I Have ME/CFS or Long COVID; Where do I go from here? Blog: Workwell

[Sly Saint]

I Have ME/CFS or Long COVID; Where do I go from here?

Living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or long COVID can present significant challenges that affect physical and cognitive well-being.

These debilitating conditions can leave people unable to function normally due to fatigue, impaired cognition, disrupted sleep, and increased pain.

ME/CFS is characterized by a unique condition called post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE). Even minor physical or mental exertion can worsen symptoms and decrease overall functioning.

A subset of people with Long COVID also experience PEM/PESE.

Post-viral fatigue is part of the normal healing process after an acute viral infection. Some people with COVID recover quickly, whereas others take longer, but eventually, they recover. Others may not recover and develop ME/CFS.

We distinguish between post-viral fatigue and delayed worsening of symptoms after exertion (e.g., PEM/PESE). Post-viral fatigue typically occurs in direct response to exertion, leading to increasingly punishing fatigue with additional effort. In PEM/PESE, there is a delay in exertional crashes, sometimes up to 24-48 hours later. This delay makes it easy to overshoot activities and experience a crash characterized by worsening symptoms.

Luckily, with the correct knowledge and support, you can take steps to understand PEM/PESE and improve your quality of life.

This blog explores practical strategies for managing ME/CFS and long COVID.

https://workwellfoundation.org/i-have-me-cfs-or-long-covid-where-do-i-go-from-here/

 

[Trish]

Bad start illustrating with a hand glued to forehead while sitting at computer image.
The rest is fine, it describes PEM accurately and pacing briefly. The main recommendation is having a 2 day CPET so clinicians are better informed about what to recommend for managing, and to help with disablity benefit application. This is clearly an article geared to advertising what the Workwell clinic does including that they do 2 day CPET.

 

[DokaGirl]

Bad start illustrating with a hand glued to forehead while sitting at computer image.
The rest is fine, it describes PEM accurately and pacing briefly. The main recommendation is having a 2 day CPET so clinicians are better informed about what to recommend for managing, and to help with disablity benefit application. This is clearly an article geared to advertising what the Workwell clinic does including that they do 2 day CPET.

Agreed.

Setting aside the advertisement for this group, the educate oneself advice is very important. PwME need to know more about their disease, in order that they can at least try to impart the info to their doctor(s).

Another stage in the battle is getting doctors to understand, and follow through as an advocate for their patients with ME. That is at the very least, connecting the dots well enough to fill out disability forms for their patients with ME.

There are still gaps in this basic process, where physicians fail to understand the import of these types of test results, and drop the ball. They need to know what the test results really mean for patients' function and employability, and follow through with knowledgeable completion of disability forms.

Pie in the sky here, but it would be wonderful if the 2 day CPET was incorporated into our regular health care systems.

And, if physicians were educated on what the results mean for patients, instead of patients having to seek out, and pay for travel and specialized testing fees, and then work at educating their doctors about the results, in order that their docs can do something (anything!) for them.