Primer for journalists: Difference between revisions

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
(Reformatted Prognosis Section)
(Added RE Template)
Line 515: Line 515:
| title  = List of ME/CFS articles published at Virology Blog
| title  = List of ME/CFS articles published at Virology Blog
| url    = http://www.virology.ws/mecfs/  
| url    = http://www.virology.ws/mecfs/  
}}</ref>
<ref name="DerekPrisk2009">{{citation
| last1  = Pheby            | first1 = D                  | authorlink1 = Derek Pheby
| last2  = Saffron          | first2 = L                  | authorlink2 = Lisa Saffron
| title  = Risk factors for severe ME/CFS
| journal = Biology and Medicine | volume = 1 | issue = 4
| date    = 2009
| eissn    = 09748369  | doi =
| url    = http://biolmedonline.com/Articles/vol1_4_50-74.pdf
}}</ref>
}}</ref>


</references>
</references>
[[Category:Primers]]
[[Category:Primers]]

Revision as of 20:24, March 22, 2017

Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS) and chronic fatigue (CF) are widely misunderstood. In this primer we provide evidence-based statements (with links to further reading & sources) to support journalists writing about the disease. Chronic Fatigue Syndrome must never be shortened to Chronic Fatigue in the body of an article or its headline. This has caused much confusion for readers who do not understand CFS is a debilitating lifelong illness and it is not the same as CF which is a symptom.

What do we know?[edit | edit source]

ME is a debilitating illness that has been recognised as a neurological condition by the World Health Organisation (WHO) since 1969.[1]

It is a systemic neuroimmune condition characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound. For moderate to severe patients, living with ME is like living with late-stage cancer, advanced stage AIDS, or congestive heart failure for decades.

In many parts of the world, it is commonly called Chronic Fatigue Syndrome.

ME/CFS costs the US economy up to $24 billion per year in direct medical costs, and lost production.[2] Despite this, funding for research is not commensurate with the level of disease burden. In the 2015 financial year, the National Institutes of Health (NIH) provided only $5 million in research funding for ME/CFS, which is less funding than hayfever. This is in stark contrast to funding levels for other similarly disabling illnesses, like Multiple Sclerosis ($105 million) and HIV/AIDS ($3 billion).[3] The Institute of Medicine, a special advisory committee of the U.S. Department of Health and Human Services (HHS) (ref: CFSAC recommendations) and NIH expert advisory panel agree that it is imperative to increase research funding into ME/CFS.[4]

Disease onset and lifelong 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.[5][6][7] 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.[8][9][10]

Pediatric ME/CFS[edit | edit source]

Children are also afflicted with ME/CFS.[11][12]

Prognosis[edit | edit source]

Prognosis for ME/CFS is generally poor. See: Prognosis

ME vs CFS vs CF[edit | edit source]

The name Myalgic Encephalomyelitis (ME) was coined following an outbreak of an illness at the Royal Free Hospital in the UK, in 1955. The name Chronic Fatigue Syndrome (CFS) was coined by the Centers for Disease Control (CDC)l following an outbreak of a flu-like illness at Incline Village, at Lake Tahoe, in the 1980s. There is disagreement as to whether (ME) and (CFS) are the same condition, entirely separate conditions, or whether ME constitutes a more severe subset of CFS. Adding to the confusion, the diagnostic name given to patients is more often dependent on the country in which they live, than differing characteristics of their condition, as some countries use CFS (eg: US, Australia), and other countries (particularly in Europe) use ME. At this point in time, there is no clear biological evidence to resolve whether the conditions are the same or different, and there is unlikely to be a resolution until firm biomarkers have been identified. As such, many patients and researchers use the term ME/CFS.[13] See: Defintions of ME and CFS.

The name Chronic Fatigue Syndrome is itself controversial, as many consider it stigmatising. In February 2016, Dr Anthony Komaroff, who was part of the Centers for Disease Control (CDC) group of clinicians who coined the name Chronic Fatigue Syndrome, said of it:

"I think that was a big mistake because the name, in my opinion, and the opinion of a lot of people, it both trivialises and stigmatises the illness. It makes it seem unimportant, maybe not even real"[14]

It is important to distinguish between ME/CFS and "chronic fatigue" (CF), which is a symptom of many different medical conditions (eg: anaemia, Hepatitis, Multiple Sclerosis, hypothyroidism, depression, ME/CFS). "Chronic fatigue" is not a condition in its own right and it is incorrect and misleading to refer to ME/CFS as "chronic fatigue". Whilst fatigue is a component of ME/CFS, many consider Post-exertional malaise (PEM) to be the cardinal feature of ME/CFS.[15][2]

It is not tiredness[edit | edit source]

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. There are many symptoms which people with ME/CFS experience, though those listed below are arguably the most common:

  • 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 exasperating 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.[16][17][18]


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)."[19]

Biological abnormalities[edit | edit source]

Because there is currently no biomedical test for ME/CFS, many have incorrectly assumed that there are no medical abnormalities found in people with the condition. As a result, ME/CFS symptoms are often considered to be medically unexplained, and therefore psychological in origin. Whilst it is true that the condition is poorly understood, many biological abnormalities have been found in a range of different body systems that have been found in ME/CFS, particularly in the Central Nervous System, Autonomic Nervous System, Immune system and energy metabolism.[2] Unfortunately, none have yet proved to be specific enough to ME/CFS as to be useful as a biomarker of the condition, and many were identified in small studies, which are in need of replication. Whilst there have been abnormalities which have been identified to be associated with the condition, it cannot yet be determined whether these are a cause or consequence of the condition.

Epidemiology[edit | edit source]

Prevalence estimates for ME/CFS range between 0.2-2.5%, depending on the definition of the condition used.[26] In the US, estimates range between 836,000 and 2.5 million people with the condition, though true numbers are under reported. It is estimated that 84-91% of people with the condition remain undiagnosed.[2]

  • Level of disability (Norwegian study HRQoL)[27] (suggests quality of life is LOWER than for many cancers, heart diseases, brain stroke, diabetes I & II, rheumatoid arthiritis, chronic renal failure, sclerosis, schizophenia, COPH, etc)

Causes & triggers[edit | edit source]

Persistence hypotheses[edit | edit source]

  • Immune findings

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."[29]

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."[30]


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.[31][32][33]

Severely ill[edit | edit source]

It is estimated that 25% of ME/CFS patients are severely ill and are housebound or bedbound.[34][35]

Treatments[edit | edit source]

There are currently no 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.[36] There are many potential treatments, though their evidence-base is limited, as most research into treatments has gone into psychological approaches to treatment.

Two treatments that have garnered much attention are Ampligen and Rituximab. Many people have reported enormous benefit from Ampligen, some doctors have been prescribing it for ME/CFS for decades. Attempts to obtain FDA approval for Ampligen in the US have failed so, despite its usefulness, it is unavailable to many. Rituximab, a lymphoma drug, has shown promising results in initial trials in Norway, and there are groups crowdsourcing funding for further trials in other countries. Jarred Younger announced in March 2016 that he will be undertaking a trial of Low dose naltrexone (LDN) in ME/CFS.[37]

Exercise as treatment[edit | edit source]

Two common treatment recommendations for ME/CFS are Graded Exercise Therapy (GET) and Cognitive behavioral therapy (CBT). These treatments are based on the hypothesis that the condition might have begun with a viral infection, but has been perpetuated by deconditioning from lack of activity, and fear and avoidance of activity. GET & CBT are aimed at addressing these hypothesised causes by challenging the unhelpful thoughts that result in avoidance of activity, and reconditioning through a gradual increase in exercise. These treatments are controversial, and are at odds with much of the research literature, which suggests that exercise may actually be harmful for people with ME/CFS. A large patient survey of treatment responses found that 74% of people who had tried GET, reported that their symptoms subsequently worsened,[38] which is consistent with other patient surveys.[39]

The PACE trial, published in 2011, is the largest GET trial ever conducted. It has received much publicity as a result of its claims of recovery rates, though it has come under strong criticism from within both the scientific and patient community, for significant flaws in its design, and for overstating (and in some cases misrepresenting) outcomes in both the initial trial, and follow up studies.[40] The study was the subject of a series of investigative pieces by journalist David Tuller in late 2015, that were highly critical of the trial.[41] A petition signed by almost 12,000 ME/CFS patients and allies,[42] and an open letter signed by 42 ME/CFS experts from around the world,[43] were sent to The Lancet, both calling for the data to be reanalysed. Twenty four ME/CFS organisations from 14 different countries have written to Queen Mary University London requesting that the trial data be released for reanalysis.[44] To date, the authors of the trial and editor of The Lancet have refused such requests. Despite such criticism, the PACE trial continues to influence both government and the medical profession's approach to the treatment of ME/CFS in many countries.

One of the reasons that exercise may be harmful to people with ME/CFS, is the presence of Post-exertional malaise (PEM), which is an exacerbation of symptoms following physical, mental or even emotional exertion. Studies have revealed immunological, muscular, neurological, autonomic and cardiovascular abnormalities in response to exercise in people with ME/CFS. As these results are not also found in healthy sedentary controls, the adverse effects of exercise cannot be said to be due to deconditioning.[45][46][47]

People with ME/CFS should approach exercise with caution, as there is much potential for harm.

Anaerobic threshold, use of HR monitors for activity and pacing. Analeptic, not aerobic. Energy envelope/pacing - people do better if stay within their envelope, than push to increase activity

Severely ill patients[edit | edit source]

Considerable variation exists in the severity of the condition. The International Consensus Criteria lists the following severity levels (it should be noted that even "mild" ME/CFS consists of significant debility):

  • Mild = 50% reduction in pre-illness activity levels
  • Moderate = mostly housebound
  • Severe = mostly bedridden
  • Very Severe = totally bedridden, and needing help with basic functions.

At least 25% of people with ME/CFS are bedbound or housebound, often for years or even decades, so are largely an invisible population.[2] So invisible in fact, that they have rarely been included as part of research, because their level of debility precludes them from travelling to laboratories for required testing. The Open Medicine Foundation's ME/CFS Severely Ill, Big Data Study will be the first in depth study into people with a severe form of ME/CFS. This study has so far produced the groundbreaking paper Metabolic features of chronic fatigue syndrome.

Notable patients with severe ME/CFS include Whitney Dafoe, Karina Hansen, Lynn Gilderdale, Laura Hillenbrand, Tom Kindlon, Vanessa Li, Doctor Speedy, Naomi Whittingham.

Though uncommon, there have been instances of deaths which have been attributed to the condition (see Sophia Mirza).

Patients & psychiatry/psychology[edit | edit source]

Stigmatization[edit | edit source]

  • Pretty young women slumped on desk
  • Yuppie Flu
  • Accusations of laziness/lethargy
  • Epidemiological evidence - age, gender, demographic, racial/cultural

Accusations of harassment[edit | edit source]

  • Tiny %
  • No arrests or convictions
  • Poor treatment of patients not mentioned. Ean Proctor and "The Mental Health Movement: Persecution of Patients?"[48]

Expert opinions[edit | edit source]

Quotes from ME/CFS experts and patients[edit | edit source]

Doctors for expert opinions[edit | edit source]

<Add doctors in each country that are specialists, and willing to provide expert comment to the press>

Researchers[edit | edit source]

<Add researchers in each country, by speciality, that are willing to provide expert comment to the press>

Patients[edit | edit source]

U.S.[edit | edit source]

U.K.[edit | edit source]

Australia[edit | edit source]

Ireland[edit | edit source]

Patient groups & charities[edit | edit source]

Patient groups

History[edit | edit source]

Other tips[edit | edit source]

  • Always interview a patient
  • Interview more than one researcher (not just from the psychological aetiology view)
  • Avoid using derogatory, outdated & incorrect term "Yuppie Flu"
  • Never shorten the disease name Chronic Fatigue Syndrome (CFS) to the symptom chronic fatigue (CF). CFS, ME or ME/CFS can be used to save print space.
  • Use photographic imagery that represents the reality for patients - serious illness & disability - not well-groomed & slightly tired office workers at their computer or students with a pile of books sleeping at their desk. Solve ME/CFS Initiative's Times Square Public Awareness Ad shows the reality of the disease ME/CFS. Using photos of patients whether chronically ill yet functioning or a severely ill patient, or stock photos that reflect life with this disease is necessary.

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. reference needed for WHO class since 1969
  2. 2.0 2.1 2.2 2.3 2.4 Institute of Medicine (USA) (February 10, 2015), Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, Washington, DC, USA: The National Academies Press, ISBN 978-0-309-31689-7
  3. reference needed for NIH funding levels
  4. National Institutes of Health (USA) (December 9, 2014), NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (PDF)
  5. IOM Report - INFECTION
  6. 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
  7. Definitions of ME and CFS - MEpedia
  8. Symptoms and diagnosis of ME/CFS - ME Association
  9. Chronic Fatigue Syndrome - Symptoms - Web MD
  10. Facts (ME/CFS) Severity
  11. ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation
  12. Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association
  13. Klimas, Nancy (June 21, 2014), ME/CFS Diagnosis and Name with Dr. Nancy Klimas (video)
  14. Komaroff, Anthony; Iskander, John (February 17, 2016), "Interview with Dr Anthony Komaroff", CDC Public Health Ground Rounds - Beyond the Data - Chronic Fatigue Syndrome: Advancing Research and Clinical Education
  15. reference needed CCC
  16. Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts
  17. Chronic Fatigue Syndrome - Symptoms - Web MD
  18. Post-Exertional Malaise - About.com Health - FMS/ME/CFS
  19. - What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America
  20. Nakatomi, Yasuhito; Mizuno, Kei; Ishii, Ishii; Yasuhiro, Wada; Masaaki, Tanaka; Shusaku, Tazawa; Kayo, Onoe; Sanae, Fukuda; Joji, Kawabe; Kazuhiro, Takahashi; Yosky, Kataoka; Susumu, Shiomi; Kouzi, Yamaguti; Masaaki, Inaba; Hirohiko, Kuratsune; Yasuyoshi, Watanabe (March 24, 2014), "Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An ¹¹C-(R)-PK11195 PET Study", Journal of Nuclear Medicine, 2014 Jun, 55(6): 945-50, doi:10.2967/jnumed.113.131045, PMID 24665088
  21. Johnson, Cort (January 26, 2015), Getting “Younger”: Leptin, Chronic Fatigue Syndrome and Fibromyalgia]
  22. Stanford Medicine - News Center (October 28, 2014), Study finds brain abnormalities in chronic fatigue patients]
  23. Tuller, David (November 24, 2014), "Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder", New York Times, Well Blogs
  24. Chronic Fatigue Patients Suffer 3 Major Brain Abnormalities; Findings May Lead To Clearer Diagnosis. - Private Health Care
  25. Hornig, Mady; Montoya, José G; Klimas, Nancy G; Levine, Susan; Felsenstein, Donna; Bateman, Lucinda; Peterson, Daniel L; Gottschalk, C Gunnar; Schultz, Andrew F; Che, Xiaoyu; Eddy, Meredith L; Komaroff, Anthony L; Lipkin, W Ian (February 1, 2015), "Distinct plasma immune signatures in ME/CFS are present early in the course of illness", Science Advances, Vol 1, No. 1
  26. Carruthers, BM; van de Sande, MI; De Meirleir, KL; Klimas, NG; Broderick, G; Mitchell, T; Staines, D; Powles, ACP; Speight, N; Vallings, R; Bateman, L; Baumgarten-Austrheim, B; Bell, DS; Carlo-Stella, N; Chia, J; Darragh, A; Jo, D; Lewis, DP; Light, AR; Marshall-Gradisnik, S; Mena, I; Mikovits, JA; Miwa, K; Murovska, M; Pall, ML; Stevens, SR (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, PMID 21777306
  27. Hvidberg, Michael Falk; Brinth, Louise Schouborg; Olesen, Anne V; Petersen, Karin D; Ehlers, Lars (July 6, 2015), "The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)", PLoS One, doi:10.1371/journal.pone.0132421
  28. 28.0 28.1 28.2 28.3 Hickie, Ian; Davenport, Tracey; Wakefield, Denis; Vollmer-Conna, Ute; Cameron, Barbara; Vernon, Suzanne D; Reeves, William C; Lloyd, Andrew; Dubbo Infection Outcomes Study Group (September 14, 2006), "Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study", BMJ, 2006, 333:575, doi:10.1136/bmj.38933.585764.AE, PMID 16950834
  29. Prognosis of ME/CFS – Open Medicine Foundation By: David S. Bell, MD
  30. Prognosis of ME/CFS – Open Medicine Foundation By: David S. Bell, MD
  31. 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
  32. 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
  33. Johnson, Cort (July 6, 2013), "ME/CFS Prognosis", Health Rising
  34. Pheby, D; Saffron, L (2009), "Risk factors for severe ME/CFS" (PDF), Biology and Medicine, 1 (4), eISSN 0974-8369
  35. ME/CFS Patient Survey Report: Ministry of Health Survey Reveals Harsh Reality of ME/CFS Patients in Japan - IACFSME - By Mieko Shinohara
  36. International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME); 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 (July 2014), "2014 Primer for Clinical Practitioners (CFS/ME)" (PDF), IACFS/ME
  37. http://www.psy.uab.edu/younger/research.html
  38. ME Association (UK) (May 29, 2015), Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS
  39. "Norwegian patient survey: Experiences of therapeutic approaches (2012)", Phoenix Rising Forum, February 22, 2016
  40. http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext
  41. List of ME/CFS articles published at Virology Blog
  42. #MEAction (October 2015), "Petition: Misleading Claims Should Be Retracted", #MEAction
  43. Davis, Ronald W; Edwards, Jonathan C W; Jason, Leonard A; Levin, Bruce; Racaniello, Vincent R; Reingold, Arthur L; Ablashi, Dharam V; Baraniuk, James N; Barcellos, Lisa F; Bateman, Lucinda; Bell, David S; Bested, Alison C; Broderick, Gordon; Chia, John; Chu, Lily; Enlander, Derek; Fletcher, Mary Ann; Friedman, Kenneth; Kaufman, David L; Klimas, Nancy; Lapp, Charles W; Levine, Susan; Light, Alan R; Marshall-Gradisnik, Sonya; Medveczky, Peter G; Nahle, Zaher; Oleske, James M; Podell, Richard N; Shepherd, Charles; Snell, Christopher R; Speight, Nigel; Staines, Donald; Stark, Philip B; Stein, Eleanor; Swartzberg, John; Tompkins, Ronald G; Underhill, Rosemary; Vallings, Rosamund; VanElzakker, Michael; Weir, William; Zinn, Marcie L; Zinn, Mark A (February 10, 2016), "An open letter to the Lancet - again", Virology Blog
  44. #MEAction (March 13, 2016), 24 organisations in 14 countries tell QMUL: Release the PACE data
  45. Twisk, Frank NM; Geraghty, Keith J (July 11, 2015), "Deviant Cellular and Physiological Responses to Exercise in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome" (PDF), Jacobs Journal of Physiology, 2015, 1(2): 007
  46. reference needed - Workwell Foundation studies
  47. reference needed - the Lights epigenetic changes post-exercise
  48. The Mental Health Movement: Persecution of Patients?