordpress.com/2017/05/01/sample-doctor-letters-for-disability/ Sample Doctor Letters for Disability] ==Patient charities== [http://me-pedia.org/wiki/Category:American_patient_groups American Patient Groups] ==Research== *[[Institute of Medicine report]] *[[NIH Post-Infectious ME/CFS Study]] *[[:Category:USA researchers|USA researchers]] *[[:Category:American research initiatives|American research initiatives]] ==Clinicians== *Alaska:{{PagesInCategory|Alaska clinicians|mode=inline}} *Alabama:{{PagesInCategory|Alabama clinicians|mode=inline}} *Arkansas:{{PagesInCategory|Arkansas clinicians|mode=inline}} *Arizona:{{PagesInCategory|Arizona clinicians|mode=inline}} *California:{{PagesInCategory|California clinicians|mode=inline}} *Colorado:{{PagesInCategory|Colorado clinicians|mode=inline}} *Connecticut:{{PagesInCategory|Connecticut clinicians|mode=inline}}â *Delaware::{{PagesInCategory|Delaware clinicians|mode=inline}} *Florida:{{PagesInCategory|Florida clinicians|mode=inline}} *Georgia:{{PagesInCategory|Georgia clinicians|mode=inline}} *Hawaii:{{PagesInCategory|Hawaii clinicians|mode=inline}} *Idaho:{{PagesInCategory|Idaho clinicians|mode=inline}} *Illinois:{{PagesInCategory|Illinois cliniciansâ|mode=inline}} *Indiana:{{PagesInCategory|Indiana clinicians|mode=inline}} *Iowa:{{PagesInCategory|Iowa cliniciansâ|mode=inline}} *Kansas:{{PagesInCategory|Kansas clinicians|mode=inline}} *Kentucky:{{PagesInCategory|Kentucky clinicians|mode=inline}} *Louisiana:{{PagesInCategory|Louisiana cliniciansâ|mode=inline}} *Maine:{{PagesInCategory|Maine cliniciansâ|mode=inline}} *Maryland:{{PagesInCategory|Maryland cliniciansâ|mode=inline}} *Massachusetts:{{PagesInCategory|Massachusetts cliniciansâ|mode=inline}} *Michigan:{{PagesInCategory|Michigan clinicians|mode=inline}}â *Minnesota:{{PagesInCategory|Minnesota clinicians|mode=inline}}â *Mississippi:{{PagesInCategory|Mississippi clinicians|mode=inline}}â *Missouri:â{{PagesInCategory|Missouri clinicians|mode=inline}} *Montana:{{PagesInCategory|Montana cliniciansâ|mode=inline}} *Nebraska:{{PagesInCategory|Nebraska cliniciansâ|mode=inline}} *Nevada:{{PagesInCategory|Nevada clinicians|mode=inline}}â *New Hampshire:{{PagesInCategory|New Hampshire clinicians|mode=inline}} *New Jersey:{{PagesInCategory|New Jersey clinicians|mode=inline}} *New York:{{PagesInCategory|New York clinicians|mode=inline}} *New Mexico:{{PagesInCategory|New Mexico cliniciansâ|mode=inline}} *North Carolina:{{PagesInCategory|North Carolina clinicians|mode=inline}} *North Dakota:{{PagesInCategory|North Dakota clinicians|mode=inline}} *Oklahoma:{{PagesInCategory|Oklahoma cliniciansâ|mode=inline}} *Ohio:{{PagesInCategory|Ohio cliniciansâ|mode=inline}} *Oregon:{{PagesInCategory|Oregon cliniciansâ|mode=inline}} *Pennsylvania:{{PagesInCategory|Pennsylvania clinicians|mode=inline}} *Rhode Island:{{PagesInCategory|Rhode Island cliniciansâ|mode=inline}} *South Carolina:{{PagesInCategory|South Carolina clinicians|mode=inline}} *South Dakota:{{PagesInCategory|South Dakota clinicians|mode=inline}} *Texas:{{PagesInCategory|Texas clinicians|mode=inline}} *Utah:{{PagesInCategory|Utah clinicians|mode=inline}} *Vermont:{{PagesInCategory|Vermont clinicians|mode=inline}} *Virginia:{{PagesInCategory|Virginia clinicians|mode=inline}} *Washington:{{PagesInCategory|Washington clinicians|mode=inline}} *West Virginia:{{PagesInCategory|West Virginia cliniciansâ|mode=inline}} *Wisconsin:{{PagesInCategory|Wisconsin cliniciansâ|mode=inline}} *Utah:{{PagesInCategory|Utah clinicians|mode=inline}} ==Notable patients== [[Jennifer Brea]], [[Whitney Dafoe]], [[Ryan Prior]], [[Jennie Spotila]], [[Brian Vastag]], [[Hillary Johnson]], [[Julie Rehmeyer]], [[Leonard Jason]], [[Cort Johnson]], [[Deborah Waroff]], [[Beth Mazur]], [[Mary Schweitzer]], [[Steven Lubet]], [[Carol Head]], [[Erik Johnson]], [[Chardale Dotson Irvine]], [[Morgan Fairchild]], [[Jeannette Burmeister]], [[Toni Bernhard]], [[Robert Miller]], [[Laura Hillenbrand]] ==Proclamations== There is a list of [[United States proclamations]]. ==States== *[[New Jersey Legislation]] *[https://drive.google.com/file/d/0B37JHmPXER6JZkZRd0hIalA2bUE/view New York Department of Health May 2017 Letter To All NY State Physicians on ME/CFS] ==Learn more== *[[Forgotten Plague]] (2015) Documentary *[[Invisible Illness - Stories of Chronic Fatigue Syndrome]] Youtube Mini-Doc (2015) *[[What happens when you have a disease doctors can't diagnose - TED Talk (2016)]] by Jennifer Brea *[[Unrest]] (2017) Documentary ==See also== *[[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks]] *[[Pathways to prevention report]] (P2P) *[[National Institutes of Health]] *[[National Institutes of Health funding]] *[[Centers for Disease Control]] *[[Trans-NIH Working Group]] *[[UNUM]] ==References== <references> <ref name="IOM2015MECFS">{{citation | last1 = Institute of Medicine (USA) | last2 = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | date = Feb 10, 2015 | url = https://pubmed.ncbi.nlm.nih.gov/25695122/ }}</ref> </references> [[Category:Countries]] [[Category:North America]] [[Category:United States]]
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