Testimony to CFSAC - May 2013

Testimony to the Chronic Fatigue Syndrome Advisory Committee
Department of Health and Human Services
United States Federal Government
Washington, DC - 22 May 2013

Today I want to talk about two facts and one symptom.  The facts are these:

1. Of the more than one million Americans who have CFS, up to 850,000 remain undiagnosed.  Where are they?  What happens to those people?  Why is this not an urgent concern of CDC?

2. Of the more than one million Americans who have CFS, at least one-fourth are homebound, and one-tenth bedridden.  One half cannot work at all.  WHERE ARE THEY?  Who takes care of them?  What happens to them if there is no one to take care of them?   What happens when there is no money because they cannot work and few make it through the social welfare maze?  I can tell you.  They end up on the street.  You think that's an exaggeration?  I personally know people who have ended up on the street because of this disease.  I know others who ended up living in cars.  What happens to a single mother when she is too sick to work and no one can care for her?  She loses her children, and then she ends up on the street.  Why is this not an urgent concern of CDC?  City of Hope in Los Angeles was founded to get patients with tuberculosis off the streets.  Where is the City of Hope for patients with ME or CFS?

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Now I want to talk about one symptom:  the symptom referred to on CDC's CFS website as "Post-exertional malaise lasting more than 24 hours." In the Fukuda (1994) definition, currently the official definition used by the federal government, PEM is one of eight symptoms, four of which have to be present for a diagnosis of CFS.  Obviously it's not considered important.

But if you ask patients, and you ask their doctors, they will tell you it is important.  Post-exertional malaise (PEM) is a defining symptom of this disease.  Maes and Twisk have even suggested it be used to differentiate CFS from M.E.

In three minutes I do not have enough time to explain to you what this is.  The word “malaise” is just as unrepresentative of the symptom as “fatigue” is unrepresentative of the disease.  "Malaise" sounds vaguely ... unwell.   My daughter, who had to take care of me from the age of 13, suggested Post-exertional dysfunction, because I would suddenly become completely dysfunctional.  I could not talk intelligibly, could not understand much of what was said to me, had t o be helped to bed.  I had a sudden increase in symptoms:  light hurt; my head hurt.  The pain behind my eyes and in the back of my neck, which never left me for a moment, got much worse.  My glands ached.  Most important, though, she said, “Mom, you just could not function.”

It does not take much to bring about what we patients all call a crash, depending on the condition of the patient.  Just the activities of daily living - getting up, taking a shower, getting dressed - can do it.  Mental exertion like reading or a long phone call can do it.  But it is sudden, and it is unmerciful, and you are never quite sure how long it will last.

I want to differentiate PEM from post-exertional relapse.  In post-exertional relapse, exercise makes you ratchet down to a worse level of the disease than before, and you stay there.  In roughly 24 hours I had over 50 patients respond to a query about this symptom.  One wrote that she was asked by her doctor to take a half-hour swim several times a week.  She ended up bedridden for two years.  Others told of being asked to take walks, or in one case, to run for 9 minutes a day. They all ended up bedridden.

Surely we already know this.  Christopher Snell made an excellent presentation to the NIH State of the Knowledge Conference on CFS in 2011, describing the drop in performance by ME/CFS patients on the second day of CPET testing, in contrast to deconditioned controls and patients with other debilitating conditions.  Alan and Kathleen Light et al at the University of Utah recently published research showing significant and unusual physiological abnormalities brought about by exercise in ME/CFS.  As my own physician, Dr. Derek Enlander, recently wrote,  “The notion that ME/CFS is caused by poor conditioning is no longer widely accepted.”

Most doctors believe that a patient who is “fatigued” is going to be made better by exercising.  Make it an overweight female and they are even more convinced that exercise is just what is needed.  But that is not true for this disease.

CDC's website on CFS gives the following advice for offering graded exercise to a bedridden patient:

        A subset of patients with CFS are so severely ill that they're
        largely housebound or bedridden. They require special 
        attention, including a modified approach to exercise.  Hand 
        stretches and picking up and grasping objects may be all 
        that can be managed at first.  Gradually increasing activity 
        to the point patients can handle activities of daily living – 
        getting up, personal hygiene, and dressing – is the next step.
[From the CDC's CFS Toolkit for Professionals ]

Listen to yourselves!!  You see a bedridden teenager with a feeding tube, and all you can think of is how to get her to exercise?  Shouldn't you try to find out why she is bedridden in the first place?

Until you have found the 85% of patients you have lost, until you find the patients who are lost because they cannot care for themselves and there is no one to care for them, you have no business talking about telling patients to practice grasping objects.  As long as there are doctors casually telling patients to “just get some exercise and you'll be fine,” you have no business telling bedridden patients what exercise they should do.

If doctors need to know anything about our disease, it is this:  exercise can make us very sick.  It can make us bedridden.  A bedridden patient is a very, very sick patient.  Simple exercise that you think is easy can in fact be dangerous for us.  It could very well be that what is happening with bedridden patients is that every activity sends them into over-exertion, into crash mode.  They are that sick.  Quit trying to figure out what exercise to give them and find out what's wrong with them.

As Irish patient and advocate Tom Kindlon puts it, “If graded exercise therapy were a drug instead of a treatment protocol, it would have long ago been banned by FDA.” There are too many adverse responses, and (frankly) not much evidence of success.

Post-exertional collapse, post-exertional dysfunction, post-exertional crash, post-exertional relapse – whatever you call it, is there really any debate any more over whether it exists?

Shouldn't that be the first thing you tell doctors?

I can tell you that it's the first thing we wish they knew.

And then, let's figure out why you can't find 850,000 missing patients.