Speeches from the front lines of #MillionsMissing: Carol Head

I’m Carol Head, President of the Solve ME/CFS Initiative, here with Linda Tannenbaum.  Our organization conducts innovative research to solve ME/CFS. We conduct research and have created a biobank of ME/CFS patient information for use by all researchers.
Before I begin, a quick note of thanks to Mark Cormizand. As you may know, we are based in Los Angeles, and Mark succeeded in obtaining a declaration of May 12 as ME/CFS day from Los Angeles Mayor Eric Garcetti. So the second largest city in our nation has now formally recognized this disease. Kudos to Mark.
I’m also an ME/CFS patient. I was quite sick thirty years ago, for many years.  I know the deep despair of being very sick, not knowing why you are sick, receiving no help and being dismissed.  Ignored.  However, I am one of the fortunate very few who is mostly recovered from this disease.  My heart breaks for the hundreds of thousands who have not.
We’re here today because it’s time for our government to increase funding and support for this disease. The Institute of Medicine Report published last year is a turning point in the history of this disease… and now we need to see the results of that report in the form of federal action and funding!
Let me talk for a moment about this report, which is a turning point for our disease.  First, the federal government has now clearly affirmed that this is a serious, physical disease… not a syndrome. For the million Americans who have long suffered with skepticism and lack of care, this is deeply affirming.
And therefore, there now exist no credible barriers to significantly increasing medical research funding for this disease that will lead to treatments and cures. Federal agencies and private medical research foundations now have a bright green light to move forward with substantial funding.  The seriousness of this illness can now only be refuted by those who choose to be ignorant.
And at the same time, very little has changed in the last year since this report was published.   ME/CFS continues to be a complex, multi-system disease that is still at the very early stage of medical research and understanding.  It can be reasonably debated whether this disease has aspects that involve the immune system, neurological system, genetics, brain and spinal cord inflammation, and many others.
Rigorous research has been done into all those areas, with many compelling and interesting research results.  But nothing yet definitive. And very few research dollars have been available to replicate even the most compelling findings.
And ME/CFS research is not yet far enough along to be of interest to pharmaceutical industry funders. The potential sources of private funding are quite narrow and utterly insufficient to solve this complex disease.
And of course the other thing that has not changed, hundreds of thousands of patients continue to suffer. In deep pain, usually without a diagnosis.  Locked inside bodies and minds that are no longer serve them well.  Almost always without a doctor who can help them. And with zero FDA approved drugs or therapies.
We can and must change that.  That’s why we’re here today.
For those of you who are new to learning about this disease, I pause for a moment: Why has this disease been so poorly supported with federal funding for so long?
First, most people have not believed that it is “real”.   The most common patient experience is to be told, even by medical professionals, that it’s all in your head. Get over it. Buck up.  We don’t tell people with Multiple Sclerosis to buck up and get over it. We don’t tell people in end stage cancer to get over it.  We take those diseases seriously. We show compassion for those who suffer with them.  And that’s what patients who suffer from this disease need and deserve.
Second, the name of the disease has kept it from being taken seriously.  It has been called “Chronic Fatigue Syndrome”. (I can barely stand to utter the words.)   We don’t usually describe diseases by a symptom.  For example, we don’t call lung cancer “Chronic Coughing Syndrome”.
But don’t believe me; believe the IOM report which said that ME/CFS patients “…are more functionally impaired than those with other disabling illnesses, including type 2 diabetes, congestive heart failure, depression, multiple sclerosis and end-stage renal disease.”
So, having called this serious disease by an inappropriate and insulting name is one of the factors that has kept doctors, friends, family members, employers from giving it the seriousness that is warranted.

Third, this complex disease has been poorly defined which means that diagnosis is difficult. That is not uncommon for a multisystem, complex disease, with symptoms that appear in other illnesses as well, and can be difficult to measure objectively. There is no simple blood test or genetic test for diagnosis.
Fourth, this disease has been incorrectly described as a psychological illness, and still is in many quarters. This mistaken attribution of a physical illness as a psychological illness has often occurred historically when diseases are complex and particularly when the primary suffers are women.  This IOM report clearly puts that utterly incorrect misconception that this is a psychological condition to rest.
And last, most medical professionals have little understanding of the illness. Most medical school textbooks and schools do not present meaningful information about the disease, so even new graduates today are either not informed or misinformed.
All five of these core issues were addressed in the rigorous IOM report. That’s why this report is a seminal moment in the long, painful history of his disease.
And we believe that ME/CFS matters to everyone, not just patients and their loved ones.
The ME/CFS economic burden on our nation is significant.  Our government has estimated $17 – 24 billion annual economic burden on our nation, due to lost productivity, indirect and direct costs.  And study after study has shown that what patients want most is to rise from their beds and to be productive. They are eager to work and lift the burden of care from others.
There are so many who suffer.  The IOM report estimates 836,000 to 2.5 million Americans suffer with this illness. The CDC has estimated 1 million Americans.  And certainly there are millions upon millions around the world. This is NOT a rare disease.  Most importantly, ME/CFS federal research spending is unconscionably low. On a percentage basis per patient, spending on ME/CFS per patient is:

  • 2% of the spending on lupus
  • 2% of the spending on multiple sclerosis
  • 9% of the spending on autism

Certainly those are serious medical problems; I don’t disparage in any way our government’s commitment on spending on them.  I simply must illustrate the enormous disparity in spending on ME.
The National Institutes of Health publishes a list annually showing its spending on various diseases.  In 2014 the ME/CFS research budget, ranked in order by research dollars, is 232 out of 242 diseases funded by NIH.  Almost at the very bottom.   And in actual dollars, the spending on ME/CFS is less than our government spends on hay fever.
So now, understanding the economic burden on our nation, the suffering of our citizens, and the new disease validation with the IOM report… what now?
So many people have suffered for so long without medical help or compassion.  Along with a million other Americans and their loved ones, I fervently call for this to be the beginning of the end of this deplorable tragedy that’s not worthy of the American people.  This is a MORAL issue, to stand by and allow the suffering of our people when there are so many advances in other areas of medical research. It is simply WRONG.
And in conclusion…
Our society’s understanding of this disease is where multiple sclerosis or autism and many other diseases was 30 years ago. Poorly understood. Largely dismissed. Skepticism about the cause.  Just as ME/CFS is now, there was a time when autism and MS were dismissed as “not real”.   We all now feel remorse for that now unimaginable insensitivity to the suffering of those with autism or MS.  Such is the inhumane dismissal of those who suffer now with ME/CFS. One day the skepticism about ME/CFS and the shameful treatment of those who suffer will be equally unimaginable to all.
This definitive Institute of Medicine report has once and for all declared that we must commit to funding research to eradicate this dreadful disease. Now there can be no excuses. No excuses from our nation’s health agencies that haven’t funded research at a level commensurate with the economic burden it places on our nation.  No excuses for low funding in comparison with other diseases.  No excuses from anyone–doctors, friends or family–who dismiss the devastating suffering of a million or more of our fellow Americans.
This is our time.  We are on the right side of history by funding research to solve this devastating disease. No excuses!
Thank you, from me and from all of us who work on behalf of patients at the Solve ME/CFS Initiative.  We are proud that our organization’s research that continues the drive toward a cure.
And meanwhile, no excuses! 


2 thoughts on “Speeches from the front lines of #MillionsMissing: Carol Head”

  1. It’s a wonderful speech! but dear MEAction, please can you correct a typing error at the end of the following paragraph:
    “Fourth, this disease has been incorrectly described as a psychological illness, and still is in many quarters. This mistaken attribution of a physical illness as a psychological illness has often occurred historically when diseases are complex and particularly when the primary suffers are women. This IOM report clearly puts that utterly incorrect misconception that this is a physiological condition to rest.”
    It should obviously read:
    “This IOM report clearly puts that utterly incorrect misconception that this is a psychological condition to rest.”

    1. Oh dear! I’ll go fix straightaway. I’m sure Carol said ‘psychological’ aloud!

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