Chronic Fatigue Syndrome: The Need to Raise Awareness

[SWAlexander]

Excerpt:

Most doctors and people with chronic fatigue syndrome don't know the name of this syndrome or anything else about it. The CDC estimates that 90% of people with ME/CFS aren't diagnosed by a health care professional.

“Of all the people who completed the survey, only 46% had ever heard about ME/CFS. Even among those who do, only a minority understood there's a medical reason for their symptoms. Patients and their families aren't aware that it exists, and that they can get help and seek care from their primary care physicians,” Unger says.

A 2015 report from the Institute of Medicine found that 29% of people with ME/CFS took more than 5 years to get a diagnosis from a health care professional. One hurdle is that doctors may not know much about the illness: Less than one third of medical schools include ME/CFS in their curriculum.
More: https://www.webmd.com/chronic-fatigue-syndrome/features/chronic-fatigue-study

 

[Cinders66]

I’m from the U.K where we have Chronic Fatigue Syndrome as A catch all for everything fatigue up until recently and some groups saying there’s a 1-2% prevalence, so if anything There’s too many diagnosed. . I’m intrigued how in the US, when even patients who have been fobbed off now have google and apps etc that can offer possible diagnosis Based on symptom, how there are 90% with a disabling illness, apparently clueless as to the fact that they have it? And unable to pursue this? We would expect that false diagnosis such as depression would lead to poor management and worsening of severity so how does this not then lead to a diagnosis or attempted diagnosis? Are drs Really unaware of it ? EVery dr I have met is very aware of Chronic Fatigue Syndrome, full of negative attitudes usually sure, but very aware. And when it says that percent have no idea a medical reason could be behind their symptoms It doesn’t make sense! ME usually presents post viral, in previously well people who over night get a litany of distressing sickenss symptoms, they don’t think there is a medical cause? All those with LC do! What else would it be? Are the CDC really on point here Or are they conflating ME with Chronic fatigue and minismising what actually has imo a classic set of symptoms ?

 

[wabi-sabi]

I think the confusion over people not knowing whether they have ME/CFS or not is multifaceted. For the first couple of years I was sick, I was very mild. My symptoms were so strange to me that I couldn't figure out what was going on, just that something was wrong. It didn't match any disease I'd ever heard of, so I couldn't wrap my mind around it. When that's combined with the doctor not knowing what's going on, or worse giving you a story along the lines of "Maybe you're just stressed/burnout/depressed/anxious..." you do start to doubt your own sanity and perception of your body.

The other issue is that fatigue, overwork, and burnout (and yes, I know there's more to it than fatigue) and the "just work harder and get over it" mentality are so prevalent in our culture that even healthy people are harmed by them. Take a quick google on how to overcome fatigue due to nearly any condition from ME/CFS, to rheumatoid arthritis, to MS, to burnout at work and see how any fatiguing illness is meant to be cured by working harder. In a culture that assumes any weakness/illness is laziness and can be cured by more work, it does genuinely make it difficult to sort out what fatigue and illness really are. We are all so conditioned to ignore our symptoms and push through, no matter what illness we have, that it is hard to break free of that mindset and recognize illness for what it is. It's a disease, not a character flaw or a lack of grit. That sort of culture is so cruel that even healthy people feel sick and really sick people get lost in the shuffle of "just work harder".

 

[Rufous McKinney]

That sort of culture is so cruel that even healthy people feel sick and really sick people get lost in the shuffle of "just work harder".

well said.....I was the hardest working person in our core group.

And here I am....not pretty any longer. If I'd just been able to stop working when it was only an inconvenience, but I pushed, I couldn't retire yet....

so the lack of real support for ME CFS plays a real role in the illness progressing to worsening states.

Now I am mad!

 

[Rufous McKinney]

One hurdle is that doctors may not know much about the illness: Less than one third of medical schools include ME/CFS in their curriculum.

out there in the social media world, there seem to be some very smart people who are quite active. (of course thats true here)

When I look at what they discuss, ME CFS is but one aspect of this SWIRL thats probably all connected somehow, maybe all triggered by the combination of genetic preconditions, viral/pathogen, and environ toxins and triggers..

Again, the CAUSES remain unclear, but the resulting symptoms cluster around a group of conditions which include:

Mast Cell Activation Disorder

Connective Tissue/Genetics/hEDS and those issues

OI/POTS

They draw this diagram and connects all this stuff up together. It seems to make alot of sense. If I can find that sort of overview type thing, I'll try to post it.

 

[Rufous McKinney]

this single lecture on tethered cord- leads one to this suite of related issues- ME CFS is not about tired.

Its not about fatigue. Its about the whole body system is not working right, and I'm Tired is just the easiest thing to utter.

 

[Rufous McKinney]

sorry, clearly Im going off on tangents: as the core of the problem is the mistake of focusing on chronically fatigued.

When will the world catch up with the actual tremendous progress being made in teasing thru these bizarre issues.

(that if your spinal cord is simply attached oddly, and your tissue is slightly anomalous, you end up with a horrific lifetime sentence).

So this entire discussion on Jen Brea's thread- is about how the tethered cord is often involved.

https://twitter.com/i/web/status/1275884918493437952

I guess I"m arguing we need to re-assess the basic Problem Statement.