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

[southwestforests]

But one can always hope, right?

I'm not willing to do that any more.
And speaking of the concept of more ...
I'm more and more of the mind that medicine is not the science it masquerades as, it's a religion, and its priests would love to take every reforming heretic they can grab and gleefully burn them at the stake if there was even the slightest possibility of getting away with it.

Which brings to mind, dress up as a doctor, it's the perfect halloween costume; pure and white on the outside, a deadly horror on the inside.

 

[Rebeccare]

I'm not willing to do that any more.

I completely understand that. And on most days I feel the same way. For some reason today I'm feeling optimistic. But I'll probably feel decidedly less so at my next appointment. One just gets so beaten down and discouraged over the years of hearing "you're just depressed," "your results are fine, there's nothing wrong," "there's nothing more to explore," and "your problem is that you don't get enough exercise."

I'm more and more of the mind that medicine is not the science it masquerades as, it's a religion

My father is a physicist, and he always exclaims that he finds medicine to be the least 'scientific' of the scientific fields. Although that's partly because, in his world, mathematical models can explain natural phenomena. It frustrates him that medicine isn't as straightforward or as clean as physics. But the human body just has too many variables to behave as well as the numbers in his algorithms!

It can be very hard for medical professionals (and their sometimes large egos) to change the paradigms they have come to embrace. And it's much easier for them to come to the conclusion that there's something wrong with our thinking than realize that they might be ignorant of the facts. That hurts badly, and it's not fair to us.

But in spite of this there are some individual medical professionals out there who are open to learning. And there's always a next generation of doctors and nurses who are being educated. The hope is that if we change the narrative of ME/CFS that is currently taught, things will sloooooooooooowly change.

 

[YippeeKi YOW !!]

Im more and more of the mind that medicine is not the science it masquerades as, it's a religion

It's actually a legally incorporated money making machine, fueled by hospitals, who now actually own the Dr's medical practice, literally; big pharma, who promote pay-for-play schemes that contribute bigly to a practice's bottom line; and supported by patients who have been hopelessly brainwashed into believing that Drs are well-educated, caring healers.

Patients only stumble on the truth when they have something like ME and are forced to the conclusion that their Dr knows less about their illness than they do, and worse, they really don't care to spend any time (time is money, which is calculated on a dollar-per-minute scale) learning anything about it, or even admitting their ignorance.

It's a shell-and-pea game, and the patient always loses.

 

[Rufous McKinney]

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

I just made a physical therapy apointment...walked into this rather new place...and Gosh they take my insurance.

So its 20 days before I can be seen....(reporting: Physical Therapist shortage). My voice went out as I attempted to arrange an appointment. I noticed the considerable quantity of Exercising Equipment ...featured and the motivational signage.

Wonder how this will go? (I wrote need help with my neck and other issues related to DECONDITIONING).

should go very smoothly right?

 

[southwestforests]

(reporting: Physical Therapist shortage).

Brings to mind something I had looked in to a few years ago and seems to still be a thing.

It's the fear of any hospital administrator. The emergency room is backed up again because blood tests aren't being run quickly in the lab, creating a bottleneck throughout the system. Or, patients can't be diagnosed also because there's no radiology tech to operate the CT.

That's a realistic future scenario in California and many other states now realizing that their so-called "invisible workforce" of allied health professionals, such as nurses, clinical lab scientists, respiratory therapists, and pharmacists, are closing in on retirement. And there are far fewer younger workers on their way in to replace them.

"The age of our allied health professionals is higher, but we're not educating enough people to take their place when they move on," says George Proctos, vice president of human resources for Healdsburg District Hospital, a 43-bed critical access facility north of Santa Rosa.

Add to the problem the increasing demand for such skills from biotech and academic settings, especially as the patient population ages and demand for personalized medicine increases.

Lab Tech Shortage Causes ED Bottlenecks

By HealthLeaders Media Staff | May 14, 2009

https://www.healthleadersmedia.com/strategy/lab-tech-shortage-causes-ed-bottlenecks

--> and here a decade later,

A Shortage of Skilled Medical Lab Workers Is Looming
Automation can help; so can encouraging STEM students to consider careers in diagnostics

• By James Freeman on May 3, 2019

https://blogs.scientificamerican.co...ge-of-skilled-medical-lab-workers-is-looming/

However, producing these results quickly is increasingly challenging. A constantly growing number of patients and a greater number of available tests means that more samples are headed to the lab. There also is a shortage of staff to process the samples and keep up with the rising demand. According to the Bureau of Labor Statistics, demand for lab workers has grown 13 percent in the last year, almost double the average for other U.S. jobs.

This shortage of skilled workers has been decades in the making—the result of an aging workforce and a shrinking number of accredited training programs across the country. In fact, the number of such programs available to those interested in pursuing this field has decreased by nearly 25 percent since 1990.

 

[MariaMagdalena]

I just made a physical therapy apointment...walked into this rather new place...and Gosh they take my insurance.

So its 20 days before I can be seen....(reporting: Physical Therapist shortage). My voice went out as I attempted to arrange an appointment. I noticed the considerable quantity of Exercising Equipment ...featured and the motivational signage.

Wonder how this will go? (I wrote need help with my neck and other issues related to DECONDITIONING).

should go very smoothly right?

Far be it for me to interfere in your medical needs and decisions, BUT, have you interviewed the physical therapy place about their knowledge of PEM? What are you going for? I let the doctor-priestess send me to physical therapy for my fibro a year and a half ago and the irony is that I lost ALL of the gains I had slowly made in my ability to exercise. Before going to see them I swam 30 min. twice a week and did a 30 min treadmill once a week without crashing, AND could hike 5 miles in pieces.

They forced me into 1 hr once or twice a week of full body work out. I canceled a few times due to fatigue. When I reported the extreme fatigue to them they blew it off entirely. I did not have the confidence.... um. well frankly fed-up-ness to confront what they were doing. I hoped I could handle it and that it would help my pain.

Now, I had another PT this year for pelvic floor only and that went well, though at this point I can't even do the stretches she prescribed.

After that debacle I put together an educational email to the PT place about CFS from PT resources, which was completely ignored. If you would like me to pass that on to you let me know and I'll PM it to you.

 

[MariaMagdalena]

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.

Good for you. This kind of frankness is my future plan.

 

[southwestforests]

After that debacle I put together an educational email to the PT place about CFS from PT resources, which was completely ignored.

Dang, that sucks.
And could end up downright dangerous.
In my case, there is a little rural hospital and clinic not far from home, and as part of that a physical therapy place. The atmosphere in the room is pleasant, the gals are pleasant and professional, and it can be as much a social event as a medical treatment.

I've been there a number of times throughout my decade living here, sometimes for recurring muscle spasms, sometimes those spasms have been of the kind where the ER doctor just looks at me then goes and gets the powerful stuff, and about 3 times now for various broken bones near joints.

I do not know all their thoughts on CFS/ME, but ...
... they have twice seen a fatigue flare hit me while I was there.
And they do not express, at least not to me, any doubt of the reality of CFS/ME and the PEM element of it.

That one thing is a good thing in the current health care struggle & I am thankful for it.

 

[Rufous McKinney]

After that debacle I put together an educational email to the PT place about CFS from PT resources, which was completely ignored. If you would like me to pass that on to you let me know and I'll PM it to you.

That sounds useful, if you care to share....

Far be it for me to interfere in your medical needs and decisions, BUT, have you interviewed the physical therapy place about their knowledge of PEM? What are you going for?

Interview: NOPE

Know about this: DOUBT IT (yet are they likely to have opinions I won't want to hear? YES)

I wanted to get help with neck strengenthing. Because I'm in a lot of pain, neck wise...and it rather rules and dominates the attention units. But I have no neck evaluation. Nothing really ever gets evaluated around here. I just read how Others get evaluated (occasionally).

All I know is: when I saw a PT in southern Mexico, she put electrodes on this very sore muscle which released a bunch of blocked lymph in my neck, after which of course I got more sick after. That is what always happens. So perhaps I'm trying to BOTH get advice on strengenthing (but not EXERCISING). And the lymph thing.

I don't have any intention of handing myself over to anyone, nor do I intend to do anything THEY would call exercising...I don't have another 2 months to give away because I walked a round one block two days in a row.

 

[southwestforests]

Hey y'all, checking in with a bit of yet not a tangent (Hey, it's my thread, if i want to I can)
(oh, and you will note the model locomotive cab in my profile image; tangents are extrememly important to railroads - that's the RR name for straight tracks between curves)
One of the folks in our creative writers group (which meets in the morning) said to me earlier today that she knows someone with fibromyalgia, how is the CFS/ME similar, different, related to, fibro?

So, I went looking for a short and concise reference to send. Silly thing is I was on this forum at the time and apparently had brain fog and did not even have the thought that there are resources here!

Anyway, one reference I found which I DID NOT use was,
https://www.arthritis.org/living-wi...ons/chronic-fatigue-syndrome-fibromyalgia.php

Idiots ...

Despite the differences between fibromyalgia and CFS, the approaches to treatment of the two disorders are, in fact, quite similar. Most patients benefit from education about the conditions, participation in local and national support groups such as the Arthritis Foundation Self-Help Course, the use of low-dose antidepressant drugs at bedtime to improve sleep, as well as low-impact aerobic exercises.

Learn more about fibromyalgia from the Arthritis Foundation.

John Klippel, MD,
Rheumatologist

 

[Rufous McKinney]

Idiots ...

Oh, jeez, here it comes again.

This is a bit like (ok, not at all like, but still)...a recent one page handout info thingy, I saw elsewhere, that was described as a good thing to pass out.

Some cringe-worthy examples from the handout:

Title in very large Font: TO the NonBELIEVERS. (please please do not include BELIEF in the title of an ME handout).

Subheaders: all our favorite buzzwords, delivered via buzz saw:

Beliefs (again)
Undiagonosable (made up)
Lazy (a real swell term for around here)

Then the handout had some good info on Science of ME. Now remove ALL THE Title, Intro and Cringe.

 

[Rufous McKinney]

tangents are extrememly important to railroads - that's the RR name for straight tracks between curves)

Thats very news worthy, here. I needed that illustrated. Geometry has been awhile. Woodatho't the tangent might be where the line splits and a new one comes off tangentially. But Nah!

Tangent
In geometry, the tangent line to a plane curve at a given point is the straight line that "just touches" the curve at that point. Leibniz defined it as the line through a pair of infinitely close points on the curve. More precisely, a straight line is said to be a tangent of a curve y = f(x) at a point x = c on the curve if the line pa... Wikipedia

 

[Rufous McKinney]

After that debacle I put together an educational email to the PT place about CFS from PT resources, which was completely ignored. If you would like me to pass that on to you let me know and I'll PM it to you.

TO the NON-BELIEVERS

I decided why not just post this handout I referred to...NOT the one you prepared...and include here.

So this is an example of some really good information that Dr. Guthridge summarized. But then he told me he did not actually make this handout. So its not Dr. Guthridge's awful title and troubling intro.

Here is the intro I was CRINGING over: Lets not SAY THIS AT ALL! It just keeps reinforcing, rather than ending, our mistreatment and rampant misunderstanding of ME.

"M.E. patients face disbelief that they are sick. Many are told that they are simply tired, stressed, anxious, depressed, lazy or malingering. How can people with M.E. respond to such disbelief and lack of understanding?"

https://www.actionforme.org.uk/uploads/images/2019/10/InterAction_102_non-believers.pdf

What I hope to do is make something similar, but cite the references and assume whom I've handed it to doesn't need to hear about Belief and Malingering. I need it myself.

 

[southwestforests]

"M.E. patients face disbelief that they are sick. Many are told that they are simply tired, stressed, anxious, depressed, lazy or malingering. How can people with M.E. respond to such disbelief and lack of understanding?"

Since I have a saying that the practice of medicine sometimes operates more like a faith-based religion than the actual faith-based religions do, the idea of responding by nailing bundles of thesis to their doors seems reasonable to me.

 

[southwestforests]

sigh. The most recent 12 months have not been good & successful things for me & health care.
One element of that is I am done, finished, with using the University of Missouri hospital and clinics.
And my hands are hurting so instead of typing new words to say why I'll paste in the letter I sent them.

Jul 6 at 1:57 AM
Hello;
After finding dried blood on Neurology exam table on July 3, I am done using MU's hospital and clinics.

Here's what happened:

Went up there for a 3pm appointment for a couple skin biopsies. Had a driver from Hometown Homecare in Fayette with me because my health no longer allows me to drive that far.

Got back in the exam room, procedure room, whatever the correct term for it is.
A gal came in with the required tools and supplies and got them opened and arranged.
Then she and the gal from Hometown Homecare stepped out.
I got my clothes changed.
Sat down on the side of the exam table.
Reached down and pulled out the footrest/legrest extension.

That's kind of interesting, a pair of palm-sized red smears.

And I'll bet it ain't lipstick.

So I got dressed, opened the door, asked for someone official to come look.

The gal who had laid out the tools came in and looked.
Then she went and got the RN.
In a few minutes the RN came in.
We talked.
Somewhere during that time the dried blood was cleaned off by the gal who was the one who had prepared the tools and instruments.

And comment was made that the person who cleaned the rooms was not aware of the sliding portion.
Uhh, say what?
(and then I wonder if the pocket the sliding portion is retained in under the exam table surface has a top which rubbed against the blood on the sliding portion)

During all the goings on I decided that I'm done doing business with and getting health care from University Hospital and clinics.
Done.
Just plain done.
I'm done making appointments.
I'm done making bill payments.

RN asked if I wished to talk to the Doctor.
Nope, I'm done here.

Add the above to some months back, maybe even last year, [turns out it was November 2018] when an attending physician came in and without preamble or warning began taking the reflex hammer and rapidly hitting, emphasis on the hitting, my various joints while rapid firing questions and demands for information.

Umm, excuse me, you DO NOT do that kind of thing to someone who has told you on their medical history that they have autism and PTSD.

So, yes, my experience with University Hospital Neurology has soured me on the whole institution.
Which is kind of sad, because my parents went to MU in the 1950s and met there, and worked in what was the hospital at that time, Dad as an orderly while he was doing Navy ROTC and Mom in the kitchen while getting her degree as a Nutritionist.

As for me, way back in 1987, 88, I almost made it through LPN school in Independence, MO, at what was then the Jennie Lund School of Practical Nursing; plus, before that I had worked in housekeeping department a couple summers at a hotel on the Chesapeake Bay in Virginia Beach, Virginia. So, I'm not ignorant of what's involved here.

Their response was lawyerese to the max,

I am sorry for your challenging interaction with our Neurology Department and Environmental Services team. I am actively looking into your concern with our head of the outpatient practice in the Neurology Department as well as the Environmental Services team. We get better through challenging feedback, and I am grateful that you took the time to let me know your concerns around patient safety.

If we can be of service to you in the future, I hope that you will give us the opportunity to serve you.

Once again, thank you for your feedback.

p.s. And no, I did not select the Jennie Lund School of Practical Nursing because it reminded me of this, https://www.brightontoymuseum.co.uk/index/Category:Jenny_Lind_(locomotive)
Or at least I'm pretty sure that I didn't ...

 

[Judee]

My mom had a similar thing happen many years ago. We went to the hospital because she was severely dehydrated during the flu. They gave her IV liquids in the ER and I think, sent her home. I don't remember exactly but a few days later at home she was still having problems with liquids so we did a follow up with an associate of our PCP.

She said the nurse could administer IV liquids in office so we wouldn't have to go to the ER again. The nurse was having some problems prepping my mom's arm and I noticed that while she was digging through the unused gauze in her carrier, she grabbed out some previously used bloody ones (not my mom's blood) which she quickly threw to the side. I stood up and went to the door of the room to get someone else and the doctor walked by.

I described what happened. She sorta shrugged it off but said she would talk to the nurse. We decided we would go home without the IV being done and just have my mom try to drink more liquids. Otherwise, we were going to go to the ER instead of dealing with that nurse.

We called later to complain but they all just downplayed the incident. We were not happy.

 

[Judee]

I told her to her face that she has just revealed she is clueless about this stuff.

This is so good. We do need to start challenging this with assertiveness otherwise they are going to stay clueless.

Wonder how this will go? (I wrote need help with my neck and other issues related to DECONDITIONING).

should go very smoothly right?

@Rufous McKinney, I don't know how you feel about chiropractors or if your insurance covers them but I've been to both and although I had an excellent physical therapist for almost a year for my neck and jaw (TMJ/TMD), I've always gotten more relief from the work my chiropractor does on my neck.

You do have to find a good chiropractor though. One who will adjust the entire spine wherever it needs it and with traditional manipulation rather than actuators (atlas and otherwise) or drop tables. They don't work for me or my mom and just seem much more jarring and bruising when we've had them used on us.

I've also found that although my chiropractor doesn't completely understand ME/CFS, he is sympathetic and has dealt with many patients who have this and/or fibromyalgia.

 

[Rufous McKinney]

I've always gotten more relief from the work my chiropractor does on my neck.

Yes I should consider the chiropractor as well. Since you mentioned it, my jaw is tense also, its not from teeth grinding, its inflammatory and: also by the neck. I lift my neck when lying down, yucky gliches in my jaw, plus the lymph is inflammed. And wind pouring out also. Ears aching.

Cranial Sacral: want to see

Lymphatic People: we have those, that direct route makes me nervous

 

[Judee]

Yes, my jaw affects my neck and visa versa.

Jaw, neck, ears, etc are all connected and affected by misalignment.

Hope you get some relief very soon.

 

[Likaloha]

Had to find a new doc, waited several weeks and was trying to be hopeful....he told me that I needed to totally change my diet immediately (no gluten, wheat, sugar, fake sugar, cheese, milk, etc) and that I needed to do these series of very painful exercises several times a day, and that eating even 1bad thing or missing one exercise is really bad....while I do freely admit my diet isn't great, I often eat or drink what is easiest that seems most healthful....says I need expensive treatments not covered by any insurance , and made me feel really bad that I expressed my amount of daily exhaustion and inability to do so many things...he told me if I just did everything he told me and needed to start immediately that I could function better in a while... I am willing to work hard within the limits of my disease, but the cost of food alone is bankrupting. He also told me that he could fix my severe brain damage from 17 years ago with some type of ozone something or other and costly i.v.s! I was so upset when I left and much poorer... He wanted to change too many things at once, and I have learned from experience that it is not a good idea to try too much too fast....even if I could do it.
Sorry to go on so....just needed a place to vent where I am undestood! Thanks to those who could read this long!