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'''[[Myalgic Encephalomyelitis]] | '''Primer for the public''' offers a broad audience, an abundance of detailed information on [[Myalgic Encephalomyelitis]] (ME) and [[Chronic Fatigue Syndrome]] (CFS) are complex, chronic, and poorly understood medical conditions. ME was first categorized as a neurological disease by the World Health Organization in 1969. CFS was first formally defined by the United States [[Centers for Disease Control]] in 1988 as a framework for researching unexplained chronic fatigue associated with a mononucleosis-like syndrome. There remains a lack of consensus among members of the medical and research communities regarding the equivalence of ME and CFS. Some believe that CFS is intended to describe the same disease entity as ME, while others believe that they are distinct conditions but with overlapping symptom profiles. In deference to this lack of consensus, the combined term '[[ME/CFS]]' is often used. | ||
== Disease onset and | == Disease onset and course of illness== | ||
The disease [[ME/CFS]] is diagnosed when a person does not recover from a flu-like illness, [[EBV]], [[Mononucleosis]], [[HHV]], [[Q fever]], [[Virus]] or other infections and meets one or more diagnostic criteria for either ME, CFS or ME/CFS.<ref>[https://www.nap.edu/read/19012/chapter/7#157 IOM Report - INFECTION]</ref><ref>[http://www.cortjohnson.org/blog/2014/01/09/lipkin-study-vagus-nerve-hhv-6-loomis-hhv-6-foundation/ The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I - Health Rising - By: Cort Johnson - June 2014]</ref><ref>[http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS - MEpedia]</ref> Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity among patients.<ref>[http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/ Symptoms and diagnosis of ME/CFS - ME Association]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://phoenixrising.me/mecfs-basics/chronic-fatigue-syndrome-mecfs-facts-chronic-fatigue-syndrome-is-2 Facts (ME/CFS) Severity]</ref> | The disease [[ME/CFS]] is diagnosed when a person does not recover from a flu-like illness, [[EBV]], [[Mononucleosis]], [[HHV]], [[Q fever]], [[Virus]] or other infections and meets one or more diagnostic criteria for either ME, CFS or ME/CFS.<ref>[https://www.nap.edu/read/19012/chapter/7#157 IOM Report - INFECTION]</ref><ref>[http://www.cortjohnson.org/blog/2014/01/09/lipkin-study-vagus-nerve-hhv-6-loomis-hhv-6-foundation/ The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I - Health Rising - By: Cort Johnson - June 2014]</ref><ref>[http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS - MEpedia]</ref> "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."<ref>[https://www.masscfids.org/images/pdf/Primer_2014.pdf Chronic Fatigue Syndrome Myalgic Encephalomyelitis - Primer for Clinical Practitioners - 2014 Edition - Massachusettes CFIDS/FM Assoc]</ref> Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity among patients.<ref>[http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/ Symptoms and diagnosis of ME/CFS - ME Association]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://phoenixrising.me/mecfs-basics/chronic-fatigue-syndrome-mecfs-facts-chronic-fatigue-syndrome-is-2 Facts (ME/CFS) Severity]</ref> | ||
=== Female to male ratio === | |||
Like many auto-immune and neuro-immune diseases where mostly women are afflicted,<ref>[http://www.rightdiagnosis.com/artic/fact_sheet_autoimmune_disease_in_women_nwhic.htm Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015]</ref> the ME/CFS female/male patient ratio is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio<ref>[http://emedicine.medscape.com/article/329838-overview#a5 Fibromyalgia:Epidemiology - Medscape]</ref> and some ME/CFS patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref> | |||
=== Pediatric ME/CFS === | |||
Children are also afflicted with ME/CFS.<ref>[http://www.openmedicinefoundation.org/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation]</ref><ref>[https://www.masscfids.org/pediatric-me-cfs-links Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association]</ref> ''See'': [[Pediatric]]. | |||
=== Prognosis === | |||
Prognosis for ME/CFS is generally poor. ''See'': [[Prognosis]] | |||
== Disease names and acronyms around the world == | == Disease names and acronyms around the world == | ||
The [[United States]] and [[Australia]] usually refer to the disease as [[CFS]], (Chronic Fatigue Syndrome). Many European countries, the [[United Kingdom]] and [[Ireland]] mostly use the name [[ME]], (Myalgic Encephalomyelitis). Most countries as well as doctors and researchers worldwide will also use the acronym [[ME/CFS]] and a few CFS/ME. ''See:'' [http://me-pedia.org/wiki/Definitions_of_ME_and_CFS | The [[United States]] and [[Australia]] usually refer to the disease as [[CFS]], (Chronic Fatigue Syndrome). Many European countries, the [[United Kingdom]] and [[Ireland]] mostly use the name [[ME]], (Myalgic Encephalomyelitis). Most countries, as well as doctors and researchers worldwide, will also use the acronym [[ME/CFS]] and a few CFS/ME. ''See:'' [http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS]. | ||
The symptom [[Chronic fatigue]] (CF) should not be used in place of the name Chronic Fatigue Syndrome (CFS); this has been a source of confusion of CF the symptom and CFS the disease. CFS is a grossly misnamed disease whereas CF is a symptom of many diseases, illnesses and drug therapies.<ref>[http://chronicfatigue.about.com/od/whatischronicfatigue/a/cf_vs_cfs.htm?utm_content=bufferda812&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer Chronic Fatigue vs. Chronic Fatigue Syndrome - One's a Symptom, One's a Disease - About.com Health FMS/ME/CFS By | The symptom [[Chronic fatigue]] (CF) should not be used in place of the name Chronic Fatigue Syndrome (CFS); this has been a source of confusion of CF the symptom and CFS the disease. CFS is a grossly misnamed disease whereas CF is a symptom of many diseases, illnesses and drug therapies.<ref>[http://chronicfatigue.about.com/od/whatischronicfatigue/a/cf_vs_cfs.htm?utm_content=bufferda812&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer Chronic Fatigue vs. Chronic Fatigue Syndrome - One's a Symptom, One's a Disease - About.com Health FMS/ME/CFS By Adrienne Dellwo]</ref><ref>[http://arthritis.about.com/od/fatigue/f/chronicfatigue.htm Chronic Fatigue Versus Chronic Fatigue Syndrome What's the Difference? - About.com Health FMS/ME/CFS - By Carol Eustice]</ref> Dr. [[Jarred Younger]] explains chronic fatigue and begins by stating "Fatigue is not a disease and it is not even a symptom. So fatigue is a alarm system and the most general alarm system the body has." [https://www.youtube.com/watch?v=wJB95m4FLa0 Webinar with Jarred Younger, Ph.D. (@6:04-7:54)] | ||
=== Myalgic Encephalomyelitis (ME) === | === Myalgic Encephalomyelitis (ME) === | ||
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=== From CFS to 'any unexplained fatigue' === | === From CFS to 'any unexplained fatigue' === | ||
Various groups invented new definitions, that required only 'medically unexplained fatigue' such as [[Reeves criteria]] and [[Oxford criteria]]. Fatigue is a common symptom in any population, with many different causes. These new definitions allowed some psychiatrists to claim that CFS could be 'cured' through exercise and positive thinking which has been promoted through the [[PACE trial]] | Various groups invented new definitions, that required only 'medically unexplained fatigue' such as [[Reeves criteria]] and [[Oxford criteria]]. Fatigue is a common symptom in any population, with many different causes. These new definitions allowed some psychiatrists to claim that CFS could be 'cured' through exercise and positive thinking which has been promoted through the [[PACE trial]] and that this 'cure' also applied to people who are severely ill with Myalgic Encephalomyelitis.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/19855350/ A review on cognitive behavioral therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based but also potentially harmful for many patients with ME/CFS.]</ref><ref>[http://www.meassociation.org.uk/2009/12/statements-of-concern-about-cbtget-provided-for-the-high-court-judicial-review/ Statements of concern about CBT/GET provided for the High Court judicial review - ME Association]</ref> [[Postviral fatigue syndrome]] (PVFS) is the next frontier of the psychological paradigm keeping control of an organic disease and have been laying groundwork to do so.<ref>[http://forums.phoenixrising.me/index.php?threads/elle-anecdotes-used-to-promote-osullivan-complain-shes-being-trolled.46176/ Mind Games - ELLE Magazine September 2016 - Phoenix Rising - '''ELLE''' Anecdotes used to promote O'Sullivan, complain she's being trolled]</ref> | ||
=== SEID name and diagnostic criteria === | === SEID name and diagnostic criteria === | ||
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In the [[United States]], 836,000 - 2.5 million people suffer from ME/CFS. "The total economic costs of ME/CFS are estimated at $17 to $24 billion annually."<ref>[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness]</ref> Some CFS patients can work with [https://www.masscfids.org/job-accommodations Job Accommodations] but 1/3 to 1/2 become unemployed and many rely on SSDI/SSI.<ref>[http://phoenixrising.me/living-i-the-basics/disability-chronic-fatigue-syndrome-mecfs Disability for CFS - Phoenix Rising]</ref><ref>[http://www.womenshealth.gov/publications/our-publications/fact-sheet/chronic-fatigue-syndrome.html CFS - Womenshealth.gov]</ref><ref>[https://www.masscfids.org/job-accommodations Job Accommodations - MASS CFIDS]</ref> | In the [[United States]], 836,000 - 2.5 million people suffer from ME/CFS. "The total economic costs of ME/CFS are estimated at $17 to $24 billion annually."<ref>[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness]</ref> Some CFS patients can work with [https://www.masscfids.org/job-accommodations Job Accommodations] but 1/3 to 1/2 become unemployed and many rely on SSDI/SSI.<ref>[http://phoenixrising.me/living-i-the-basics/disability-chronic-fatigue-syndrome-mecfs Disability for CFS - Phoenix Rising]</ref><ref>[http://www.womenshealth.gov/publications/our-publications/fact-sheet/chronic-fatigue-syndrome.html CFS - Womenshealth.gov]</ref><ref>[https://www.masscfids.org/job-accommodations Job Accommodations - MASS CFIDS]</ref> | ||
=== Female to male ratio === | ==== Female to male ratio ==== | ||
Like many auto-immune and neuro-immune diseases where mostly women are afflicted,<ref>[http://www.rightdiagnosis.com/artic/fact_sheet_autoimmune_disease_in_women_nwhic.htm Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015]</ref> the ME/CFS female/male patient ratio is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio and some ME/CFS patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref> | Like many auto-immune and neuro-immune diseases where mostly women are afflicted,<ref>[http://www.rightdiagnosis.com/artic/fact_sheet_autoimmune_disease_in_women_nwhic.htm Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015]</ref> the ME/CFS female/male patient ratio is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio<ref>[http://emedicine.medscape.com/article/329838-overview#a5 Fibromyalgia:Epidemiology - Medscape]</ref> and some ME/CFS patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref> | ||
[[Jennifer Brea]] gives a [https://en.wikipedia.org/wiki/Women's_Media_Center WMC] Live radio interview addressing F/M auto-immune ratio and the disease [https://secure-hwcdn.libsyn.com/p/1/c/3/1c390d4707a99658/WMCLive_Episode159.mp3?c_id=11198959&expiration=1458320878&hwt=eb06639b1ec5ae7b7fd4e0fd83cc70f9 at 5:00]. | [[Jennifer Brea]] gives a [https://en.wikipedia.org/wiki/Women's_Media_Center WMC] Live radio interview addressing F/M auto-immune ratio and the disease [https://secure-hwcdn.libsyn.com/p/1/c/3/1c390d4707a99658/WMCLive_Episode159.mp3?c_id=11198959&expiration=1458320878&hwt=eb06639b1ec5ae7b7fd4e0fd83cc70f9 at 5:00]. | ||
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=== Hallmark symptom === | === Hallmark symptom === | ||
*[[Post-exertional malaise]] (PEM) is the hallmark symptom of ME/CFS. After physical or mental exertion (which for some patients can be a shower or making out a to-do list, others grocery shopping, socializing or reading a news article, while some just walking to the mailbox, getting to the doctor or mentally following a T.V. program) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. The patient will experience even greater fatigue as well as | *[[Post-exertional malaise]] (PEM) is the hallmark symptom of ME/CFS. After physical or mental exertion (which for some patients can be a shower or making out a to-do list, others grocery shopping, socializing or reading a news article, while some just walking to the mailbox, getting to the doctor or mentally following a T.V. program) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. The patient will experience even greater fatigue as well as exasperate the flu-like symptoms and body pain. Every patient experiences different symptoms and symptom severity from different activities and exertion output according to how sick he or she is with the disease.<ref>[http://solvecfs.org/unraveling-post-exertional-malaise/ Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://chronicfatigue.about.com/od/cfsglossary/g/malaise.htm Post-Exertional Malaise - About.com Health - FMS/ME/CFS]</ref> | ||
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*At the '''''first stage''''', there is an acute illness where [[EBV]] is likely responsible for most adolescents but there is no standard viral illness. The initial virus likely fades away in a week and the patient feels better and is ready for regular activities. He adds "in a person with a gradual onset of symptoms, this stage would be different." | *At the '''''first stage''''', there is an acute illness where [[EBV]] is likely responsible for most adolescents but there is no standard viral illness. The initial virus likely fades away in a week and the patient feels better and is ready for regular activities. He adds "in a person with a gradual onset of symptoms, this stage would be different." | ||
*'''''Second stage''''' "occurs when the symptoms do not disappear | *'''''Second stage''''' "occurs when the symptoms do not disappear but persist for months to years in roughly the same severity. There is little variation day-to-day, and this time is very confusing. Many medical providers are contacted, most giving conflicting opinions varying from psychological disorders to possible exotic infections, but the tests come back normal." | ||
*In the '''''third stage''''' patients will have mild, gradual improvements over years and patients adjust their lives to the symptoms. Patients may look well and recovery is thought to have taken place. Some patients will make a full recovery in 3-4 years but "recovery and improvement are completely different."<ref>[http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – Open Medicine Foundation By | *In the '''''third stage''''' patients will have mild, gradual improvements over years and patients adjust their lives to the symptoms. Patients may look well and recovery is thought to have taken place. Some patients will make a full recovery in 3-4 years but "recovery and improvement are completely different."<ref>[http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – Open Medicine Foundation By David S. Bell, MD]</ref> | ||
=== Poor long term prognosis === | === Poor long-term prognosis === | ||
Dr. Bell has great concern for patients 35 years old who had become ill as teens and has been studying a group that first became ill in 1985. "Some of the young adults rated their health as “good,” while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal. Unfortunately, many of them, while they described their health as good, they were unable to work full time or carry on other duties." It is now understood that persons with ME/CFS do not have a good long term prognosis and it is actually poor as "full recovery from untreated CFS is rare."<ref>[http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – Open Medicine Foundation By | Dr. Bell has great concern for patients 35 years old who had become ill as teens and has been studying a group that first became ill in 1985. "Some of the young adults rated their health as “good,” while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal. Unfortunately, many of them, while they described their health as good, they were unable to work full time or carry on other duties." It is now understood that persons with ME/CFS do not have a good long-term prognosis and it is actually poor as "full recovery from untreated CFS is rare."<ref>[http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – Open Medicine Foundation By David S. Bell, MD]</ref> | ||
'''Few Return to Pre-illness State of Functioning''' | '''Few Return to Pre-illness State of Functioning''' | ||
In about 40% of people with ME/CFS the condition will improve over time, though recovery rates from the condition are generally quite low (less than 10%). The condition may also take a relapsing/remitting course, so individuals who appear to have recovered, may actually be in remission. For 5-20% of people, the condition is degenerative. Some studies suggest that prognosis is better for those with less severe symptoms, and who developed the condition at a younger age (childhood-young adulthood), though these findings are not consistent. It is clear that few people will return to their pre-illness state of health and functioning.<ref name="CairnsR2005prog"/><ref name="JoyceJ1997prog"/><ref name="Johnson20130706"/> | In about 40% of people with ME/CFS, the condition will improve over time, though recovery rates from the condition are generally quite low (less than 10%). The condition may also take a relapsing/remitting course, so individuals who appear to have recovered, may actually be in remission. For 5-20% of people, the condition is degenerative. Some studies suggest that prognosis is better for those with less severe symptoms, and who developed the condition at a younger age (childhood-young adulthood), though these findings are not consistent. It is clear that few people will return to their pre-illness state of health and functioning.<ref name="CairnsR2005prog"/><ref name="JoyceJ1997prog"/><ref name="Johnson20130706"/> | ||
== Drugs, treatments and therapies == | == Drugs, treatments and therapies == | ||
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===Controversy=== | ===Controversy=== | ||
Psychiatry has taken an inappropriate lead and treatment path for a biological disease. In the UK, [[GET]] and [[CBT]] are employed by ME Clinics. [[Exercise]] exacerbates symptoms and can further injure patients.<ref>[http://slightlyalive.blogspot.com/2016/03/open-letter-to-dr-sanjay-gupta-on-in.html Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS - Slightly Alive - By: Mary Schweitzer]</ref><ref>[https://you.38degrees.org.uk/petitions/get-and-cbt-are-dangerous-treatments-for-me-patients GET and CBT are dangerous treatments for ME patients - Petition - 38 Degrees - By | Psychiatry has taken an inappropriate lead and treatment path for a biological disease. In the UK, [[GET]] and [[CBT]] are employed by ME Clinics. [[Exercise]] exacerbates symptoms and can further injure patients.<ref>[http://slightlyalive.blogspot.com/2016/03/open-letter-to-dr-sanjay-gupta-on-in.html Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS - Slightly Alive - By: Mary Schweitzer]</ref><ref>[https://you.38degrees.org.uk/petitions/get-and-cbt-are-dangerous-treatments-for-me-patients GET and CBT are dangerous treatments for ME patients - Petition - 38 Degrees - By Michael Evison]</ref> Depression and anxiety drugs are utilized usually with poor and even damaging results.<ref>[http://drmyhill.co.uk/wiki/CFS_or_depression_-_what_are_the_differences CFS or depression - what are the differences - Dr. Myhill.co.uk]</ref> | ||
Treating a biological disease as a mental illness is cost effective. The drugs are inexpensive and biomedical research is not pursued. People struck down and disabled with ME/CFS are labeled with a mental health issue; disability insurance having clauses excluding a mental health illness/disease kick in stopping any payment or shortening the payout timeframe.<ref>[http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really? - By: David Tuller Virology Blog]</ref><ref>[https://www.psychologytoday.com/blog/turning-straw-gold/201212/physical-illnesses-may-soon-be-labeled-mental-disorders Physical Illnesses May Soon Be Labeled “Mental Disorders” - Psychology Today - Toni Bernhard, J.D.]</ref><ref>[http://www.theguardian.com/society/2004/apr/28/equality.mentalhealth People with mental illness face widespread discrimination - The Guardian - David Batty]</ref><ref>[http://thoughtsaboutme.com/2016/03/21/keep-an-eye-on-your-walitt-nih-study-poses-dramatic-risk-to-long-term-disability-benefits/ Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits - Thoughts About ME]</ref> | Treating a biological disease as a mental illness is cost effective. The drugs are inexpensive and biomedical research is not pursued. People struck down and disabled with ME/CFS are labeled with a mental health issue; disability insurance having clauses excluding a mental health illness/disease kick in stopping any payment or shortening the payout timeframe.<ref>[http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really? - By: David Tuller Virology Blog]</ref><ref>[https://www.psychologytoday.com/blog/turning-straw-gold/201212/physical-illnesses-may-soon-be-labeled-mental-disorders Physical Illnesses May Soon Be Labeled “Mental Disorders” - Psychology Today - Toni Bernhard, J.D.]</ref><ref>[http://www.theguardian.com/society/2004/apr/28/equality.mentalhealth People with mental illness face widespread discrimination - The Guardian - David Batty]</ref><ref>[http://thoughtsaboutme.com/2016/03/21/keep-an-eye-on-your-walitt-nih-study-poses-dramatic-risk-to-long-term-disability-benefits/ Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits - Thoughts About ME]</ref> | ||
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=== Working with government to move forward === | === Working with government to move forward === | ||
Advocates met with senate staffers the week of March 16, 2016 and discussed research and drug development by the [[NIH]], the [[CDC]] reinstating and increasing funding and education based on [[IOM]] recommendations and the [[HHS]] funding to develop Centers of Excellence.<ref>[http://www.meaction.net/2016/03/16/meaction-meets-with-senate-staffers/ #MEAction meets with Senate staffers]</ref> [[MEAction]] reports on this ongoing process. | Advocates met with senate staffers the week of March 16, 2016, and discussed research and drug development by the [[NIH]], the [[CDC]] reinstating and increasing funding and education based on [[IOM]] recommendations and the [[HHS]] funding to develop Centers of Excellence.<ref>[http://www.meaction.net/2016/03/16/meaction-meets-with-senate-staffers/ #MEAction meets with Senate staffers]</ref> [[MEAction]] reports on this ongoing process. | ||
== Different diagnostic criteria used worldwide == | == Different diagnostic criteria used worldwide == | ||
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</div> | </div> | ||
The different criteria used from one doctor to another and researcher to researcher results in confusion for doctors trying to diagnose, poor research and discord between patients, medical professionals and charitable organizations. Adding to the confusion is a clinical criteria will at times be used in research and a research criteria used by a clinician to diagnose. Many US researchers will use Fukuda (using the PEM "option") and CCC in a single research project.<ref>[http://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/ Study says scientists must agree on classifying patients - By: Sasha Nimmo - #MEAction]</ref> The [[NIH Post-Infectious ME/CFS Study]] will be using four: SEID, Fukuda, CCC and Reeves.<ref>[http://www.meaction.net/2016/02/09/positive-answers-to-initial-questions-re-nih-clinical-center-protocol/#comment-2067 Positive Answers to Initial Questions re NIH Clinical Center Protocol - #MEAction - Comments Section - "Polly"]</ref> The ME/CFS community want to participate in this study's design.<ref>[https://my.meaction.net/petitions/nih-put-me-cfs-patients-at-heart-of-research-design-process NIH: Put ME/CFS patients at heart of research design process - Petition - #MEAction]</ref><ref>[https://my.meaction.net/petitions/keep-psychiatry-out-of-nih-study-on-me-cfs PETITION - Keep Psychiatry Out of NIH Study on ME/CFS - #MEAction - By: Mary Schweitzer]</ref> | The different criteria used from one doctor to another and researcher to researcher results in confusion for doctors trying to diagnose, poor research and discord between patients, medical professionals, and charitable organizations. Adding to the confusion is a clinical criteria will at times be used in research and a research criteria used by a clinician to diagnose. Many US researchers will use Fukuda (using the PEM "option") and CCC in a single research project.<ref>[http://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/ Study says scientists must agree on classifying patients - By: Sasha Nimmo - #MEAction]</ref> The [[NIH Post-Infectious ME/CFS Study]] will be using four: SEID, Fukuda, CCC and Reeves.<ref>[http://www.meaction.net/2016/02/09/positive-answers-to-initial-questions-re-nih-clinical-center-protocol/#comment-2067 Positive Answers to Initial Questions re NIH Clinical Center Protocol - #MEAction - Comments Section - "Polly"]</ref> The ME/CFS community want to participate in this study's design.<ref>[https://my.meaction.net/petitions/nih-put-me-cfs-patients-at-heart-of-research-design-process NIH: Put ME/CFS patients at heart of research design process - Petition - #MEAction]</ref><ref>[https://my.meaction.net/petitions/keep-psychiatry-out-of-nih-study-on-me-cfs PETITION - Keep Psychiatry Out of NIH Study on ME/CFS - #MEAction - By: Mary Schweitzer]</ref> | ||
== Notable studies == | == Notable studies == | ||
=== Current === | === Current === | ||
*[[NIH Post-Infectious ME/CFS Study]] is outlined by Shannon Firth; Editor Dr. [https://en.wikipedia.org/wiki/Sanjay_Gupta Sanjay Gupta] in the article "NIH Gears Up for First-Ever Chronic Fatigue Study".<ref>[http://www.medpagetoday.com/Neurology/GeneralNeurology/56772 NIH Gears Up for First-Ever Chronic Fatigue Study - MedPage Today]</ref> An Open Letter from [[Mary Schweitzer]] to Dr. Gupta about the study.<ref>[http://slightlyalive.blogspot.com/2016/03/open-letter-to-dr-sanjay-gupta-on-in.html Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS From | *[[NIH Post-Infectious ME/CFS Study]] is outlined by Shannon Firth; Editor Dr. [https://en.wikipedia.org/wiki/Sanjay_Gupta Sanjay Gupta] in the article "NIH Gears Up for First-Ever Chronic Fatigue Study".<ref>[http://www.medpagetoday.com/Neurology/GeneralNeurology/56772 NIH Gears Up for First-Ever Chronic Fatigue Study - MedPage Today]</ref> An Open Letter from [[Mary Schweitzer]] to Dr. Gupta about the study.<ref>[http://slightlyalive.blogspot.com/2016/03/open-letter-to-dr-sanjay-gupta-on-in.html Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS From Mary Schweitzer]</ref> | ||
*Dr. [[Derek Enlander]] of Mount Sinai, NY has announced a study to prove or disprove exercise as treatment for ME/CFS patients. (Begin at 17:30 of video.)<ref>[https://www.youtube.com/watch?v=tVU8V4OWbVY&feature=youtu.be Dr. Derek Enlander - ME/CFS Alert Ep. 77 17:30 for Exercise Study]</ref> | *Dr. [[Derek Enlander]] of Mount Sinai, NY has announced a study to prove or disprove exercise as a treatment for ME/CFS patients. (Begin at 17:30 of the video.)<ref>[https://www.youtube.com/watch?v=tVU8V4OWbVY&feature=youtu.be Dr. Derek Enlander - ME/CFS Alert Ep. 77 17:30 for Exercise Study]</ref> | ||
=== Completed === | === Completed === | ||
*[[Metabolic features of chronic fatigue syndrome]] by the [[Open Medicine Foundation]] show blood chemical signature. [[ME/CFS Severely Ill, Big Data Study]] | *[[Metabolic features of chronic fatigue syndrome]] by the [[Open Medicine Foundation]] show blood chemical signature. [[ME/CFS Severely Ill, Big Data Study]] | ||
*[[Cytokine]] research by [[Mady Hornig]] and [[Ian Lipkin]] show Immune Signatures. Columbia University Mailman School of Public Health (With video)<ref>[https://www.mailman.columbia.edu/public-health-now/news/scientists-discover-robust-evidence-chronic-fatigue-syndrome-biological Scientists Discover Robust Evidence That Chronic Fatigue Syndrome Is a Biological Illness - Columbia University Mailman School of Public Health]</ref><ref>[http://simmaronresearch.com/2016/03/are-chronic-fatigue-syndrome-mecfs-and-fibromyalgia-immune-exhaustion-disorders/ Are Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Immune Exhaustion Disorders? Simmaron Research - By: Cort Johnson]</ref> | *[[Cytokine]] research by [[Mady Hornig]] and [[Ian Lipkin]] show Immune Signatures. Columbia University Mailman School of Public Health (With video)<ref>[https://www.mailman.columbia.edu/public-health-now/news/scientists-discover-robust-evidence-chronic-fatigue-syndrome-biological Scientists Discover Robust Evidence That Chronic Fatigue Syndrome Is a Biological Illness - Columbia University Mailman School of Public Health]</ref><ref>[http://simmaronresearch.com/2016/03/are-chronic-fatigue-syndrome-mecfs-and-fibromyalgia-immune-exhaustion-disorders/ Are Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Immune Exhaustion Disorders? Simmaron Research - By: Cort Johnson]</ref> | ||
*[[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder]] by [[Stanford ME/CFS Initiative]] | *[[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]] by [[Stanford ME/CFS Initiative]] | ||
*Illness progression in chronic fatigue syndrome: a shifting immune baseline<ref name="IllnessProgressionBMC2016"/> | *Illness progression in chronic fatigue syndrome: a shifting immune baseline<ref name="IllnessProgressionBMC2016"/> | ||
*[[National Centre for Neuroimmunology and Emerging Diseases]] claim to have a biomarker screening test. | *[[National Centre for Neuroimmunology and Emerging Diseases]] claim to have a biomarker screening test. | ||
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==== Documentary ==== | ==== Documentary ==== | ||
*[[Forgotten Plague]] is a | *[[Forgotten Plague]] is a US documentary about [[Ryan Prior]], an afflicted journalist who investigates the disease and its history and why the [[CDC]] has left millions sidelined from life; available for [http://www.forgottenplague.com/ streaming and DVD ''purchase'']. (2015) | ||
*[[Unrest]] is a | *[[Unrest]] is a US documentary film that will air on PBS's Independent Lens in 2018. [[Jennifer Brea]], a person with [[ME]], directs. (2017) | ||
==== Mini-doc & Short film ==== | ==== Mini-doc & Short film ==== | ||
*[[Invisible Illness - Stories of Chronic Fatigue Syndrome]] is a [https://www.youtube.com/watch?v=9_HwOUiImvw | *[[Invisible Illness - Stories of Chronic Fatigue Syndrome]] is a [https://www.youtube.com/watch?v=9_HwOUiImvw Palo Alto Online, US Mini-Doc on Youtube]. It documents 3 people with [[CFS]] suffering from the same disease in varying degrees of illness. (2015) | ||
*[[The Last Great Medical Cover Up]] is a [https://vimeo.com/143904110 | |||
*[[The Last Great Medical Cover Up]] is a [https://vimeo.com/143904110 UK short Film on Vimeo] with several patient interviews. (2015) | |||
====Shorts ==== | ====Shorts ==== | ||
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==== Talks and interviews ==== | ==== Talks and interviews ==== | ||
*[http://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose What happens when you have a disease doctors can't diagnose] Jennifer Brea gives a [https://en.wikipedia.org/wiki/TED_(conference) TED Talk] to explain her psychiatric misdiagnosis of [https://en.wikipedia.org/wiki/Conversion_disorder Conversion disorder], her correct diagnosis of [[Myalgic encephalomyelitis]], the disease impact on her life and how women are more often to receive a psychiatric misdiagnosis for a biologic disease. ( | *[http://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose What happens when you have a disease doctors can't diagnose] Jennifer Brea gives a [https://en.wikipedia.org/wiki/TED_(conference) TED Talk] to explain her psychiatric misdiagnosis of [https://en.wikipedia.org/wiki/Conversion_disorder Conversion disorder], her correct diagnosis of [[Myalgic encephalomyelitis]], the disease impact on her life and how women are more often to receive a psychiatric misdiagnosis for a biologic disease. (2016) | ||
*Jennifer Brea is interviewed for the upcoming BRIC Flix on her ME/CFS disease experience and her 2017 documentary film [[Canary in a Coal Mine]] at [https://www.youtube.com/watch?v=zeIefNymFuw 5:30 and 10:20.] (2016) | *Jennifer Brea is interviewed for the upcoming BRIC Flix on her ME/CFS disease experience and her 2017 documentary film [[Canary in a Coal Mine]] (now called Unrest) at [https://www.youtube.com/watch?v=zeIefNymFuw 5:30 and 10:20.] (2016) | ||
== Recommended reading == | == Recommended reading == | ||
====Government health organizations==== | |||
:'''USA''' | |||
:[[Centers for Disease Control]] (CDC) | |||
:*[https://www.cdc.gov/cfs/pediatric/factsheets.html Factsheets - Pediatric] Factsheets for Healthcare Professionals, Parents, and Education Professionals. (2014) | |||
:[[National Institutes of Health]] (NIH) | |||
:*[[Moving Toward Answers in ME/CFS - NIH Director's Blog (2017)]] | |||
:[[Institute of Medicine]] (IOM) | |||
:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts] From the [[Institute of Medicine report]]. (2015) | |||
:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness] Report Brief on the Institute of Medicine report. (2015) | |||
==== ME/CFS research foundations ==== | |||
:'''UK''' | |||
:[[Invest in ME]] | |||
:*[http://www.investinme.org/faqs.shtml Frequently Asked Questions] | |||
:'''USA''' | |||
:[[Open Medicine Foundation]] (OMF) | |||
:*[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS?] | |||
==== ME/CFS organizations ==== | |||
:'''Australia''' | |||
:[[Emerge Australia]] | |||
:*[https://emerge.org.au/about-mecfs/diagnosis/mecfs/ What is ME/CFS?] | |||
:'''UK''' | |||
:[[ME Association]] | |||
:*[http://www.meassociation.org.uk/about/what-is-mecfs/ What is ME/CFS?] | |||
:[[Tymes Trust]] (Pediatric) | |||
:*[http://www.tymestrust.org/pdfs/mecfsseid.pdf Pediatric ME, CFS, SEID for Families and their GPs] (2016) | |||
:'''USA''' | |||
*[ | :[[Massachusetts CFIDS/ME & FM Association]] | ||
:*[https://www.masscfids.org/cfids-me-cfs About ME/CFS] | |||
:[[Solve ME/CFS]] | |||
*[ | :*[https://drive.google.com/file/d/0B6UlcglLsyp7WkgxbmdaWXVhbVU/view What, Exactly, is a Biomarker Anyway? And Why Don't We Have One for ME/CFS?] (2017) | ||
:*[http://solvecfs.org/what-is-mecfs/ Get the Facts about ME/CFS] (2016) | |||
* | |||
*[http:// | :*[http://solvecfs.org/wp-content/uploads/2013/06/SMCI_MECFS_FactSheet.pdf What is ME/CFS?] (2013) | ||
:'''International''' | |||
* | :[[MEAction]] | ||
:*[http://www.meaction.net/wp-content/uploads/2015/10/ME-Facts-v2-1.pdf Facts about Myalgic Encephalomyelitis (ME) (Also called chronic fatigue syndrome or CFS)] (2015) | |||
* | :*[http://www.meaction.net/reports-and-fact-sheets/?utm_content=bufferc2125&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer Reports and Fact Sheets] (2015) | ||
==== National Organization for Rare Disorders (NORD) | ==== Other organizations ==== | ||
*[https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Myalgic Encephalomyelitis] | :[https://rarediseases.org/ National Organization for Rare Disorders] (NORD) | ||
:*[https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Myalgic Encephalomyelitis] | |||
==== Other reading==== | ==== Other reading==== | ||
*[http://thirdage.com/what-do-you-do-when-a-loved-one-becomes-chronically-ill/ What Do You Do When a Loved One Becomes Chronically Ill?] By | :*[http://thirdage.com/what-do-you-do-when-a-loved-one-becomes-chronically-ill/ What Do You Do When a Loved One Becomes Chronically Ill?] By Suzan Jackson | ||
==Disputed therapies== | ==Disputed therapies== | ||
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*[[List of news articles on ME and CFS]] | *[[List of news articles on ME and CFS]] | ||
*[[Sophia Mirza]]'s life ended due to CFS. | *[[Sophia Mirza]]'s life ended due to CFS. | ||
*[http://me-pedia.org/wiki/Disabled_in_Tory_Britain#PACE_trial UK agencies involved in implementation of the PACE trial. Disabled in Tory Britain - PACE trial] | *[http://me-pedia.org/wiki/Disabled_in_Tory_Britain#PACE_trial UK agencies involved in the implementation of the PACE trial. Disabled in Tory Britain - PACE trial] | ||
== Learn more == | == Learn more == |
Revision as of 19:15, December 12, 2017
Primer for the public offers a broad audience, an abundance of detailed information on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are complex, chronic, and poorly understood medical conditions. ME was first categorized as a neurological disease by the World Health Organization in 1969. CFS was first formally defined by the United States Centers for Disease Control in 1988 as a framework for researching unexplained chronic fatigue associated with a mononucleosis-like syndrome. There remains a lack of consensus among members of the medical and research communities regarding the equivalence of ME and CFS. Some believe that CFS is intended to describe the same disease entity as ME, while others believe that they are distinct conditions but with overlapping symptom profiles. In deference to this lack of consensus, the combined term 'ME/CFS' is often used.
Disease onset and course of illness[edit | edit source]
The disease ME/CFS is diagnosed when a person does not recover from a flu-like illness, EBV, Mononucleosis, HHV, Q fever, Virus or other infections and meets one or more diagnostic criteria for either ME, CFS or ME/CFS.[1][2][3] "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."[4] Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity among patients.[5][6][7]
Female to male ratio[edit | edit source]
Like many auto-immune and neuro-immune diseases where mostly women are afflicted,[8] the ME/CFS female/male patient ratio is 6:1.[9] Fibromyalgia has a F/M 7:1 ratio[10] and some ME/CFS patients have this additional diagnosis.[11][12]
Pediatric ME/CFS[edit | edit source]
Children are also afflicted with ME/CFS.[13][14] See: Pediatric.
Prognosis[edit | edit source]
Prognosis for ME/CFS is generally poor. See: Prognosis
Disease names and acronyms around the world[edit | edit source]
The United States and Australia usually refer to the disease as CFS, (Chronic Fatigue Syndrome). Many European countries, the United Kingdom and Ireland mostly use the name ME, (Myalgic Encephalomyelitis). Most countries, as well as doctors and researchers worldwide, will also use the acronym ME/CFS and a few CFS/ME. See: Definitions of ME and CFS.
The symptom Chronic fatigue (CF) should not be used in place of the name Chronic Fatigue Syndrome (CFS); this has been a source of confusion of CF the symptom and CFS the disease. CFS is a grossly misnamed disease whereas CF is a symptom of many diseases, illnesses and drug therapies.[15][16] Dr. Jarred Younger explains chronic fatigue and begins by stating "Fatigue is not a disease and it is not even a symptom. So fatigue is a alarm system and the most general alarm system the body has." Webinar with Jarred Younger, Ph.D. (@6:04-7:54)
Myalgic Encephalomyelitis (ME)[edit | edit source]
Although many similar diseases have occurred for centuries, in the 1920s - 1940s there were sporadic outbreaks around the world[17], of both poliomyelitis, and what Dr. Melvin Ramsay called 'Benign Myalgic Encephalomyelitis' ('benign because it is disabling but not usually fatal). In 1969, the World Health Organisation included "Myalgic Encephalitis' in its 'International Classification of Diseases' (ICD), under the category 'Diseases of the Nervous System', code G93.3.[18][19]
From ME to CFS[edit | edit source]
Incline Village, Lake Tahoe, NV, USA experienced an outbreak during 1984-1985. The Centers for Disease Control (CDC) were sent to investigate. Dr. Anthony Komaroff studied cases from the outbreak and eventually he and a body of clinicians settled on the name "Chronic Fatigue Syndrome".[20] Dr. Komaroff discusses the name emerging in the documentary film Forgotten Plague.
From CFS to 'any unexplained fatigue'[edit | edit source]
Various groups invented new definitions, that required only 'medically unexplained fatigue' such as Reeves criteria and Oxford criteria. Fatigue is a common symptom in any population, with many different causes. These new definitions allowed some psychiatrists to claim that CFS could be 'cured' through exercise and positive thinking which has been promoted through the PACE trial and that this 'cure' also applied to people who are severely ill with Myalgic Encephalomyelitis.[21][22] Postviral fatigue syndrome (PVFS) is the next frontier of the psychological paradigm keeping control of an organic disease and have been laying groundwork to do so.[23]
SEID name and diagnostic criteria[edit | edit source]
Systemic Exertion Intolerance Disease (SEID) is a diagnostic criteria proposed by the Institute of Medicine (IOM) in the Institute of Medicine report. This clinical criteria was developed for doctors in the United States to diagnose at 6 months instead of years or even decades. Doctors are encouraged to perform tests prior to six months, such as a Tilt table test or sleep study if symptoms require further investigation. Treating symptoms such as Orthostatic intolerance or a sleep disorder can begin prior to the six months needed to diagnose.[24]
Disease impact[edit | edit source]
"An estimated 17-20 million people suffer from ME/CFS worldwide, and 25% of them have a very severe form of it."[25][26] The 25% of patients who are severely ill are either bed-bound, wheelchair bound, or are housebound or nearly so.[27] The ME/CFS Severely Ill, Big Data Study is focused on this 25%.
All races and cultures are afflicted with ME/CFS.[28][29] Children and adolescents are also diagnosed.[30][31]
U.S.[edit | edit source]
In the United States, 836,000 - 2.5 million people suffer from ME/CFS. "The total economic costs of ME/CFS are estimated at $17 to $24 billion annually."[32] Some CFS patients can work with Job Accommodations but 1/3 to 1/2 become unemployed and many rely on SSDI/SSI.[33][34][35]
Female to male ratio[edit | edit source]
Like many auto-immune and neuro-immune diseases where mostly women are afflicted,[36] the ME/CFS female/male patient ratio is 6:1.[37] Fibromyalgia has a F/M 7:1 ratio[38] and some ME/CFS patients have this additional diagnosis.[39][40]
Jennifer Brea gives a WMC Live radio interview addressing F/M auto-immune ratio and the disease at 5:00.
Symptoms[edit | edit source]
Hallmark symptom[edit | edit source]
- Post-exertional malaise (PEM) is the hallmark symptom of ME/CFS. After physical or mental exertion (which for some patients can be a shower or making out a to-do list, others grocery shopping, socializing or reading a news article, while some just walking to the mailbox, getting to the doctor or mentally following a T.V. program) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. The patient will experience even greater fatigue as well as exasperate the flu-like symptoms and body pain. Every patient experiences different symptoms and symptom severity from different activities and exertion output according to how sick he or she is with the disease.[41][42][43]
- Regarding PEM the CFIDS Association of America states: "This is a term which describes a symptom in which exercise or exertion can bring on malaise (illness). In the case of people with ME/CFS, malaise often occurs during a period some 24-72 hours after exertion. For example, in some cases, a short walk can worsen ME/CFS symptoms two days later. This lack of understanding about the delayed onset of symptoms has, in the past, made it harder to test for ME/CFS. Follow up tests, taken less than 24 hours after an initial exercise test, may show that the patient can still perform activities at the same level (before post exertional malaise has a chance to take hold)."[44]
Core and additional symptoms (see IOM Clinicians Guide below)[edit | edit source]
- Orthostatic intolerance
- POTS
- Cognitive dysfunction
- Unrefreshing sleep
- Chronic fatigue
- Chronic pain
- Immune Impairment
- Infection
US Government guides on symptoms[edit | edit source]
Canada guides on symptoms[edit | edit source]
Other symptoms, comorbids[edit | edit source]
- Neurologic impairments - ME: ICC[45]
- Fibromyalgia, Irritable bowel syndrome, Temporomandibular joint disorder (TMJ) and Multiple Chemical Sensitivity[46]
Expanded lists of symptoms[edit | edit source]
Prognosis[edit | edit source]
Three stages[edit | edit source]
Dr. David Bell, who serves on the Scientific Advisory Board for the Open Medicine Foundation, discusses three stages of the disease in the article Prognosis of ME/CFS.
- At the first stage, there is an acute illness where EBV is likely responsible for most adolescents but there is no standard viral illness. The initial virus likely fades away in a week and the patient feels better and is ready for regular activities. He adds "in a person with a gradual onset of symptoms, this stage would be different."
- Second stage "occurs when the symptoms do not disappear but persist for months to years in roughly the same severity. There is little variation day-to-day, and this time is very confusing. Many medical providers are contacted, most giving conflicting opinions varying from psychological disorders to possible exotic infections, but the tests come back normal."
- In the third stage patients will have mild, gradual improvements over years and patients adjust their lives to the symptoms. Patients may look well and recovery is thought to have taken place. Some patients will make a full recovery in 3-4 years but "recovery and improvement are completely different."[47]
Poor long-term prognosis[edit | edit source]
Dr. Bell has great concern for patients 35 years old who had become ill as teens and has been studying a group that first became ill in 1985. "Some of the young adults rated their health as “good,” while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal. Unfortunately, many of them, while they described their health as good, they were unable to work full time or carry on other duties." It is now understood that persons with ME/CFS do not have a good long-term prognosis and it is actually poor as "full recovery from untreated CFS is rare."[48]
Few Return to Pre-illness State of Functioning
In about 40% of people with ME/CFS, the condition will improve over time, though recovery rates from the condition are generally quite low (less than 10%). The condition may also take a relapsing/remitting course, so individuals who appear to have recovered, may actually be in remission. For 5-20% of people, the condition is degenerative. Some studies suggest that prognosis is better for those with less severe symptoms, and who developed the condition at a younger age (childhood-young adulthood), though these findings are not consistent. It is clear that few people will return to their pre-illness state of health and functioning.[49][50][51]
Drugs, treatments and therapies[edit | edit source]
There are no approved drugs, appropriate treatments or reliable therapies for ME/CFS.
Controversy[edit | edit source]
Psychiatry has taken an inappropriate lead and treatment path for a biological disease. In the UK, GET and CBT are employed by ME Clinics. Exercise exacerbates symptoms and can further injure patients.[52][53] Depression and anxiety drugs are utilized usually with poor and even damaging results.[54]
Treating a biological disease as a mental illness is cost effective. The drugs are inexpensive and biomedical research is not pursued. People struck down and disabled with ME/CFS are labeled with a mental health issue; disability insurance having clauses excluding a mental health illness/disease kick in stopping any payment or shortening the payout timeframe.[55][56][57][58]
Charlatans claim they can cure CFS ("There is no cure"[59]) when in reality they may be able to treat Chronic Fatigue (CF). Some people misdiagnosed and "recovered" from CFS most likely had CF or a bad year or two with Mononucleosis along with a bout or two of Influenza. These individuals were experiencing a proper immune response whereas ME/CFS is an ongoing improper immune response.
Working with government to move forward[edit | edit source]
Advocates met with senate staffers the week of March 16, 2016, and discussed research and drug development by the NIH, the CDC reinstating and increasing funding and education based on IOM recommendations and the HHS funding to develop Centers of Excellence.[60] MEAction reports on this ongoing process.
Different diagnostic criteria used worldwide[edit | edit source]
Currently used[edit | edit source]
- Fukuda criteria (Sometimes referred to as CDC Criteria)
- Canadian Consensus Criteria (CCC)
- Oxford criteria
- International Consensus Criteria (ICC)
- Reeves criteria (Sometimes called Empirical definition)
- SEID (Recommended but not adopted.)
Currently not in use[edit | edit source]
The different criteria used from one doctor to another and researcher to researcher results in confusion for doctors trying to diagnose, poor research and discord between patients, medical professionals, and charitable organizations. Adding to the confusion is a clinical criteria will at times be used in research and a research criteria used by a clinician to diagnose. Many US researchers will use Fukuda (using the PEM "option") and CCC in a single research project.[61] The NIH Post-Infectious ME/CFS Study will be using four: SEID, Fukuda, CCC and Reeves.[62] The ME/CFS community want to participate in this study's design.[63][64]
Notable studies[edit | edit source]
Current[edit | edit source]
- NIH Post-Infectious ME/CFS Study is outlined by Shannon Firth; Editor Dr. Sanjay Gupta in the article "NIH Gears Up for First-Ever Chronic Fatigue Study".[65] An Open Letter from Mary Schweitzer to Dr. Gupta about the study.[66]
- Dr. Derek Enlander of Mount Sinai, NY has announced a study to prove or disprove exercise as a treatment for ME/CFS patients. (Begin at 17:30 of the video.)[67]
Completed[edit | edit source]
- Metabolic features of chronic fatigue syndrome by the Open Medicine Foundation show blood chemical signature. ME/CFS Severely Ill, Big Data Study
- Cytokine research by Mady Hornig and Ian Lipkin show Immune Signatures. Columbia University Mailman School of Public Health (With video)[68][69]
- Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014) by Stanford ME/CFS Initiative
- Illness progression in chronic fatigue syndrome: a shifting immune baseline[70]
- National Centre for Neuroimmunology and Emerging Diseases claim to have a biomarker screening test.
- Institute of Medicine report
Recommended viewing[edit | edit source]
Documentary[edit | edit source]
- Forgotten Plague is a US documentary about Ryan Prior, an afflicted journalist who investigates the disease and its history and why the CDC has left millions sidelined from life; available for streaming and DVD purchase. (2015)
- Unrest is a US documentary film that will air on PBS's Independent Lens in 2018. Jennifer Brea, a person with ME, directs. (2017)
Mini-doc & Short film[edit | edit source]
- Invisible Illness - Stories of Chronic Fatigue Syndrome is a Palo Alto Online, US Mini-Doc on Youtube. It documents 3 people with CFS suffering from the same disease in varying degrees of illness. (2015)
- The Last Great Medical Cover Up is a UK short Film on Vimeo with several patient interviews. (2015)
Shorts[edit | edit source]
- #MillionsMissing provides a <5 min. short UK Video 'What Is M.E.?' Discusses the disease impact on several people with ME. (2016)
News media[edit | edit source]
- Chronic Fatigue: Missing Millions (Carte Blanche DSTV) TV report, South Africa (2017)
Talks and interviews[edit | edit source]
- What happens when you have a disease doctors can't diagnose Jennifer Brea gives a TED Talk to explain her psychiatric misdiagnosis of Conversion disorder, her correct diagnosis of Myalgic encephalomyelitis, the disease impact on her life and how women are more often to receive a psychiatric misdiagnosis for a biologic disease. (2016)
- Jennifer Brea is interviewed for the upcoming BRIC Flix on her ME/CFS disease experience and her 2017 documentary film Canary in a Coal Mine (now called Unrest) at 5:30 and 10:20. (2016)
Recommended reading[edit | edit source]
Government health organizations[edit | edit source]
- USA
- Centers for Disease Control (CDC)
- Factsheets - Pediatric Factsheets for Healthcare Professionals, Parents, and Education Professionals. (2014)
- Institute of Medicine (IOM)
- Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness Report Brief on the Institute of Medicine report. (2015)
ME/CFS research foundations[edit | edit source]
- UK
- USA
ME/CFS organizations[edit | edit source]
- Australia
- UK
- Tymes Trust (Pediatric)
- Get the Facts about ME/CFS (2016)
- What is ME/CFS? (2013)
- International
- MEAction
- Reports and Fact Sheets (2015)
Other organizations[edit | edit source]
Other reading[edit | edit source]
- What Do You Do When a Loved One Becomes Chronically Ill? By Suzan Jackson
Disputed therapies[edit | edit source]
- PACE trial is a highly controversial study based on GET and CBT as therapies for ME/CFS patients. Patients, caretakers, ME/CFS charities and organizations as well as many clinicians, researchers, and others oppose this study due to outcome switching and other issues. The therapies are not just useless, they are injuring patients. (See Heading: "Drugs, treatments and therapies" and Open Letters.) David Tuller has written and spoken at length about the PACE and FINE trial.
- Lightning Process A "therapy" misused for the disease ME/CFS.
History[edit | edit source]
- Osler's Web is a book on the early history of CFS.
- Thirty Years of Disdain picks up on the ME/CFS history where Osler's Web leaves off.
- List of news articles on ME and CFS
- Sophia Mirza's life ended due to CFS.
- UK agencies involved in the implementation of the PACE trial. Disabled in Tory Britain - PACE trial
Learn more[edit | edit source]
See also[edit | edit source]
Further reading[edit | edit source]
Blogs and letters[edit | edit source]
- ME/CFS is NOT Depression. Lack of energy, not desire.[71][72][73]
- Open Letters: Patients, doctors, researchers, advocates, caretakers and other interested parties have been writing!
Other resources[edit | edit source]
References[edit | edit source]
- ↑ IOM Report - INFECTION
- ↑ The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I - Health Rising - By: Cort Johnson - June 2014
- ↑ Definitions of ME and CFS - MEpedia
- ↑ Chronic Fatigue Syndrome Myalgic Encephalomyelitis - Primer for Clinical Practitioners - 2014 Edition - Massachusettes CFIDS/FM Assoc
- ↑ Symptoms and diagnosis of ME/CFS - ME Association
- ↑ Chronic Fatigue Syndrome - Symptoms - Web MD
- ↑ Facts (ME/CFS) Severity
- ↑ Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015
- ↑ Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010
- ↑ Fibromyalgia:Epidemiology - Medscape
- ↑ Fibromyalgia - CDC
- ↑ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative
- ↑ ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation
- ↑ Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association
- ↑ Chronic Fatigue vs. Chronic Fatigue Syndrome - One's a Symptom, One's a Disease - About.com Health FMS/ME/CFS By Adrienne Dellwo
- ↑ Chronic Fatigue Versus Chronic Fatigue Syndrome What's the Difference? - About.com Health FMS/ME/CFS - By Carol Eustice
- ↑ List of outbreaks
- ↑ The WHO and M.E. (in brief) - The Hummingbirds' Foundation for M.E.
- ↑ ME/CFS Terminology - By: Margaret Williams - April - 2009
- ↑ Diagnosis of ME/CFS - What is a Syndrome
- ↑ A review on cognitive behavioral therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based but also potentially harmful for many patients with ME/CFS.
- ↑ Statements of concern about CBT/GET provided for the High Court judicial review - ME Association
- ↑ Mind Games - ELLE Magazine September 2016 - Phoenix Rising - ELLE Anecdotes used to promote O'Sullivan, complain she's being trolled
- ↑ Institute of Medicine (USA); Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (February 10, 2015), Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
- ↑ Raising Awareness for ME/CFS - Jan. 2011
- ↑ ME/CFS Documentary - About ME/CFS
- ↑ The 25% M.E. Group Website Support Group for Severe M.E. Sufferers
- ↑ Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care - Bio-Med Central - July 2011
- ↑ Why ME? - High Tea for ME
- ↑ Pediatric CFS - CDC
- ↑ Pediatric ME/CFS - MASS CFIDS/ME FMS
- ↑ Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness
- ↑ Disability for CFS - Phoenix Rising
- ↑ CFS - Womenshealth.gov
- ↑ Job Accommodations - MASS CFIDS
- ↑ Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015
- ↑ Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010
- ↑ Fibromyalgia:Epidemiology - Medscape
- ↑ Fibromyalgia - CDC
- ↑ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative
- ↑ Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts
- ↑ Chronic Fatigue Syndrome - Symptoms - Web MD
- ↑ Post-Exertional Malaise - About.com Health - FMS/ME/CFS
- ↑ - What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America
- ↑ Myalgic encephalomyelitis: International Consensus Criteria - Wiley - Journal of International Medicine
- ↑ What is ME/CFS? - Solve ME/CFS Initiative
- ↑ Prognosis of ME/CFS – Open Medicine Foundation By David S. Bell, MD
- ↑ Prognosis of ME/CFS – Open Medicine Foundation By David S. Bell, MD
- ↑ Cairns, R; Hotopf, M, "A systematic review describing the prognosis of chronic fatigue syndrome" (PDF), Occupational Medicine, 2005, 55: 20–31, doi:10.1093/occmed/kqi013
- ↑ Joyce, J; Hotopf, M; Wessely, Simon (March 1, 1997), "The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review", QJM, 90 (3), doi:10.1093/qjmed/90.3.223, PMID 9093600
- ↑ Johnson, Cort (July 6, 2013), "ME/CFS Prognosis", Health Rising
- ↑ Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS - Slightly Alive - By: Mary Schweitzer
- ↑ GET and CBT are dangerous treatments for ME patients - Petition - 38 Degrees - By Michael Evison
- ↑ CFS or depression - what are the differences - Dr. Myhill.co.uk
- ↑ Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really? - By: David Tuller Virology Blog
- ↑ Physical Illnesses May Soon Be Labeled “Mental Disorders” - Psychology Today - Toni Bernhard, J.D.
- ↑ People with mental illness face widespread discrimination - The Guardian - David Batty
- ↑ Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits - Thoughts About ME
- ↑ Management of CFS - CDC
- ↑ #MEAction meets with Senate staffers
- ↑ Study says scientists must agree on classifying patients - By: Sasha Nimmo - #MEAction
- ↑ Positive Answers to Initial Questions re NIH Clinical Center Protocol - #MEAction - Comments Section - "Polly"
- ↑ NIH: Put ME/CFS patients at heart of research design process - Petition - #MEAction
- ↑ PETITION - Keep Psychiatry Out of NIH Study on ME/CFS - #MEAction - By: Mary Schweitzer
- ↑ NIH Gears Up for First-Ever Chronic Fatigue Study - MedPage Today
- ↑ Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS From Mary Schweitzer
- ↑ Dr. Derek Enlander - ME/CFS Alert Ep. 77 17:30 for Exercise Study
- ↑ Scientists Discover Robust Evidence That Chronic Fatigue Syndrome Is a Biological Illness - Columbia University Mailman School of Public Health
- ↑ Are Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Immune Exhaustion Disorders? Simmaron Research - By: Cort Johnson
- ↑ Russell, Lindsey; Broderick, Gordon; Taylor, Renee; Fernandes, Henrique; Harvey, Jeanna; Barnes, Zachary; Smylie, AnneLiese; Collado, Fanny; Balbin, Elizabeth; Katz, Ben; Klimas, Nancy; Fletcher, Mary Ann (March 10, 2016), "Illness progression in chronic fatigue syndrome: a shifting immune baseline", BMC Immunology, 17(1): 3, doi:10.1186/s12865-016-0142-3, PMID 26965484
- ↑ Chronic Fatigue Syndrome vs. Depression: One Doctor's View Lack of Energy or Lack of Desire? About.com Health FMS/ME/CFS
- ↑ Are ME/CFS & Depression The Same Thing? - Sleepy Dust
- ↑ CFS or depression - what are the differences - Dr. Myhill.co.uk