And another health care provider reveals they are clueless how CFS/ME works

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And another health care provider reveals they are clueless how CFS/ME works, which means I won't be going back to this Nurse Practitioner who gets so many good reviews from both patients and other health care professionals & who a couple of my friends had suggested would be better than the rural health care clinic and hospital where I had been going.
Today she went down the "exercise more, exercise more, exercise more, and keep exercising more even when you don't feel like it" road.
I told her to her face that she has just revealed she is clueless about this stuff.
Then finished up dealing with what today's appointment was about, and went home.
 
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Look how many serious athletes now have this illness...
I'm going to have to look it up, is a thing I'm totally unaware of.
But then I don't much look at the news any more, don't have the psychological energy for it.
So, I stick to news I go look up about spaceflight, transportation, archaeology, astronomy, animals, and other science news.
EDIT: one find, and it has been going on for a while by dates on these.
Which brings to mind that my Dad was in US Navy and got CFS/ME and fibromyalgia right at beginning of 1980s and finally got diagnosed in mid 1980s.
Then I got it 20 years later.
Original Articles

Chronic fatigue syndrome and the athlete
Susde Parker M. Ed. , Peter Brukner M.B.B.S., F.A.C.S.P. & Malcolm Rosier Ph.D.

Pages 269-278 | Received 10 Jun 1994, Accepted 05 Jun 1995, Published online: 08 Jul 2009
https://www.tandfonline.com/doi/abs/10.1080/15438629609512057
 
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SlamDancin

Senior Member
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@southwestforests I’m not aware of any studies on this just a ton of anecdotal evidence. Many many years ago I ran cross country for one season and used to play a lot of basketball. I’m sure I pushed myself into serious hypoxic states because on a few occasions I had blackouts that were an inch away from syncope, with pain in my lungs chest and neck with throbbing carotid artery. Something was not able to get enough blood to my brain and every time I tried to do intense exercise I’d feel this pain coming on and had to stop. Exercise intolerance and general malaise just continued to get worse until I was eventually housebound. Slowly improving using some personalized strategies.

Yes exercise, intensity dependent, raises all stress hormones and can dump a huge amount of endotoxin into the liver and blood not to mention hypoxia making it much worse.
 

Pearshaped

...and then Life went pearshaped.
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I really really can relate.
exactly these instructions made me bedbound.(the irony is that i was very sportive before ilness,they should have seen that - and I should have trusted my inner voice)

When will these ignorant people finally realise that we are ill ,not lazy?

if a healthy person gets the flu or a stomach bug,NO ONE would tell him to go to the gym and work extra hard.

hey @southwestforest what about if you send her an info-sheet about ME/CFS for doctors? Or the warning-about GET-sheet from here at PR?
 
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hey @southwestforest what about if you send her an info-sheet about ME/CFS for doctors? Or the warning-about GET-sheet from here at PR?
How about I quote myself and what I sent her at 1:20pm yesterday, and yes, I did tell her right there in person that I was a angry at her.

And my memory wants to believe that these pages were learned about somewhere on this forum.

These would shed some light on where the anger and hostility arises when it looks like too much emphasis is being placed on exercise as being the answer.

PACE: The research that sparked a patient rebellion and challenged medicine
by sasusa | Mar 21, 2016 | Study design | 44 comments


https://senseaboutscienceusa.org/pace-research-sparked-patient-rebellion-challenged-medicine/


"

In 2011, researchers announced that PACE, the largest treatment trial in the history of chronic fatigue syndrome, had been a great success. That seemed like great news since there is no known cure for this devastating disease that affects over a million people in the United States alone, including Laura Hillenbrand, the best-selling author of Seabiscuit, and jazz pianist Keith Jarrett. Exercise and psychotherapy, the researchers said, can significantly improve and sometimes cure chronic fatigue syndrome (CFS), which is also sometimes called myalgic encephalomyelitis (ME). Headlines announced the study finding around the world; it was simple, as The Independent wrote, “Got ME? Just get out and exercise, say scientists.”

The finding struck many ME/CFS sufferers as preposterous—and their concerns about the way the trial was designed and conducted, after long being dismissed, were suddenly supported in a recent investigative tour de force by David Tuller, academic coordinator of UC Berkeley’s joint masters program in public health and journalism. In response to his investigation, six scientists from Stanford, Columbia, and elsewhere sent an open letter to the editor of The Lancet demanding a fully independent investigation into the trial. After three months with no response from The Lancet, the letter was republished with 42 signatures. After that, The Lancet editor, Richard Horton, emerged from witness protection and invited the group to submit a letter about the concerns for publication. The study is under increasing scrutiny by scientists and science writers about whether its conclusions are valid.

The question of how all this happened and how the criticism is being handled have sent shockwaves through medicine. The results from PACE (including these) have been published in prestigious journals and influenced public health recommendations around the world; and yet, unraveling this design and the characterization of the outcomes of the trial has left many people, including me, unsure this study has any scientific merit. How did the study go unchallenged for five years? And how could journalists have recognized the problems before reporting unqualified, but unjustified, good news?

There were problems with the study on almost all levels, but our goal in this piece is to examine a critical issue that is increasingly being talked about in academic research but less so in the news media, due to its complexity: study design.


... "

and

Editorial: On PACE
by sasusa | Mar 21, 2016 | Study design | 39 comments

https://senseaboutscienceusa.org/editorial-on-pace/


"
...
David Tuller, a journalist who had earned a doctorate in public health, and who ran the University of California Berkeley’s joint program in public health and journalism, believed the sufferers were onto something when they said there was something badly wrong with the way the trial was designed and conducted.

And the thing about patients who either suffer from a rare disease, or a more common and inexplicable one as with ME/CFS, is that they are usually a formidable resource—a network of distributed experts who have sifted and weighed the scientific research with the kind of avidity you would expect, given that their lives depended on it. In pharmacology, rare disease patient groups are highly respected and are seen as partners in research rather than just subjects and consumers of studies.

Tuller dug in the weeds and published his results in a four-part series on the blog Virology. The gravity of his investigation may be gauged by one of the experts he quotes, Ronald Davis, Ph.D., Professor of Biochemistry and Genetics at Stanford University: “The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”

Because we believe that study design is a critical issue in science, and because statistics is central to understanding study design, we felt it was important to look at PACE from this perspective.

But we were also spurred by science writer Julie Rehmeyer, who wrote a powerful essay for our series “Epistemically Challenged” (over at Sense About Science USA) about her own experience of ME/CFS, and how it changed her view of science. As Rehmeyer is the most recent recipient of the American Statistical Association’s Excellence in Statistical Reporting Award (an honor we think Joseph Pulitzer would have considered equal to his eponymous prizes given his love of statistics), we took her criticism of PACE as another important alarm.

The conclusion of Rebecca Goldin’s 7,000-word analysis on PACE’s design is this: “The best we can glean from PACE,” concludes Goldin, “is that study design is essential to good science, the flaws in this design were enough to doom its results from the start.”
...
"
Scott
 
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@southwestforests
Today she went down the "exercise more, exercise more, exercise more, and keep exercising more even when you don't feel like it" road.
Oh, that's sooooo disappointing. She seemed to be the real thing, and I know that you were heartened to have lucked into her, and I was so happy for you.

Better things are coming. Apparently, life likes to kick the crap out of us before delivering the dessert part of the dismal meal.
 
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Better things are coming. Apparently, life likes to kick the crap out of us before delivering the dessert part of the dismal meal.
I've some time ago become cynical enough that I'm not willing to expend energy believing that.
I know that you were heartened to have lucked into her, and I was so happy for you.
I do appreciate that support; and indeed I was heartened. Perhaps it would be unwise to ever be heartened again.
 
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So frustrating! Very few doctors seem to know anything about it.
Frustrating indeed.
My Dad was diagnosed with cfs, fibromyalgia, neuropathy, and half a dozen other things in early 1980s by US military doctors at various northern Virginia hospitals and here close to Four Decades later, various health care providers still throw the "exercise more" thing at him.

And they did so even with it known that some really oddball things were going on, like the more he used his muscles the more they leached out some protein or amino acid or enzyme or something, I have forgotten exactly what.

And in defiance of any system of logic of which I know, where he is now in a nursing home with having dementia and/or alzheimers and also has really poor balance, and has lost over 20 pounds for no known reason, certain medical types STILL throw that at him.

WTF??????????????????????????????????????????
 
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My Dad was diagnosed with cfs, fibromyalgia, neuropathy, and half a dozen other things in early 1980s by US military doctors at various northern Virginia hospitals and here close to Four Decades later, various health care providers still throw the "exercise more" thing at him.
I just visited my primary doctor, who has a general understanding of ME. And is a great person.

But its like he knows: kindergarden level ME.

So I show him my missing fingerprints. I tell him heads are falling off the tops of spines. "Have you heard of MCAS?".... that question- he seemed blank. Of course he does not watch TV, busy with a girfriend 40 years younger....so NO, he does not know about Jen in Remission. 5 operations. the Netflix movie.

I came in with a list of Doctors from my Insurance. He indicated the immunologist who had CAnceled my attempted appointment: is in his 80's. Is hardly practising.

I got an RX for some physical therapy. I Need to: obtain some (strengthen neck). Wonder how that will go?
 
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He indicated the immunologist who had CAnceled my attempted appointment: is in his 80's. Is hardly practising.
That brings to mind things like, https://www.boardvitals.com/blog/physician-shortages/
It’s well known that there is a physician shortage looming in America. It’s estimated that the US could be short as many as 120,000 physicians by 2030. The latest report shows that nearly 13,800 primary care physicians and 33,800 and 72,700 physicians in non-primary care specialties will be needed. That includes a shortage of between 20,700 and 30,500 physicians for surgical specialties. Shortage estimates are growing at an alarming rate. Last year’s projected estimate was that the country was short between 40,800 and 104,900 physicians. These shortages may provide new opportunities for physicians looking for challenging positions.
and https://www.bakersfield.com/news/do...cle_12d31ee2-2fe0-11e9-a835-bb31f115d0b0.html
A longstanding healthcare professional shortage is only expected to get worse as baby boomers reach retirement age, which will likely lead to greater difficulty finding a doctor and longer wait times when a doctor is found.
And one more to make my standard practice of 3 references to a thing, https://www.aamc.org/news-insights/...ndings-confirm-predictions-physician-shortage

... Additionally, the aging population will affect physician supply, since one-third of all currently active doctors will be older than 65 in the next decade. When these physicians decide to retire could have the greatest impact on supply.
...
  • The United States would need an additional 95,900 doctors immediately if health care use patterns were equalized across race, insurance coverage, and geographic location. This shortage would be in addition to the number of providers necessary to meet demand in Health Professions Shortage Areas as designated by the Health Resources and Services Administration. This additional demand was not included in the production of the overall shortage ranges.

  • While rural and historically underserved areas may experience the shortages more acutely, the need for more physicians will be felt everywhere. The overall supply of physicians will need to increase more than it is currently projected to in order to meet this demand.
As it happens, I live in a rural area.
And it is pushing at the edge of becoming underserved.

There is a moderately sized city with a couple universities and a large university hospital just under 30 miles from home but that is further than I can now drive myself.
I've lived here just over a decade and that driving change happened last year.

No, moving to the city, a city, is not an option.

I have neither the finances to move nor most importantly the physical health to move.

And where I live now has so far been documentably safer than subsidized housing areas in that city are known to be.
And I live nearly right across the road from each health care and grocery shopping.
Which means on days that I'm not able to drive, and those seem to be randomly about 1/3 of the days in a month, I can walk over and pick up a bag or two of groceries.
On the flip side, there are days I drive when my body is not good for the walking.
And there are some days I can't go at all.
But if I lived in city or suburb where it was mandatory to drive to groceries ...
 
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Yup: the huge next problem to add to our Problems and Issues lists.

So they do the Affordable Care Act, increasing mandates to provide mental health coverage, for instance. Did they create new people who can provide Mental Health Services? No. So what good is this "theoretical" coverage...when nobody returns your phone call, or they want to argue over I don't Take Your Insurance (yet my Insurance GAVE me your name?).

So all my key health providers are: my age and I am ALREADY a retired person.

My niece has just become an RN..and somehow this is not reasuring.
 
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Yes: the Rule of Three.
Oh: there actually IS a Rule of Three (I thought you and i had invented it!).

And I do ALWAYS attempt to provide the rhythmic Three Beat...when writing.

The rule of three is a writing principle that suggests that a trio of events or characters is more humorous, satisfying, or effective than other numbers.[1] The audience of this form of text is also thereby more likely to remember the information conveyed because having three entities combines both brevity and rhythm with having the smallest amount of information to create a pattern.

Example of its better with three: The Wizard of Oz adventure.... plus dorothy and one dog.

Ancient Mystery Illustration of the rule of three: Three Hares
1570733714118.png
1570733714118.png
 
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Oh: there actually IS a Rule of Three. ...
The rule of three is a writing principle that suggests that a trio of events or characters is more humorous, satisfying, or effective than other numbers.[1] The audience of this form of text is also thereby more likely to remember the information conveyed because having three entities combines both brevity and rhythm with having the smallest amount of information to create a pattern.
I did not know that, or once knew and have forgotten.
You'd think that with me playing at being a writer I'd know of that, or at least have recalled that the concept existed.

So they do the Affordable Care Act, increasing mandates to provide mental health coverage, for instance. Did they create new people who can provide Mental Health Services? No. So what good is this "theoretical" coverage...
Brings to mind the several years I was on Facebook (I tried it 3 times and they locked me out 3 times, once in 2015 for something called Malware Checkpoint, I still actively hate them for their lies about that) and the debate about passing the ACA and the connected Mediwedontcare at all proposal. I was ignored, profoundly ignored, when I brought up that if there is going to be care there have to be care providers.
 
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Today she went down the "exercise more, exercise more, exercise more, and keep exercising more even when you don't feel like it" road.
I had a similar experience with my new PCP. She wasn't as gung-ho about GET as the NP you saw. However, I mentioned that a previous rheumatologist had encouraged me to increase my exercise levels, and before I could finish my sentence (the end of which was "...and I tried that for many years before discovering it was actually detrimental to my health."), she broke in with "Oh, yeah, I've heard that GET is really effective at helping people with chronic fatigue." My heart sank, I (internally) rolled my eyes, and I let her know that recent research didn't back that up but otherwise let it go.

I'm still on the fence about going back to her (partly because, other than ME/CFS, she was nice and seems to know her stuff, but also because I don't want to get a reputation as a troublesome patient). BUT I signed up for the #MEAction Postcards to Doctors campaign, which encourages medical professionals to take a continuing education course about ME/CFS based on Unrest. I'm sending her one of the postcards in the hopes that she may choose to become better informed.

It's so hard to find doctors who are well-informed. I'm beginning to feel like I should approach each encounter with a medical professional like a teaching opportunity, and stuff my purse full of brochures and fact sheets so I'll be well armed (and maybe even make up a quiz to administer at the end of the appointment;)). Kind of like an ME/CFS missionary! Of course, we shouldn't have to do that. It would be nice if doctors actually knew more about this condition than we did, plus I'm sure some are not so willing to learn. But one can always hope, right?