December CFSAC Part 2: Touchdowns Will Win the Game
Dr. Jose Montoya said in the meeting that the best place for the type of clinical care SEID (systemic exertion intolerance disease) patients need is in the specialist setting. I absolutely agree. Those who are our experts now give a long time to each patient, an amount of time that is not profitable for each patient in a primary care setting. Our medical care system is still set as a pay for service.
"It's not unusual for primary care doctors' appointments to be scheduled at 15-minute intervals," says a 2014 USA Today article. This is not a match for our multi-system, multi-symptom, multi-treatment disease.
Setting aside the time element, there is also the level of knowledge needed. Specialists are specialists because they know more than a primary care doctor about a segment of diseases. If any disease needs in-depth knowledge to give good management, it's this one. Given the few SEID patients each primary care doctor will see, there is no incentive to take the amount of time needed to really know this disease well. If they need to spend time researching ailments, they need to know colds, bug bites, flu, rashes, diabetes, and managing high cholesterol.
That leaves us with two options: create a new specialty or try to get an existing one to embrace the disease. The former is difficult because specialties (or in today's system, subspecialties) start as fellowships in medical schools. A specialist is one when they have some paper that says they have an education in that particular area.
Considering this disease isn't even taught in many medical schools, getting a widely impactful initiative of fellowships at these universities is like winning the National Championship game against Alabama's Crimson Tide, very low chance of being successful. (My football reference throughout is a follow up to my review in Part 1. Plus, today is the Super Bowl. Ironic since I'm not a football fan. But I know enough. I live in Alabama. And today I worked on one of my clients' websites: a prep football team.)
The latter option presents another problem, as expressed at the meeting by Solve ME/CFS Initiative president Carol Head. And that is--which existing specialty? While I have my opinion, it is fraught with possible mistakes. And will likely, like the name issue, not have the support of all our experts or patients. More controversy, that's what we need. (rolling my eyes) I'm not going to give my opinion on this issue because my next point is more important.
Quickest and Cheapest Way to Do the most GoodHaving expert specialists in our disease all over the country, as is available to MS patients, would be like winning the game. It is the ultimate goal. And it should be pursued.
But, to win the game, you need some touchdowns. To get some touchdowns, you need first downs. To get some first downs, you start with possession of the ball in your opponent's territory. And before you can start making progress toward your opponent's territory, you got to get possession of the ball.
While we all love the drama and excitement of the long pass that the receiver then runs down the field, conquering yard after yard after yard after yard, it's often that the best goal is to just get the next first down. The ball is handed off to a running back who tries to go straight up the middle. He may make just 5 yards, but that's progress. And sometimes it gets a first down.
We've come to understand the biology of the disease incrementally. Yet, we've seen practically no progress, incrementally or bigly, in physician education. We're way back in the red zone. We have a long, big field of yardage to make progress in.
So, what is the quickest and easiest way to get a touchdown? I say that we take it with the first goal of getting patients to get an accurate diagnosis. We can get the specialists who know how to treat it after we get some more touchdowns. But, let's get some points on the board.
Why would the first goal be to get it where any patient can go to their doctor and get diagnosed? Because the benefits of just getting diagnosed are tremendous. And most patients will first go to their primary doctors with what seems like a flu that won't go away or because they feel tired and can't sleep well. That is usually the entryway into the rabbit hole / labyrinth for a new patient. So if we got all the primary doctors in the nation to know the criteria and know how to diagnose it (and because it comes from a credible source, they believe it), what benefits would we have?
Benefits of Just Getting a Diagnosis
- Stops the costly and time-consuming search. The doctor to doctor to doctor (complete with three months between each one) and referral after referral after referral would stop, just by the patient getting a diagnosis from their primary care doctor. Time and money will be saved.
- Brings emotional and psychological relief, ends the fear of the unknown. Many of our experts say they see it in their new patients. No more worrying that they have some strange, unknown infection that may kill them.
- Brings validation that it is not depression or psychosomatic. Some patients doubt themselves, doubt what their own body tells them. And they may blame themselves by making mistaken assumptions of the disease. A correct diagnosis that they have a disease of systemic exertion intolerance will validate that what they feel is real and in their body.
- Gives them something to tell family, friends, and people at work. Dealing with self-doubt is a problem, but even for those who are confident they are sick, without a diagnosis, they have to deal with not having any explanation to give family or friends of why they aren't as productive, as reliable, as present. Guilt can be reduced when they can tell others they are sick with something and it has a name.
- May help patients decide their course, whether to retire early, whether to file for disability, whether to forgo having children, whether to move, whether to stay in the home, whether to continue with building that new house, etc. If a patient is disabled, having a diagnosis is important to being approved for benefits. And in some cases, disability is the best option. But that option is out of reach if there is no diagnosis. And a person may not know to pursue that option unless they know they have a chronic disease with little chance of recovery.
- Empowers patients to go online and find the treatments or specialist that they may need. It would be good if they can get that referral to an expert from their primary care doctor, or get expert recommendations for treatment. But that is winning the game. In the mean time, having a diagnosis provides what the patients need to find that information themselves. Most of the patients I know had to go online to find this. Give the new patients the information they need to do the same. We can get this touchdown first.
- Brings us closer to doctors becoming experts. How many of the many doctors out there are potential experts in our disease? Finding out what this disease is and how it is diagnosed may prompt a doctor to find out more. His curiosity may be peaked, he will start identifying some among his own patients who have it. And that also may prompt some to go to the CDC or PubMed (database of research studies) and learn more. But if they don't know about the disease or how to recognize it, they won't take that next step.
- First, do a mass effort to get the Institute of Medicine diagnostic criteria into all first-line healthcare providers.
- Second, do the same for specialists who might have a SEID patient referred to them: sleep specialist, rheumatologists, etc.
- Third, give simplified treatment guidance, something that can fit on half a page. We can have it all in one page: diagnostic criteria and five treatment, activity and exposure change recommendations. Keep it simple.
I know that something distributed from a reputable source will first require some evidence, studies or something like that. But here are a few simple things that primary (and specialty) doctors could know, if we did a campaign of diagnosis and treatment suggestions:
- SEID patients tend to have exaggerated and unusual side effects to drug treatments. Start low on any symptom drug treatment.
- Exertion harms the body systems and what constitutes exertion is on a spectrum, differing in each patient. Tell patients to never push through the fatigue. It's a warning signal and will lead to a crash.
- Take regular breaks. Break up activity into smaller segments, using a time clock or other method to include breaks.
- Breaks should be lying down and without any sensory input and without any mental activity.
- Lying down helps the patient to recover from the orthostatic intolerance (due to low blood volume and inability to sustain normal blood pressure) and get more nutrients to the brain.
- Any sensory input requires energy and hinders recovery from the activity.
- Mental activity requires energy and hinders recovery from the physical activity.
- Finding a dark, quiet room, or lying down in the car for mini breaks during the day, possibly during lunch, or four times a day, for at least 15 minutes, much longer for more severe cases, will help prevent "crashes" of a big increase in sickness symptoms and debilitation
- Do some activities sitting down, such as chopping vegetables or folding laundry.