Image is a screenshot from the study shared for educational purposes and commentary.
Link to study
Trigger warning: abuse
TLDR Once again Graduated exercise has been clinically proven to harm ME patients. This time children ages 8-17.
In this post I will be using the abbreviation PEM/PESE interchangeably. PEM/PESE is a physiological response some people with energy limiting chronic illnesses suffer from.
PEM stands for Post Exertional Malaise
PESE stands for Post Exertional Symptom Exasperation. IMO PESE is a more accurate term as "malaise " is not the only post exertional symptom suffers endure.
Please look up 2 day invasive CPET tests for objective data verifying that these disease states are not just in the patient's heads/beliefs- they are physiological manifestations of disease . Much like hypo/hyperglycemia in diabetes is not a psychological symptom and patients need medical treatments .
Unfortunately, ME/CFS patients do not get medical treatments and are just left to suffer.
I also want to point out that this study evaluated GET and activity management but have mislabeled activity management as "pacing' These are not the same thing. Like most of these BS studies the scientists do not even understand the basic mechanisms of the illness they are studying and often mis- represent what they are actually studying.
GET stands for Graduated Exercise Therapy. It essentially involves people gradually increasing their activity level over time.
Activity Management is basically "GET lite" and is NOT pacing. This difference is important.
GET for people who suffer with PEM is malpractice. It is akin to telling someone with a peanut or other serious allergies/ food intolerances to slowly increase their consumption of the triggering food and if they have any adverse reactions, it is because of their "limiting beliefs" and they need to "push through" (I am not talking about allergy immunotherapy which is done under close medical supervision)
Exercise therapy has killed ME patients and often times leaves them with permanent damage and decrease in baseline functionality.
Again worldwide ME/CFS patients get no medical treatments for their disease .Our symptoms are minimized and most of us are gaslit to the point that we cannot trust our own bodies and experiences.
Exertion in severely ill patients can be brushing your teeth or sitting up to eat a meal.These activities healthy folks take for granted can and do harm us, sometimes permanently.
Exercise is not the only exertion that harms ME patients .Cognitive exertion, emotional exertion (both "negative" emotions and "positive" emotions) can also cause the same type of physical damage.
A recent study showed that ME patients when given simple cognitive tasks hit the anaerobic threshold. I am not going to get into this and why it's important but it is. It's the equivalent of a professional marathoner/tri athlete "hitting the wall" Anaerobic energy is not sustainable.
This is why CBT (cognitive behavioral therapy)is also harmful in patients with PEM.
This has been known for decades yet GET and CBT studies are easily funded often taking up entire funding budgets(which are ridiculously low in terms of the number of people with the disease and disease burden) yet biomedical research is not funded.
This study once again proved that these "treatments " cause harm(at least this time the researchers didn't hide and misrepresent the data like in the PACE trial). The children in the study, at least some of them are likely permanently damaged.
This study showed significant harm and baseline decrease in the children in the study. GET has worse outcomes but "activity management" also caused significant harms.
This is consistent to my own experiences. I got ME as a child . In middle school I decided to join the track and field team. I though this would stop the emotional abuse I was getting from both my parents (calling me lazy/unmotivated/worthless etc) and doctors.
I also had undiagnosed/untreated exercise induced asthma at the time- so that was fun . Though I had asthma symptoms for years my parents said I was just "faking it" to be like my sister. They believed her very mild asthma, but mine was just made up I guess. Because, you know, health conditions/diseases don't run in families or anything.
This is classic golden child/scapegoat dynamic in abusive families.
I lasted a season of track and unfortunately the abuse did not stop (I did not realize at the time this was abuse and I believed for decades I was in fact a worthless human being). I also objectively got worse during the season. I did the 100 meter 200 meter dash and long jump. Over time my time doing the running events increased meaning it took me longer to complete these tasks. My long jump also decreased by 10-12 inches over time.
Healthy people get better after months of training, not worse.
Objective data that this exercise was indeed making me worse.
No one believed me. Not doctors, not my parents. My coaches did believe something was wrong medically and suggested I get medical evaluations because they saw I worked just as hard as the other students yet my stats kept declining. My parents refused to seek medical treatment.
FFS can we stop abusing ME patients especially children and get actual treatments?
