Why does barely anyone know that CFS exists?

[lint7]

If there are tens of millions of people around the world with CFS, why is there almost no public awareness of it? And why is no one working to raise awareness?

 

[SNT Gatchaman]

Human nature I'd suggest. The public doesn't want to be aware — it's too scary to think that anyone can be instantly disabled for life, with no warning.

We've seen a lot of the antisocial mindset in the world over the last few years, in particular, coupled with an ability to suppress reality. It's easy to forget many people just don't think like the rest of us and have a range of consideration extending only as far as themselves or their immediate family.

We're also generally terrible at judging risk and tolerant of small incremental change (see global warming). Particularly if we have the pre-conceived idea that it won't affect us, e.g. no pre-existing conditions (as if that's even true).

A few hundred people dying on the roads in your area, distributed over a year is "fine and no cause for concern, certainly nothing to mandate that we take the train" etc. But if a couple of planes drop out of the sky there's a proper investigation.

Even so, with Long Covid, parties with interests vested in the status quo are not exactly embracing it as a fact. It's going to be expensive for them. (Un)fortunately it can only be denied for so long and now that economies are facing inflation and other indicators of major stress due to reduced worker supply etc, awareness will follow.

 

[Rufous McKinney]

There is zip public aware ness of ME but CFS has some general awareness I have found.

The issue then becomes its "something somebody got or had" and they "got over it".

Never getting over it never seems to be the story anyone tells you.

I try not to use the term, on account of that.

 

[bensmith]

Wel said, and there is also a concerted effort by insurance to not pay, and for doctors/medicine to not acknowledge. Because it threatens their, uh, authority i guess. For a shorthand. Also for governments to not acknowledge, because it would then construct a moral imperative to assist. They likely dont want to any, so easier to ignore.

Change comes from the barrel of a gun. Even not literally, force is also the only way to achieve equality. And we not capable to employ force of any real kind. Even in terms of non violence, its still force.

 

[milkyway]

I would love to know that myself, and in my experience, it's the lack of any concrete proof that you can capture on an MRI, EEG, etc. It basically comes down to a diagnosis of exclusion, which is extremely disheartening. It puts the burden of proof back on an already ill patient, and it almost feels like you have to go overboard in an already weakened state to prove you're as limited for some medical reason, not all in the mind. I know it sounds awful, but I envy some cancer patients or heart patients because they have something definitive. Granted, some of what they go through is way worse than what I have, but it just sucks being invisibly limited. I have really struggled with this in the last few weeks. I hate the dependency this has put on me. I was such an independent person before all this, and now I feel like I have to be at others' mercy and can never have my own say. Understandably, if you are in someone else's car, it's only fair to go by their rules, wants, etc. But it sucks so bad to want to be in my own car, doing my own thing. I didn't want to be a child for the rest of my life, asking someone else for permission or having to tag along.

This. Sucks. So. Badly. It's truly a no-win situation. Darned if you do, darned if you don't.

 

[Abrin]

It is pretty much the same reason that no one knows what encephalitic lethargica is either.

It is easier to sweep helpless people under the rug when there is no cure for them than it is to have to publicly admit that Western medicine doesn't know everything.

Edited to add: As for awareness, lots of people have tried to raise awareness. The problem is that no one is listening.

 

[ruben]

Something I have mentioned on here before is this. In my experience of this condition too much emphasis is put on the fatigue aspect. If someone for example had a bout of sickness and diarrhoea, yes they would be lying around at home. But they wouldn't describe their predicament primarily as one of tiredness. I feel every day bloated, nauseous, migraine, yes and tired.

 

[BrightCandle]

In the UK at least there has been persistent press efforts to name it Chronic Fatigue Syndrome and then give it other names like Yuppie Flu. People know those terms but they believe its a mental illness because that is what the bulk of the press has been telling them for about 80 years. Its going to take a lot of press to turn that around in the general populace and with the doctors still largely considering it mental illness too there is a mighty long way to go. The hope is NICE's new guidelines turn the corner with doctors, but you see the same dismissal of long covid as you do CFS all over the UK, people just don't believe its anything but locked down indoors depression rather than something the virus did. "The symptoms are too vague" is a common complaint.

Its common to know this thing exists, its definitely not common to know its a physiological disease and its much rarer to know it can't be treated. But then the entire place which could be educating them on it has been calling it Yuppie Flu and other derogatory terms for years and is still casting dispersion on those that get it from long covid. To know this is real would be a conspiracy theory position in the UK, because there is a conspiracy from the medical institutions and the media to dismiss the condition.

 

[Hip]

If there are tens of millions of people around the world with CFS, why is there almost no public awareness of it? And why is no one working to raise awareness?

I think in a thread from years ago, someone said that in the US, ME/CFS is barely mentioned in the newspapers.

But in the UK, there are regular articles about ME/CFS. Sometimes those articles are supportive and understanding, other times they have been derisory (as in the 1980s, when the newspapers called young urban profession high flyers (yuppies) who were sudden hit with ME/CFS as having the "yuppie flu"). In either case, the disease is lodged into the public consciousness to a degree because of these articles.

Looking at the Guardian newspaper for example, their collection of ME/CFS articles indicates they publish around 3 to 6 articles per year.

So the public consciousness of ME/CFS may differ between the US and the UK.

 

[Alvin2]

Very little media coverage.

Same with climate change, the amount of coverage it gets is piddly compared to its level of urgency. We have 9 years left till 1.5ºC. In order to not fall off the cliff we need to scale renewables faster than the New Deal.

And much of the coverage it does get is skepticism and deniers.

 

[Tammy]

When HIV/AIDS came on to the scene, it was a very visible disease (you could tell the person was deathly ill and it registered in your brain that yes this person is truly ill............I can see that) and people were dying from it in large numbers. OF course that is going to get big time media attention. There was also a test to prove you had the virus that was making you ill. Diagnosis was cut and dry for the most part.

With CFS/ME..............we don't have that same equation.

 

[lenora]

No, we don't have the same equation. We're still looking, however it's odd that you feel there is little public awareness today. I have found just the opposite...more awareness, doctors have heard of it, all nurses it seems, neighbors, and I definitely send my family & friends short educating articles about the illness.

Bear in mind that I've been around since the AIDS epidemic was a problem. We've come a long way in comparison to where we were then.

A name that is both understandable and medical is needed in both the UK and the US.

People like Jennifer Brea and her short film UNREST have brought this to the public's eye. She has tried very hard and in the end she had CCI. I also have other neurological conditions, but also have CFS/ME/FM plus a number of age related problems at present. There have been others who have made films, I can't remember the names of them....but they tried and it's important for us to remember that fact. I thank them.

Others have devoted efforts to making telephone calls and doing Newsletters out of our homes (in the early days). So things change....just because one comes along at a certain time doesn't mean that changes haven't occurred. I just wish we could get a biomarker....and researchers are hard at work on it. Things will then be easier.

Many don't realize it, but MS was looked at as a pscychosomatic illness in its days before lesions could actually be identified. Get your pennies, nickels and dimes in for research....it's needed. Yours, Lenora.

 

[Tammy]

No, we don't have the same equation. We're still looking, however it's odd that you feel there is little public awareness today. I have found just the opposite...more awareness, doctors have heard of it, all nurses it seems, neighbors, and I definitely send my family & friends short educating articles about the illness.

I agree that there is definitely more public awareness today. I just think it should be just as much as HIV/AIDS got and my thoughts were describing why I thought that wasn't the case.

 

[lenora]

Yes, people with AIDS were obviously very ill looking patients and it was easy to pick them out of a crowd. We don't have that look about us, for the most part at least.

Once we're dressed we look like a general form of the population as a whole. However, people who live with us can determine that something is very, very wrong and usually accept our word as truth. A well trained PT will do the same. (I realize there are exceptions and I'm very sorry for those of you who experience this nonsense.) Like your sign-off, we'll ride the wave where it takes us. I hope that won't be long in coming. Yours, Lenora.

 

[Rufous McKinney]

In my experience of this condition too much emphasis is put on the fatigue aspect. If someone for example had a bout of sickness and diarrhoea, yes they would be lying around at home. But they wouldn't describe their predicament primarily as one of tiredness. I feel every day bloated, nauseous, migraine, yes and tired.

agree this is an aspect of the whole mess.

Its like we are too tired to articulate what we are actually experiencing so just sort of utter...TIRED....is about all that gets uttered.

I am just fading out midsentence here lately. Its freaky scary.

And yes its :

nauseated alot
hours of gut issues on bad days which occur every few days
erratic blood sugar
outside where it seems nice, something is worse- tied to vision and neurology- woozy and even more ill, just sitting under a tree.


SPENT

Lately that term seems more concise.

Nothing much left. Spent it all.

 

[Woof!]

I have really struggled with this in the last few weeks. I hate the dependency this has put on me. I was such an independent person before all this, and now I feel like I have to be at others' mercy and can never have my own say.....This. Sucks. So. Badly. It's truly a no-win situation. Darned if you do, darned if you don't.

Here's another 'darned if you do / darned if you don't,' and it stems from the general lack of understanding people have of ME/CFS:

When I'm crashing - be it a physical crash when my arms and legs don't want to work, or my head & neck are too painful to do anything but pray the meds kick in...or a mental crash when it's a struggle to do much more than half-watch TV without any inkling of what I'm watching - I wish I was able-bodied and able-minded enough to be out there helping this world to be a better place. It needs more people who care!!

When I have my best days (admittedly usually on an adrenaline high that I will pay for later on ), I look and sound normal and upbeat, and I try to do things that DO make the world a better place despite the fact that my actions can be used against me by anyone seeing me function in the moment without the understanding that this very functionality is a hit-or-miss situation.

For me, it's the wanting to be of help to the world on my good days and having it potentially used against me that is the gut-punch. People close to me get it. I need help dealing with the people that don't (and quite possibly myself, since this is a very real struggle and ironically one that a person who was lazy and felt entitled would never have...).

 

[hapl808]

People close to me get it.

I guess I'm lucky that a few people do understand, but my more extended network of friends and acquaintances can't comprehend that at all. Unsurprisingly I've lost most of them over the years.

 

[Rufous McKinney]

I wish I was able-bodied and able-minded enough to be out there helping this world to be a better place. It needs more people who care!!

I'm struggling with some of this because I was simply an activist my whole life.

You do something, you act. You don't just stand around wringing your hands. So after decades of doing those types of things, I"m mostly out of business now.

I have struggled to accept it.

 

[Wishful]

Something I have mentioned on here before is this. In my experience of this condition too much emphasis is put on the fatigue aspect.

I agree that this is a key aspect. I think there's a general belief that being non-energetic is somehow shameful. The general public looks down on 'lazy' people and tries to dismiss them existence. Since we can't yet prove a physical cause, we get lumped in with those 'undesirables'. Proving a physical cause would be very helpful.

 

[Swim15]

In addition to a lot of these points, its very difficult to raise awareness about a disease that is incredibly individual. When there is one endpoint diagnosis (CFS) but what makes it better or worse varies to an extreme degree from individual to individual, it makes it hard for people or doctors to approach, treat, explain, etc

No one can easily answer in a sentence or two...
"what's it caused by?"
"what makes it better?"
"What makes it worse?"
"Are there common lab findings?"
etc

Unfortunately it won't be until a new age of medicine where we can instantly measure hundreds of biomarkers in a given individual (quantum computing would be necessary) that we will really understand the multitude of causes and contributing factors and how they come together to a single diagnosis