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

[southwestforests]

My friendship looks to have ended with one of the friends who suggested the Nurse Practitioner but is quite fine with the other.

The one was out working in their yard today as I happened to pass by at the turn to the city park which has a scenic overlook, so I stopped to visit. It did not end well.
She told me I was wrong for what I did with the Nurse Practitioner because I was going by one study that said that increasing exercise was bad for CFS and you can't go by just one study, they have little value, and for every study you can find another saying the opposite.

That struck me as rather interesting because I emailed both friends and the Nurse Practitioner several studies, articles, following the appointment.
That was 20 days ago and there has been no reply yet from the Nurse Practitioner or the one friend.

Both friends happen to have experience with professional studies and medical documentation.

The one things went badly with today also was a special education teacher for a long time.
The other who accepted the information was also in medical records and medical billing for some time and has been and still is is a county historian and a reporter plus columnist for several local rural newspapers.

Now, back to where the one friend was chastising me today for my developing an attitude "from just one study" the "from just one study" bit is documentably untrue as I have shared several with her, plus other related news and science.
And then there's the nearly 4 decades of personal experience my Dad has with the disease and situation, which has often gone down the same path as the personal experiences documented in the reports I provided.

Actually, I think the root of the problem the one friend has with me has less to do with science and quite a bit more to do with the Nurse Practitioner being her friend.

 

[gbells]

She told me I was wrong for what I did with the Nurse Practitioner because I was going by one study that said that increasing exercise was bad for CFS and you can't go by just one study, they have little value, and for every study you can find another saying the opposite.

That not quite how it works. Usually you want to see many different studies, rate their quality and see what you can glean from the evidence. A good trial will show effects above the statistical significance point.

If researchers didn't do this then there would never be any way to judge what works.

 

[Rufous McKinney]

so I stopped to visit. It did not end well.

How unfortunate.

I know you know we have 9000 studies. THis other person does not know that.

So they know not that which they speak. This is so common place, this speaking without knowing. But most of the time people just want to help. But don't know how so they step in it.

I was not aware that Nurse Practioners are discussing who is or is not their patient, with their friends.

Maybe we just need to be quietly satisfied, like the cat who has caught the mouse- we have 9000 studies. You have no obligation to prove or disprove anything to these other people.

But I understand- they are friends and acquaintaces, and you value that. So figure its still valuable. Just a bit more tarnished than one would hope. (apparently we are not spelling that word correctly today).

Chatting with others is so- triggering. Perhaps its all just a game, how to chat without getting caught up in the issues which trigger more angst.

 

[Rufous McKinney]

I believe and talks about how using the monitor and exercising helped him.

Been considering getting a heart rate monitor/ with chest strap.

Three appear if I google that category. One is around $50. The other two are $500. One of those has one star.

Famous for making the wrong purchase here. I don't want to spend $500 wrong.

 

[southwestforests]

I was not aware that Nurse Practioners are discussing who is or is not their patient, with their friends.

I have no evidence of that manner of discusion happening. Paula and I were close enough friends that I shared things with her.
And it was her who drove me to the appointment in question. And she had wondered why I said she wouldn't need to take me again.

 

[Rufous McKinney]

And it was her who drove me to the appointment in question. And she had wondered why I said she wouldn't need tp take me again.

the reality is we need the smartest doctors ever produced, and in groups.

I saw a Physicians Assistant for multiple years during which I received no care or treatment, and received some abuse actually. For certain illness, this type of thing is fine, but something as complex as this?.

Which of course is not to say that some miracle isn't hiding over there, around the corner. Someone who can really help may just be right around the corner.

 

[southwestforests]

I know you know we have 9000 studies. THis other person does not know that.

So they know not that which they speak. This is so common place, this speaking without knowing. But most of the time people just want to help. But don't know how so they step in it.

Something about the first part of that brings to mind articles with headlines mentioning science deniers and my thoughts about that being the wrong genre, let's talk about the medical science deniers who are and have for decades been doing real measurable observable harm and injury to we who have CFS/ME.

That second part, I'm not going to go looking for the documentation, but it is a pretty fair bet that even I have done so at least a few times.
Oh well, live and learn.

 

[southwestforests]

Which of course is not to say that some miracle isn't hiding over there, around the corner. Someone who can really help may just be right around the corner.

So many contradictory feelings happening on parallel tracks: on the one hand I sure hope so while on the other hand I'm not going to waste time and energy having hope, hope is myth, hope is illusion. My spiritual faith has its foundation in miracles while on the other hand, miracles are an even bigger fantasy than Vulcans, Klingons, and Romulans are.

(Geek note: as it happens, transparent aluminum is no longer a total myth,

https://science.howstuffworks.com/transparent-aluminum-armor3.htm

ALON: Transparent Aluminum Armor

Bullet-resistant glass has some clear drawbacks, namely, that it doesn't bar all bullets and that piling on the protective but heavy material merely slows the vehicle in question. So what can save the lives of soldiers and civilians under fire?

Researchers think the answer may be transparent aluminum armor, a finely polished ceramic alloy that's both lighter and stronger than traditional bullet-resistant glass.

Known commercially as ALON, transparent aluminum armor is made of aluminum oxynitride, a combination of aluminum, oxygen and nitrogen. Before it can end up as a hard transparent armor plate, it begins as a powder. This powder is then molded, subjected to high heat and baked, just as any other ceramic is baked. Once baked, the powder liquefies and then quickly cools into a solid, which leaves the molecules loosely arranged, as if still in liquid form. The resulting rigid crystalline structure of the molecules provides a level of strength and scratch resistance that's comparable to rugged sapphire. Additional polishing strengthens the aluminum alloy and also makes it extremely clear.

)

 

[southwestforests]

Something which struck me as quite interesting at the appointment in question and the previous one too, is that the NP just flat would not say the words 'chronic fatigue' even when directly addressing its effects and relevant issues.
I wonder if that has meaning and what that meaning would be?

 

[Rufous McKinney]

NP just flat would not say the words 'chronic fatigue' even when directly addressing its effects and relevant issues.

who knows, but perhaps- There is this whole problem with describing or naming anything. Due to belief systems that doing so, then is immediately limiting.

I can achieve full verbal paralysis by trying to avoid naming directly, this Little Ditty (see, thats my indirect name).

That Mr. Barr, and Ms Epsteinn...reside someplace but can be evicted, thru will, intent, or Manifestation.

So to say outloud to the patient: CHRONIC-- well that NAMES it, PINS IT to the chalk board. She probably simply was uncomfortable saying Chronic....as in ALWAYS and ALL THE TIME.

I'd like to do away with the CFS term all together. Its damaging. My goal is to: never even refer to it. And if the term comes up (I expect it will, at my Physical Therapist appointment on Thursday)...I'll attempt responding in a manner that indicates THIS is a systemic illness, CFS is a general term for who knows what.

 

[Judee]

My own feelings: When you're a patient experiencing this personally then studies mean absolutely nothing. They can tell me exercise will make me feel better when I and sooooooo many others here have a lifetime of experience showing that is not the case.

Eventually the truth will come out. It always does but it's how much doubting we have to endure from others in the meantime that is

@Rufous McKinney, is that what you meant by 9000 studies, i.e. 9000 patients who have personal experience? Or are there really 9000 studies out there?

 

[southwestforests]

She probably simply was uncomfortable saying Chronic....as in ALWAYS and ALL THE TIME.

I'm certainly uncomfortable having it that frequently, it takes away fulfilling and enriching things I want to do, want to have.

It even takes away boring mundane things such as doing the freakin errands.
And that's just plain mean.

30+ years back my Dad was one among the CFS patients who ended up in the psych ward suicidal after being pushed to increase exercise and that failing spectacularly. So in my life this isn't only about cold hard studies, documentation, and data, it's personal, and I'm fortunate my Dad is still living.
Though at 79 years old how much longer he has simply because of his age is an open question.

 

[southwestforests]

Eventually the truth will come out. It always does but it's how much doubting we have to endure from others in the meantime that is

Indeed.
And there's that thing where what I'm presenting as truth contradicts their truth therefore the truth I'm presenting is by definition invalid because it is different.
I am so weary of that.
Have had it all my life, ALL MY LIFE, with autism & then even more of it gets added because of this crappy disease.
I'm angry.
Even my anger gets invalidated, and then employed as a tool to further invalidate my anger about the above 2 things, Eh, he's just another angry white male, you know how they are.

 

[Rufous McKinney]

9000 patients who have personal experience? Or are there really 9000 studies out there?

There are at least 9000 studies: i've seen it stated in Sci References. On MECFS. I should therefore now insert proof.

Thats alot of studies, on a disease that nobody understands and nobody much wants to study. But given the complexity of the human body X the indifference of certain key institutions X its so easy to just laugh at them factor.....Bummer for us.

 

[Rufous McKinney]

30+ years back my Dad was one among the CFS patients who ended up in the psych ward suicidal after being pushed to increase exercise and that failing spectacularly. So in my life this isn't only about cold hard studies, documentation, and data, it's personal, and I'm fortunate my Dad is still living.
Though at 79 years old how much longer he has simply because of his age is an open question.

Thats terrible. And we are grateful he did not succumb to their abuse. And that you won't allow others to treat you in this manner.

A favorite line from Cloud Atlas (the film): I will not tolerate criminal abuse.

 

[Rufous McKinney]

Have had it all my life, ALL MY LIFE, with autism & then even more of it gets added because of this crappy disease.
I'm angry.

Anger is a valid human emotion that is applicable and appropriate at certain times. Stifling it entirely is not healthy.

I can only imagine the kind of treatment you've received over the years, and contortions required to respond without Anger Winning.

I"ve had my versions...and this all has gone on my WHOLE LIFE TOO (starting at one year old, for sure).

 

[Rufous McKinney]

30+ years back my Dad was one among the CFS patients who ended up in the psych ward

Does your father have his theory of how he became ill with CFS? I'm just rather curious.

 

[southwestforests]

Does your father have his theory of how he became ill with CFS? I'm just rather curious.

I'm not sure any more; but, I do remember a long period of exploration to see if it might somehow involve him acquiring a virus or something which was generally unknown in our western hemisphere, because his CFS hit not too long after he spent a couple years as the operations officer for SNEP FIT at NAB Little Creek where a series of patrol boats was being delivered to the Saudi Navy and the crews were being trained.

 

[Rufous McKinney]

the crews were being trained

so thats possible Military exposure to something averse.....Vietnam? Gulf War?

 

[southwestforests]

so thats possible Military exposure to something averse.....Vietnam? Gulf War?

In Dad's case in the duty station mentioned, this was early 1980s. His medical retirement was 1985 or 1986, I don't remember exactly, after a good 4 or 5 years spent trying to nail down what was happening to him.
SNEP FIT was for Saudi Navy Expansion Program Fleet Introductory Training. And the question was something like whether there was a normal, find it everywhere, virus, bacteria, or something, in the middle east which western hemisphere people had no previous exposure to or immunity for - a question which arose again with the later Gulf War Syndrome.
With SNEP FIT the officers and enlisted of those patrol boats of course had to move from Saudi to here and live in the Norfolk Virginia Beach area. I believe it was looked for something which might transfer from person to person and that was determined to not be a factor in the acquisition of CFS.

Dad was at Vietnam but didn't go in-country like his brother-in-law did. Because service in Vietnam was supposed to be career enhancing at the time he put in several times to be assigned to the brown water navy riverine craft but was rejected and assigned to DDs and CVs offshore.

We were informed at his retirement ceremony, which was officially a medical retirement because of CFS and fibromyalgia, that there were a couple Admirals who personally tinkered with Dad's career because he was so good at fixing things they needed fixed over here they personally intervened to prevent him from going in-country in Nam and getting shot at. One of the prime things they kept him over here for was the setting up and further development of the Navy's drug and alcohol rehab program.

In my case, the correlation implies marriage was the causation, I got married in June 2005 and during the Christmas retail season was when my CFS symptoms began manifesting to become job-ending serious in the spring. Or does it imply holidays caused it? Maybe it was the nutmeg in the eggnog? Acid snow, maybe that was the cause? Who the hell can tell any more.