Quotes

  • “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 1995:1:3-4:123-125)
  • “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)

  • “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 (comment made at the Invest in ME conference in May 2010)
  • “Don’t tell me, “You don’t look sick!” You don’t look that insensitive either!”—Anonymous
  • 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)
  • “… a psychiatrist without compassion is a terrifying thing indeed.”—Dr. Deckoff-Jones in her July 31, 2011 blog post “Consensus” (directed at Prof. Wessely)
  • 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)
  • “They [ME/CFS patients] experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy…” – Dr. Nancy Klimas, CFS researcher and clinician, University of Miami (2006 Press Conference)
  • “… I’m not a chronic fatigue doctor, but I have learned a lot about chronic fatigue in the last six months and have spoken to a lot of patients. I’m absolutely convinced that when you define this disease by proper criteria, this is a very serious and significant medical disease, and not a psychological disease. It has the characteristics of a viral disease. It usually starts with a viral-like illness. If XMRV is not the causative agent — and it may well not be — there is still need by other groups to look for the next agent which may be the case.” – Dr. Harvey Alter, NIH Investigator (FDA Blood Products Advisory Committee meeting, 2010)
  • “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).
  • “[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)
  • “[ME/CFS patients] are more sick and have greater disability than patients with chronic obstructive lung or cardiac disease, and … psychological factors played no role.”—Dr. William Reeves, Chief of the ME/CFS research programme at the US Centres for Disease Control (CDC) (Press Release AACFS, October 7th, 2004).
  • “…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 that may be caused by an infectious agent, or some other source that is, so far, poorly understood. 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, CFS clinician and researcher (Faces of CFS, ebook).
  • Nearly every patient with CFS thinks of suicide at one time or another, but rarely can the impulse be blamed exclusively on mere physical pain and disability. I have discovered that most people learn to tolerate those things, particularly the tough breed of people who live out in the country. Instead, 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.” It’s an unfortunate fact that our culture has yet to accept the harsh reality of chronic disease; often, its ravages are invisible to the naked eye. But CFS carries a terrible stigma, the burden of which weighs more heavily on them even than the burdens borne by most victims of chronic disease. The world seems to believe that people with CFS – a population the medical profession has yet to stamp with its imprimatur of “bona fide” – could “snap out of it” if they really wanted to. This utterly false perception of the disease is so widespread that, eventually, most patients with CFS, especially those who become increasingly isolated, have periods when they begin to suspect: ‘maybe I am just crazy.'”—Dr. David Bell, CFS clinician and researcher (Faces of CFS, ebook).
  • 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)
  • CFS is controversial because the case definitions (that is, how the illness being studied is defined) of CFS consist exclusively of symptoms —and obviously anyone can say they have the constellation of symptoms that meets the case definition. Sceptics rightly ask whether there is evidence of objective biological abnormalities underlying CFS. In my judgment, the literature demonstrates many such abnormalities, both when patients with CFS are compared to healthy controls and when they are compared to patients with other fatiguing illnesses, such as multiple sclerosis or major depression. 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)
  • “The irony to me about that situation that we all chronically live in is the harder you try to protect the people around you from being uncomfortable with the fact that you are sick, the more invisible it becomes. “—Amberlin Wu, patient advocate (You Tube interview 2008)
  • “Why, if I woke up, didn’t I wake up?”–John Herd, July 24, 2013

29 Responses to Quotes

  1. Kathy D. says:

    This is brilliant! If my printer was working, I’d print all of these out and give them to friends and relatives.

    • Gina Bettor says:

      This should be required reading for anyone entering the medical field! Better yet, have the CDC remove their toolkit and post these quotes instead! If only added to a continuing medical education course, knowledge would be helpful. Amazing job compiling this list. Thank you from a 20 year patient. Sick since 6/16/93

      • Albert Chang says:

        Indeed. The entire collection of these quotes profoundly expresses the true gravity of the condition many of us have. Saying that you get “headaches, sore throat, brain fog, etc.” doesn’t really do shit.

      • Allison Haynes May says:

        Agreed ! This would be a great addition to the proper Med School education we are all hoping will become the norm. Thank-you, Jeannette !

  2. These are amazing, thank you so much for gathering them all up and sharing. 🙂

  3. I have just come across this resource. It is excellent , so helpful. Thank you for taking the time to compile it- it is stunning,

  4. Jeanette, I found this post while I was researching for a blog post of my own. You did a great job compiling these quotes! I think as many people should see this as possible, so I linked it in my blog. Hope ya don’t mind.

    Take care,

    Patrick

  5. Ash says:

    These are wonderful! I feel like making a poster out of them & handing them out to some doctors & others in my life who just don’t get it!
    So glad Patrick shared your list on his blog, which is how I found it. I’m subbed to your blog in my google reader, but so many ME/CFS blogs, so little brain-function, so many migraines…
    Thank you!

    Ash

    • hey ash!

      thank you 🙂

      Yes, we should print them and a carry a laminated version with us at all times.

      I subscribed to your blog as well. I guess we are an incestuous bunch, huh. i just haven’t been online very much recently. my life’s been too crazy. it may calm down a bit soon. and yes, too many blogs to to keep track of it all, although i do have my favorites.

      I enjoy your pictures on FB! maybe i should pick your brain on how you deal with living out in the country. i am having a hard time with it.

      hugs,
      jeannette

  6. Mamie Holst says:

    Do you have a Facebook page for this? Thanks.

  7. Gloria Jacobs says:

    I love this!! I write poems. My daughter say’s that they are depressing. I told her it’s no picnic lying in bed for 18 years.

  8. Izola says:

    Reading all your entries has been nice. oOPS. nice is not a nice word. GOOD is better.Iz

  9. Ess says:

    Thank you so very much for this, Jeannette–these powerful quotes from experts in ME/CFS. I’ve just come across these now and they are so resoundingly right on the button AND so validating–so much appreciate your compilation of these validating quotes and sharing with us all. I am going to share this with some of my peeps and also going to print out and give a copy to a coupla my good docs–family doc and Internist doc whom I see for ME/CFS.

  10. Gabby says:

    I just found this gem! Thank you for compiling these. I am sure I will refer back here many times again.

  11. John Gabor says:

    Great list of quotes Jeannette. Some I have read before and others not. I really like this one…
    “Don’t tell me, “You don’t look sick!” You don’t look that insensitive either!”—Anonymous
    Usually people use “stupid”. But, it really is a question of insensitivity.

  12. kathryn glen says:

    I would love to show all these to several people I know plus my gp!!! The doctor I have at moment thinks pacing is the way but she admits she doesnt know alot about M.E.Shame they dont have time to research into it a little!!! X

  13. Allison Haynes May says:

    Dear Jeannette : Thank-you SO much for spending your precious time and energy on compiling these quotes. It is fantastic to find them all in one place. I have printed them out & sent them to my Dad, who is finally starting to “get it”, after disbelieving me for over 25 years & thinking I needed to just “pull up my socks” & try harder (or try yet another Doctor)… He & my Mom & sister all felt that way, so I basically gave up on trying to convince them. I just didn’t have the energy for that; I needed my energy for my own survival. Unfortunately my Mom died never understanding M.E. but I understand where she was coming from, with problems of her own, so I hold no anger towards her. My sister & I are basically estranged… she hasn’t changed her opinion on this, and is a nurse, so I have nothing more to say to her. However, it’s really nice that my Dad & I have sorted this out, & can now communicate in a more genuine way. It started when I sent him the research study showing the physical differences in our brains, (Suddenly he believed it was real ! *sigh*), and thanks to you, it continues with articles like yours, showing how real M.E. is, how much suffering we go through, and how our daily lives are NOT normal. Merci, Bitte, Gracias, etc. So much respect & appreciation for you. Take care of yourself.

  14. Rosemary Lee says:

    I love these quotes! I got M.E. in 1988. Fortunately, it wasn’t severe. I only spent 2 years in bed and eventually went into remission. The unfortunate? It morphed into Fibromyalgia after a car accident. I thank you for all your research and case work that you’ve done.

  15. dying4help says:

    The link to David S. Bell MD’s “Faces of CFS” is 404. You can still see it on the wayback machine:
    https://web.archive.org/web/20120417040146/http://www.davidsbell.com/Faces_of_CFS.pdf

  16. Pingback: Explaining CFS to the Ignorant – Shaking Off the Chains

  17. jjm says:

    I cannot thank you enough for this page that you put together. Thank you for your hard work. I have been dealing with this insidious disease going on 5 years now. I am grateful that I have a PCP that is understanding and supportive. That truly believes that ME/CFS is real. That is where my gratitude ends, though. I have been to multiple neurologists who disregard me and can’t seem to push me out the door fast enough. I have been told that it’s in my head. I have been told that the issue is my lack of exercise, and one neurologist even forced me to do squats in her office while in severe pain. Several neurologists have said outright they will not deal with ME/CFS patients. I have been shamed to the point where I have not even told family or friends that I suffer from ME/CFS. It is the most isolating disease imaginable. I keep going when I can, and as only ME/CFS patients would understand, there is a price to pay. I recently painted a small room and ended up in bed for 5 days in severe pain with fatigue so severe that walking was a struggle.The pain and fatigue is not even the hardest part; it’s the dismissal of ME/CFS by the general medical community for the most part. I would not wish this disease on anyone, but I think if just one of the neurologists that I have been shamed by could live just one week in the body of a ME/CFS patient they would actually develop understanding and compassion. It’s truly lonely out here for ME/CFS patients. When I am losing it I come to this page and reread; it’s the only way I can feel sane with an insane disease. Thank You…

  18. Pingback: Är ME/CFS en riktig sjukdom? – ME-patienten

  19. Pingback: Är ME/CFS en riktig sjukdom? – ME-patienten

  20. Anonymous says:

    Thank you so much Jeannette. for all the Fantastic work you have done for ME people. I have just come across this brilliant post. Take great care of yourself. Love & kind regards to you and your family. 💛

  21. Pingback: Post Nine. Why I write this blog. – puffins&penguins&me

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