I'd appreciate if all members who have CFS/ME participate in this POLL on POTS&NMH

[Tired of being sick]

There was "RESEARCH" used twice in this thread on attempt to derail it..

The other thing about POTS testing is that it should ideally be done in the morning. This is because POTS symptoms are more exaggerated in the morning:

It's actually a smaller percentage who have POTS, according to research. Most have NMH instead of POTS.

This so called "RESEARCH" was basically laughed off the forum.

Post#78

CFS/ME sufferers who Have been diagnosed with POTS

1. Yes
   
   23 vote(s)
   
   41.1%
2. No but I suspect it
   10 vote(s)
   17.9%
3. I do not really understand POTS enough to suspect it
   
   4 vote(s)
   7.1%

The CFS/ME sufferers themselves are the true experts here..

I'll trust a fellow sufferer's word over ANY doctor's word.

And I know that 100% of the self aware CFS/ME sufferers here will agree with that in a New York second..

 

[Valentijn]

The CFS/ME sufferers themselves are the true experts here..

I'll trust a fellow sufferer's word over ANY doctor's word.

Your poll had some serious problems.

1) NMH wasn't even an option for a while, meaning people likely chose from the other options for the closest approximation.

2) Many patients think POTS is a general term equivalent to OI. They aren't aware of the alternative options, nor how those can be determined. Your own posts horribly muddled the issue even further, since you basically did exactly the same thing in attempting to describe POTS.

3) You still give NMH the wrong label in the poll. Some forum members might simply not respond at all if they don't see their type of OI listed.

Research by quality researchers who use proper definitions of ME/CFS have found that almost all of us have some form of OI. A relatively small minority have uncomplicated POTS. The rest have NMH. NMH might trigger tachycardia to compensate for falling blood pressure or pulse pressure. But that does not mean that they have NMH + POTS. It means they have NMH and sometimes their heart rate tries to compensate.

 

[Tired of being sick]

Truthfully
The only problem this poll had was that it did not have your PERSONAL diagnosis as an option..

I'm brutally honest..

 

[Valentijn]

Truthfully
The only problem my poll had was that it did not have your PERSONAL diagnosis as an option..

Which also happens to be the most common OI diagnosis among ME patients in rigorous peer-reviewed research. Or do you have some scientific critique of that research which you'd like to share with us?

 

[Tired of being sick]

You are in denial..

You are ignoring REAL numbers that the participants happen to be in the CFS/ME capital of the world
known as............Phoenix Rising

%ages mostly hold accuracy no matter the sample size from all of my experiences

 

[Hip]

@Tired of being sick
You're being as evasive as a dodgy politian. I just referred to the fact that you have medically misinformed people reading this thread by making up your own diagnostic method that has no basis in fact or medical practice, and you just ignore this entirely, and change the subject matter.

Do you think you can actually address this important subject matter I raised?

 

[Tired of being sick]

 

[Denise]

I hope people can provide input on a question.

Is there a good way to determine a scientifically acceptable representative sample size for polls?

 

[Valentijn]

I hope people can provide input on a question.

Is there a good way to determine a scientifically acceptable representative sample size for polls?

Yes. But I don't know what it is. It's a statistics issue, and probably involves a complicated formula which involves calculating a lot of things

But a forum poll is never going to be particularly scientifically valid. People aren't chosen randomly, and they self-select in answering or not. And then we get the problems with poorly phrased and/or poorly explained questions and options. Not too shocking really, since we're patients, not trained researchers.

However, these informal polls can be interesting and possibly provide indications of where researchers should be looking. And they often spark a lot of interesting discussion and debate, and even some healthy disagreement.

 

[Tired of being sick]

Lol.......................

 

[Tired of being sick]

This POLL was originally created for POTS..

A few people who had another form Dysautonomia called NMH which I had no clue about
but since I'm a nice guy I added it to the POLL which now I wish I wouldn't have..
Once you enter a choice in the poll that said choice can NOT be edited
But this did not stop the wild accusations from flying..
Also I made a mistake by not making sure the Unlimited Maximum Selectable Responses: were not turned off..

Which explains why the poll turned so quickly after post #41..

I'm not going to name names but there are posters here who have interests to have this poll go the way they feel it should based on what they already believe..

This post was created for those who do not have the time or strength to sift through around 30 to 40 of meaningless posts woven all through this thread...

 

[Tired of being sick]

What are the symptoms and other effects of ME/CFS?
•
There are five main symptoms of ME/CFS:
1.
Reduction or impairment in ability to carry out normal daily activities, accompanied by pro
-
found fatigue;
2.
Post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort);
3.
Unrefreshing sleep;
4.
Cognitive impairment; and
5.
Orthostatic intolerance (symptoms that worsen when a person stands upright and improve
when the person lies back down).
•
Other common manifestations of ME/CFS include pain, failure to recover from a prior infection,
and abnormal immune function.
•
At least one-quarter of ME/CFS patients are bed- or house-bound at some point in their illness.
•
Symptoms can persist for years, and most patients never regain their pre-disease level of health or
functioning.
•
ME/CFS patients experience loss of productivity and high medical costs that contribute to a total
economic burden of $17 to $24 billion annually.

As I suspected many times in this thread:dysautonomia in such forms as orthostatic intolerance,
NMH,POTS,ETC is a secondary condition in the majority of ME/SEID/CFS sufferers!!!

 

[Mel9]

I

For those people voting for the "No but I suspect it" option:

Note that it only takes 10 minutes lying down on a sofa at home to diagnose yourself as either having or not having POTS. It's very easy to do.

So those who voted "No but I suspect it" might want to perform this simple home POTS test, and then change their vote (you know that you can now easily change your vote if you want to in these poles).

I did the test and my pulse increasesed by more than 30 beats per minute

 

[wastwater]

I don't think I have pots,but it is common in my genetic syndrome.hypoplastic left heart syndrome

 

[Tired of being sick]

@Tired of being sick - Do you have a link to a research study or web page that defines the diagnostic criteria that you are using for "Neurally Mediated POTS"?

I can't find any diagnostic criteria for that phrase when I do a search. In fact, I can't find many pages using that phrase at all. Is it a term from a very recent research study? Or a term that your doctor used?

Thanks.

Your poll had some serious problems.

1) NMH wasn't even an option for a while, meaning people likely chose from the other options for the closest approximation.

2) Many patients think POTS is a general term equivalent to OI. They aren't aware of the alternative options, nor how those can be determined. Your own posts horribly muddled the issue even further, since you basically did exactly the same thing in attempting to describe POTS.

3) You still give NMH the wrong label in the poll. Some forum members might simply not respond at all if they don't see their type of OI listed.

Research by quality researchers who use proper definitions of ME/CFS have found that almost all of us have some form of OI. A relatively small minority have uncomplicated POTS. The rest have NMH. NMH might trigger tachycardia to compensate for falling blood pressure or pulse pressure. But that does not mean that they have NMH + POTS. It means they have NMH and sometimes their heart rate tries to compensate.

@Tired of being sick
I have been unable to find any medical literature that says you can diagnose the subtypes of POTS using blood pressure measurements, as you described in your earlier post here.

Can I ask where did you see this diagnostic method?

Classic Pathophysiology and POTS Subtypes
Exaggerated postural tachycardia may reflect several pathophysiologically distinct mechanisms2,4,6,8,9,13-16 (Table 1). Based on autonomic testing and plasma norepinephrine (NE) levels, POTS has been classified into several subtypes, including neuropathic and hyperadrenergic POTS2,13 and, based on measurement of leg venous pressure and calf blood flow, as low-flow, high-flow, and normal-flow POTS.8,16 β2-Adrenoreceptor polymorphisms may contribute to the hemodynamic diversity of patients with POTS.14,15

Here is some info on most "known" POTS types/forms and sub types as where the above quote came from
The US National Library of Medicine National Institutes of Health under .
Postural Tachycardia Syndrome: A Heterogeneous and Multifactorial Disorder
.

Hers is the link:
Postural Tachycardia Syndrome: A Heterogeneous and ...

I guess Neuropathic and Neurally meditated were mistakingly cross referenced?

I originally got the Neurally meditated type of POTS from Wiki which is now changed
to neuropathic POTS
Here is the link, which has changed considerably


Postural orthostatic tachycardia syndrome - Wikipedia, the ...


this means research on POTS treatment and causes is growing rapidly!

 

[Sasha]

It's actually a smaller percentage who have POTS, according to research. Most have NMH instead of POTS.

Do you have a ref for that? Interesting!

 

[Valentijn]

Do you have a ref for that? Interesting!

It's out there somewhere ... "Rowe" is the author. Can't look now, blood pressure is acting up

 

[Tired of being sick]

Here is some more jaw dropping proof that many more ME/CFS sufferers more than likely have POTS
or NMH


POTS, A Debilitating Poorly Understood Condition, Most Common Among Young, Educated Women

So, the researchers assessed 136 patients with POTS, measuring their levels of fatigue, sleepiness, anxiety and depression, problems concentrating, and how severe their bodies’ reactions were to standing up. It was a small study, but they found some consistencies throughout the study groups. Interestingly,

the majority of people who developed the condition were women, and well-educated at that. Women who attended a specialist were also diagnosed quicker,

however, so it could be possible that they were just knowledgeable enough to know that their condition necessitated a specialist’s care.


Finally, people who developed the condition were most likely to be diagnosed pretty early in their lives, at an average of 30 to 33, according to a press release.






5:02 PM
www.medicaldaily.com/pots-debilitating-poorly-understood-condition-most-common-among-young-educated-women-288470
www.medicaldaily.com

 

[Tired of being sick]

I would also greatly appreciate, those of you who have NMH that checked the poll box of
I know for sure I do not have POTS

Please Uncheck the box as you still have a form of Dysautonomia

Because I made a mistake of not including NMH in the original poll..........

 

[Tired of being sick]

Directly referring to post #98,I myself diagnosed my POTS before getting confirmation by a tilt table test,
done by a cardiac electrophysiologist..