1974 Chronic Fatigue Syndrome

[SWAlexander]

Nothing has changed since.

Excerpt: By 1987, Kaiser had been to 212 different experts. Her eyesight was fading and she was having a dozen minor seizures every day. She often lacked the strength to stand up. Her concentration and memory had so deteriorated that she couldn't get through a TV show. Her IQ was down by 22 points. Still, because she lacked a known disease, no one could quite accept that she was sick. Her weary family started pulling away, and doctors hinted that she might be better off in a mental institution.
Article: https://www.newsweek.com/chronic-fatigue-syndrome-205712

 

[Nord Wolf]

Sadly and incredibly so... a very good write up though by Newsweek... rather surprising actually.

 

[hapl808]

Sadly and incredibly so... a very good write up though by Newsweek... rather surprising actually.

Yeah, this is what gives me a bit of a cynical outlook. Reading about the 1934 Los Angeles outbreak, or Incline Village, or any realistic characterizations of ME/CFS through the last 100 years. Science has advanced in remarkable ways, but our knowledge of ME/CFS is still woefully lacking.

A good doctor in 1934 (you should rest and don't overexert yourself) probably could do more than a mediocre doctor in 2023 (here's some stimulants to push through your day and try some PT).

 

[Nord Wolf]

A good doctor in 1934 (you should rest and don't overexert yourself) probably could do more than a mediocre doctor in 2023 (here's some stimulants to push through your day and try some PT).

In ancient Chinese Medicine, there is a very important theory and saying:

“If a doctor can make sure you are always healthy, and before you get sick he has already treated the illness, this type of doctor is the best;

If the doctor cannot tell before you get sick, but can heal you when you get sick, this is the middle level doctor;

If the doctor can only treat you when you already have a terrible disease, this is the worst type of doctor.”

And then of course today we have an even worse type of doctor, the sort that doesn’t even bother treating you when you have a terrible disease, like ME/CFS, because they either are completely inept, or they just can't be bothered. After all, the medical field today isn't about health, but about money, ego, and fame.
don't get me started...

 

[BrightCandle]

A 2023 doctor will turn a mild disease into a severe one in a matter of weeks and then completely wash their hands with you and stop taking your calls.

They are far worse than the Chinese proverb and the majority of doctors seem to meet this new modern standard of care far better than those 3.

 

[hapl808]

And then of course today we have an even worse type of doctor, the sort that doesn’t even bother treating you when you have a terrible disease, like ME/CFS, because they either are completely inept, or they just can't be bothered. After all, the medical field today isn't about health, but about money, ego, and fame.
don't get me started...

So you're saying we've invented an entirely new type of doctor! Modern medicine never ceases to amaze. :/

 

[lenora]

I can only say that after 'The Yuppie Flu' cover and story either before or after, we were at least owed this article. Thanks to those who put in the effort. Interesting about HHV-6 as most babies have what is known as roseola. I hadn't heard it implicated (if that's the word) in this before. Just one more question, but still it's interesting, isn't it? Yours, Lenora

 

[Wayne]

Just to mention, the article was published in 1990. -- I thought it was a very good historical account of some of the early years of CFS, and has good insights into how we've arrived at where we're at today.

I was struck by one of the comparisons they noted between people with depression, and people with CFS.

A depressed person can handle a brief interruption when trying to memorize something. CFS patients' performance suffers six times as much from the interruption.​

Anybody else have very difficult time with even the most minor of interruptions?

 

[Rufous McKinney]

Anybody else have very difficult time with even the most minor of interruptions?

yes totally and especially during PEM

 

[Rufous McKinney]

I have often felt that a lot of our problem resides in this part of the brain that might look alot like the image below:

 

[heapsreal]

My faith in modern health care system took a massive hit. Chronic severe headaches and vomiting for 6 days, in and our of hospital twice in that time period. I've been out for 6 days and still feel crap, not as bad as hospital but noise, light sensitive etc are a real struggle and keeping food down is hard. It's up there with the worst I've felt, maybe the worst.

What did I learn from the wonderful free health care system of Australia, 2/5ths of bugger all. Each dr has there own option. Some don't give a crap others atleast try something and everything is in slow motion.

Tuesday I finally got an mri but result not until the next day. All they were offering were anti nausea drugs than 2 panadol and 2 nurofen, which I'd bring up 20mins later with some blood. I said I'm going home now. The general physician came in an understood and said we have to encourage you to stay but, I understand why. I signed myself out and the dr was going to ring me with mri detail the next day.

So basically they said it could be a number of things, post herpetic neuralgia flare up, migraine, along with medication changes cross tappering lyrica with Toprimate for headaches and stopping a low dose zoloft. And every drs favourite, probably opiate induce rebound headaches. MRI show my pituitary is pushed up against the bony structure in the skull which could cause pain and raise intercrainial pressure.

So I need to find a neurologist.
So everything they mentioned could be causing issue or might not be. Finding a neurologist can be hard and long waits, maybe 12-18months. Don't let anyone fool you Australia has some great healthcare system, relative are sneaking medications into pts like mylanta and basics.

That's my whinge about our so called wonderfully health system
Not even cfs related

 

[lenora]

Sorry @heapsreal....it couldn't have been pleasant. I'm just going through my own migraine trials for the past 2 years.

I saw the neurologist last week (new one, my fave died suddenly and sadly). She says that most headaches are never diagnosed simply b/c they can't. I did have a test for carotid problems (which is realistic since I have a carotid stent on the other side). Problem with the headaches being they could be caused by allergies (sinusitis or sinus), tumor (extremely unlikely she said), carotid and a host of other symptoms. So it's very difficult to tell.

What a neurologist does do is rule out illnesses that can be diagnosed...and it takes more than one trip for sure. My old neurologist ruled out many things over the years and I miss his wise words of advice.

It's generally the same anywhere if you're looking for a top specialist, although 6-12 mos. is more typical in the U.S. Ask to be put on the cancellation list.

We usually get our MRI results the next day also....same with blood tests. Things usually come via the Patient Portal and if it's nothing serious the Dr. gets back to us when he can.

At the moment I understand that COVID has really upset the medical system. First, appointments had to be cancelled b/c of COVID then they're later than usual b/c of the post-COVID crush.

I have nothing to offer to you. I find my headaches stop when I'm lying down. She examined me thoroughly and thought if anything the headaches could be allergy born. Reasons for headaches include sinus, (can go from back to the eye area), you'll know if you have sinusitis (infection) and an antibiotic can be prescribed by your GP, also fungus and yeasts can cause sinus problems. Migraines....well, they're very hard to diagnose properly. I've noticed that mine are worse when I'm cooped up in the house during the winter. Not as bad when I'm outside in the spring, summer and autumn. Well, they exist, but they aren't as bad.

We've had vents cleaned, house is super-clean and it's anyone's guess as to the cause. No pets....just one more thing. I'd rather be home than in the hospital....and nothing is the same as it used to be. Pity. I have found that the older I am, the more problems emerge. No magic answers. Sorry. Yours, Lenora