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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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"Women who survived coronavirus angry after persistent symptoms dismissed as ‘anxiety’ by doctors." Doesn't this sound familiar?

Abrin

Senior Member
Messages
329
I don't know .... it works on the same principle, appeals to the same fear of looking .... you know.... dumb ...

I think it should work quite well. At least it might aim him in the right direction ... which for some Drs might be a new, exciting profession ....

One of the lucky(?) things about my situation is that by growing up from my teens with a father who was one of the first people in my country to be diagnosed with ME/CFS and seeing how bad medical professionals treated him made me very aware that the medical professionals were essentially nothing more than 'gatekeepers' by the time my symptoms started going from mild to moderate in my 20s.

I had zero qualms about using psychological tricks when it came to dealing with doctors after spending years of seeing them play psychological tricks on my Dad as well as then trying to play the exact same kind of tricks on me.

Fair is fair, right?

Here is an example: In my twenties when my symptoms started their slow progression from moving from mild to moderate, I dealt with years of going from doctor to doctor who refused to even talk to me about a diagnosis because I had no real 'start date' for my symptoms. They said that there was zero evidence that people with ME/CFS could have children with ME/CFS and therefore there was no way that I could have ME/CFS and that the only logical conclusion one could come to is that it was 'all in my head' and I was 'an attention-seeker'

Of course, there would be zero medical studies about the phenomenon seeing there were hardly any studies looking into ME/CFS at that time at all. You can't find any evidence for something that you aren't even looking for because you are completely unwilling to look into the existence of it.

I am not going to lie though, at the time I did feel a metric ton of guilt over my tactics.

Now that I am almost 50 years old and it has become obvious that yes, people with ME/CFS can go on to have children with ME/CFS, I know that behaviour was more than justified.

No regrets. :)
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
You can't find any evidence for something that you aren't even looking for because you are completely unwilling to look into the existence of it.
Yeah. Old medical trick. Deny the existence, then discourage any research interest in examining the evidence, in order to avoid the inconvenient embarrassment of being proven wrong, wrong, wrong...


I'd like to think that the proportion of Drs who stoop to this kind of maneuvering is tiny, but the more I learn the more I doubt. I've witnessed the lengths that a few of them will go to in order to protect themselves, their reputations, their practices ....
I am not going to lie though, at the time I did feel a metric ton of guilt over my tactics.
Good Lord, I can't for the life of me imagine why. When you're a subordinated class, and patients definitely are in relation to Drs, you have to find ways to even the playing field.


Your only other choice is to obediently allow yourself to be drugged to death, and to quietly roll over and die.
No regrets. :)
I should hope not, and I'm relieved that you got over that.


I think you're brilliant !!!
 

Rufous McKinney

Senior Member
Messages
13,389
You can't find any evidence for something that you aren't even looking for because you are completely unwilling to look into the existence of it.

This is entirely and often, the heart of the matter.

Time and time again- nobody is looking for whats wrong, Instead, formulaic testing of the same old standard stuff occurs over and over- and Your Fine.

Our red blood cells are fine. They just can't deform. But why notice that?
 

Abrin

Senior Member
Messages
329
I'd like to think that the proportion of Drs who stoop to this kind of maneuvering is tiny, but the more I learn the more I doubt. I've witnessed the lengths that a few of them will go to in order to protect themselves, their reputations, their practices .


I'd definitely say that the majority of doctors that I have seen in my lifetime have some sort of God complex and will do anything to protect it, especially the older doctors but that being said I can never forget the time I went to see an infectious disease specialist and he told me, "I have no idea what is causing your symptoms right now with your body but I can tell you what you don't currently have wrong with you, if you'd like."

I just looked at him with my jaw almost on the floor and replied, "Did you just say you didn't know something?"

He looked back at me with a surprised smile and wink and responded, "When you are in a field as new as mine you don't get the luxury that other general practice doctors have to pretend that we actually know everything."

I think you're brilliant !!!

Awe, and I think you are wonderful! This comment totally made my day today. :)
 

Rufous McKinney

Senior Member
Messages
13,389
Of course, there would be zero medical studies about the phenomenon seeing there were hardly any studies looking into ME/CFS at that time at all. You can't find any evidence for something that you aren't even looking for because you are completely unwilling to look into the existence of it.

We may soon or eventually- learn more about family trends and genetics, as that is being looked at...in a big study- someone is doing for us, hooray.
 

Rufous McKinney

Senior Member
Messages
13,389
We may soon or eventually- learn more about family trends and genetics, as that is being looked at...in a big study- someone is doing for us, hooray.

I made a brief attempt to locate that Research announcement but did not succeed in my Googling.

Maybe its OMF sponsored.
 

Zebra

Senior Member
Messages
869
Location
Northern California
Hello to those who have posted above.

I was checking the status of my library account today (yes, I am super old-school), and I was excited to see I'm next on the wait
list to read the following book. I wanted to share here in case it was of interest to others.

It's called: The Lady's Handbook for Her Mysterious Illness: a Memoir

I captured additional book info as a screenshot. I think the first line of the book's summary is directly relevant to some of the discussion above.

Screenshot_20200804-133903.png
 
Messages
37
Location
Atlanta, GA
Hello to those who have posted above.

I was checking the status of my library account today (yes, I am super old-school), and I was excited to see I'm next on the wait
list to read the following book. I wanted to share here in case it was of interest to others.

It's called: The Lady's Handbook for Her Mysterious Illness: a Memoir

I captured additional book info as a screenshot. I think the first line of the book's summary is directly relevant to some of the discussion above.

View attachment 38627
I am reading this book right now! My dear friend has been sick with a mysterious illness for 2 years, and was just diagnosed with Lyme disease. Also during past 2 years had osteomyelitis and has had multiple surgeries related to that. She read the book and found it a relevant read, so far I’m finding the same.
 

Annikki

Senior Member
Messages
146
I totally couldn't agree with you more if I'd said all that myself. Which of course, like many other women, I sort of have.

Probably about a year ago I posted a thread here on this topic with 5 or 6 articles on the endemic medical biases against women. It didn't stir much interest. I'm going to try to find it, and if you don't mind, I'd like to post a link to it here in your thread. Would that be OK?

What's really dispiriting is that women themselves often refuse to admit to the biases that have shaped their mismanaged medical care.

And the Dr would tell you that " .... that's all in your head ...." .....

The happy thought expressed by many members here that the massive number of COVID cases would turn around the medical community's opinion on the persistent, deeply debilitating, life-changing after-effects of this virus, so similar to ME, wa, and is, a pipe-dream.

Drs are fully equipped, ready, and more than willing to dismiss another 2-3 million patients as head cases. Their only other option would be to admit their profound ignorance of this illness and all others like it, and to do the research, put in the time and the admittedly daunting effort to learn something.

I'll repeat two things that I've said elsewhere in these threads, tho I cant remember exactly where or when:
  • In a questionnaire mailed out to Drs around the country with the promise of anonymity, one of the questions was: Did you ever cheat while in medical school? Fully 73% admitted that yes, they had. The details of that cheating, like the regularity, the extent and the type, weren't requested by the questionnaire nor received ...
  • What do you call the guy who graduates dead last in his class at Harvard Medical School?...........Doctor :grumpy: :grumpy::wide-eyed::wide-eyed::headslap:
Post whatever you like here. Thanks for your opinions and support, it is much appreciated.
 

Annikki

Senior Member
Messages
146
Here are studies about bias in medicine. These ought to serve to uproot the seeds of doubt sown here:
https://papers.ssrn.com/sol3/papers.cfm?abstract_id=383803

"Misdiagnosed Heart Attacks in Women"
https://www.padbergcorrigan.com/misdiagnosed-heart-attacks-women/


A book by Maya Dusenbery called, "Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick" cites many studies regarding the healthcare system's dismissal of female symptoms and acoounts of pain. Dusenbery was interviewed on National Public Radio. You can listen to Terry Gross' interview with the author here:
https://www.npr.org/sections/health...ne-dismisses-and-misdiagnoses-womens-symptoms

Other books which deal with this subject include:
Ask Me About My Uterus, by Abby Norman

All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache, by Paula Kamen

Complaints & Disorders, The Sexual Politics of Sickness
by Barbara Ehrenreich and Deirdre English

The Hidden Malpractice: How American Medicine Mistreats Women
by Gena Corea

Racial bias is also rampant in the healthcare system:
White Doctors In Training Believe Some Disturbing Stuff About Black Patients
https://www.huffpost.com/entry/doctors-black-patients-feel-less-pain_n_57055d56e4b0a506064dfcdb