POLL. Which other conditions do you have?

[vision blue]

This follows up on the overview poll. There will be one final poll to follow.

 

[Judee]

This is a hard poll for me.

I suspect I have some on that list (Lyme or similar, dysautonomia or such) but have not been able to find a doctor who was willing to dig deeper...assign a label and treat it, not at least w/o a great outlay of resources I don't have.

And then I actually did get hypothyroid and Fibromyalgia (considered autoimmune?) labels.

However, I had the feeling that those particular doctors rubber stamp every tired patient who walks through the door with those. They seemed to be their "pet diagnoses" as I call them.

So I really don't know now which box(es) to check. How about adding TBD or "stay tuned to the next not-exciting episode of As the ME/CFS World Turns." ??

Edit: Oh, IBS. That diagnosis I trust so I can check "Other autoimmune condition..."

Anyway, coach me @vision blue since even though I'm being a bit silly, I don't want to mess up your poll.

 

[vision blue]

This is a hard poll for me.

I suspect I have some on that list (Lyme or similar, dysautonomia or such) but have not been able to find a doctor who was willing to dig deeper...assign a label and treat it, not at least w/o a great outlay of resources I don't have.

And then I actually did get hypothyroid and Fibromyalgia (considered autoimmune?) labels.

However, I had the feeling that those particular doctors rubber stamp every tired patient who walks through the door with those. They seemed to be their "pet diagnoses" as I call them.

So I really don't know now which box(es) to check. How about adding TBD or "stay tuned to the next not-exciting episode of As the ME/CFS World Turns." ??

Edit: Oh, IBS. That diagnosis I trust so I can check "Other autoimmune condition..."

Anyway, coach me @vision blue since even though I'm being a bit silly, I don't want to mess up your poll.

I think alot of people will be in a similar position. As you. I think if you think you have conditions but arebt sure- its ok to either chrck those boxes or not and then maybe say in comments what you choose and why - just like you did. Maybe if one thinks probability higher than 50 percent one has _______. then check it off?
(I shoukd have been clearer to say lets NOT consider fibromyalgia as an ai autoimmune illness

 

[Judee]

(I shoukd have been clearer to say lets NOT consider fibromyalgia as an ai autoimmune illness

Okay, I won't check it for that. I'll just check it for IBS then. Thanks.

Oh, one more question, what would MCS (multiple chemical sensitivities) be under? I think some doctors are starting to put that under the MCAS label?

Edit: Oops...just saw the other polls. Hopefully, I'll look better next time. Sorry.

 

[vision blue]

Okay, I won't check it for that. I'll just check it for IBS then. Thanks.

Oh, one more question, what would MCS (multiple chemical sensitivities) be under? I think some doctors are starting to put that under the MCAS label?

Edit: Oops...just saw the other polls. Hopefully, I'll look better next time. Sorry.

Another great question. I"d say put multiple chemcial sensitivity under MCAS and then also if you've had a known chemical exposure can check that off too in the other poll. I didn't put a seperate category for multiple chemical sensitivity- maybe i should have. I will try to add it not to this poll but to poll 3. Thanks.

 

[Pyrrhus]

Okay, I won't check it for that. I'll just check it for IBS then.

I don't know of any evidence suggesting that IBS is an autoimmune condition.

There is, however, plenty of evidence that IBS is a form of dysautonomia:

Irritable Bowel Syndrome (IBS): Summary of discussions
https://forums.phoenixrising.me/threads/irritable-bowel-syndrome-ibs-summary-of-discussions.84970/

Oh, one more question, what would MCS (multiple chemical sensitivities) be under? I think some doctors are starting to put that under the MCAS label?

If you look at the diagnostic criteria for MCS and compare it to the diagnostic criteria for MCAS, you will quickly see that they are completely different conditions.

MCS refers to non-allergic intolerance of multiple substances.

MCAS, on the other hand, refers to allergic (mast-cell mediated) responses to multiple triggers. (even if the trigger is not an allergen)

Hope this helps.

 

[Alvin2]

I don't know of any evidence suggesting that IBS is an autoimmune condition.

There is, however, plenty of evidence that IBS is a form of dysautonomia:

Indeed, i had read a fascinating study suggesting its caused by a specific bacteria that the researchers had even identified, and i'm sure i bookmarked it but i can't find the study the last time i went searching for it.

 

[vision blue]

@Alvin @Pyrrhus @Judee

I think she just meant she could check off ibs (not ai because of ibs)

I hadnt thought about mcs when i was thinking of conditions i wanted to know more about but like judee said, there are plenty of folk who know think mcs results drom Mcas. The description that you wrote about mcs not being allergic condition is based on the old school terminological problem That “allergy” was only considered in some circles to be IgE responses; in that view , MCAS coukd also be calledx non allergenic

Hoping for the first poll to get 100 responses

 

[vision blue]

If you havent already, please consider taking the overview poll as well

https://forums.phoenixrising.me/threads/do-you-have-other-conditions-with-your-cfs.86910/

and if you have an energetic day...theres a final poll called poll 3 which lists a few more possible conditions to contrmplate

 

[Rufous McKinney]

I think if you think you have conditions but arebt sure-

I assumed you meant that you need an official diagnosis of X and Y from a doctor.

I never have diagnoses. Even if I show up in a hospital, they don't ID whats wrong with any rigor or correctness.

Even my SEID diagnosis isn't really one. no tests were run...

 

[Judee]

Oops, just found out that Interstitial Cystitis is supposed to be autoimmune. I forgot that one.

 

[VisualEffect]

Can you add POIS to the poll please? It can be described as having delayed PEM after sexual activity which can last for week or two. It’s interesting how many males with CFS have POIS.

 

[Pyrrhus]

Can you add POIS to the poll please? It can be described as having delayed PEM after sexual activity which can last for week or two. It’s interesting how many males with CFS have POIS.

Many people with ME, of all genders, report significant PEM after orgasm:

Post-sex exhaustion
https://forums.phoenixrising.me/threads/post-sex-exhaustion.80438/

But I'm not sure the wide variety of symptoms in POIS really qualify as "PEM":

Postorgasmic Illness Syndrome (POIS)
https://forums.phoenixrising.me/threads/postorgasmic-illness-syndrome-pois.81982/

Hope this helps.

 

[vision blue]

@VisualEffect Maybe I can add it to poll number 3 . This one is a narrow subset to assess frequency of other potential stand alone diseases that co occur in cfs (and especially freq of folk that have cfs but not any ofthese others altho i think response bias might keep those folks hidden) ) . If post orgasm effects are a type of PEM i wonder if that makes it a symptom of cfs - list 3 is more of a mishmash including symptoms, sort of. You can always also ask on a stand alone poll?

 

[Rufous McKinney]

Oops, just found out that Interstitial Cystitis

bladder has been running my life for years now.....

 

[YippeeKi YOW !!]

This is a terrific and well-conceived poll @vision blue, and will be a real blessing to those of us still trying to figure things out as well as future members and newcomers.

Thank you for taking the time as well as the considerable energy drain to construct, post and monitor this input !!!!

 

[vision blue]

I assumed you meant that you need an official diagnosis of X and Y from a doctor.

I never have diagnoses. Even if I show up in a hospital, they don't ID whats wrong with any rigor or correctness.

Even my SEID diagnosis isn't really one. no tests were run...

That's why i'm fine with it if you're pretty sure you have it - have some logical rational reason.... I don't hold much stock in MD opinions anyway, including "offical diagnoses". I guess people can discuss their reasons and so ok, does this count. e.g. say someon has an ANA that's 1:320 with a nucleor pattern but can't get a diagnosis from anyone. I would go ahead and count that as an AI rhuematology disease, but i suppose AI other would be defendable as well. So not perfect, but sill get some idea.

@YippeeKi YOW !! Thanks much for the support. There's 3 polls total. if we can get 100 people to take each, i think we have some useful data despite some of the issues.

people can also revote so I suppose what i can do is try to clarify all the issues, and then if it changes a persons vote they can go ahead and chagne it.

 

[YippeeKi YOW !!]

There's 3 polls total. if we can get 100 people to take each, i think we have some useful data despite some of the issues.

I've already happily answered two. Where's the third?

You might want to post links to all three of them in order to encourage more support and responses, yes?

 

[YippeeKi YOW !!]

if we can get 100 people to take each, i think we have some useful data despite some of the issues.

I agree. And you've already got over 100 on this one, so good start !!!

 

[vision blue]

@YippeeKi YOW !! Thanks. I probably should post the links to the other two. will dig for them. one is the "overview" with just one question (but not called overview) and the other says "POLL 3" or something like that.

I wish on 100. So far just 33 responders to the poll here.