Primer for family, friends and care providers

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Primer for family, friends and care providers is for those who know or care for someone with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complicated and life-altering systemic, biological, neuroimmune disease.[1] Patient care and severity of the disease is poorly understood due to decades of research neglect and a lack of clinical care worldwide.[2][3]

Diagnosing ME/CFS is difficult as there is no clinically accepted biomarker and there are numerous definitions and criteria that have been developed and utilized over the decades.

What is ME/CFS By Open Medicine Foundation - OMF. Linda Tannenbaum, Founder & CEO/President, talks about ME/CFS and how OMF is leading research and delivering hope (2018)

The core ME/CFS symptoms are: post-exertional malaise (PEM); chronic fatigue (CF), unrefreshing sleep/sleep problems; and cognitive impairment/brain fog and/or orthostatic intolerance (OI).[4][5] A patient can have many more symptoms[1] and meet different criteria. Systemic Exertion Intolerance Disease (SEID), an ME/CFS criteria, allows for a patient to be diagnosed with the minimum core symptoms[6][5] and the patient may have other symptoms.[5] The Canadian Consensus Criteria (CCC) requires the core symptoms and neurological, autonomic, neuroendocrine, immune system, and myalgia to meet its ME/CFS diagnostic criteria.[7] The International Consensus Criteria (ICC) is used to diagnose myalgic encephalomyelitis (ME) which requires the core symptoms and neurological, immune/gastrointestinal/genitourinary impairment, and energy metabolism/ion transport impairment symptoms for a diagnosis.[8]

Although the Fukuda[9] and the Oxford Criteria[10] are sometimes used for diagnosing chronic fatigue syndrome (CFS), they are both overly broad and there is criticism that patients are being misdiagnosed in both clinical and research settings as having CFS when in fact they are suffering from the symptom chronic fatigue (CF).[11][9][12][13] There have been media reports of athletes diagnosed with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) who have recovered in a relatively short period of time after rest, supplementation, and diet changes;[14][15][16][17] these athletes may have had overtraining syndrome (which has the symptom of CF) and not ME, CFS.[18] CF is a symptom of many diseases and illnesses, and should not be confused with the grossly misnamed disease CFS. Some people with adrenal failure are sometimes wrongly diagnosed with CFS.[8]

The acronym ME/CFS is widely used in research, by clinicians and patient organizations, and patients.

"The most common overlapping condition with ME/CFS is fibromyalgia."[8][19] While some have posited ME/CFS and fibromyalgia are variants of the same illness, Benjamin Natelson, MD summoned considerable amounts of data that suggest the two illnesses differ with different pathophysiologic processes leading to different treatments.[20]

Unfortunately, a psychiatric approach has been taken with ME/CFS in the past, but this is changing. At this time there are no approved drug treatments. Until 2021 graded exercise therapy (GET) and cognitive behavioral therapy (CBT) were used in the UK for treating ME/CFS, and caused significant harm.[21][22] The Centers for Disease Control and Prevention (CDC) website states "ME/CFS is a biological illness, not a psychologic disorder" and impacts multiple body systems.[23] The CDC recognizes the hallmark symptom of post-exertional malaise which is a worsening of symptoms after physical, mental or emotional exertion[4] and says ME/CFS is a "disabling and complex disease."[24] 

Diagnostic Algorithm for SEID's minimum ME/CFS core symptoms

Recommended reading for care providers[edit | edit source]

Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome or ME/CFS) is a complex, challenging disease for everyone involved - not least the caregiver. Caring for someone with ME will require adaptability, steadfast patience and commitment over many years, if not a lifetime.[25]
Table of Contents:
1) Educate Yourself
2) Take Care of Yourself
3) Family Dynamic
4) Relationship with the Patient
5) Resources
6) Advocate
7) Power of Attorney
8) Get Organized
9) Join the Community
10) Read more[25]

Nurse Greg Crowhurst has cared for his wife Linda for decades as she is very severely ill with ME. Greg has written several books on caring for someone with ME.

Other books/guides

Disease onset and course of illness[edit | edit source]

ME/CFS can begin from many acute/sudden[26] events: usually viral or bacterial infections, but also trauma, surgery or childbirth, allergic reaction, and stress.[27] There is also a gradual onset in some people,[26][28] that is not attributed to any one event. Occasionally, ME/CFS has been triggered by environmental toxins or the receipt of an immunizing injection.[29] Some say that the disease ME always has an acute/sudden infectious onset.[30]

The disease ME/CFS is often diagnosed when a person does not recover from a flu-like illness, mononucleosis or another herpesvirus, Q fever, an unidentified virus, or another infection, and meets one or more diagnostic criteria for either ME, CFS, or ME/CFS.[31]:157-158[32] Patients experience numerous symptoms and disease severity which fluctuate from day to day, week to week, month to month, year to year, and even decade to decade.[29] Furthermore, symptoms and disease severity vary among patients.[33][34]

The CDC recognizes that there can be different causes and it is possible that two or more things could cause the illness. Areas of research include infections, immune system changes, stress affecting body chemistry, changes in energy production, and a possible genetic link.[35][23] The CDC notes abnormalities with the immune system, cellular metabolism, neuroendocrine disturbances, and blood pressure or heart rate regulation.[23]

Not a mental health disorder[edit | edit source]

In the past, CFS was believed to be a mental health disorder. This is why the CDC now states: "ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems."[23]

No clear evidence that ME/CFS is contagious[edit | edit source]

Infectious episodes have led to outbreaks over the years and 72% of ME/CFS patients report an onset of a viral or bacterial infection.[27] Nowadays, the vast majority of ME/CFS cases are sporadic rather than epidemic, and although some outbreaks have been caused by known viruses - such as the SARS pandemic and COVID-19 - there is no clear evidence that sporadic ME/CFS cases are contagious.[36]

Families, partners, and friends do not report contracting ME/CFS from someone with the disease nor do patients report passing it on to others.[37] However, Underhill and O'Gorman (2006) researched 219 patients with ME/CFS, and concluded that close household contact and genetics were both risk factors for CFS, finding 3.2% of spouses/partners of those with CFS also had the illness.[38] This was a higher prevalence than all genetic relatives except children of patients. Because ME/CFS can run in families, a genetic link is a line of research recommended by the CDC.[35]

Michael Sikora and collaborators at the Open Medicine Foundation hope that their research on the role of T cells and immune-related genes will help address "whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system".[39]

Blood donation and organ transplant[edit | edit source]

Blood donation prohibition had been enacted in the United States (US) and United Kingdom (UK)</ref>[40] at one time due to the research of XMRV as being the infectious trigger of CFS[41] and that patients carried the virus.[40] Two papers on XMRV were retracted as it was a laboratory contamination.[42][43] The US American Red Cross and UK National Health Service Blood and Transplant sites no longer have statements barring transfusions or transplants for CFS.[44][45]Australia has a prohibition on blood transfusion as a precaution.[46]

Mini-Docs[edit | edit source]

By Jen Brea/TED (2016)

What happens when you have a disease doctors can't diagnose By Jen Brea/TED

Five years ago, TED Fellow Jen Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her illness, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.[47][48]

By Veronica Weber/Palo Alto Online (2015)

Invisible Illness - Stories of Chronic Fatigue Syndrome By Veronica Weber/Palo Alto Online

This mini documentary reveals 3 stories of people who have been impacted by Chronic Fatigue Syndrome - a little known disease that affects roughly 836,000-2.5 million people in the U.S. and receives little research funding. They share emotions of treating loved ones with the disease, their frustrations of being ignored by members of society and the healthcare industry and express hopes of treatment and research. Video by Veronica Weber/Palo Alto Online[49]

By Dr. David Kaufman/Unrest (2018)

Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome By Dr. David Kaufman/Unrest

This video on the diagnosis and management of myalgic encephalomyelitis and chronic fatigue syndrome is part of the Unrest Continuing Education module, made available through the American Medical Women's Association and Indiana University School of Medicine, and in partnership with #MEAction. US medical providers can visit: https://www.unrest.film/cme to register to watch Unrest online for free and receive Continuing Education credit.[50]

Epidemiology[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."[5] Some CFS patients can work with job accommodations but 1/3 to 1/2 become unemployed and many rely on SSDI/SSI.[51][52][53]

Pediatric ME/CFS is defined by the CDC[60] and the National Academy of Medicine (NAM)[31]:181 although it is usually diagnosed in adults.[24] "Children below the age of 8 or 9 do not have the symptom pattern of adolescents past puberty. If the onset of the disease occurs during adolescence, the most common time of onset, the pattern is similar to that of adults."[61] The prognosis in adolescents is considered to be better than in adults.[62][36] Children are diagnosed with ME/CFS at three months of illness under SEID and CCC and ME is diagnosed immediately under International Consensus Criteria.[63][5][7][8]
"Worldwide, there may be as many as 17 – 24 million people with ME/CFS."[64] 25% of ME/CFS patients are housebound or bedbound at some point in their illness.[65][31]:32 90% of patients are undiagnosed.[66]
The prognosis for a patient diagnosed with ME/CFS isconsidered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning.[67] The majority of patients remains significantly impaired. A substantial improvement however is noted in an estimated 40% of patients.[67][68]

Symptoms[edit | edit source]

Symptom presentation varies enormously between individuals. Symptom presentation also varies within individuals, as individuals often report that symptoms change over time (increasing or decreasing) and new symptoms may appear while others disappear.[4] There are many symptoms which people with ME/CFS experience, though those listed below are the core symptoms found in all patients.

Rosa age 25 in 1986 and mildly ill with ME/CFS's core symptoms. In 2015 the SEID criteria were released. Rosa read about PEM and how it is delayed and makes ME/CFS symptoms like CF, OI, and cognition worse. Her life since age 17 fell into place as she never connected her worsening symptoms with increased physical, mental or emotional exertion 24-72 hours prior. She believes not understanding PEM made her illness worsen over the years and is now disabled meeting the CCC with PEM.
Brian Vastag is an American and award-winning journalist and an ME/CFS patient that won a disability case against Prudential, proving that PEM is a severe symptom that keeps him from gainful employment
I think #TwoFacesofME is a really important hashtag. We’re only out and about at our best, and our (more frequent) worst often remains hidden. I’m convinced it’s why #MEcfs research funding is so low - the problem isn’t visible enough. I’m seriously ill in both these photos.[69]
First photo, me in my wheelchair on a rare trip out. Second photo, the inevitable crash. Eye half closed, slurred speech, dizzy, weak, etc. #TwoFacesofME[70]
#TwoFacesofME First photo from the morning, the other one from the afternoon ( when I failed to nap 30-60 minutes). I am Not severely ill, and my life is ok, even [so] I wish that one day science will help me & all the #MeCfs sufferers around the globe.[71]
  • Post-exertional malaise (PEM) is the hallmark symptom of ME/CFS. After physical, mental or emotional 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)[1][4][72] there is a payback of worsening ME/CFS symptoms which can be delayed 24-72 hours, or more.[4][73][74] and can last 24 hours and even days, weeks, or months.[29][75][76] 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.[1][72] 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).[77]

Other possible symptoms[edit | edit source]

Comorbids[edit | edit source]

Government guides on symptoms[edit | edit source]

US Government guides on symptoms

Canada guides on symptoms

 Tests[edit | edit source]

Drugs, treatments, and therapies[edit | edit source]

There are currently no Food and Drug Administration (FDA) approved treatments for ME/CFS. Treatments consist mostly of symptom management, rather than treatment of the underlying cause of the illness, which is not yet understood. There are many potential treatments, though their evidence base is limited, as most research into treatments has gone into unsuccessful psychological approaches to treatment.

Drugs[edit | edit source]

Ampligen

Two treatments that have garnered much attention are Ampligen, produced by AIM ImmunoTech (formerly Hemispherx Biopharma), and Rituximab. Many people have reported enormous improvements from Ampligen, and a few recovered but relapsed when they stopped taking it.[80]

Attempts to obtain FDA approval for Ampligen in the US have failed, but it is available to some people on compassionate use.[81]Argentina approved the use of Ampligen for severe ME/CFS in 2016.[82][83] Also in 2016, it was made available on a limited basis in Europe.[84] In July 2018, AIM ImmunoTech AIM ImmunoTech announced the expansion of its US compassionate use program, known as AMP-511, to new ME/CFS patients.[85][86]

Rituximab, a lymphoma drug, had shown promising results in initial trials in Norway,[87] and there were groups crowdsourcing funding for further trials in other countries. In 2017 Drs. Øystein Fluge and Olav Mella announced that their Rituximab trial had failed. They stated that they would focus their efforts on attempting to identify a subgroup of ME/CFS patients with an immune profilethat would be responsive to Rituximab.[88] A phase III trial published in 2019 showed Rituximab does not improve ME/CFS.[89]

Jarred Younger announced in early 2016 that he will be undertaking a trial of low dose naltrexone (LDN) in ME/CFS.[90][91]

Treating other conditions[edit | edit source]

Different forms of OI are treated with beta-blockers (Metopropol), Fludrocortisone (Florinef), and Pyridostigmine.[92] When treating other diseases, illnesses, and conditions, and ME/CFS comorbids and overlapping conditions such as sleep difficulties, cognitive problems, pain, and other symptoms it is important to remember that patients are sensitive to medications.[93] The CDC advice to health care practitioners is to be aware that because all drugs can cause side effects, ME/CFS patient symptoms can worsen. "This is particularly true of any medication that acts on the central nervous system, such as sedating medications: therapeutic benefits can often be achieved at lower-than-standard doses. Patients with ME/CFS might tolerate or need only a fraction of the usual recommended doses for medications. After initial management with lower dosing, one or more gradual increases may be considered as necessary and as tolerated by the patient."[93] For instance, tricyclic drugs can improve mood and help with sleep and pain. However, in some in can worsen OI.[93]

Controversy[edit | edit source]

Jennifer Brea is an American who was studying at Harvard; while on a trip to Kenya she became very ill with what would eventually be diagnosed as ME/CFS. Brea began experiencing neurological problems. Her neurologist diagnosed her with "conversion disorder" (hysteria). When walking home from his office, she collapsed. Jen then needed to use a wheelchair, keeping her legs up due to POTS, as her blood pools into her legs
.

Psychiatry has taken an inappropriate lead and treatment path for an organic biological disease, although this is now changing. In the UK, graded exercise therapy (GET) and cognitive behavioral therapy (CBT) were employed by ME/CFS Clinics until 2021.[22] Exercise or stepped increases in activity exacerbates symptoms and were found to harm most patients, so this treatment is now advised against.[21][22]Depression and anxiety drugs have been utilized, but are ineffective.[94]

Treating a biological disease as a mental illness is not 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 illness kick in stopping any payment or shortening the payout time-frame.[95][96][97][98]

Graded exercise therapy & Cognitive behavioral therapy[edit | edit source]

Emma Shorter, is a citizen of Scotland. Here, she gives testimony before Parliament's Petitions Committee on GET and how it put her in a wheelchair

GET and CBT are usually employed in the UK, Ireland and some parts of Europe through ME Clinics. They are highly controversial and not recommended by patients, most patient advocates, and research organizations nor by many doctors or researchers outside of the UK. Based on the flawed PACE trial which used the flawed Oxford criteria to diagnose and recruit patients, GET and CBT found its way into treating people with ME/CFS.

Exercise, especially GET, can injure an ME/CFS patient further.

Claims of curative treatments[edit | edit source]

Charlatans claim they can cure CFS (per the CDC "there is no cure"[8]) when in reality they may be able to treat chronic fatigue (CF). ME/CFS patients experience an ongoing improper immune response and other medical abnormalities for at least 6 months straight with a reduction in activity with a specific symptom set for at least 50% of the time.[99][100][101]

Additionally, there have been media reports of some professional or amateur athletes diagnosed with CFS that recovered in a relatively short period of time after rest, supplementation, and diet changes[14][15][16][17] may have had overtraining syndrome,[18] while some people with anemia, allergies, idiopathic chronic fatigue or other fatiguing illnesses can be erroneously misdiagnosed with CFS.[8]

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.[102] #MEAction reports on this ongoing process.

CDC Website updates[edit | edit source]

  • Jul 12, 2018, the "Information for Healthcare Providers" tab and its sub-tabs were updated.[105][106]
  • Feb 25, 2019, Dr. Elizabeth Unger, Chief of CDC's Chronic Viral Disease Branch (CVDB), that houses the ME/CFS program, in collaboration between Medscape and the CDC put out brief video and commentary page with links to the CDC's July 12th, 2018 updates for medical professionals: Chronic Fatigue Syndrome: It's Real, and We Can Do Better.[107]

MEAction input

  • Jul 29, 2018, CDC Revises its Information on ME[108] #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.

Recommended viewing[edit | edit source]

Documentary[edit | edit source]

Films

Forgotten Plague.jpeg
Unrest.jpg

Short film[edit | edit source]

News media[edit | edit source]

Talks and interviews[edit | edit source]

  • Jennifer Brea is interviewed for the upcoming BRIC Flix on her ME/CFS disease experience and her 2017 documentary film Unrest at 5:30 and 10:20 - Youtube (2016)

Recommended reading[edit | edit source]

Government health organizations[edit | edit source]

US
Centers for Disease Control (CDC)
National Institutes of Health (NIH)
Institute of Medicine (IOM)

ME/CFS research foundations[edit | edit source]

UK
Invest in ME
US
Open Medicine Foundation (OMF)

ME/CFS organizations[edit | edit source]

Australia
Emerge Australia
UK
ME Association
Tymes Trust (Pediatric)
US
Massachusetts CFIDS/ME & FM Association
Solve ME/CFS
International
MEAction

Other organizations[edit | edit source]

National Organization for Rare Disorders (NORD)

Other reading[edit | edit source]

Research avenues[edit | edit source]

History[edit | edit source]

Deaths of ME/CFS patients[edit | edit source]

Death certificates with ME or CFS

In the UK, United States, and Australia there are further reports that loved ones have died due to ME/CFS.[123][124]

Notable studies[edit | edit source]

  • 2014, Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome[128]
Bilateral white matter atrophy is present in CFS. No differences in perfusion were noted. Right hemispheric increased FA may reflect degeneration of crossing fibers or strengthening of short-range fibers. Right anterior arcuate FA may serve as a biomarker for CFS.[128]
Top scans: Healthy control patient; Bottom scans: chronic fatigue syndrome (CFS) patient. Image By: Michael Zeineh

See also[edit | edit source]

Potential treatments and research

Learn more[edit | edit source]

Guides and reports

Patient mental health

Patients that had been deemed as suffering from mental health and not a biological illness:
  • Karina Hansen is a young Danish woman taken from her family for 3 1/2 years due to Per Fink's insistence her ME was due to mental health issues.
  • Sophia Mirza was taken forcibly from her home to a mental hospital only to be returned shortly after; she then died of ME.
  • Ean Proctor was taken from his parents as a young boy and he was told his "parents were letting him die." He had become paralyzed and mute and was let go in the deep end of a pool to make him swim, and put on a scary theme park ride to scare him into moving.

Outbreaks

References[edit | edit source]

  1. 1.01.11.21.31.4 "What is ME/CFS?". Open Medicine Foundation. Retrieved January 24, 2019.
  2. Tuller, David (February 4, 2016). "Reexamining Chronic Fatigue Syndrome Research And Treatment Policy". healthaffairs.org. Retrieved September 7, 2018.
  3. "Funding for U.S. research centers falls way short - #MEAction". #MEAction. January 22, 2017. Retrieved September 7, 2018.
  4. 4.04.14.24.34.44.5 "Symptoms of ME/CFS | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Centers for Disease Control and Prevention. January 18, 2019. Retrieved January 22, 2019.
  5. 5.05.15.25.35.45.55.6 "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness | Clinicians Guide" (PDF). National Academies. 2015. pp. 9–10.
  6. 6.06.1 "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - Diagnostic Algorithm". 2015.
  7. 7.07.1 Carruthers, Bruce M.; Jain, Anil Kumar; De Meirleir, Kenny L.; Peterson, Daniel L.; Klimas, Nancy G.; Lerner, A. Martin; Bested, Alison C.; Flor-Henry, Pierre; Joshi, Pradip; Powles, A C Peter; Sherkey, Jeffrey A.; van de Sande, Marjorie I. (2003). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" (PDF). Journal of Chronic Fatigue Syndrome. 11 (2): 7-115. doi:10.1300/J092v11n01_02.
  8. 8.08.18.28.38.48.5 Carruthers, Bruce M.; van de Sande, Marjorie I.; De Meirleir, Kenny L.; Klimas, Nancy G.; Broderick, Gordon; Mitchell, Terry; Staines, Donald; Powles, A.C. Peter; Speight, Nigel; Vallings, Rosamund; Bateman, Lucinda; Baumgarten-Austrheim, Barbara; Bell, David; Carlo-Stella, Nicoletta; Chia, John; Darragh, Austin; Jo, Daehyun; Lewis, Donald; Light, Alan; Marshall-Gradisnik, Sonya; Mena, Ismael; Mikovits, Judy; Miwa, Kunihisa; Murovska, Modra; Pall, Martin; Stevens, Staci (August 22, 2011). "Myalgic encephalomyelitis: International Consensus Criteria". Journal of Internal Medicine. 270 (4): 327–338. doi:10.1111/j.1365-2796.2011.02428.x. ISSN 0954-6820. PMC 3427890. PMID 21777306.
  9. 9.09.1 Fukuda, K.; Straus, S.E.; Hickie, I.; Sharpe, M. C.; Dobbins, J.G.; Komaroff, A. (December 15, 1994). "The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group" (PDF). Annals of Internal Medicine. American College of Physicians. 121 (12): 953–959. doi:10.7326/0003-4819-121-12-199412150-00009. ISSN 0003-4819. PMID 7978722.
  10. Sharpe, M C; Archard, L C; Banatvala, J E; Borysiewicz, L K; Clare, AW; David, A; Edwards, RH; Hawton, KE; Lambert, HP (February 1991). "A report--chronic fatigue syndrome: guidelines for research". Journal of the Royal Society of Medicine. 84 (2): 118–121. ISSN 0141-0768. PMC 1293107. PMID 1999813.
  11. "What Does a True ME Definition Look Like?". MEadvocacy.org. Retrieved January 25, 2019.
  12. US NIH Report Calls for UK Definition of ME/CFS to be Scrapped - The Argus Report By: Penny Swift
  13. Spotila, Jennie; Dimmock, Mary (August 16, 2016). "AHRQ Evidence Review Changes Its Conclusions". occupyme.net. Retrieved January 25, 2019.
  14. 14.014.1 Tanner, Claudia (2018). "Marathon runner forced to quit work after developing ME claims diet change gave him his life back". iNews.
  15. 15.015.1 Broadbent, Rick (December 2, 2017). "Muslim fighter with ME who left an arranged marriage to win world". The Times. ISSN 0140-0460. Retrieved February 28, 2019.
  16. 16.016.1 Park, Andy; O'Halloran, Clare. "Committee reviews 'potentially harmful and old fashioned' chronic fatigue treatments". ABC News. 6mins 18s.
  17. 17.017.1 Broadbent, Rick (February 27, 2019). "Nathan Douglas: London 2012 was the darkest period of my life". The Times. ISSN 0140-0460. Retrieved February 28, 2019.
  18. 18.018.1 Spence, Vance. "Snippets | A presentation by MERGE Chairman Dr Vance Spence on 12 November 2005 at the Oak Tree Court Conference Centre, Coventry, at the invitation of the Warwickshire Network for ME". Irish M.E. Association.
  19. Jason, Leonard; Taylor, R.R.; Kennedy, C.L.; Song, S; Johnson, D; Torres, S.R. (January 1, 2001). "Chronic fatigue syndrome: Comorbidity with fibromyalgia and psychiatric illness". Medicine and Psychiatry. 4: 29–34.
  20. Natelson, Benjamin H. (February 19, 2019). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia: Definitions, Similarities, and Differences". Clinical Therapeutics. 41 (4): 612. doi:10.1016/j.clinthera.2018.12.016. ISSN 0149-2918. PMID 30795933.
  21. 21.021.1 Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS) (February 27, 2019). "Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes. FINAL REPORT" (PDF). Oxford Brookes University.
  22. 22.022.122.2 NICE Guideline Development Group (October 29, 2021). "Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline". National Institute for Health and Care Excellence.
  23. 23.023.123.223.3 "Etiology and Pathophysiology | Presentation and Clinical Course | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Centers for Disease Control and Prevention. November 8, 2018. Retrieved January 22, 2019.
  24. 24.024.1 "What is ME/CFS? | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 18, 2019. Retrieved January 31, 2019.
  25. 25.025.125.225.325.4 "Caregivers Guide to ME.pdf". Google Docs. MEAction. Retrieved March 31, 2019.
  26. 26.026.1 Chu, Lily; Valencia, Ian J.; Garvert, Donn W.; Montoya, Jose G. (January 14, 2019). "Onset patterns and course of myalgic encephalomyelitis/chronic fatigue syndrome". Frontiers in Pediatrics. doi:10.3389/fped.2019.00012.
  27. 27.027.1 "CDC Public Health Grand Rounds - Chronic Fatigue Syndrome - Advancing Research and Clinical Education" (PDF). cdc.gov. p. 6.
  28. "Presentation and Clinical Course of ME/CFS | Information for Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS". Centers for Disease Control and Prevention. December 12, 2018. Retrieved February 7, 2019.
  29. 29.029.129.229.3 International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis; Friedberg, Fred; Bateman, Lucinda; Bested, Alison C; Davenport, Todd; Friedman, Kenneth J; Gurwitt, Alan R; Jason, Leonard A; Lapp, Charles W; Stevens, Staci R; Underhill, Rosemary A; Vallings, Rosamund (2014), Chronic Fatigue Syndrome Myalgic Encephalomyelitis Primer for Clinical Practitioners (PDF), Chicago, USA: International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, The illness can vary from mild to severe, with symptoms that may fluctuate significantly from hour to hour and day to day.
  30. Evans, Meredyth; Jason, Leonard (2018). "Onset patterns of chronic fatigue syndrome and myalgic encephalomyelitis" (PDF). Research on Chronic Diseases: 2.
  31. 31.031.131.2 "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". The National Academies Press. March 16, 2015. doi:10.17226/19012.
  32. 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
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post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.

orthostatic intolerance (OI) - The development of symptoms when standing upright, where symptoms are relieved upon reclining. Patients with orthostatic intolerance have trouble remaining upright for more than a few seconds or a few minutes, depending upon severity. In severe orthostatic intolerance, patients may not be able to sit upright in bed. Orthostatic intolerance is often a sign of dysautonomia. There are different types of orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

social security disability (SSD) - United States government disability benefits. Used for those who have previously paid tax and is not means tested. (Learn more: me-pedia.org)

supplementary security income (SSI) - United States government disability benefit for those who have not enough work history to claim SSD, including children. Provides payments to adults and children with a disability. Means tested. (Learn more: me-pedia.org)

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

flare-up A symptoms flare in ME/CFS is a temporary increase in symptoms, alternatively known as experiencing post-exertional malaise. May be referred to as a "crash" or "collapse".

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

postural orthostatic tachycardia syndrome (POTS) - A form of orthostatic intolerance where the cardinal symptom is excessive tachycardia due to changing position (e.g. from lying down to sitting up).

phase three Last phase of clinical trials before a drug can be approved for public use. Whereas Phase one assesses basic safety, and Phase two assesses basic efficacy, Phase three uses many trial participants to fully assess both safety and efficacy, and overall benefit/risk.

β β / Β. Greek letter beta (a symbol used in science), equivalent to "b".

adverse reaction Any unintended or unwanted response to a treatment, whether in a clinical trial or licensed treatment. May be minor or serious.

somatic symptom disorder A psychiatric term to describe an alleged condition whereby a person's thoughts somehow cause physical symptoms. The actual existence of such a condition is highly controversial, due to a lack of scientific evidence. It is related to other psychiatric terms, such as "psychosomatic", "neurasthenia", and "hysteria". Older terms include "somatization", "somatoform disorder", and "conversion disorder". Such terms refer to a scientifically-unsupported theory that claims that a wide range of physical symptoms can be created by the human mind, a theory which has been criticized as "mind over matter" parapsychology, a pseudoscience.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

atrophy A decrease in size or wasting away of a body part, e.g. muscle wasting or progressive decline. (Learn more: me-pedia.org)

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

biopsychosocial model (BPS) - A school of thought, usually based in psychology, which claims illness and disease to be the result of the intermingling of biological, psychological and social causes. (Learn more: me-pedia.org)

NICE guidelines Clinical guidelines used in the UK.

chronic disease a disease or condition that usually lasts for 3 months or longer and may get worse over time. Chronic diseases are long-term (typically incurable and requiring long-term management) but are not necessarily severe.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.