Tuesday, May 17, 2016

Pat Blankenship, 1949-2016, Rest, dear friend

On Monday, May 16, we lost another friend to Myalgic Encephalomyelitis, Pat Blankenship.  She was just 67.

Here is an essay Pat wrote for the Obama-Biden Transition Project Health Care Report, December 2008.  That was 8 years ago.  We had hopes at the time it would make a difference at NIH (which continued to fund research into ME and CFS at $6 million/year, or $6 per person a year - less than they spend on male pattern baldness.  The full report remains part of the federal records at HHS.   

Living With M.E.
Pat S. Blankenship

In the next few pages, there is a short summary of my experience with Myalgic Encephalomyelitis. I became ill in 1989, and remain totally disabled now. I have been disabled by M.E. longer than I worked as a productive member of society. I am an astrophysicist, but spent the bulk of my short career working in computer telecommunications. Before moving back to my family home in Alabama, I lived in the Northeastern US, primarily the Washington area. That is where I sought treatment for this new disease when I became ill, and found that there was no treatment that worked. During the years I lingered there trying to find medical help, I became involved with the CFS Coordinating Committee, now called the CFSAC. I gave testimony at several of those meetings. I worked with the NIH to help select the first slate of patient members of the committee, and I was also involved with the meetings at the CDC when the first accounting scandal was made public. Those latter activities are public knowledge and my involvement was small and brought about no positive outcome. That's why my statement here is a personal one about how hard it is to live with this disease.

I was struck down at the age of 40, while working as a consultant for the federal government on communication interoperability issues, in November, 1989. In my case, I had an extreme viral onset that was like a severe case of influenza; it was like Texas flu or Swine flu, both of which I had during the years in which they were pandemic. As usual, there was supreme difficulty in obtaining a diagnosis. My knowledge of this disease was nil at that time. For all I knew, I had Lyme disease, or hepatitis, or any of a very large number of viruses I was tested for. I was finally diagnosed by an infectious diseases specialist who used the CDC 1988 definition of CFS, through a process of elimination. I've come to know a lot about what I now know is Myalgic Encephalomyelitis due to brute force exposure to it.

What is it like to have Myalgic Encephalomyelitis (M.E.)? There are physical, cognitive, and social as well as emotional aspects that have happened in my case; we are all different, for this disease has 'different results after inflicting the same insult' upon us. That is a phrase I learned probably 15 years ago from a fellow activist in the Washington, D.C. area. Here is a little glimpse of how my life crumbled from what was once a promising career at the top of a group of enterprising people who were planning for 'Battlefield 2005 telecommunications,' to what I am now, a broken woman who can barely string sentences together.

I have been totally unable to work since 1991, and have been disabled since that time. I lost my job. My legs literally went out from under me and I had to undergo lengthy physical therapy while using 2 canes to walk, haltingly and for only short distances. I walk much better now, after several courses of therapy, including two at facilities of the Warm Springs Institute in Georgia. There are times when I stand too long, and I begin to black out. I can avoid fainting if I sit down, and I will sometimes sit down in a public place on the floor rather than risk fainting. Other physical problems include the onset of fibromyalgia, and several organ system diseases which may be related to the autonomic nervous system aspect of M.E. Since I don't know if they are cause-and-effect, I don't relate them here, but I have become more-or-less bed bound, with only 2 to four hours of activity per day .

Early in the disease, for some months, I was unable to speak more than a few words. I can usually carry on a conversation now; my self-retraining in what I call word retrieval has been compared to what a stroke victim goes through. Still, I frequently have to close my eyes to remember words though. Reading the printed word became a thing of the past. I can now read a few sentences at a time, but my retention is very poor. I listen to audio books now, and I like to joke that I can listen to the same mystery novel over and over because I don't remember the end. In the past 6 years, I've also developed permanent visual dysfunction too, called palinopsia, which makes it nearly impossible to drive at night, and makes reading from a computer screen much more difficult.

Memory is a very tricky problem now. I have a sort of sliding window of time in the recent past during which I can remember events. It may be 3 days ago up to 6 months ago, or the window may shut down at 3 weeks. I never know if I am going to remember an event, an appointment, or a person. In fact, I have more or less given up on people recognition; unless I see someone daily or maybe weekly, I do not recognize the face. The only reason I know about this sliding memory window is that I have lived with my sister for several years, and she has described it to me. I keep track of appointments and such on my cell phone calendar, without which I would never be able meet any of my obligations. This technology has helped me tremendously in the last few years.

I've written this memory description down and keep it for whenever I need to explain it to people, like doctors. Or, as in for this description of my condition for our input to the policy makers for President-elect Obama.

Maybe it is not obvious, but in becoming this ill and unable to function at any sort of professional level, I lost the friends that I had made throughout the years in my field. I lost track of my friends that I had still kept up with in academia, because I was still living in the same northeastern megalopolis where we had been friends. My extreme inability to travel – energy deficits, the need for frequent stops to sit or lie down, and other problems that are poorly understood by healthy people – also cut me off from many of my dearest friends, including my most 'significant other.' I stopped making new friends, unless they were sick like me and I got to know them through support group meetings, or in attending government committee meetings. Even then, I usually lost track of them (unless I made a photograph – I learned that was an important tool) due to memory problems and lack of functional time during each day.

Social isolation has become probably the most frightening aspect of living with M.E. The physical symptoms can only make you sick or dead. But isolation makes you miserable every hour of your day. It never ends. Of course this is true for all chronic illnesses, but M.E. Is so poorly understood by everyone who does not have it, it's not even possible to get a fair hearing from one's pastor or an organization that is intended to insure against isolation. Socially speaking, I am living in a dead zone.

My own family cannot find their way to an understanding of what has happened to me. I live in my own home, a huge house that I cannot clean, and cannot afford to hire people to clean or to take care of the lawn. So I am always attempting – and always unsuccessfully – to do those chores myself. The result – a feeling of self loathing because I can't do what I should be able to do. After being sick for almost 20 years, I still try to do what is of course impossible and act like I'm not sick.

That's irrational. So finally, there is the emotional part of this disease. I don't say that I never feel depressed, but I'm not clinically depressed. What I am is just what the book title said: Sick and Tired of Being Sick and Tired. Angry that the people I have trusted to find out what is wrong with me and to find out how to treat it, took the money and misused it; they stole my trust. They might as well have stolen my life. Afraid that I will never feel well enough to accomplish any of the things I had set aside in my younger years to do after I climbed my big career mountain. Afraid I will never again enjoy life like I did 21 years ago.

It took me several days to pull these few pages together, from material that I mostly already had written. Along with an “executive summary,” I hope it will give some insight into what living with M.E. Is like, and why we who have the disease cannot rest until our few short pleas are met by our elected officials.

Addendum 1: Some things I wrote about CFS/ME in the past

In 1999, I published this information on my web site (since discontinued due to progressive illness) about the first time the CDC misspent funding for CFS research. It was informative then and still is now.

page27image13416 page27image13576

I am working on a way to put these numbers (research funds misspent by CDC) into understandable context. How about this: For every $0.98 the CDC spent on CFS related research from 1995-1998 inclusive, they stole another $0.88 from the pot and spent it on other programs, and they stole $0.41 from that same pot and no one can tell WHERE it was spent.

Another way to state it: For every $1.00 Congress authorized to be spent on CFS research, CDC spent only $0.43 on research, stole another $0.39 and spent it on other programs, and then lost track of the remaining $0.18 and can't account for that at all. In other words, only 43% of the authorized funds were actually spent on CFS research.

If I still paid taxes, I'd be hopping mad. As it is, if I could hop, I would be also. I want to see careers in tatters and ruin. I want to see ACCOUNTABILITY.


Now I have a question for NIH: How clean are THEIR accounts?

Addendum 2:

This is another snippet of information I put on my web page back in 1998. This is one of the meetings I attended and testified at.

April 1998 Meeting of CFSCC

Before I started my presentation, I displayed a copy of the May, 1998, Reader's Digest which has an article about the American's with Disabilities Act (ADA) in which CFS is lumped with myopia and body odor as 'not a real disability.' After displaying the article, I told the group that more people will see this article than everything that has been produced by this Committee in its entire history. That is the reason I am asking for support from the Committee as follows:

Proposal: CFSCC to reply to media coverage of CFS

* After 4 years, the CFSCC has yet to produce a single release of corrective information after negative press on CFS

* Attacks of CFS and PWCs are never-ending and not improving over time * Who speaks for PWCs?

Sample of press coverage of CFS:Washington Post July 1995
"Chronic Fatigue Rare, HMO Study Concludes"
* Citing CDC demographic studies, CFS branded as a rare diagnosis not
warranting study funding
* Major media outlet that provides articles for other newspapers across the



Pat was a smart, funny, practical woman.  Her intellect was lost to the nation 27 years ago.  Then she simply got sicker and sicker.  The stage of her illness is frozen in time in 2008 in this essay that she wrote.

Pat, I miss you now and I will always miss you.  Thank you for everything you gave us.

Mary Schweitzer

Thursday, May 12, 2016

For May 12, 2016: ME is not a "mysterious" disease.

Today, May 12,  is International ME Awareness Day.

The whole point of this blog is that NIH and CDC behave as if we knew nothing about ME.  That is not true.  It is not so mysterious.  You do not have to start from scratch as you slowly turn to investigate it again.  Bethesda and Atlanta may have been asleep, but the research community was awake.

What is ME?

ME stands for Myalgic Encephalomyelitis - technically, encephalitis, meningitis, and muscle pain; more generally, a neurological disease characterized by significant immune abnormalities.  The original name was atypical polio, coined in 1934 to explain an outbreak at Los Angeles County Hospital.  In the 1950s, the UK and British Commonwealth nations switched to Myalgic Encephalomyelitis.  At the same time, however, US researchers started using “epidemic neuromyesthenia,” a name that never caught on in the US.  ME was coded by the World Health Organization under neurological disorders in 1969 and has remained there since; epidemic neuromyesthenia is also coded under neurology.

It is a serious, multi-systemic disease.  To see what this disease is like, try these two sites:

For three decades, if you asked the US government what this disease was like, you would have received a very different answer.

In the mid-1980s, a series of cluster outbreaks in the US brought the federal government’s attention to the disease.  Many of these were linked to an outbreak of Epstein-Barr Virus (EBV), or mono (also called glandular fever), so at first NIH began calling it “Chronic Epstein-Barr Virus.”  However, by 1986 the US government’s “expert” on CEBV, the late Stephen Straus at NIAID (National Institute for Allergies and Infectious Disease) had concluded it was not related to EBV (a decision that has since come into question).  In 1986 Straus began using the name Chronic Fatigue Syndrome as a substitute for CEBV.

In 1988, a committee convened by CDC accepted Straus’s choice, Chronic Fatigue Syndrome, or CFS -“chronic” as in chronic complainer, “fatigue” as in “Yeah, I’ve been feeling tired lately, too,” and “syndrome” as in syndrome of the month.  They could not have come up with a more dismissive name if they had held a focus group.  The name went with a vacuous definition that emphasized the single symptom “fatigue,” which is common among many serious diseases.  In a society where everyone feels a bit overworked, the name sounded silly and so then did the disease.  CDC portrayed it as a disease of upper middle class white women trying to have it all, who could not handle the stress of their ambitious lifestyles.  For decades the only solutions offered were psychiatric therapy, exercise, SSRIs, and sleep aids.  

Had the US government paid attention to experts in Canada and the UK, they might have simply adopted the name in use, ME.  If you go to the decision-tree, to the point where CDC broke off and adopted CFS instead, along with what is called a “garbage” diagnosis (the disease was diagnosed by what it was not), it is clear that the next thirty years were disastrous for the patient population.  

What was the result of this detour into the concept “CFS”?  Nearly 30 years later, even CDC admits that at most only 15% of patients have a diagnosis.  That means 850,000 adult Americans - and untold teenagers and younger students - have this disease and have no idea what is wrong with them.

And of the 150,000 who are diagnosed, the vast majority are white, have a higher-than-average education and (before their illness), a higher-than-average income.  The illness leads to impoverishment for most patients.  And for most patients, it is a life-long sentence.

A recent study has confirmed the results of other studies in finding that one-fourth of patients are bedridden and/or housebound.  Only one in five can work either part-time or full time, which is why this disease experience is also a descent into severe poverty for most patients.  

WHERE ARE THE 850,000 AMERICANS WHO HAVE NO DIAGNOSIS?  Hint:  They are most likely to be people of color, and they are more likely not to have started out with much money in the first place.  Where are they, and where are their children?  Some are lucky:  they have extended families who care for them.  But many are alone and for those who started out in poverty, I do not want to think what has happened to them.  This is a criminal dereliction of duty on the part of CDC!

So for three decades, hundreds of thousands of Americans have fallen ill with this invisible disease, a life sentence in most cases, rendered unable to earn a living, and if they do not live in a family that can care for them, are reduced to severe poverty - if they didn’t start out in poverty to begin with.  

In the meantime, the name and vacuous concept of “chronic fatigue syndrome” was a gift to a small group of British psychiatrists who fall into the school of “biopsychosocial” medicine.  They adopted a definition different from that in the US - their definition, called Oxford, required only six months of debilitating fatigue, and did not distinguish between CFS and major depression or anxiety.  They pushed the view that the disease was caused by “false illness beliefs” (mainly in women or young people of both genders), and could be cured with cognitive behavior therapy (to teach the patient she wasn’t really sick) and graded exercise therapy to get them back into shape, and voilĂ , everything would be okay.  

Patients forced into CBT/GET (as the combination was called) were made much worse, in a very dark period of British medicine.  The leading lights of these theories, Simon Wessely, Peter White, Michael Sharpe, and Trudy Chalder continue to pump out articles reaffirming their own work, never referencing that of researchers who have found biomedical abnormalities in patients with this disease.  The most disastrous study to come out of this school of thought is the PACE study, funded by $8 million from the British government, purporting to “prove” that CBT/GET was the best choice for treatment.  

The PACE study has so many problems I cannot possibly explain them all here, except to say I would have flunked a first-year statistics student who defied so many rules of statistics to come up with the solution they wanted.  There is currently an effort by scientists and some patients to have the anonymized data from the study released so the results can be either confirmed or dismissed, but so far the relevant institutions, headed by QMUL, have refused to release the data - insisting that nobody really wants it for scientific reasons, but that there is an “orchestrated campaign” to harass the principle investigators.  For the story of the PACE trial, read this article by David Tuller, of the school of journalism and health policy at the University of California, Berkeley (in three installments):

This is a good summary of the difficulty getting the PACE authors to share anonymized data, written by a scholar with no ties to the ME/CFS community:

As a scholar, for me the most egregious error in the "biopsychosocial" studies like PACE is the absence of references to the growing body of literature on biomedical abnormalities in patients with the disease.  For a recent bibliography, see:

The proponents of this viewpoint have had a great influence on how CDC and NIH have shaped their views of the disease.  Somewhat ironically, the disease has never been studied at NIMH (the National Institute for Mental Health at NIH).  Rather, for the first 12 years it was within NIAID at NIH and in the division of viruses and exanthums at CDC.  So we had the strange picture of researchers who were not trained in psychiatry insisting that this disease was primarily psychiatric in nature.  

Let us return to that point in time, where the wrong choice was made to go off into studying the disease as if “fatigue” were the identifying factor (it is not).  Let us return to that poor choice and fix it:  use the name they should have used in the first place, Myalgic Encephalomyelitis, ME.  What are we talking about?

(The US HHS and NIH use ME/CFS as a compromise; CDC continues to use CFS.)

ME is a very serious disease.  Both the Institute of Medicine (commissioned by the Department of Health and Human Services, or HHS) and an initiative called “Pathways to Prevention” at NIH, produced reports last year stating strongly that the disease is in no way psychiatric.

According to the CFS Advisory Committee (CFSAC) to the Secretary of Health and Human Services, Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as defined by the Institute of Medicine is "an acquired, chronic multi-systemic disease characterized by significant relapse after physical, cognitive, or emotional exertion of any sort. The disease includes immune, neurological and cognitive impairment, sleep abnormalities, and autonomic dysfunction, resulting in significant functional impairment accompanied by a pathological level of fatigue. The cause of the disease remains unknown, although in many cases symptoms may have been triggered by an infection or other prodromal event.  There are no approved diagnostics tests or treatments.”

NIH is going to study 40 select patients “to begin to understand the clinical and biological characteristics of ME/CFS.”

While I am pleased to see both CDC and NIH improve their perspectives on the disease, the fact of the matter is while they were sleeping for 30 years, other research was being conducted into the etiology and the biomedical parameters of this disease.


Why not begin with research that has been under way the entire 30 years that researchers were funded by patients, because there was virtually no funding available from the federal government?

What we need is for the US (and UK) governments to start with the existing research in the field.  Here is a quick list of how to get started:

Invest in ME, an organization in the UK devoted to research on ME that runs an amazing international conference every year - a cornucopia of international information:

Simmaron Research Institute:  http://simmaronresearch.com 

The Open Medicine Foundation:  http://www.openmedicinefoundation.org/

Stanford ME/CFS Initiative:  http://med.stanford.edu/chronicfatiguesyndrome.html

National Centre for Neuroimmunology and Emerging Diseases, Griffith University, Australia:

The Alison Hunter Memorial Foundation (Australia): http://ahmf.org

Cure-ME (Europe): http://me-cfs.se

The HHV-6 Foundation:  http://www.hhv-6foundation.org/

The Enterovirus Foundation: http://www.enterovirusfoundation.org

This is just a start.

But it IS a start.  No need to reinvent the wheel.  NIH - start from the existing state of the research, not from where NIH/CDC has been for the past thirty years.   And please, £6 million/year is not enough for these research institutes.  We need parity in research funding comparable to other disease in severity and prevalence.  $500 million is about the right number.  And we are still waiting for the promised RFAs.