My 28 years with Myalgic Encephalomyelitis

I have had Myalgic Encephalomyelitis, or M.E, for 28 years.  The CDC does not recognize this.  They insist that I have a condition called "Chronic Fatigue Syndrome," or CFS.  I have M.E.

At the age of 44 I led a charmed life.  I had been married to the love of my life for 20 years, and we had two lovely children.  We were both college professors - a deliberate choice that allowed us to do what we enjoyed - researching and teaching subjects that deeply interested us - while having the income to live comfortably (because we both worked) and plenty of time to spend with the children (because of the nature of academic life).  We traveled all around the country going to each other's conferences, often taking one of the kids along.  We also went to four Olympics, two final fours (NCAA basketball championships) and countless playoff games, several World Series, and, eventually, twenty years of baseball AllStar games.  We skied in the winter and went to the beach in the summer.

On October 24, 1994, I went to my office to grade exams and suffered a blackout.  When I came to, I could not understand one word in the Bluebooks in my lap - they might as well have been written in Cyrillic alphabet.  It took time - and concentration - to be able to stand.  I had fallen down the rabbit hole; my life would never be the same.

Over the next four years I suffered from severe pain in the back of my neck and behind my eyes, 24/7.  My muscles ached, and I had migraine-level headaches.  I had ataxia, dyslexia, sensitivity to light and sound (to the point I had to wear sunglasses all the time), tinnitus, partial paralysis, memory loss, disorientation, expressive dysphasia, and massive confusion.  My family took care of me.  Obviously, I could not drive, and by 1996 I was using a wheelchair when I left the house (which someone else had to push).  My confusion was so bad I once poured a pot of coffee into a silverware drawer convinced it was a cup.  When my family took me somewhere, one of them would have to fasten my seatbelt because I couldn't remember what those two things were for.

Most of the time, however, my family went without me.  Increasingly I spent most of my time lying curled up in bed in the dark, listening to a favorite movie (because I could not bear to look at the screen).   I got around the house by balancing against furniture and my golden retriever, but increasingly I spent the entire day upstairs.  By the end of 1998, I couldn't even brush my own teeth.  All that time, just slipping by.

I was lucky to have a family to take care of me, because I could not take care of myself.  I also soon discovered an Internet discussion list of fellow sufferers, and was referred to a very good specialist in Washington, Marsha Wallace (who unfortunately hasn't practiced since 2000).  Dr. Wallace taught me to live within my energy envelope and helped with sleep disruption and NMH/POTS, but I continued to deteriorate.

In the fall of 1998, Dr. Wallace introduced me to Dharam Ablashi, a researcher who had just retired from the National Cancer Institute at NIH.  Dr. Ablashi had been the co-discoverer of HHV-6 and it's two variants, A and B, while working with AIDS.  I had the version the AIDS patients did - Variant A.  My viral load was over five times the amount used to diagnose an active infection.  Dr. Ablashi called my home and told my daughter, then in high school, to make sure I stayed in bed, because I was seriously ill.  I was in bed already because I had little choice, but we appreciated his thoughtfulness.

I would later positive for active EBV or mono (which I had more than once - most notably in 1990, four years before my collapse, during an outbreak on my college campus), CMV (cytomegalovirus), HHV-7, and three strains of Coxsackie B.

My immune system was severely compromised: My natural killer cell function was less than 3%, I had the defective 37kDa Rnase-L, and I had an abnormal cytokine pattern.  But no one knows how all this happened.  All we know is that this disease can occur in cluster outbreaks, and it can pop up in individuals.  No one in my family got it from me, but I believe the outbreak of EBV in 1990 marked the beginning of my illness - the beginning of the cycle of immune defect-virus-damage that characterizes this disease for many of us.  I had to continue to teach through my infection with EBV, including an hour's commute and back, and while I recovered from mono at the end of the fall semester, my health began to deteriorate in seemingly disparate ways, until the ultimate collapse in 1994.

Years later I would have a spinal tap that revealed both HHV-6 and Cytomegalovirus were active in my spinal fluid.  No wonder I had the symptoms of encephalitis, and with the stiff neck, meningitis.  Along with the muscle pain, that meant literally that I had Myalgic Encephalomyelitis, or M.E., a disease that had been diagnosed in the UK since the mid-1950s.  In the United States, however, all I was given was a diagnosis of "chronic fatigue syndrome," a name chosen by committee and adopted by CDC in 1988 to replace the name given a number of cluster outbreaks occurring in the USA at the time, Chronic EBV.  They did not mention M.E. - though there were specialists at the meeting who insisted that was the correct diagnosis for these outbreaks.  They did not ask anyone in the disease community what they thought of this name.  They simply adopted it, and having done so, consigned the disease to the backwaters of medicine where neither research nor treatment could be found.

There could not have been a worse choice of a name for this disease if CDC had hired a focus group,  Chronic (as in chronic whiner) Fatigue (as in "yeah, I've been feeling tired lately myself") Syndrome (as in syndrome of the month) - applied to upper middle class white women "trying to have it all" (as the late Bill Reeves of CDC once phrased it) - how inconsequential, silly even.

Thirty-four years later, 85% of patients - over one million Americans - have no idea what is wrong with them, because, according to both CDC and private demographic evidence, only 15% have a diagnosis.  34 years since CDC formally recognized this illness, only 15% have a diagnosis.  That is a mighty admission of failure.

And while the majority of diagnosed patients are white and relatively higher income, the disease is equal opportunity with regard to ethnicity and income.  It is more common in women than men, but the ratio is more 65:35 than the 95:5 that CDC and NIH used to claim.

Back in 1994, the infectious disease specialists in northern Delaware dismissed my illness as minor.  "You'll be back to normal in two years," they assured me. Oh good, I responded - I won't have to miss more than two seasons before I can go back to skiing.  "Oh no," was the response.  "You'll never ski again."  How was that "normal?" I asked.  They got angry at that.  That's when I was referred to Dr. Wallace.

Although the progressive version of M.E. that I suffered from was unusually severe, I turned out to be lucky.  Through Drs. Wallace and Ablashi, I was given the opportunity to go on the experimental Phase III immune drug Ampligen, in what is called a cost-recovery (I pay cash), compassionate care (I am allowed to do this because I get  so very sick), open label (I know I am on the drug so FDA ignores me) study.  I have to get Ampligen at the study site by IV infusion twice a week.  And FDA can take the drug away from me whenever they want.

I have been on Ampligen for 17 of the past 23 years.  Again, I am unusual in that my illness erupts again within a year of going off the drug (which I did once voluntarily, three times because FDA did take the drug away).  FDA has admitted, in writing, that the drug is not toxic.  But they are not "convinced" it is effective.  My experiences do not count because I was not in a placebo trial; I knew I was on the drug.  

There is no other drug in the FDA pipeline for either CFS or M.E. (Although there are immune boosters and antivirals available for patients).  This is the only one expressly targeted to M.E. or CFS.  Over one million Americans suffer from my disease.  FDA, CDC, NIH - none of them cares - though in fairness, it's getting better.  Dr. Collins at NIH has at least assigned us a specialty - neurology - and although the disease is grossly underfunded, we are starting to get projects going with major universities.  (I am currently in a study through Columbia University.)

I wrote this while on Ampligen.  On Ampligen, I can drive, take care of myself (mostly), walk, drive a car, read a book, work on my own writing, spend time with my children and grandchildren.  Off Ampligen I am an invalid in bed in severe pain, curled up in the dark because light is too painful, listening to a favorite movie over and over.  Again.

As the years passed, it became more and more difficult to get Ampligen, because FDA refused to approve it.  The last three years I spent in Delaware, I had to commute by train twice a week, 100 miles north, to Dr. Derek Enlander's office in New York City, the closest site where I could get Ampligen.  I usually got home around 7 pm.  It was grueling, but at least I was getting the drug that kept me from being a bedridden invalid.  To be honest, I enjoyed going back to the City after years of being away, even though I did little else besides get my infusion and go back home.  Dr. Enlander's office was on 5th Ave. and the bus ride from Penn Station brought back a lot of memories.

Then in July 2013, my husband of 38 years, my best friend, my soulmate, died of bladder cancer.  I just couldn't stay where we had lived for 35 of those years.   So I moved to Incline Village, NV, on Lake Tahoe, where one of the best clinician/researchers in the country practices, Dan Peterson.  (The most famous cluster outbreak of the disease in the US occurred here in 1984-85 - over 200 patients.)  My infusions were now just two miles away.  Dr. Lipkin at Columbia has called the version of ME/CFS that I have "the Peterson subset."  There are a lot of patients here who have the same biomarkers I do.

I was doing well at Tahoe, a good place for healing both body and soul ... and then we lost Ampligen again after January 2017.  Dr. Peterson has gotten it back for 12 of us in a study with biomarkers that will hopefully suggest why it works so well for those of us for whom it is successful.  It required coordination between a number of agencies, the company, and the site - lots of papers changed, signed, passed around, changed again.

Over the next 18 months, I deteriorated to the point that I could only drive in the Tahoe bowl where the speed limit is 25 mph.  I could not go over the mountain passes or drive 50 miles an hour.  When I traveled, I needed wheelchairs.  I have a very spiffy electric one that's taken me to more than one TCM classic film festival.  But I had gotten to the point where I could read no more than a paragraph or two without the page turning back to cyrillic alphabet.  Back to the 24/7 pain.  No longer allowed to cook on the stove because I would forget and leave things there.  For every minute of every day I felt as if I had the flu. The immune biomarkers were back; the viruses were back.  My CPET was down to 16; my natural killer cell function 3%.  Very frightening to stare down into the hole, knowing where I would end up - like Charley in Flowers for Algernon or Robert de Niro's role in Awakenings - this time, with no caregiver.

And then ... we got the call!  I restarted Ampligen August 6, 2018.  At first you feel worse because your immune system suddenly wakes up and wreaks havoc with symptoms, but then it's just improvement.  Takes about six months for me to start getting normal, but the best part is I know I am not in danger now of deteriorating more.

Myalgic Encephalomyelitis is a serious disease.

CDC betrayed us by giving it a silly-sounding name in 1988 - CFS.  NIH allocates less than $6 per patient per year to study this disease - a pathetic amount.  After a report they commissioned from the Institute of Medicine came, saying this was emphatically not a psychiatric disorder, and that NIH needed to spend much more money on it, we were promised more funding - but so far, haven't received anything above the usual $5-6 million.   See "Beyond Myalgic Encephalomyelitis".

We came back with private research initiatives, funded by cash-strapped patients and their families, and more good biomedical research is being published than ever before.  The whole concept of what "CFS" is, silly sounding name and all, is undergoing a transformation. And for the first time in my memory, clinicians and researchers have agreed on a definition - the Canadian Consensus Criteria, updated with current research.  There are excellent research studies going on at Stanford, Columbia, and Cornell right now - but they get little, if any, NIH funding.  Even Ron Davis, the Stanford scientist essential to the human genome project, can't get funding out of NIH for this disease.

We are getting new attention now because there is a subset of patients with long-haul COVID who have precisely the symptoms I get.  Even more, the very existence of long-haul COVID has created more research on post-infectious neurological illnesses - like M.E.

The main study behind the government's prescription of psychiatric counseling and graded exercise, the PACE trial, has been exposed as a giant boondoggle - but at the moment, the scientific journal that published it, The Lancet, the institutions behind it in the UK, and the UK government, are still pretending they don't know how deeply flawed it was.  See PACE: The research that sparked a patient rebellion and changed medicine.

Perhaps more important, why don't people outside our community - people in the media, in government, our doctors, our neighbors, our employers - why don't they know that there is a growing epidemic of a severe, life-altering and in some cases life-taking disease that CDC and NIH are keeping under wraps?  I have friends who were teenagers when they got sick, and are now in their 40s. They did not get to marry their soulmate like I did.  They did not go to college or have a career.  They did not have children or grandchildren (I have two grandchildren now).  I was lucky compared to them.

There are patients who are even worse than I was - completely bedridden, on feeding tubes.  See The 25% ME Group and the story of Whitney Dafoe in the Washington Post.

They can barely afford to live from day to day.  Few can afford the testing I have had - if they can afford it, they can't get anyplace that does it.  They go untreated, hidden, silenced.

I have lost too many friends to this disease; we have lost young people to this disease.  A close friend lost her 23-year-old son to a massive heart attack.  He had the disease, but no doctor would believe it.  The viruses seem to be mostly in my nervous system in my case, but they can get into your heart muscles; they can wreak havoc with your digestive system; they can get into your liver.  And then there are the suicides.  I have lost so many friends that I find it difficult to go on Facebook any more.

There has been a new series of outbreaks in the past five years.  Look at those you love, and if you care for them - whether or not you care about us - do something.  Because they could be the next victims.

Thank you for reading.