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I have more sense than a team of Neurologists

Rufous McKinney

Senior Member
Messages
13,171
I have an idea for a new thread, only I'm not allowed to start any anytime soon. (because I need to write a few little notes to some people or it won't happen before Xmas)

Oh something like:

Perfect One liners, Rebuttals, and off the Cuff remarks so we can Tai Chi our Medical Appointments.

I really think we need to have several one liners, ready to go. Depending upon your style, these could include Sarcasm. Wit.

We need them for the various specialties and circumstances,

Example:
I needed one for the "cancellation" when the allergist immunologist told his office Assistant to call that one back, and tell her "I can't help you".


Combined the perfect one liner with the Asana- As I Walk Out Of Here

We can include Tai Chi maneuvers like-

As I Stroll Out of Here- Oh and Another thing

at this point, a second even more perfect one liner could be used as you turn and wave goodbye
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,938
I think we can expect this type of answer (like it or not...and of course we don't) until we're actually able to prove there is an "illness."
That wasn't the issue, he knew what CFS is and that its a physical condition, it was more that he had no clue how to advise a patient with it.
Imagine exercise and movement being like water, all living things need water.
Then one day you learn that there is a condition where water is contraindicated. Imagine trying to figure out how to work around what should be a universal constant.

This is the part that shows the nonsense most. Brains are complex, so we try to analogize them to our most advanced type of technology.

But, when you talk about hardware and software, you are talking about brain and mind. If the mind is immaterial, then FNDs can exist i.e. the software can malfunction without the hardware going wrong. But if the mind is material (a function of the brain) then it cannot malfunction without there being a brain problem. Therefore FND can't exist.
The funny thing is that this theory is what underpins his explanation of FND being a legitimate condition.
Humans being obsessed with easy answers is a curse.

We got a letter back from the neurologist pointing us to recoverynorway. I never told my wife.
Yikes on bikes.
Here is a quote from their homepage:
“At the CFS/ME centre they were shocked to see how ill I was.
This is preposterous. A disabling condition being disabling should go without saying if you have a brain.
Unless you are playing games with us...

“Today I could not be happier with my life”
Easy answer cure o_O


so the day arises that you do 6 things instead of 4 things and our little car crashes into the ditch.
This is a great analogy :woot:
 
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Marylib

Senior Member
Messages
1,125
FND seems to the the new wastebasket diagnosis. "Gee, I have no idea what it is and how to fix it so let's make up a name so they feel somehow validated for their suffering and then we can go play golf. " Same way they made up chronic fatigue syndrome.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,938
My plan is to insist on the real neurologist at the next appt (we will check in with you in a month) and explain that they need to dig deeper. I know from experience with many doctors of various disciplines that they won't be interested so i will ask for a referral to someone who can.
If they say well we are a world renowned institution i will say your not telling me anything new. I have more insight then you do.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,938
I was thinking about this compared to a rheumatologist appt i had last month, he also did not understand ME/CFS, his response was CFS is not a condition, it just means you have fatigue of unknown origin and we need to find the cause.
While incorrect i could work with that because his response was to do some testing and refer me to an endocrinologist for more testing.
 

Rufous McKinney

Senior Member
Messages
13,171
I'm proud of myself for saying wastebasket diagnosis on the spot during the appointment :D

you should be.

thats why we need more instant Rebuttal Cards. So we have at ready, proper response to the outrageous things people say to us, and most of the time, in typical human fashion, the proper rebuttal comes to you later, at least 20 minutes later.
 

lenora

Senior Member
Messages
4,857
Very, very few doctors can absolutely say that ME is a disease for a simple reason. We still don't have a biomarker....even after all these years. The best they can do is try to make symptoms easier; no guarantees here, but you are also not going to get very far unless you've been diagnosed.

I know, I know. It's crazy, but that's the way the system is set up at the moment AND it's not the fault of the doctor. What is his/her fault is the manner in which you are treated, that matters. If the person is empathetic and willing to try, then go for it.

Why is the biomarker so elusive? A very good question as it has been looked for not just since the 1970's but even before that. It's probably a combo of a few different things, one most certainly being viral....but what are the remaining ones and how are they going to be tracked? I know we all wish we had the answer, some of us have been waiting for a very, very long time. Yours, Lenora
 

Rufous McKinney

Senior Member
Messages
13,171
Why is the biomarker so elusive?

seems like all kinds of things could serve as a biomarker only they have to undertake a much huger evaluation of the same marker in every other version of viral/stress/fatigue diseases.

I never see the larger studies pursued, so nobody seems to fund them.
 

Mary

Moderator Resource
Messages
17,285
Location
Southern California
Why is the biomarker so elusive?
I think it's because almost no money has been allocated for ME/CFS research for the past 40 years. I saw a video the other day where someone was praising the NIH because ME/CFS funding had doubled within a few years - right - doubled from almost nothing, $8 million a year in 2016, to about $15 million, which is still almost nothing, compared to any other serious illness. This comes to about $7.50 per ME/CFS patient per year, based on a guestimate of a 2 million ME/CFS patient population in the U.S.

Funding for AIDS is in the thousands of dollars per patient per year and AIDS patients (except end-stage) have a much higher quality of life than ME/CFS patients.

MS funding is $126 million per year - this comes out to about $126 per MS patient per year, based on an estimated 1,000,000 MS patients in the U.S. So MS patients get about 17 times the funding ME/CFS patients do, and yet on the whole we are much more disabled. Plus there are at least twice as many of us.

I think the money (or lack thereof) speaks for itself in terms of finding a biomarker or anything meaningful.

I think the ridicule and scorn and disbelief heaped on ME/CFS has contributed greatly to the lack of funding. And almost no none wants to risk their research career on an illness which don't get no respect or money. Though I think Long Covid may be a wake-up call that hey, this invisible non-existent illness which can't touch me might be real after all, and those who hold the purse strings of federal funding might loosen them a bit, though we're still waiting.
 

Husband of

Senior Member
Messages
312
Though I think Long Covid may be a wake-up call that hey, this invisible non-existent illness which can't touch me might be real after all, and those who hold the purse strings of federal funding might loosen them a bit, though we're still waiting.
Except recently we've seen the psychosomatic argument being increasingly pushed in popular media, and ultimately it is this sort of media which is beloved by those holding the purse strings.