ME/CFS Quotes
Curated for ME Education
Body Text
Websites of Quotes:
+ Me-Pedia:
http://me-pedia.org/wiki/Individual_Quotes
"Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness."[10] ~ Betsy Keller, PhD
“(CFS patients) feel 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, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University[13]
"My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or care for their families. I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million (to 4 million) people in the United States alone, has had a small fraction of the research dollars directed towards it.” ~ Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami[14]
2013, "I am a reporter and my beat is hell ... It is the hell of those who live with a disease that is incurable, has inadequate therapies, indifferent government attitudes, social stigma and no strong public voice…" ~ Llewellyn King[21]
“Fatigue is what we experience, but it is what a match is to an atomic bomb.”[24] ~ Laura Hillenbrand
"Eventually I received a diagnosis of 'chronic fatigue syndrome,' a name that feels insulting when your entire life has been stolen from you."[31] ~ Ryan Prior
“Psychiatry has become the place where we shunt illnesses that we don’t yet understand.”[39] ~ Jennifer Brea
+ Healing CFSME: http://www.healingcfsme.com/quotes-chronic-fatigue-syndrome.html
“Our findings show clearly that ME/CFS is an inflammatory disease and provide a solid basis for a diagnostic blood test.” -Dr. Mark Davis, professor immunology and microbiology, Stanford University, July 2017
“There are over 4,000 published studies that show underlying biological abnormalitites in patients with this illness.” -Dr. Anthony Komaroff, Harvard
+ It’s Time For Doctors To Apologize To ME Patients: http://www.telegraph.co.uk/news/health/12033810/Its-time-for-doctors-to-apologise-to-their-ME-patients.html
Opening the 2015 research collaborative section of neuropathology, Jose Montoya, professor of medicine at the University of Stanford, said: “I have a wish and a dream that medical and scientific societies will apologise to their ME patients."
+ Important Quotes about Myalgic Encephalomyelitis:
“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.” — Dr. Daniel Peterson (Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:34:123125)
“Hopefully one day, my dream is that our medical community will produce a formal apology to the patients that—not having believed them all these years—they are facing a real illness.” — Dr. Jose Montoya, CFS researcher and clinician, Stanford University (during a lecture on Chronic Fatigue Syndrome at Stanford University on March 3, 2011)
We’ve documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, endstage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some wellknown, very severe medical conditions.” – Dr. William Reeves, former CDC Chief of Viral Diseases Branch (2006 CDC Press Conference)
“It’s amazing to me that anyone can look at these patients and not see that this is an infectious disease that has ruined lives.” – Dr. Judy Mikovits, Medical Director of the WhittemorePeterson Institute for NeuroImmune Disease (“A Case of Chronic Denial,” New York Times, October 20, 2009)
+ Thoughts About ME:
https://thoughtsaboutme.com/quotes/
“My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”—Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami (“Readers Ask: A Virus Linked to Chronic Fatigue Syndrome,” New York Times, October 15, 2009)
We’ve documented, as have others, that 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, former CDC Chief of Viral Diseases Branch (2006 CDC Press Conference)
“The bad news is we don’t know what causes it or how to treat it successfully. But the good news is that there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It’s not an illness that people can just imagine that they have, and it’s not a psychological illness. In my view, that debate, which has raged for 20 years, should now be over.” – Dr. Anthony Komaroff, CFS clinician and researcher, Harvard Medical School (2006 Press Conference)
“It’s amazing to me that anyone can look at these patients and not see that this is an infectious disease that has ruined lives.” – Dr. Judy Mikovits, Medical Director of the Whittemore-Peterson Institute for Neuro-Immune Disease (“A Case of Chronic Denial,” New York Times, October 20, 2009)
“[ME/CFS patients] 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, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)
“In my experience, it is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.”—Dr .Daniel Peterson, ME/CFS clinician (Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125).
“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. If the word ‘polarized’ means that opinions will remain unchanged regardless of the evidence, I would like to think that this is not the case. And I am not sure that the CFS field is more polarized than other fields. The reception that the prion hypothesis (which states that a prion is a protein that can replicate without the use of nucleic acid) received for more than a decade comes to mind. So, too, does the current debate over the possible aetiologic role of Epstein–Barr virus in multiple sclerosis.—Dr. Anthony L. Komaroff, CFS clinician, Harvard Medical School (“Chronic fatigue syndrome: understanding a complex illness,” Nature Reviews Neuroscience 12, 539-544 (September 2011) | doi:10.1038/nrn3087)
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. Anthony L. Komaroff, CFS clinician, Harvard Medical School (“Chronic fatigue syndrome: understanding a complex illness,” Nature Reviews Neuroscience 12, 539-544 (September 2011) | doi:10.1038/nrn3087)
Question: “Some in the scientific community believe that immune findings are inconsistent and uncertain in ME / CFS. What is your comment on that?”
Answer: “I am so frustrated with those who say that, because we have been doing this for 25 years. Look at the studies of many patients – those who have a hundred or two hundred patients – and they tell you the same. It is not difficult. I mean immune findings in ME / CFS is proved. It is not controversial, and it is not just a hypothesis. 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, CFS researcher and clinician, University of Miami (Interview during the IACFSME Conference in Ottawa, September 2011)
+ Living With Chronic Fatigue Syndrome:
https://livingwithchronicfatiguesyndrome.wordpress.com/2009/11/16/how-severe-cfs-is/
“I split my clinical time between the two illnesses (CFS and HIV), and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”
Dr Kilimas
“I have treated more than 2500 AIDS and CFS patients over the past 12 years and my CFS patients are MORE sick and MORE disabled, every single day, than my AIDS patients are, except in the last two weeks of life!”
Dr. Marc Loveless
“I have had CFS for 25 years and am an 18-year survivor of bilateral breast cancer. To date, the CFS has been far more devastating and disabling than the cancer. Recently, our 32 year-old daughter was diagnosed with early stage breast cancer. Certainly, it was a blow to her and our family to discover she had a cancer in her body which could kill her. But I kept thinking. It could have been worse. She could have been diagnosed with a full-blown case of life-altering CFS, which could have affected her for the rest of her life. That would have been a fate worse than death for our high-energy, adventuresome, life-loving, and hard-working daughter. I mention the above because CFS is considered a “lesser” illness than breast cancer. Breast cancer certainly can kill you and CFS does not normally lead to death. But based on my experience with the two illnesses, I would choose for my daughter to take her chances with breast cancer rather than have to endure CFS.”
Anonymous presentation to the CFSAC
Quotes I Found
From Jen’s Ted Talk:
“The key symptom we all share is that whenever we exert ourselves -- physically, mentally -- we pay and we pay hard. If my husband goes for a run, he might be sore for a couple of days. If I try to walk half a block, I might be bedridden for a week. It is a perfect custom prison. I know ballet dancers who can't dance,accountants who can't add, medical students who never became doctors. It doesn't matter what you once were; you can't do it anymore. It's been four years, and I've still never been as well as I was the minute before I walked home from my neurologist's office.”
“It's estimated that about 15 to 30 million people around the world have this disease. In the US, where I'm from, it's about one million people. That makes it roughly twice as common as multiple sclerosis. Patients can live for decades with the physical function of someone with congestive heart failure.Twenty-five percent of us are homebound or bedridden, and 75 to 85 percent of us can't even work part-time. Yet doctors do not treat us and science does not study us. How could a disease this common and this devastating have been forgotten by medicine?”
“In the 1950s, a psychiatrist named Eliot Slater studied a cohort of 85 patients who had been diagnosed with hysteria. Nine years later, 12 of them were dead and 30 had become disabled. Many had undiagnosed conditions like multiple sclerosis, epilepsy, brain tumors. In 1980, hysteria was officially renamed "conversion disorder."When my neurologist gave me that diagnosis in 2012, he was echoing Freud's words verbatim, and even today, women are 2 to 10 times more likely to receive that diagnosis.”
“and in the case of ME, psychological explanations have held back biological research. All around the world, ME is one of the least funded diseases. In the US, we spend each year roughly 2,500 dollars per AIDS patient, 250 dollars per MS patient and just 5 dollars per year per ME patient. This was not just lightning. I was not just unlucky. The ignorance surrounding my disease has been a choice, a choice made by the institutions that were supposed to protect us.”
“Here's the good part: despite everything, I still have hope. So many diseases were once thought of as psychological until science uncovered their biological mechanisms. Patients with epilepsy could be forcibly institutionalized until the EEG was able to measure abnormal electrical activity in the brain.Multiple sclerosis could be misdiagnosed as hysterical paralysisuntil the CAT scan and the MRI discovered brain lesions. And recently, we used to think that stomach ulcers were just caused by stress, until we discovered that H. pylori was the culprit. ME has never benefited from the kind of science that other diseases have had, but that's starting to change.”
“How many lives could we have saved, decades ago, if we had asked the right questions? How many lives could we save today if we decide to make a real start?”
“We need to listen to patients' stories, and we need to be willing to say, "I don't know." "I don't know" is a beautiful thing. "I don't know" is where discovery starts. And if we can do that, if we can approach the great vastness of all that we do not know, and then, rather than fear uncertainty, maybe we can greet it with a sense of wonder.”
From other Jen Articles:
Jamison Quotes:
Quotes from articles:
oming out of the closet ME action
The reference to “chronic fatigue” makes the illness sound like people are tired. Let’s face it, everyone in America is tired. Tired is nothing. We have all been tired. Tired is something you push through. You have a cup of coffee, you shake yourself out of it, you soldier on. Tired is not Chronic Fatigue Syndrome. Profound debilitating weakness—now that is ME/CFS
I had a lot of time to think. I thought about how nobody, except those who are stricken or their close family members who live with them on a daily basis, really understands this illness. I thought about how I hide it most of the time. And, as I lay there, feeling like I was dying, I decided that perhaps it was time to come out of the closet.
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Obviously, I still have not integrated the sick person I am with my self-concept. In my heart, I aspire to be an adventurer. In my brain, I am a popcorn popper of plans and temptations. In reality, I can do one activity and, on a good day, maybe two, but not day-after-day in a row. On a bad day I have to be still. I have to wait for the temporary reprieve that recovery mode will eventually bring. Have I ever been well for a whole week in the last four decades? I would have to say no. How about a few days in a row? You mean, the whole day, all of those few days? No. One whole day? In the first thirty years, never. Now, once in a great while, it happens. This is an illness that never leaves you. It inhabits you, it stands ready to consume you, it shadows you in the rare moments you appear to live normal.
Do I describe this to you now because I seek pity or sympathy–unequivocally, no. I describe it only so you have a chance of understanding how I live, that I inhabit a completely different world, that I function in a very unstable universe of illness, where things change every few hours and, therefore, for which I must make constant accommodations.
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"We should all do well to remember just how ill CFS patients are. As Dr Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami, said: ‘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.
But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.' - Sarah Myhill book, 2nd edition
From Twitter:
“After 23 years’ illness for me, I realized I will not likely see another day of feeling well in my lifetime.”
https://www.healthrising.org/blog/2017/09/30/three-nih-funded-mecfs-research-centers-controversy/
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https://twitter.com/squashedhedgi/status/915604121113305088
“The idea, and NHS policy was based on this, was that people with ME/CFS could all return to health and functioning by their own self-management.
Why was psychological explanation lapped up as truth with no evidence, and poor outcomes for years?
A key question for UK medical professionals is why, in 30 year, has lilttle biomedical research been done when the suffering is so high? I’m tube fed, no treatment”
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“ME is a devastating illness, trivialized by overemphasis on fatigue. My crashes feel like temporary brain damage & paralysis. Can’t speak, think or move. Calling that 'fatigue' is offensive.”
https://twitter.com/clrblwrs/status/914355692324212739
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Yes, parsing "people who deal with fatigue issues" from "people who have ME/CFS" is a tough problem, but I'm connected with patient groups.
https://twitter.com/mbvanelzakker/status/915610465836916737
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When the body permanently fails to produce adequate energy, very small physical tasks become exercises. And it just makes you worse.
https://twitter.com/erdemergaz/status/915356317287636997
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“We need to replace dismissiveness with intellectual curiosity within physician culture.”
https://twitter.com/ginamcgalliard/status/915801581068599296
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It’s annoying when people comment on what/amount of food I eat. If food treated your GI tract like it has mine you’d not eat either. #IBD
https://twitter.com/aaronblockeribd/status/915982642067144705
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Those with #MEcfs can be high-functioning and still suffer from a debilitating illness. No-one sees your bad days, only the good
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If @OpenMedF is to be effective, focus must be on bodies and what goes into them including mold and drugs, etc. Not focus on "drug cure".
https://twitter.com/tennismom10/status/915301680857612288
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https://twitter.com/danieltobin17/status/916657486626770945
“It hurts when on top of feeling awful most of the time I'm constantly put in the position of having to convince people how awful I feel”
Milli Lagerweij @milli_lagerweij
“ME knocks me down, but not enough to destroy me. I am alive, but unable to live. The art is to let go and hold on!” via tweet