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: chronic fatigue (CF); post-exertional malaise (PEM); unrefreshing sleep/sleep problems; and cognitive impairment/brain fog and/or orthostatic intolerance (OI).[4][5] A patient can have many more symptoms[6] 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 [7][8] and the patient may have other symptoms.[9] The Canadian Consensus Criteria (CCC) requires the core symptoms and neurological, autonomic, neuroendocrine, immune system, and myalgia to meet its ME/CFS diagnostic criteria.[10] 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.[11]

Although the Fukuda[12] and the Oxford Criteria[13] are 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).[14][15][16][17][18] 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;[19][20][21][22] these athletes may have had overtraining syndrome (which has the symptom of CF) and not ME, CFS, or ME/CFS.[citation needed] CF is a symptom of many diseases, illnesses, and drug therapies and should not be confused with the grossly misnamed disease CFS. Some people with adrenal fatigue are sometimes diagnosed with CFS.[23]

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

"The most common overlapping condition with ME/CFS is fibromyalgia."[24][25] 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.[26]

Unfortunately, a psychiatric approach has been taken with ME/CFS, but this is changing. At this time there are no approved drug treatments. Graded exercise therapy (GET) and cognitive behavioral therapy (CBT) are used in the UK inappropriately for treating ME/CFS. 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.[27] The CDC recognizes the hallmark symptom of PEM which is a worsening of symptoms after physical or mental activity[28] and says ME/CFS is a "disabling and complex disease."[29]

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.[30]

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[30]

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[31] events: usually viral or bacterial infections, but also trauma, surgery or childbirth, allergic reaction, and stress.[32] There is also a gradual onset in some people,[33][34] that is not attributed to any one event. Occasionally, ME/CFS has been triggered by environmental toxins or the receipt of an immunizing injection.[35] Some say that the disease ME always has an acute/sudden infectious onset.[36]

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 other infection, and meets one or more diagnostic criteria for either ME, CFS, or ME/CFS.[37][38] 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. Furthermore, symptoms and disease severity vary among patients.[39][40][41]

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.[42][27] The CDC notes abnormalities with the immune system, cellular metabolism, neuroendocrine disturbances, and blood pressure or heart rate regulation.[27]

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."[27]

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.[43] Nowadays, the vast majority of ME/CFS cases are sporadic rather than epidemic, and there is no clear evidence that sporadic ME/CFS cases are contagious.[44]

Families, partners, and friends do not report contracting ME/CFS from someone with the disease nor do patients report passing it on to others.[45] 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.[46] 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.[47]



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".[48]

Blood donation and organ transplant [ edit | edit source ]

Blood donation prohibition had been enacted in the United States (US) and United Kingdom (UK)[49][50] at one time due to the research of XMRV as being the infectious trigger of CFS[51] and that patients carried the virus.[52] Two papers on XMRV were retracted as it was a laboratory contamination.[53][54] The US American Red Cross and UK National Health Service Blood and Transplant sites no longer have statements barring transfusions or transplants for CFS.[55][56]Australia has a prohibition on blood transfusion as a precaution.[57]

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 condition, 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.[58][59]

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[60]

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.[61]

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."[8] Some CFS patients can work with job accommodations but 1/3 to 1/2 become unemployed and many rely on SSDI/SSI.[62][63][64]

Epidemiology All races and cultures are afflicted with ME/CFS. [65] [66] Children and adolescents are also diagnosed. [67] [68]

Female predominant diseases Like many autoimmune and neuro-immune diseases where mostly women are afflicted,[69] the ME/CFS female/male patient ratio per Capelli et al. is 6:1[70] while the CDC states 4:1.[71]

Pediatric ME/CFS is defined by the CDC[72] and the National Academy of Medicine ( NAM )[73] although it is usually diagnosed in adults.[74] "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."[75] The prognosis in adolescents is considered to be better than in adults.[76][77] Children are diagnosed with ME/CFS at three months of illness under SEID and CCC and ME is diagnosed immediately under ICC.[78][8][10][11]

"Worldwide, there may be as many as 17 – 24 million people with ME/CFS."[79] 25% of ME/CFS patients are housebound or bedbound at some point in their illness.[80][81] 90% of patients are undiagnosed.[82]

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.[83] The majority of patients remains significantly impaired. A substantial improvement however is noted in an estimated 40% of patients.[83][84]

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.[85] There are many symptoms which people with ME/CFS experience, though those listed below are the core symptoms found in all patients.

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

[86] 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.

[88] #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.

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).[97]

Other possible symptoms [ edit | edit source ]

Government guides on symptoms [ edit | edit source ]

US Government guides on symptoms

Canada guides on symptoms

Natural killer cell (NKC) Blood Test

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 condition, 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.

Ampligen

Two treatments that have garnered much attention are Ampligen, produced by Hemispherx Biopharma, and Rituximab. Many people have reported enormous benefit from Ampligen;[citation needed] some doctors have been prescribing it for ME/CFS for decades.[citation needed]

Attempts to obtain FDA approval for Ampligen in the US have failed so it is unavailable to many.[102]Argentina has approved the use of Ampligen for severe ME/CFS in 2016.[103][104] Also in 2016, it was made available on a limited basis in Europe.[105] July of 2018, Hemispherx Biopharma, Inc "announced the immediate expansion of its Treatment Protocol/Expanded Access Programs for ME/CFS in the United States, known as AMP-511, to new enrollees for the first time in more than a year."[106] AMP-511 "will allow treatment of up to 100 ME/CFS patients at any one time at approved clinical infusion therapy sites."[107]

Rituximab, a lymphoma drug, had shown promising results in initial trials in Norway,[citation needed] and there were groups crowdsourced funding for further trials in other countries. On Nov 21, 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 profile that would be responsive to Rituximab. The doctors will publish a paper next year with the specifics of the failed trial.[108]

Jarred Younger announced in early 2016 that he will be undertaking a trial of low dose naltrexone (LDN) in ME/CFS.[109][110]

Treating other conditions [ edit | edit source ]

Different forms of OI are treated with Beta-blockers (Metopropol), Fludrocortisone (Florinef), and Pyridostigmine.[111] 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.[112] 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."[112] For instance, tricyclic drugs can improve mood and help with sleep and pain. However, in some in can worsen OI. [112]

Psychiatry has taken an inappropriate lead and treatment path for an organic biological disease. In the UK, graded exercise therapy (GET) and cognitive behavioral therapy (CBT) are employed by ME Clinics. Exercise exacerbates symptoms and can further injure patients.[113][114] Depression and anxiety drugs are utilized usually with poor and even damaging results.[115]

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 time-frame.[116][117][118][119]

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.

Jennifer Brea walked home from her Neurologist's office and became wheelchair bound.

This is an experience of serious injury due to GET shared by K. Miles, via Tom Kindlon on Twitter.

Emma Shorter was able to walk a few minutes a day until GET put her in a wheelchair.

Doctor Speedy was also seriously injured by GET.

Claims of curative treatments [ edit | edit source ]

Charlatans claim they can cure CFS (per the CDC "there is no cure"[120]) when in reality they may be able to treat chronic fatigue (CF). ME/CFS patients experience an ongoing improper immune response and other abnormalities for at least 6 months straight with a reduction in activity with a specific symptom set for at least 50% of the time.[121][122][123]

Additionally, there have been media reports of some athletes diagnosed with CFS that recovered in a relatively short period of time after rest, supplementation, and diet changes[19][20][21][22] may have had overtraining syndrome, a condition they sometimes acquire,[citation needed] while some people with adrenal fatigue are sometimes diagnosed with CFS.[23]

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

MEAction input

Jul 29, 2018, CDC Revises its Information on ME[130] #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 ]

Films

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 aired on PBS's Independent Lens in 2018 and is available for streaming and DVD purchase. Jennifer Brea, a person with ME, directs. (2017)

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

ME/CFS research foundations [ edit | edit source ]

UK

US

Australia

UK

Other organizations [ edit | edit source ]

Other reading [ edit | edit source ]

Research avenues [ edit | edit source ]

Osler's Web is a book by Hillary Johnson on the early history of CFS.

is a book by Hillary Johnson on the early history of CFS. Thirty Years of Disdain by Mary Dimmock and Matthew Lazell-Fairman picks up on the ME/CFS history where Osler's Web leaves off.

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

Death certificates with ME or CFS

Merryn Crofts' death is attributed to ME.

Sophia Mirza's death is attributed to CFS.

In the UK, United States, and Australia there are claims loved ones have died due to ME/CFS.[146] See Editor's Note[147]

Notable studies [ edit | edit source ]

2014, Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome[148]

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.[148]

Top scans: Healthy control patient; Bottom scans: chronic fatigue syndrome (CFS) patient. Image By: Michael Zeineh

Images from talk: "ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study"

Choline results: (L) ME/CFS patient (R) Healthy control patient. Image discussed @16:21

Lactate results: (L) ME/CFS patient (R) Healthy control patient. Image discussed @20:02

Thermometry results: (L) ME/CFS patient (R) Healthy control patient. Image discussed @26:00

See also [ edit | edit source ]

Biopsychosocial model ( BPS ) An unproven psychiatric paradigm model applied to ME/CFS in the UK.

Learn more [ edit | edit source ]

Potential treatments and research

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 and died.

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 to make him swim and put on a scary theme park ride to scare him into moving.

ME/CFS is not depression. It is a lack of energy, not desire.[151][152]

Outbreaks