USA: Cleveland Clinic

Professional tennis players in the past got EBV and recovered, some haven't returned to previous health and had to retire.

https://www.theguardian.com/sport/2015/dec/24/robin-soderling-retires-tennis-glandular-fever

 

Anyone who claims to be an expert in M.E. with a treatment plan involving exercise every single day should be thanked politely for their time and bid good day.

 

Doctors should realize that their advice is, in effect, a form of medicine. I hope one day they will be held accountable for deteriorating pwME's health.

 

When I met with him, he explained his poorly-written advice. He specifically said not to exercise to the point it gives you PEM, but that his (unevidenced) lifestyle regimen would expand your energy envelope and allow you to "pace up" and gradually return to exercise. And that Frodo Baggins is president of the USA. I appreciate that he's not trying to kill me though. If this is effective, I will fly my pig to Cleveland to see him.

 

I can understand why clinicians end up falsely thinking that pacing up works. In the short term getting pacing right can for some at least help to avoid PEM, such that their average total activity levels are higher after getting pacing underway. So a clinician only seeing patients from a very selective sub group, ie those up to attending outpatient clinics, for a fairly short fixed term, is left believing they are on an escalator to recovery. Also I suspect, as was my experience, that when undergoing an intervention, the patient cuts out lots of other things to focus on the intervention, so though they are subjectively feeling better, any increase in overall activity levels may not be as large as it feels, and over time life will intervene as things put off because that were not so urgent become more pressing.

Given the variation in the course of ME some people experience spontaneous improvement, and I suspect getting pacing right such that PEM is minimised will for those create the best circumstances for that spontaneous improvement to happen. However here it can be dangerous if people believe this is happening because of pacing up and that they are on the magic escalator to recovery. My experience has been that any recovery is to a ceiling and that trying to push through that ceiling will trigger a relapse. It has also been my experience that with each subsequent relapse the ceiling for any future possible spontaneous recovery is lowered.

Until clinicians and researchers see ME and Long Covid in terms of total activity levels on longer timescales of years and even decades they will not begin to understand how to use and how not to use activity management.

 

They're trying to avoid saying GET by creating other ways of describing exactly that.

I watched an interviewed with Julie Rehmeyer and a PT describe it as a "strategy" and not a therapy, and then went on to describe GET

 

He thinks diet, supplements, and getting enough sleep is going to do it.

 

I would be reluctant to take advice from a doctor who makes emphatic, evidence-free assertions and orders tests with no clear justification.

Clinical judgement and experience have an important role - we don't want to replace doctors with AIs spitting out the organisational line - but a good doctor will tell you when s/he is deviating from what is well established in the research literature so you can make up your own mind.

If the doctor isn't aware of, or willing to tell you about, alternative perspectives, that suggests a degree of arrogance. Why would such a doctor be able to reflect reliably on the efficacy of his/her experimental or idiosyncratic recommendations?

 

Fibromyalgia vs. Chronic Fatigue: Which One Are You Dealing With?

“Both diagnoses are sometimes called into question as to not being ‘real’ diseases,” notes Dr. Abraham. “But that’s a misconception. Chronic pain and fatigue are real, and often debilitating, for those who have it.”

To get relief through medications or a variety of therapies, a proper diagnosis is crucial.

“Medical options are just the tip of the iceberg for both conditions, and the best treatments often don’t come in a capsule,” says Dr. Abraham. “But when we do use medications, we need to ensure that we are targeting pain without excess sedation.”

When it comes to non-pharmacological help, providers use a variety of tools, like counseling or support groups.

Physical activity is also crucial in staying healthy and helping treat both conditions. It’s important to stay active, but remember to always pace yourself. Set a structured activity program that avoids overexertion and reach out to your provider for help in putting together a list of physical activities you can do to boost your energy levels and help reduce symptoms.

“On a good day, a patient may decide to walk four miles, then require two to three days to recover,” says Dr. Abraham. “Try to walk one mile a day so you are active every day.”

Other helpful activities can include:

• Swimming.
• Biking.
• Yoga.

​

 

They conflate ME with “tired all the time,” or fatigue as a symptom. I’m sure they encounter people with generally unhealthy lifestyles who benefit from this, and then they assume they’ve solved ME or CFS

 

Frankly, the more terrifying explanation is that he probably has, and it made zero difference in his understanding of the condition. They truly can see whatever they want indefinitely, LC has shown that there is simply no limit to how delusional it can get. Reality just doesn't factor into their models, only the models are real to them, and they don't have to make any sense at all. It shows that clinical experience alone is essentially worthless, they can go through an entire career being completely wrong and never notice a damn thing.

It's all about social validation, not about what is true, it's about what feels true. Without precise physiology, medicine is pure politics, and frankly more of the local level than the national level. More like a church, really, but those are also all about politics anyway.

Even more likely is that he has seen many more pwME than he recognized, because clearly they can't tell the difference anyway. Likely has seen pwME or FM thinking they don't have it, and vice versa. Literally worse than pseudorandom, you could get better results by coin toss.