About a week ago, my obituary arrived by email. But something related, which you might think is weirder, happened Tuesday afternoon, and all of it involves chronic fatigue syndrome (CFS), and Hemispherx Biopharma Inc.’s drug candidate for it, Ampligen.
More specifically, it involves Bob Miller, 54, who is on a hunger strike. Miller stopped eating about the same time my obituary showed up, in protest of the FDA’s refusal to approve Ampligen (rintatolimod), the Toll like receptor 3 modulator for CFS that was given an unfavorable review by the FDA’s advisory panel in December, which I covered.
I talked with Miller by phone Tuesday. He lives in Reno, Nevada, because that’s the headquarters of the Ampligen trials. Miller sounded weak but determined. He choked a few times, when the subjects of his wife and twin sons, age 12, came up.
An Email Doppelganger
OK, let me get the obituary thing out of the way. Like most people with a handful of things going on at once – and like a lot of people who are simply self-absorbed – I’ve put my name in a Google alert, because I want to know if somebody online mentions me or one of my projects.
You’ve probably guessed the next part.
Delivered via Google alert, the obituary had everything spelled right (no “U” in my last name, like a lot of people tend to add. Not related to that guy!), but it got the age wrong (58, nope. One more year to go, why rush things?).
Of course, I’ve gotten Google-alert obituaries of “myself” before. I always read them, if only to find out what this other guy with my name was like, and at what age he died. Sometimes, I try to imagine myself into deceased person’s life. This latest one had been a coal miner in Kentucky for 15 years.
By Another Name, the ‘Gom-Boo’
Nobody knows what causes CFS, so I asked Miller, who’s been sick for 30 years, how his disease first manifested. He said he developed flu-like systems that would not go away. His co-workers passed it off as what they called the “gom-boo,” the name for any of a number of infections they picked up in the moist, black-dusty, oxygen-deprived environment where they worked.
Miller was a coal miner in those days, he said.
I registered the coincidence mentally, and went on with the interview. Heard how Miller, after the coal-mine job ended because of his absenteeism, could not hold down employment. How he became bedridden. How 17 years passed before he saw a doctor who diagnosed his CFS.
‘The FDA Has the Power’
Gone are the days when CFS was considered a “fake” disease, masking laziness or a person’s failure to take vitamins. I knew the horrid roster of CFS symptoms. Here’s how they are expressed by Wikipedia and others: post-exertional malaise; unrefreshing sleep; widespread muscle and joint pain; sore throat; headaches of a type not previously experienced; cognitive difficulties; chronic, often severe, mental and physical exhaustion; muscle weakness; increased sensitivity to light, sounds and smells; orthostatic intolerance; digestive disturbances; depression; and cardiac and respiratory problems.
At the FDA advisory panel meeting, a parade of people testified about CFS, and the dire need for a drug like Ampligen that seems to work. Except that there aren’t any drugs like Ampligen.
“The FDA has the power to be able to do this,” Miller said. “The company is willing to sit down with the FDA, sit down with anybody, and trying to figure out how to move this forward, without the drug company going away,” since it lacks the money for much more clinical work, which the agency wants.
Against the Odds
As the interview came to close, after I thanked Miller for talking, he asked, “What was your name, again?”
I told him. There was a two-second pause. Quietly, Miller said, “I knew a Randy Osborne when I worked in the coal mine.”
The same one, it turned out. Miller had not seen him in years.
And so I ended up breaking the news of my namesake’s death to his previous co-worker and, likely, friend. (It’s not easy to work in a coal mine, I would imagine, without becoming friends.) I broke the news to a man who may die himself, as a result of his hunger strike. He’s already been given saline for kidney problems caused by the fast, but has vowed not to take food until Ampligen moves forward, for the sake of himself and as many as a million other patients in the U.S.
I told my girlfriend about the interview, and the identical names, and the coal-mine connection. “What are the odds?” she asked. Over the past few days, I’ve been thinking about other odds. Of Ampligen finding its way to patients, somehow. Of Miller making his point, before time runs out.
22 Comments
THank you so very much. It is so amazing to me the circumstances in life that are miracles.
Thanks again, Randy. Both Randys. I hope both your and Bob’s real obituaries are a long time from now…
Beautifully written piece on a tragic situation and bizar co-incidences. Let’s hope the unlikely odds in the case of Ampligen will co-incedently or otherwise finally fall in our favor – and that of Bob, such a brave and inspiring man.. Thank you for (again) writing about this subject that is so often neglected or even dismissed because of a trivial name and painful misconceptions for a very serious and potentially fatal illness that ruins millions of lives worldwide.
Thank you, Randy. Great article.
Thank you so much for writing this up! It IS a matter of life and death for many patients. You see, just like HIV/AIDS patients, this kills patients long before their time…in fact, it is and has been called the NON-HIV AIDS…an Acquired Immune Dysfunction Syndrome, by many researchers. Dr. Leonard Jason’s studies have proven we die on average 20 years earlier than others.
Again, thank you.
First of all, this is just a great post — thank you. It made me cry because — after years of people bantering around “canary in coal mine” analogies about my ME/CFS — you seem willing to see that we are not talking about just a metaphor or analogy, but about literal broken lives that might only be restored with this drug. I’m not a big fan of “everything happens for a reason” (see above about metaphors foisted on the ill) but I had a gut reaction to the strange odds around you receiving that obituary for Bob’s friend, in part because the FDA called this illness “serious and life-threatening” and that term is real to many of us who wake up wondering how it’s possible to be this sick and not be dead yet. I’m very grateful you’re willing to give voice to this issue.
THANK YOU for posting this and helping to bring awareness to our illness. I have never been able to receive Ampligen because I was unable to locate to where it was being given. I was told I would be a good candidate. To see people thriving on it and know I could be too if I were fortunate enough to move and have the financial means to pay for it is hard to watch. I have been home bound and bed bound for 9 years. It started with a flu that never went away. We are desperate for solutions. Plase keep it up!!
Thank you on behalf of a million ill people. We just want a chance to get well. We want to be productive in society and able to help our own families.
Very moving piece. Thanks for covering this important issue.
That is a great article Randy, thank you for following up. I too find irony with my name. It’s an unusual one and the only other person on social media with it sells scented products for a living! Cracks me up as I’m unable to tolerate any kind of artificial fragrance. I find it to be an odd social situation to say the least. Not that I’m really able to get out much or have any sort of social life. Even going to my daughter’s few activities I’m able, I often have to leave or move a bunch of times to avoid the smells. Can even trigger seizures. Just one of the many symptoms a lot of us deal with. Thanks for getting that list correct! Best to you and Robert.
i’m so grateful that you are covering this important topic. i’ve been very sick for 23 years and without help from the media to get this illness some attention, many many more will spend their lives as i have — stuck in or near my bed. we can’t let that happen. so far, 1 million americans have this illness. 17 million world-wide.
From The Couch: thanks for covering this in a compassionate manner. We the people on couches all over the world need your voice .
Thank you for writing this piece. When I got sick in 1980, I continued to work until I could not move up the stairs into my classroom. Little did I know how horrid it would get when my son became ill, too, when he was about 9. He died at the age of 23 of viral myocarditis with fibrosis or scar tissue indicating past infections. I cannot prove anything about how Casey’s heart and his CFS are related. Lack of research…lack of funds. Too bad, so sad. Fatigue? Can’t hack it? This disease has nothing to do with being tired. People are dying. Myalgic Encephalomyelitis (ME), a better name, is a disease you would not wish on your worst enemy. I know Bob. I cannot watch the videos anymore. It brings back the deaths of many people not just the vivid images I have of seeing our son silent on the couch 7am, July 4, 2005. DO NOT feel bad for this mom. It is over. There is nothing to be done. BUT, Bob Miller and the thousands of advocates who are raising a hand, a hand that represents thousands more who are unable, need help. THANK YOU AGAIN.
Thank you for posting this. This is a life and death situation and NOT only for one. Many patients are loosing hope and ampligen has been shown to help some. Patients should have the right to choose ampligen and to maybe have a chance to feel better. Loose hope and you loose life. Government has no right to decide this
Mr. Osborne,
Thank you so much for this & the other article you’ve written on M.E. They mean so much to all of us who have M.E. For people who don’t believe in coincidences, I wonder what would they call what happened, so beautifully narrated by your good self? Divine intervention?
We need to get the odds stacked in our favour, for once. Robert is doing a very heroic act but we are all very fearful for him and his family. None of us wants Robert’s health to go to a point of no return.
After 26 years of living with Myalgic Encephalomyelitis, I’m appalled that, still, there is so little done. We hope all of this will make a huge difference.
Thank you again.
Noreen Murphy,
Republic of Ireland.
Thank you Randy for sharing this story and bringing awareness to the plight of so many suffering from this mostly misunderstood and understated illness. Most of us are desperate to have our normal lives back. We yearn to return to our previous functional healthy state. Bob and many others are proof that Ampligen can do this for them. That is why this is such an important fight.
Well written – thank you
I was happy, active and an enthusiastic member of the workforce when this thing hit. It hit suddenly: I got mono and didn’t get better.
I want my life back. I want to be able to work again. I want to be able to do normal things with my friends. I want to be able to play sport… I don’t want to wake up feeling sick every day.
It’s time for the FDA to act.
Dear Mr. Osbourne,
I sincerely appreciate your writing this article. I have been suffering from M.E.(CFS in the U.S.)for seven years.I was a 30 year old woman in peak physical condition.I was very optimistic about my future! I loved life!After what I thought was the flu, I became permanently ill.I had absolutely no reason to just “drop out of life.” My whole world was turned upside down within a brief period. I never could have imagined what was going to be my fate. Constant pain, viral and bacterial infections, cognitive dysfunction to the point of absolute embarrassment, gastrointestinal problems, infertility and the list goes on and on… We are not tired. We are sick. EXTREMELY sick! We are begging the world to please help us.
Very Sincerely,
Jacqueline Robinson
Waynesburg, Pennsylvania
Thanks so much Randy for telling our story and taking an interest. The CDC estimates one million people in the US alone have this illness and 25% of those are disabled. The government has not done much of anything to reach out and help. I have never imagined in the US, that patients could be treated so badly.
Millions of people Worldwide are impacted by ME/CFS, some are bed bound or house bound some living a half life. They are denied appropriate treatment, respect or care. Robert’s Hunger Strike is a desperate course of action directed at the inhumane withdrawing of Ampligen the drug which will give him and others their life back He has the support of the ME Community who are praying for a speedy and positive outcome. Thank you for creating awareness.
Thank you, Randy Osborne. This disease has taken way so much from me and my family. The FDA’s decision not to approve Ampligen was like extinguishing my light of hope. So, at 43, with a husband and 4 year old son, I remain housebound. I have said goodbye to my career: a lawyer who, ironically, specialized in Social Security Disability, now waiting to see if my application will be approved.
Thank you Randy but Kathryn?Can someone please tell me where the hell does it say we die 20 years before anyone else without M.E.?Please do not bandy quotes around like that without thinking of the affect it will have on people.I am 54 how do you think that makes me feel?I am utterly down and out right now and saying something like that makes me feel like giving up.
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[...] In the weeks following the decision, patients rallied for approval by collecting electronic signatures on a petition that was delivered by advocate Robert Miller to officials at FDA, the Department of Health and Human Services and Congress. He began a hunger strike on Jan. 29, 2013, as reported by KRNV-4 in Reno. Over the weekend, he appealed to President Obama and Secretary of Health Kathleen Sebelius to request that the National Institutes of Health (NIH) conduct a confirmatory study of Ampligen as a CFS treatment. The Feb. 4, 2013 press release from Hemispherx states, “Hemispherx has asked any hunger strikes be discontinued and that patients join in a collaborative effort between the FDA, Hemispherx, CFS clinicians and patient advocates to find a solution to this significant unmet medical need.” Miller issued his own press release after learning of the decision and company officials also contacted him through Facebook to end the strike. He vows to continue until the federal agencies take “affirmative action.” BioWorld’s Randy Osborne reported on Robert’s strike and an unexpected personal coincidence. [...]
[...] bound, I am one of the very lucky ones, because I have managed a life with this set of diseases. My heart goes out to Bob Millar who is on hunger strike for Ampligen to be approved. I have to admit, I am not one who favours this sort of action (too many memories of the days of [...]