I tried to call in to a radio show and all I got was a busy signal. This is what I wanted to say.
February 16, 2015 at 3:56pm
First, stop calling it a condition, disorder, illness, etc. – it’s an organic disease. There’s plenty of evidence to prove it.
This morning I listened in increasing dismay to a radio show about the IOM rollout of a new clinical definition for a disease they’re calling “SEID” –Systemic Exertion Intolerance Disease. Exactly which disease they’ve defined, to me, is a crucial issue that they haven’t really gotten right, but then, if you’re reading this, you might already be aware that I believe that ME (Myalgic Encephalomyelitis) is a different disease than CFS (chronic fatigue syndrome, a political construct created by the CDC and defended by the DHHS for decades now). Throughout the show, the host and all participants referred to the disease under discussion as “CFS,” which may mean that my comments about ME are slightly off-topic. On the other hand, most everyone in any position of authority considers CFS and ME to be synonymous, so my comments are relevant in that context. To be clear, I am discussing ME.
a doctor named Daniel Neides of the Cleveland Clinic made several claims during the radio program, and I would like to address them from my knowledge base.
1)
Claim: “there are NO diagnostic tests that show up abnormal with CFS. (or the diseases conflated with it – ME, for example).”
In reality: There are at least 30 diagnostic tests that may be used to confirm a diagnosis. Some are more or less available to the typical MD, but that does not mean they do not exist. It is utterly irresponsible to tell patients there are no diagnostic tests that show abnormalities.
It would have been better to say: "Tests that do come back abnormal are not commonly administered, and that some of the abnormalities require careful interpretation. Specialists in this disease are more familiar with the particulars of this, so I’ll yield the floor to Dr. Enlander, who is clearly more familiar with the disease than I am."
2.
Claim: Lifestyle changes are adequate treatment – This one is huge, so I'm going to take it in parts.
a.
Reality: If lifestyle changes actually treated the disease, you would not be talking about very slight improvements in quality of life. Instead, you’d be trumpeting your cure rate. Be honest. Lifestyle changes such as reducing stress and eating better quality food help everyone’s quality of life. That does not qualify them as a medical treatment for a debilitating, multiple-system impacting disease.
b
Reality: lifestyle changes end up being code that’s interpreted as “blame the victim” – how many times have we heard this – “if you would change your diet, you wouldn’t be sick.” Plenty of people with ME have much, much cleaner and better diets than the general public who do not have ME, but you haven’t collected those data, have you?. If you wanted to analyze the correlations from a different angle, you might be able to make the case that a healthy diet correlates with ME – and that instead, we all need to eat the same crap everyone else does so that our ME would magically go away. Oh, it doesn’t work that way you say? Right. A clean diet does not make the neurological disease ME go away. It may help some aspects of bodily function, as it would for any individual. Again, it’s fallacious to claim that an action which would help any or every person is a specific medical treatment for a disease.
Instead, you could say, “We have found very limited improvement of symptoms through careful following of strict lifestyle parameters. These are not curative, but while we’re waiting for research into medical treatments, that’s one part the patient can do. Additionally, some symptomatic treatments seem to help, but again they do not address the underlying disease process. Some doctors are treating with antivirals and other medications. Perhaps you should ask them about their successes.”
c.
Reality: lifestyle changes are important for addressing many chronic conditions – yes, but you don’t automatically treat heart failure with yoga and a good attitude alone. There are many, many medicines that address different aspects of cardiac malfunction, from a-fib to congestive heart failure. When medications fail or aren’t administered in time, surgery can save lives. ME patients suffer rampant medical neglect because of the kind of thinking displayed by this irresponsible doctor. Because of the complexity of presentation, with symptoms spanning immune, neurologic, musculoskeletal, endocrine, urinary, digestive, and energy production systems, doctors tend to either ignore new symptoms or treat them as if they must just be part of ME. Patients are taught not to request help from their doctors because doctors get angry when their patients don’t improve over time. This doctor suggested that we “doctor shop” looking for someone who can treat us, but the reality is many of us are abused by doctors who have no insight into the depth and complexity of the disease. We’re told to relax, meditate, eat better, but no real support is offered. Why pay a doctor to tell me to relax? I can figure that out on my own. I want to know why my mitochondria don’t work. I want to understand the state of my immune system and why I never get colds anymore, but constantly have swollen sore lymph glands. I want answers, not platitudes or blame.
ME patients want research into real treatments. We’re perfectly willing to participate in lifestyle changes – after all, many of us have had our lifestyles drastically changed by the disease already. If you had any idea of the level of attention and practice that actual pacing takes, you’d marvel at our mad lifestyle skills.
c
Reality: enough with the exercise pushing. what you’re not saying, and it’s getting to the point of grave irresponsibility, is that for people with the level of energy system damage that ME evidences, activities of daily living count as exercise. Tossing the words “movement” and “exercise” around and saying they are important, without qualifying them for the casual listener, without explaining that every movement must be considered and counted as part of the total energy expenditure that’s safe for the individual – it’s simply unconscionable. When brushing teeth, combing hair, preparing a bowl of cereal, … the most minute tasks end up being “exertion” – (not the typical understanding of the word, right?), then if you’re trying to help patients,
what you need to do is shout from the rooftops that these patients need to be treated with extreme caution when increasing activity levels. What you said basically reinforces every stereotype – that we just need to eat better and get more exercise and we’ll be fine. You seemed pleased with what you were saying, as if you were encouraging patients that we could get better if we just follow your advice. Yet the disease in question has about a 5% recovery rate, and many, many people live with dramatically reduced capacity for the rest of their lives.
d.
Reality: – Chair yoga is beyond many moderate-to-severe ME patients, and completely beyond the very severe. People with ME urged to do chair yoga will try to do it, at the expense of being able to sit up to do some vital piece of paperwork, or even to eat a meal. When you suggest that your clinic meets people where they are and start with the example of chair yoga, you immediately lose credibility with more severe patients.
What I wish you had said: “We recommend careful heart-rate monitoring because of documented impact when heart-rate is elevated, getting the individual into anaerobic activity. These patients need to be extremely careful not to let their heart rates go up above a certain point, and with long-term, attentive pacing and exquisite care, they sometimes can achieve increases in functionality. It’s not a cure, but we recognize that a 10% increase in activity can make a huge difference to someone functioning at 25% of former capacity.”
3:
Claim: people need psychological support to address years of debilitation and isolation.
Reality: We need support in the form of household help so that we don’t use every last bit of energy we have to accomplish self-care. Our lives would be less miserable if we had help with the physical things we cannot do for ourselves. Moreover, we desperately need medical research and medical treatments to help us get out of debilitation and isolation. Many of us have become adept at coping with the devastation of this disease, and will continue to do so.
What you should have said: Yes, some could use more support, but the best support we could ever receive would be respect, belief, and fully-funded biomedical research.
