How To Find A Doctor When You Have ME/CFS, Because The Process Can Be Challenging

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“The most successful patients will need to radically re-orient their worldview, quickly accepting the fact that their world has been fundamentally changed,” notes Prior. “Improvement requires lengthy, profound periods of rest. It requires surrounding yourself with people who love you and who will aid in your recovery, who will deliver groceries to you, or who will spend time with you at home when you’re too sick to go out. It requires incredible amounts of patience, and an abiding faith, that despite sometimes temporary setbacks, that a longer-term improvement can be possible.”
https://www.bustle.com/p/how-to-fin...cause-the-process-can-be-challenging-15536013
 
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@nyanko_the_sane That is a really good article. Thanks for posting!

Here is another quote
According to a 2017 study published in the Journal of Health Psychology, medical bias and misleading information about ME/CFS can lead to ineffective treatments, misdiagnosis, invalidation, gaslighting, and an overall demeaning experience for ME/CFS patients seeking medical help.

Wonderful! I recommend every sufferer and caregiver to read this!

There is even a link that lists DRs.

again from the posted link to the article
The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society also offers a CFS/ME Physician and Clinic database. Online support groups, and advocacy groups like The Solve ME/CFS Initiative, and the ME Action Network, may also be able to help.
 

Wishful

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It said: 'Carefully document every conceivable aspect of your symptoms. This is helpful for the doctor and will make them take your case seriously.'

That's not my experience. Most doctors I encountered didn't want to see that sort of thing. I once brought in a list of questions to ask, since ME makes it hard to remember things, and the doctor flung up his hand and said: "I don't want to hear it." I think they view such self-documentation as a sign of psychological disorder (obsession with the disease, or whatever). They want patients who will simply let the doctor ask the questions, and simply accept whatever the doctor says. So be careful when bringing documentation to a doctor.

"But it’s also helpful for you in finding your tricks to beat back the disease.”

This quote is what I agree with about self-documentation. My journal has been very useful in figuring out what helps and what harms.
 
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It said: 'Carefully document every conceivable aspect of your symptoms. This is helpful for the doctor and will make them take your case seriously.'

That's not my experience. Most doctors I encountered didn't want to see that sort of thing. I once brought in a list of questions to ask, since ME makes it hard to remember things, and the doctor flung up his hand and said: "I don't want to hear it." I think they view such self-documentation as a sign of psychological disorder (obsession with the disease, or whatever). They want patients who will simply let the doctor ask the questions, and simply accept whatever the doctor says. So be careful when bringing documentation to a doctor.

"But it’s also helpful for you in finding your tricks to beat back the disease.”

This quote is what I agree with about self-documentation. My journal has been very useful in figuring out what helps and what harms.
Totally agree..have been with my gp for over 30 years..last year i took a list of questions and symptoms with me...due to brain fog..think he lost pacience with me and took paper off me
.I just felt totally belittled. After 2 months bed and housebound struggled to gp last week after waiting 2 weeks to get an apt I waited 30 minutes and then left as he hadnt even turned upto his surgery..of course something may have happened but i couldnt wait any longer. I am hoping for better treatment at immunologist next week if not nhs can frack off!!
 

Wishful

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Just wondering: do you trust the NHS complaints process to work for you, or do you expect that it will work for the doctor's benefit and maybe cause you further problems, such as being blacklisted by doctors? I did reluctantly try Alberta's health system complaints process, and I regret it.
 
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I feel here in uk the nhs is becoming more like an emergency service and we are being nudged or herded over to more private practice for various reasons
I am not sure I will put my head above the parapet using my practice complaints process but I can use other ways to make more subtle complaints via my mp ( member of parliament ) or through other statutory organisations.

I live in a rural area and choice is very limited..so I have to think strategically..having said that I dont have a lot of energy for complaining and the consequential stress..so will see how things go and probably have to sell my home to pay for whatever I need to get tested..but renting here is higher than mortgage payments...so a lot to think about. Are you in USA...Canada?
 
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Alberta is one of the most beautiful places I have ever seen and it is in Canada. My father moved there for a while in the late 1980's.

This particular article was for the US patients and I must say with the way this conversation is going that my new Do in the US is ready for me to hand her my lists that I bring at my appointment. I was at the Cardio just yesterday and he told me as he was leaving the exam room to keep on doing my journal and do report any pertinent information to him.
We are just starting to gain ground in being listened to in my part of the world.
 

toyfoof

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My journal with my daily basal temperature, blood pressure, and pulse is what helped my CFS doctor to finally put me on thyroid meds, despite my lab work being in range. He looks at it during every appointment to see if he can find a correlation to my migraines and other symptoms. This attention to detail I think is really going to help me.

I have also experienced the doctors who take our lists from us, disregard our experiences, and refuse to listen to questions. I can only hope that those doctors will be more and more replaced by compassionate doctors who respect our individual patient experiences.

(Side note: @jesse's mom that journal you linked to was published by my employer (from whom I’m currently on disability leave). I had just been diagnosed and my manager and I planned a whole marketing campaign around it and on how open access journals help patients. I got too sick to follow through but I still love seeing that journal and that special issue referenced.)
 

Alvin2

The good news is patients don't die the bad news..
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It requires surrounding yourself with people who love you and who will aid in your recovery, who will deliver groceries to you, or who will spend time with you at home when you’re too sick to go out.
That made me laugh out loud, i am lucky to have escaped people who are verbally and potentially physically abusive, never mind deliver groceries or spend time with me...