Thoughts about ME - quotes

[Who Me?]

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)

• “Fatigue is what we experience, but it is what a match is to an atomic bomb.”—Laura Hillenbrand, author of Seabiscuit and Unbroken (NYT, “An Author Escapes From Chronic Fatigue Syndrome”, February 4, 2011)

• “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)

• “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)

• “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

.

https://thoughtsaboutme.com/quotes/