Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME. Dr. Dafoe’s son and Ashley’s brother, Whitney Dafoe, has severe ME, and is the impetus behind their efforts to raise funding, raise awareness, and raise hell.
These statements were read at the Sacramento California rally on June 2, 2017.
Ashley’s statement:
“If there is one thing you should take away from the disease, Chronic Fatigue Syndrome, it is fear. You should be deeply afraid that it will come for you, or someone you love. It can strike anyone at any time with no rhyme or reason. It is spreading around the country like wild fire with denial from the political world. Imagine a disease like Ebola or the end stages of AIDS spreading across the world with no one of power willing to acknowledge it exists. Imagine your mom, your sister, or your son, gets sick and nobody will believe that it is real. But this disease doesn’t end your suffering with death or a treatment like Ebola or AIDS. This disease leaves you just moments before death for years. You are holding on to life by a thread, fighting with every fiber of your being while the disease laughs at you, because it’s not going to kill you, it will leave you in the moment just before death for years, the rest of your life. Imagine that is your family, your loved one, your best friend. Imagine the government and every person around you telling you that there is nothing wrong with them, it isn’t real, their disease doesn’t really exist. While they are unable to move, bedridden, on feeding tubes in a dark room with no noise or sound. Just imagine that horror and be afraid. Be afraid that it just might choose you, and remember that fear the next time you tell me that my brother’s disease isn’t real. ”
Janet’s statement:
“I send my greetings to everyone!
“I wish I could be there with you. My husband, Ron Davis, and daughter, Ashley Haugen, are in London at the Invest in ME International Research Conference, so I must stay home with our son, who is severely ill and bedridden with CFS and can’t speak, talk, move, or eat. We can’t ever all go anywhere together. This highlights that this horrid disease affects much more than just the patient! Caregivers, family members, friends, everyone who knows and loves the patient is very significantly affected. Sad, desperate, despondent. And this has been going on for over 40 years for millions of Americans and people all over the world! It’s so unbelievable that such ill people could be ignored, not believed, and left alone with few resources and no help from medicine or our government! I often feel like I’m in some kind of surreal horror movie. I look at my beautiful, gentle, creative, amazing son, who could be contributing so much to the world, and who desperately wants to, and then I think of my brilliant scientist husband who has the ability to figure out this disease, and then I realize that neither our government, nor many other sources of funds have stepped up to make sure that this disease is figured out and dealt with, just like other diseases that affect our citizens. It’s astounding, it’s unbelievable, and it’s absolutely not okay. I know NIH has increased commitment to help. However, I strongly believe that it is NOT ENOUGH. We have the ability to figure this out and ease the suffering of all these people and we could do it in a few years WITH ENOUGH RESOURCES! Ron always tells me, he and his team need $5 million dollars for 5 years to find the answers. I believe him! I have watched this amazing man do collaborative interdisciplinary science solving “unsolvable” problems for over 40 years. He can to it, with the team of fabulous scientists that he is able to gather. Why is this not happening as fast as it can? If people could personally connect with the suffering, I believe it could happen faster. We must all do all we can to show the government and the world the extent of the suffering! Send photos, Don’t be shy! Bring photos and recent science papers everywhere you go! We can speed this up together! I look forward to working with you till we get answers and my baby can come back to me!”
#MEAction Scotland volunteers in Scottish Parliament
December 6, 2024
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Volunteers from #MEAction Scotland and Long Covid Scotland talked to over 60 MSPs (Members of the Scottish Parliament) at an Information Stall in the Scottish Parliament from 5th-7th November. Ben Macpherson MSP for Edinburgh Northern and Leith sponsored the stall on behalf of #MEAction Scotland as we aimed to make MSPs aware of the desperate
6 thoughts on “Voices from Sacramento: Janet Dafoe and Ashley Haugen”
Hello Janet and Ashley,
Having now had ME for 32 years, I understand how this disease can shatter all you hold dear. I share your frustration about the indifference medical and research funding institutions have towards this disease. I strongly agree that more information needs to get out there. This can be a frustrating endeavour in itself. Medical professionals may not want to read information, even the IOM Report Brief! But we keep trying.
The list of credible institutions acknowledging ME is growing. I have found that by listing these in an email, (the NIH Director’s Blog, the IOM report, Dr. Howard Zuckerman’s recent letter to New York State physicians), I may get a positive response. One to add to the list for those in the USA, is the Canadian Institutes of Health Research, a Canadian federal government department, which validated the biological underpinnings of ME in December 2016; paragraph 5: http://cihr-irsc.gc.ca/e/50100.html
If you, or anyone else has any novel ways of getting info out, please post them. Jen Brea’s movie, “Unrest”, will be out in DVD later this year. I hope people can donate copies to their local libraries, show it to their doctors, send a copy to their government health authorities etc.
I look forward to a day free from the harmful stigma of this disease, and free from this terrible illness itself.
Thank you to you both, and Dr. Davis, for all your hard work to bring focus, research, treatment and a cure for the millions with this monstrous disease!
https://youtu.be/NKpi2rul4A4
A brief video (2.5 mins)
Well said by both of you. Thank you. It’s indeed a surreal horror movie….but we didn’t audition for the part….
Dear Janet and Ashley,
I have been ill with Myalgic Encephalomyelitis since 1979, for almost 40 years, and, 100% bedbound and confined to one room, since 1993. My experience has been not understood, misunderstood and denied. I have edited this passage from Friedrich Engels, written in 1845 :
“When one individual inflicts bodily injury upon another such that death results, we call the deed manslaughter; when the assailant knew in advance that the injury would be fatal, we call his deed murder. But when the medical profession/psychiatrists place hundreds of patients in such a position that they inevitably meet a too early and an unnatural death, one which is quite as much a death by violence as that by the sword or bullet; when it deprives thousands of the necessaries of life, places them under conditions in which they cannot live – forces them, through the strong arm of the law, to remain in such conditions until that death ensues which is the inevitable consequence – knows that these thousands of victims must perish, and yet permits these conditions to remain, its deed is murder just as surely as the deed of the single individual; disguised, malicious murder, murder against which none can defend himself, which does not seem what it is, because no man sees the murderer, because the death of the victim seems a natural one, since the offence is more one of omission than of commission. But murder it remains. I have now to prove that the medical profession/psychiatry in England daily and hourly commits what the working-men’s organs, with perfect correctness, characterise as social murder, that it has placed the patients under conditions in which they can neither retain health nor live long; that it undermines the vital force of these patients gradually, little by little, and so hurries them to the grave before their time. I have further to prove that the medical and psychiatric profession knows how injurious such conditions are to the health and the life of the patients, and yet does nothing to improve these conditions. That it knows the consequences of its deeds; that its act is, therefore, not mere manslaughter, but murder, I shall have proved, when I cite official documents, reports of Parliament and of the Government, in substantiation of my charge. . .
. . . So far has it gone in England; and the general public reads these things every day in the newspapers and takes no further trouble in the matter. But it cannot complain if, after the official and non-official testimony here cited which must be known to it, I broadly accuse it of social murder. Let the medical & psychiatric profession see to it that these frightful conditions are ameliorated, or let it surrender the administration of the common interests to expert-patient groups. To the latter course it is by no means inclined; for the former task, so long as it remains the “caring professions” crippled by caring-professional prejudice, it has not the needed power. For if, at last, after hundreds of thousands of victims have perished, it manifests some little anxiety for the future, passing a “Myalgic Encephalomyelitis Strategy”, under which the most unscrupulous lack of research, treatment and management is to be, at least in some slight degree, funded; if it points with pride to measures which, far from attacking the root of the evil, do not by any means meet the demands of the commonest standard of medical care, it cannot thus vindicate itself from the accusation. The English medical and psychiatric profession has but one choice, either to continue its rule under the unanswerable charge of murder and in spite of this charge, or to abdicate in favour of equity of medical care for people living with Myalgic Encephalomyelitis. Hitherto it has chosen the former course.”
Adapted from ‘Condition of the Working Class in England’,
F. Engels (1845)
Thanks for voicing out your statements on this matter.
Great to see advocates speaking up for people with Chronic Fatigue Syndrome
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