Quotes from patients, clinicians, researchers, politicians, government officials and reports, organised into topics.

COVID-19 and ME/CFS’s extraordinary how many people have a postviral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome.

– Dr Anthony Fauci, Director, National Institute of Allergy and Infectious Diseases (NIAID), interview with Medscape p3, 27 July, 2020

It is important to note that post-viral conditions are not a new concept. Many, but not all, of the symptoms reported in Long COVID, including fatigue, post-exertional malaise, chronic musculoskeletal pain, sleep disorders, postural orthostatic tachycardia (POTS), and cognitive issues, overlap with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

ME/CFS is a serious disease that can occur following infection and make people profoundly sick for decades. Like Long COVID, ME/CFS is a heterogenous condition that does not affect everybody in the same way, and the knowledge gained through research on Long COVID may also positively impact the understanding, treatment, and prevention of POTS, ME/CFS, and other chronic diseases.

Walter J. Koroshetz, M.D., National Institute of Neurological Disorders and Stroke, Understanding Long-Term COVID-19 Symptoms and Enhancing Recovery, NIH Director's Blog, 4 October, 2022

Government reports describe ME/CFS

ME/CFS is a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, Institute of Medicine, 2015, p5

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex and debilitating condition, characterised by profound fatigue following exertion (not relieved by sleep or rest), unrefreshing sleep and cognitive impairment. Secondary symptoms may include gastrointestinal disorders, muscle and joint pain and immune impairments. Post exertional malaise (PEM) is suggested as a cardinal feature of ME/CFS.

ME/CFS Advisory Committee Report to the NHMRC Chief Executive Officer, 2019

Clinicians on ME/CFS

…for those who have studied the disease for many years, it is apparent that the most serious issue in CFS is a kind of brain malfunction ...... But for most practitioners who can barely keep up with their schedules, it is vastly easier to dismiss an illness as imaginary than to grapple with brain physiology.

– Dr David Bell, ME/CFS clinician and researcher, Faces of CFS, 2000

There is immune activation, it is dysfunctional cells and a significant degree of malfunction of the immune system….I have no difficulty to say with great certainty that the immune system in ME/CFS is not working as it should.

– Dr Nancy Klimas, ME/CFS researcher and clinician, interview, IACFS/ME Conference, 2011

We do not know the cause of CFS for the same reason that we do not know the cause of many neurologic diseases: we have not yet been clever enough to figure it out.

– Dr A L Komaroff, ME/CFS clinician, nature reviews neuroscience, 2011

Degree of disability

... the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions.

– Dr William Reeves, CDC Chief of Viral Diseases Branch, CDC Press Conference, 2006

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses I would rather have H.I.V.

– Dr Nancy Klimas, AIDS and ME/CFS researcher and clinician, New York Times, 15 Oct 2009

[An ME/CFS patient] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.

– Prof Mark Loveless, AIDS and ME/CFS Clinic, Oregon Health Sciences University, Congressional Briefing, 1995

Problems with the name

CFS/chronic fatigue syndrome is an absolutely dreadful name for a serious and debilitating neurological illness. It is the equivalent of saying someone with dementia has a chronic forgetfulness syndrome. CFS needs to be placed in the medical dustbin of obsolete names as soon as possible.

– Dr Charles Shepherd, Medical Advisor, ME Association, UK, Feb 2015

Eventually I received a diagnosis of 'chronic fatigue syndrome,' a name that feels insulting when your entire life has been stolen from you.

– Ryan Prior, Wish Dish, 2006

The illness, though similar to non-paralytic poliomyelitis in many clinical aspects, could clearly be distinguished and was diagnosed as Benign Myalgic Encephalomyelitis. This name gives a clearer clinical description than many of the eponyms used previously... or invented subsequently... [which] share the common disadvantage of obscuring the world-wide incidence or of trivialising the clinical severity of the illness.

– Dr A Melvin Ramsay, Chapter 7, Myalgic Encephalomyelitis - Then and Now. An Epidemiological Introduction, 1992

If it were called chronic neuroinflammatory disease, then people would understand it. Until today nobody's been willing to change the name, but now there's proof that inflammation occurs in the brain and there's evidence that patients with this illness experience a level of disability that's equal to that of patients with late-stage Aids, patients undergoing chemotherapy, or patients with multiple sclerosis.

– Dr Nancy Klimas, AIDS and ME/CFS researcher and clinician, University of Miami, Press Conference, 2006

Stigma and disbelief

Patients ...[are] dismissed, negatively stereotyped and stigmatised ... Poor clinician-patient interaction can be seen as a form of epistemic injustice ... The IOM reports that approximately 84% of those afflicted with ME/CFS remain undiagnosed and that those diagnosed waited six years or more to receive a diagnosis.

– ME/CFS Advisory Committee Report to the NHMRC Chief Executive Officer, 2019, p12

.. for too long people who journey with ME/CFS have been ignored, belittled and written-off by society and their government and have been denied care and have suffered discrimination due to outdated and poorly formulated medical guidelines...

– Senator Siewert, on behalf of Senator Steele-John, Senate Hansard,13 May 2020, p2303

Sickness doesn't terrify me and death doesn't terrify me. What terrifies me is that you can disappear because someone is telling the wrong story about you. I feel like this has happened to all of us living this.

– Jennifer Brea, US patient, Unrest documentary, 2017

In combination, the uncertainties in diagnosis, disease mechanisms and management approaches have contributed to patients experiencing stigma, isolation, delays in diagnosis, misdiagnosis, lack of supportive care and unintended harm.

ME/CFS Advisory Committee Report to the NHMRC Chief Executive Officer, 2019, Executive Summary p.v

"People don’t believe you when you tell them that you are ill, so you keep quiet, even when I had been admitted to hospital, as medics can often turn on you in contempt at the mention of ME."

– Carol Monaghan, UK MP, Hansard, 24 Jan 2018

Life-changing impact

Based on one report from the USA, approximately 13% of patients diagnosed with ME/CFS maintain employment, 25% become housebound or bedbound...

– ME/CFS Advisory Committee Report to the NHMRC Chief Executive Officer, 2019

...CFS sufferers are driven to suicide by loneliness and self-doubt, which arrive part and parcel with the disease itself. Although they are ill with a debilitating flu-like illness every day of their lives, neighbors and even friends and family insist they look “just fine.”

– Dr David Bell, ME/CFS clinician and researcher, Faces of CFS, 2000

...For these individuals, ME is a life sentence, but it is a life spent existing, not living.

– Carol Monaghan, UK MP, Hansard, 24 Jan 2018

I can't do this for much longer. It's like I'm just watching my life disappear.

– Ren Gill, aged 27, UK patient, Unrest documentary, 2017 the age of 15, she was bedridden, paralysed, unable to feed or wash herself and utterly dependent on carers. Doctors, psychiatrists and social services all failed her when she was eight......Children who are already blighted by ME must not be subjected to this trauma.

– Carol Monaghan, UK MP, Hansard, 24 Jan 2018

"I have no idea what a life without chronic pain is, I don't know what it’s like to be able to tolerate noisy bright spaces, what it’s like to remember the conversations I’ve had with those I love…I have slowly watched my life disappear over many years, and now I’m entirely dependent on my parents..."

– Carol Monaghan, UK MP, Hansard, 24 Jan 2018

Fatigue is what we experience, but it is what a match is to an atomic bomb.

– Laura Hillenbrand, author of Seabiscuit and Unbroken, An Author Escapes From Chronic Fatigue Syndrome, NYT, 4 Feb, 2011

Invisible community

I am struggling to think of a cohort of people in our community that large for whom there is so little.

– Senator Scott Ludlam, Senate Estimates, 21 Oct 2015

There is no one coming to look for me because no one even knows that I went missing.

– Jennifer Brea, US patient, Unrest documentary, 2017

I feel like I'm a broken battery that's stuck at 10% and when we crash we disappear so you never see us at our worst.

– Jennifer Brea, US patient, Unrest documentary, 2017

Health care

...there are still no effective treatments for this life-changing, life-stealing and cruel condition.

– Carol Monaghan, UK MP, Hansard, 24 Jan 2018

Other barriers to accessing clinical care raised during public consultation included hypersensitivities to light, sound and smell, and difficulty finding a place to lie down to help manage orthostatic intolerance during a clinical appointment. Housebound, bedbound and rural patients have reported difficulties in accessing healthcare services, further impeding effective care.

ME/CFS Advisory Committee Report to the NHMRC Chief Executive Officer, 2019, p12

A 2005 UK survey indicated that only half of General Practitioner (GP) respondents believed that ME/CFS was a real condition. These results are similar to those of an Australian survey of GPs conducted in 2000, indicating medical education and training is a key priority in addressing barriers to effective health care.

ME/CFS Advisory Committee Report to the NHMRC Chief Executive Officer, 2019, p12

Many of the documented abnormalities involve the central and autonomic nervous systems. In my experience, most sceptics are unaware of the extensive literature citing such abnormalities and become less sceptical upon reading it.

– Dr A L Komaroff, ME/CFS clinician, nature reviews neuroscience, 2011

Harmful therapy

We can't assume a system that adapts normally to a progressive or graded training stimulus.

Todd Davenport, Physiotherapist, University of the Pacific, webinar for Kolling Institute, 22 June 2023

The whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane.

– Dr. Paul Cheney, CFS researcher and clinician, Invest in ME conference, May 2010

[I am] a doctor who has been bedridden with severe ME for a long period after [graded exercise therapy] GET caused a severe relapse from which I have not recovered...

– Dr Mark Vink, ME/CFS patient, clinician and researcher

As a physician bedridden with myalgic encephalomyelitis (ME) for more than a decade who is totally dependent on others, all thanks to a major relapse caused by GET, I am in a unique position to answer how harmful GET and cognitive behavioral therapy (CBT) really are. The basis of these therapies is false illness beliefs, meaning that it is all in the mind. These beliefs ignore all of the evidence that ME is a physical disease, such as intracellular immune dysfunctions, which not only restrict exercise capacity but also worsen with exercise.

– Dr Maik Speedy, Annals of Internal Medicine, Dec 2015

Last edited: 22 June, 2023