My 20 years with Myalgic Encephalomyelitis

Originally posted May 12, 2014.

I have had Myalgic Encephalomyelitis, or M.E, for 20 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).  I had tenure at a good university, although my sights were set higher than that.  I had a working relationship as an associate fellow with a research institute at an Ivy League school, which enabled me the luxury of being around the best and the brightest in my field.  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.  It was a charmed life.

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).

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 - and my viral load was ten times the amount used to diagnose an active infection.

I would also test 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.  A quarter of a century  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.  26 years later only 15% have a diagnosis.  That is a mighty admission of failure.

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 and, thankfully, only had to deal with these people once more, when I was on the antiviral Vistide for my cytomegalovirus infection.  Dan Peterson, my new specialist, had asked them to let me get the infusions at their center, and they had agreed.  But when I showed up at their office, one of the doctors took me aside and said that they could not let me have Vistide because my medical records showed I "only had CFS - nothing serious, like AIDS or cancer."  They said they could not justify using the drug on someone with a diagnosis of CFS - even though it was an FDA-approved drug for the virus CMV, which was active in both my blood serum and my spinal fluid.

Let me repeat that:  once given the label Chronic Fatigue Syndrome, I would meet disrespect from many doctors and people at NIH and CDC. None of my extensive testing mattered.

Although the progressive version of M.E. that I suffered from was unusually severe, I turned out to be lucky.  I was given the opportunity to go on the experimental Phase III drug Ampligen, in what is called a cost-recovery (I pay cash), compassionate care (I am allowed to do this because I was 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 eleven of the past fifteen years.  Again, I am unusual in that my illness erupts again within a year of going off the drug (which I did once voluntarily, and once 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, and an anti-cancer drug called Rituximab is showing some promise).  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, there are individuals within those agencies who do.  It is those who make decisions who do not care.

[Side note about the obsession with placebo trials - If just knowing you are on a drug can make your immune markers return to normal, your active viruses return to a dormant stage, and change tests such as SPECT scans and CPET scores, we should all be cured of anything by happy thoughts.  Does FDA really believe this?]

So here I am today.  I would not have written this were I not on Ampligen.  On Ampligen, I can drive, take care of myself (mostly), 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.

So twice a week I leave my house at 8:15 and commute by train 100 miles north to Dr. Derek Enlander's office in New York City, the closest site where I can get Ampligen.  I usually get home around 7 pm.  It is grueling, but at least I am getting the drug that keeps me from being a bedridden invalid.

Myalgic Encephalomyelitis is a serious disease.

CDC betrayed us by giving it a silly-sounding name in 1988 - CFS.  NIH allocates $6 million per year to study this disease - a pathetic amount.  MS gets $122/year with half the patients; "Behavioral and Social Science" gets almost $5 billion/year from NIH.

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.

So how is our government responding?  Suddenly there are three different initiatives within the U.S. department of Health and Human Services (HHS) to redefine the disease and rename it - done behind closed doors.  At CDC there is the Multi-site clinical assessment - which brought in respected clinics, but is now being polluted with research from a poorly conceived and run study by CDC in Georgia that used a different definition entirely.  HHS has turned to the IOM - Institute of Open Medicine - with a committee of whom the majority are not experts in either CFS or M.E.  NIH as a whole has given the "problem" of the name and definition to their  "pathways to prevention" program, or P2P.  In this case a committee was explicitly created consisting of individuals with NO experience -either medical of personal - with the disease, "like the jury system," a spokesman explained cheerfully.  "Stakeholders" with different viewpoints testify to the committee, and then this committee of amateurs will recess and vote on the choice of what to do next.  Precisely when did the jury system replace scientific method in determining medical policy?

[The IOM and P2P reports turned out better than expected, particularly the IOM report, because it has helped bring attention to the plight of over one million Americans suffering from a severe neuro-immune disease.]

They are going against the expressed wishes of 60 specialists who signed a letter asking that the U.S. adopt the Canadian Consensus Criteria (CCC), and the public members of the CFS Advisory Committee to HHS asking that the government adopt the CCC, and hold an open workshop of specialists to update it (it is ten years old) with current research results.  Why are those of us within the world of M.E. ignored?  Why is 60 years of biomedical research into M.E. ignored internationally?

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.

They can barely afford to live from day to day.  They cannot afford the testing I have had, and they most certainly cannot afford the treatment I am on.

I have lost friends to this disease; we have lost young people to this disease.  The viruses can get into your heart muscle; they can get into your liver.  Patients die of rare cancers as well.  And then there are the suicides.

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.

Coda, 15 November 2015.  The above was written for May 12, 2014 (ME Awareness Day).

I lost the love of my life, my soulmate, my husband of 40 years, to cancer on July 7, 2013.  We had lived in Delaware for 35 years.  To stay on Ampligen - and also because both my soul and my body need healing - I have moved to Incline Village, NV, at Lake Tahoe.  It is beautiful here.  My family (including 2 children and 2 grandchildren) are all back East, but Reno Airport is nearby and I put the cost of Ampligen on a Southwest credit card ...  I am able to get my twice-weekly infusions from Dr. Dan Peterson just 2 miles away.  And this is a good house for writing, so I hope to be able to finish my book manuscript, "Slightly Alive," this winter.  I still live in fear of losing Ampligen.  But I'm okay.

It has been 27 years since CDC adopted the silly name "chronic fatigue syndrome," and even they admit that one million Americans have my disease but no diagnosis.  Where are they?  The question continues to haunt me.

But there are optimistic new developments, from the IOM report (tho flawed, it is getting publicity) to newly locating our disease at NIH in NINDS.  Stanford and Columbia Universities are taking the disease seriously.  The most intriguing new developments are happening as I write, with healthy professionals finally asking that the PACE trial (whose authors claim cognitive behavior therapy and graded exercise cured "CFS/ME") be investigated by impartial scientists - thank you Dave Tuller, James Coyne, Vince Racaniello, Ron Davis, Jonathan Edwards, Leonard Jason, Bruce Levin, and Arthur Reingold.  It would be nice to report that although we don't know the answer, we are finally getting the funds to find it.  Even better to be able to say patients are finally being diagnosed, taken care of, and treated.   The first step is getting the severity and prevalence of Myalgic Encephalomyelitis recognized.  Let us hope that won't take another 27 years.