Diet and Myalgic Encephalomyelitis
Let's start with the basics
-There is no diet proven to cure MECFS.
-Eating healthier generally makes people feel better.
-If you have an allergy or food intolerance cutting that food from your diet will make you feel better.
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What is good?
-Tips for how to eat healthier when you don't have enough energy to cook well
-Awareness of things like celiac and lactose intolerance
-Blood testing for vitamin deficiency (in particular anemia and b12 deficiency is common in fatigue patients)
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Where does it go wrong?
-People claiming diets can cure MECFS
-People claiming an allergen is responsible for all ____ symptoms
-People blaming those with poor diets for their chronic illness*
*In particular this is harmful as it disproportionately affects poor and marginalized groups who often have no choice in what food they have available. It also perpetuates the false narrative that chronically ill people choose to be sick by making poor health decisions.
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How does it go wrong?
-Many people diagnosed with MECFS have an underlying metabolic disorder or allergy that response well to a particular diet leading them to conclude that diet cures ME
-Many people try dietary interventions continuously meaning the chances of being on a dietary intervention at the time of remission is high (and 80% of ME cases are relapsing-remitting)
-On average the diet someone tries when they become chronically ill will be overall healthier more balanced etc which can lead to an improvement of general health even though the diet had no effect on disease activity.
-Healthy people perpetuate the myth that eating healthy protects from chronic illness as a way of feeling safe
-Doctors perpetuate the myth that eating unhealthy food is the root cause of all chronic illnesses to avoid treating difficult cases
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The truth
If eating healthy cured chronic illness we would know. The fact that lots of people eat healthily and are still chronically ill indicates there are much more important physical factors at play.* This myth is disproven on the other end by large numbers of people who eat terrible diets but live their lives without chronic illness.
*In fact I would argue on average chronically ill people eat healthier better-monitored diets than healthy people
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What do I do?
-Break down the myth that eating healthy food makes you immune to chronic illness.
-Eat the healthiest diet you can given your circumstances and adjust it based on what works for you. Don't blame yourself for dietary issues outside your control.
-Remember not to generalize your experience to others and remind others that nutrition is an individual and personal journey.
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Diets don't cure Myalgic Encephalomyelitis. This is a myth.
Content warning for food and diet.
Here's the thing about myths they are often based on grains of truth. The food and chronic illness myths are particularly prone to this. Why? Anecdotal evidence and personal experience.
Here's how it works
1.) Someone feels badly, maybe they are diagnosed with a chronic illness maybe they "just" have burnout or the start of stress-related health issues
2.) The person takes the responsible step to take better care of their health. They cut down on stress, they start therapy, they eat healthier, they start exercising more.
3.) The person feels better!
All the steps above are good things. They are things we should encourage people to do so that they avoid breaking their bodies irreparably or otherwise damaging their health and being less happy and healthy people. The problem is what comes next:
4.) The person sees someone with decades of chronic illness posting about things that remind them of when they were feeling bad.
5.) They remember the diet that helped them and assumes that it could help this person.
6.) They make posts or comments on social media to this effect and are supported by other people who have felt better in life when they made a conscious effort to live healthier.
The problem with this set of steps is it is conflating two different populations. Generally, healthy people who have had times of poor health and chronically ill people. Chronically ill people are people who have tried all the health interventions and stayed ill. Chronically ill people have underlying biological dysfunction that means no matter how healthily they eat they will not get better. This is something healthy people fail to understand because it runs contrary to the myth in a capitalist society that people are responsible for their circumstances.
The truth is, we aren't. Lots of things lie beyond people's control. That is why this myth needs to stop. Because a grain of truth is not the truth. Because the harm to chronically ill people everywhere is not worth a few extra likes on Instagram.
