Friday, May 24, 2013

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?

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.


  1. Post exertional dysfunction!

    Sounds about right.... I was thinking of this yesterday and my best was Post Exertional Problems... my imagination was not taking me much further. Dysfunction is a much better word. :)

    Your right however - it is not the fatigue that is the main problem (at least not for me) it is the after effects of doing more than my invisible ceiling allows......

  2. Great testimony, Mary! Thank you for all of your testimonies through the years.

    I hate the term Post Exertional Malaise (PEM), for the reasons you gave. I love your term (your daughter's term?) Post Exertional Dysfunction.

    I think Post Exertional Relapse is pretty good, but the term suggests that the relapse will be followed by a remission. What if the relapse is permanent? Is it still a relapse?

    If a person never returns to his/her pre-exertion baseline, wouldn't it be more accurate to use the term post-exertional disease progression?

    1. I like that. Post - exertional disease progression.

    2. Hi Flo, how about Post Exertional Syndrome? Since they love attaching syndromes to us! At least it would be SOMETHING....but alas WE are not permitted to give our input. I better stop right there, before I get myself in a rant and have to stay in bed for a week...

  3. Thank you so much Mary. That was great.

  4. I hope they listened.

    I think people with CFS should do AS MUCH AS THEY CAN SAFELY - and you come at it from ZERO.

    I increase my capability for anything by a tiny percentage - and watch myself carefully. I might try the same increase for a couple of weeks - always ready to back down.

    I will be happy when I can walk around the block.

  5. Brilliant post. I just wish more doctors would take the time to read and understand about PEM.

    Six years ago I was doing relatively well - up and dressed most days and able to drive to visit friends now and again. It had taken 11 years to get to that point, very slowly increasing what I was able to do without slipping backwards.

    My doctor at the time told me that she felt I should now undertake very gentle exercise (Graded Exercise Therapy) at the local gym and explained that they would know exactly what I could and couldn't do and it would make me feel better. I attended three times and it was a disaster. After several months back in bed I even sold my car as I was unable to drive. Six years later and I am nowhere near as well as I was before GET.

    This PEM must be made a headliner where our illness is concerned.

  6. Just went through a PE-Dysfunction this week. Because on Sunday I took a shower, got ready for niece's bday party and was there for 2 hours. My husband took care of my kids. I just got to talk to relatives. Well, severly crashed Monday night, bedridden, couldn't think, difficulty responding to questions, had this for 24 years the last 4 so debilitating. This disease changes so much over the years... i think researchers miss this.. escpecially only wanting to study those with no comorbidities....that rules out the really sick. this disease damages the body allowing for comorbidty conditions, (lymphoma, ibs, migraines,hypothyroidism, etc...) --- Tracey

  7. I forgot to thank you so much for your post. It means so much for me and my family, all you have done as advocate.

  8. I've also wondered what happens to them, where they go, and even if it wouldn't be such a bad idea to start a commune or something. Half can't work but, half (myself included) still have a limited amount of normal functioning. I can barely hold myself up at my desk but, I could water plants and cook meals (given the right accommodation), give meds, ect to someone who couldn't do that themselves and rest up myself in between. Not ideal, but better than people ending up on the street or worse.

  9. Mary, you are so appreciated for doing this year in and year out. PEM or PED, it defines the contours of possibilities for me in the "world". My world is the dim light of my bedroom and some very strategic activities to hang onto this body.

    Thank you Mary, Beautifully said!

  10. Thank you Mary. Great testimony and 'right to the point' as ever. x

  11. I love this post. Thank you.

  12. 'Fatigue' and 'Malaise' are such inadequate terms when it comes to this illness as those without experience of it interpret them to mean we feel tired especially after exercise and doesn't everyone feel tired after exercise? No wonder the illness is so derided and misunderstood.

  13. Great testimony! Thank you for speaking so eloquently to represent so many of us.

  14. Another Thank you Mary, I can be feeling almost human and the next minute I am in bed. I too am wondering what is happening to all those folks, cuz I am always just one day away, one Bureaucratic decision, one INSURANCE decision away from homeless. I am so greatful I am not, I believe this disease is much more prevalent because accounting abilities are hard to make when no one is accounting. If only I had the money, the strength, to help these people, it is not enough that some scholars and doctors are truly caring and interested, we need action at the lowest levels. I wanted to start a support group, (I can get crazy when I am able to get out of bed) well I had to realise, it would take guessing 4 folks to be able to take over while the rest of us are in bed for whatever. I don't SEE that even being an option. I don't drive anymore, the safety factor is just too dangerous, however, if I am accompanied I feel just fine, I just turn the driving to them when any number of disabling factors happen. I have an extremely hard time just going to the dr. its EXHAUSTING...some days I just call off "appts" sorta like calling off work, that is what this is like, bonecrushing work to step out of bed, then recuperate for 2-3 days. We don't want to be labeled non-compliant do we? If you have any suggestions on how to help those homeless folks, please let me know--so outrageous, it really is happening.

  15. Very impressive testimony. Kudos to you for your testimony, I did that once, to help pass the anti-stalking/domestic violence law in my state-very empowering-particularly looking up and seeing rap attention while I spoke. Thank You so much for speaking for us...I don't even go to specialists anymore, they are not worth the effort it takes to go see them. I see a GP who is caring and will order whatever I wish and insurance deems important enough to pay for..and I pray a lot, and will never, EVER, give up my hope. Thank you again!!

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