Idea for polls - suggestions welcome

[MeSci]

I am thinking of starting one or more polls on associations between ME/CFS and irritable bowel syndrome (IBS). I'm not sure if/how I can include 3 polls in one thread, and would also like help refining the polls before posting them, as often ideas come up after a poll is posted and it can be hard to make changes once people have started voting.

These are the polls I am considering:

Poll 1:

I have never had IBS
I had IBS but no longer have it since developing ME/CFS
I had IBS before developing ME/CFS and still have both
I did not have IBS before ME/CFS but developed it when or after I developed ME/CFS

Poll 2:

I have never been tested for coeliac/celiac disease
I have tested positive for coeliac/celiac disease
I have tested negative for coeliac/celiac disease

Poll 3:

I have never been tested for leaky gut
I have tested positive for leaky gut
I have tested negative for leaky gut

 

[Sushi]

I am thinking of starting one or more polls on associations between ME/CFS and irritable bowel syndrome (IBS). I'm not sure if/how I can include 3 polls in one thread, and would also like help refining the polls before posting them, as often ideas come up after a poll is posted and it can be hard to make changes once people have started voting.

These are the polls I am considering:

Poll 1:

I have never had IBS
I had IBS but no longer have it since developing ME/CFS
I had IBS before developing ME/CFS and still have both
I did not have IBS before ME/CFS but developed it when or after I developed ME/CFS

Poll 2:

I have never been tested for coeliac/celiac disease
I have tested positive for coeliac/celiac disease
I have tested negative for coeliac/celiac disease

Poll 3:

I have never been tested for leaky gut
I have tested positive for leaky gut
I have tested negative for leaky gut

Yes, polls are tricky to get in all the possibilities.

In poll 1, you might consider adding: "I had IBS but no longer have it since treating ME/CFS (and leaky gut)"

And in poll 2, you might want to include the types of testing as there are several and some more reliable than others. Also, adding the possibility of testing sensitive to gluten but testing negative for celiac.

In poll 3, again, the type of testing is probably an important thing to include, and maybe, "I have tested positive for leaky gut (by xxx test) and after treatment, no longer test positive.

I'm sure there are other possibilities I haven't thought of!

Sushi

 

[Firestormm]

I would suggest you add 'I don't know but I think I might' in some way to all of your polls. The NHS for example isn't always specific in what they test for and patients can't always remember. Some are not specifically diagnosed with IBS but believe they have the symptoms etc. You checked to see if any previous polls have been done on this? Might be helpful - but a new poll is always worthwhile too

 

[MeSci]

Thanks for suggestions, Sushi and Firestormm

If I'm going to have 3 polls in one thread I want to keep them quite simple so as not to overwhelm people. I sometimes have to abandon surveys after a few questions as my brain packs up! I was thinking of having further more detailed polls on specific issues after this one, depending on how it goes. So originally I had considered more combinations, including worsening as well as improvement, but there were just too many to put in at this stage, I thought.

I did consider and then abandon the idea of 'don't know' options, but think now that it might be useful, as it would give an idea of how extensive is the lack of potentially very-relevant info.

I did spend some time looking for polls on these issues but didn't find any. If anyone knows of any, could they point me to them?

 

[Sparrowhawk]

I agree with Sushi's suggestions, especially about types of testing and what worked. If you have to put the what worked into a text box, that can then give you raw material later for a what worked best comparo poll.

 

[MeSci]

I agree with Sushi's suggestions, especially about types of testing and what worked. If you have to put the what worked into a text box, that can then give you raw material later for a what worked best comparo poll.

I don't really want to complicate things by including details of what worked at this stage. It could get very complicated! People have tried so many different treatments, and even individuals are often on several different interventions so that it is hard to be sure what produced any changes.

My main interest initially is to look at the relationship between IBS and ME, especially on whether IBS preceded ME in many people, as this would support the leaky-gut hypothesis and be consistent with small studies that have found improvement in ME when leaky gut is treated. Then I may try further polls on types of test for leaky gut (it may be that hardly anyone has had tests at all), and looking at improvements and worsenings in ME and IBS.

Basically I want to see if I can get pointers to why there is a high rate of IBS in people with ME.

 

[Sparrowhawk]

Fair enough, MeSci, being clear about your objectives is half the battle for any investigation. Did you see the link to the Telegraph article I posted this morning over in News? It's on this topic you mention of ME and IBS.

Here is a direct link, FYI http://www.telegraph.co.uk/health/5407749/ME-Proof-that-it-isnt-all-in-the-mind.html

 

[Sparrowhawk]

I was just coreected, that Telegraph article is from 2009, apologies if it is old news but was new to me.

 

[xchocoholic]

Hi mesci,

Ibs is an umbrella term that can include celiac, parasites, food intolerances, candida,
gastroparesis, gall bladder disease, h pylori, etc, etc. Unless a doctor orders the right tests
patients won't know they have these.

Fwiw, I only had mildly annoying digestive symptoms for the first 15 years of my me/cfs. And
that was while eating anything I wanted. I only became severely intolerant of gluten in 2005.
Of interest is that my ataxia, dx via rhomberg in 1990, disappeared one year post gf diet.

Tc ... X

 

[Sushi]

Hi mesci,

Ibs is an umbrella term that can include celiac, parasites, food intolerances, candida,
gastroparesis, gall bladder disease, h pylori, etc, etc. Unless a doctor orders the right tests
patients won't know they have these.

Fwiw, I only had mildly annoying digestive symptoms for the first 15 years of my me/cfs. And
that was while eating anything I wanted. I only became severely intolerant of gluten in 2005.
Of interest is that my ataxia, dx via rhomberg in 1990, disappeared one year post gf diet.

Tc ... X

Yes MeSci, many doctors give an IBS diagnosis for insurance reasons and to justify medications--when you have something slightly more subtle going on--coding is important in the medical world.

While polls are interesting, here on PR they don't seem to get enough responses to really tell us much. Often this is because the potential responder "doesn't fit" the questions in the poll and so doesn't answer.

Hope you get something helpful with this,
Sushi

 

[MeSci]

Hi mesci,

Ibs is an umbrella term that can include celiac, parasites, food intolerances, candida,
gastroparesis, gall bladder disease, h pylori, etc, etc. Unless a doctor orders the right tests
patients won't know they have these.

Fwiw, I only had mildly annoying digestive symptoms for the first 15 years of my me/cfs. And
that was while eating anything I wanted. I only became severely intolerant of gluten in 2005.
Of interest is that my ataxia, dx via rhomberg in 1990, disappeared one year post gf diet.

Tc ... X

I had thought that IBS was only diagnosed after other things were excluded, but I guess things vary between countries (and doctors!). Sushi - We don't need health insurance in the UK - we have the NHS!

Maybe I'll include a couple of links to info about IBS, maybe one UK one and one US one, and/or a preamble explaining what I mean by IBS, which is the symptoms described at those links and an absence of alternative diagnosis such as coeliac disease. Then maybe use the same wording as for Poll 1 in Polls 2 and 3, but substituting coeliac/celiac disease or leaky gut for IBS, also including 'don't know' options.

Of course people may have started with a diagnosis of IBS and later had one for coeliac/celiac disease or leaky gut. I'll try to think of a way to deal with that.

I'm glad I asked for suggestions before starting the polls!

 

[xchocoholic]

Hi mesci,

There's a long list of conditions that doctors don't look for when diagnosing someone with ibs. Imho
most of the time, they're just being lazy because they get paid the same regardless of the quality of patient care.

I don't know any traditional gastroenterologists who look for parasites, candida, digestive enzymes or food intolerances. Doctors are just now recognizing the importance of gut bacteria but they don't run cdsas. Fwiw, the list of digestive enzymes we should have gets longer everytime I look it up.

And of those who get biopsied for celiac disease, many of the biopsies will be wrong. I'm drawing a blank
on the stats right now but based on my celiac contacts, most had neg biopsies prior to getting a positive ones.

Fwiw, my biopsy showed damage 17 months post gf but according to the person who analyzed my biopsy,
there wasn't enough damage to get a celiac dx. It looked like a Marsh 3 to me tho. I'm not sure if they're
still using the Marsh scale to dx celiac now. That was 5-6 years ago.

Tc ... X

 

[MeSci]

Hi mesci,

There's a long list of conditions that doctors don't look for when diagnosing someone with ibs. Imho
most of the time, they're just being lazy because they get paid the same regardless of the quality of patient care.

I don't know any traditional gastroenterologists who look for parasites, candida, digestive enzymes or food intolerances. Doctors are just now recognizing the importance of gut bacteria but they don't run cdsas. Fwiw, the list of digestive enzymes we should have gets longer everytime I look it up.

And of those who get biopsied for celiac disease, many of the biopsies will be wrong. I'm drawing a blank
on the stats right now but based on my celiac contacts, most had neg biopsies prior to getting a positive ones.

Fwiw, my biopsy showed damage 17 months post gf but according to the person who analyzed my biopsy,
there wasn't enough damage to get a celiac dx. It looked like a Marsh 3 to me tho. I'm not sure if they're
still using the Marsh scale to dx celiac now. That was 5-6 years ago.

Tc ... X

Thanks, xchocoholic. Boy - this is complicated!

A few new thoughts then:

Preamble giving link to pages describing IBS symptoms.

Then replace 'IBS' in Poll 1 with something like 'IBS-like bowel problems'.

Add Poll 4 asking:

I have tested positive for another bowel condition (please specify)
I have tested negative for another bowel condition (please specify)

or maybe Polls 2-4 could be combined into one poll as long as people can tick more than one answer if necessary.

 

[xchocoholic]

hi mesci,

i honestly can't see how any poll can work in this situation. there are
just too many variables to consider. Including that some conditions aren't
recognizable until they reach a certain point. Celiac disease dx is a good
example of this.

also wanted to add that i regret having said docs were just being lazy. i understand
how complicated medical info is now so I'm trying not to be so hard on
medical professionals. It's going to be a process for me tho. Same
for most celiacs or pwcs.

tc .. x

 

[peggy-sue]

I get brief episodes of IBS. I don't have it full time, thankfully - it's just one in my bundle of "personal ME sypmtoms".

I've had perhaps 4 bouts of it, lasting a few days each, in 10 years.

 

[MeSci]

hi mesci,

i honestly can't see how any poll can work in this situation. there are
just too many variables to consider. Including that some conditions aren't
recognizable until they reach a certain point. Celiac disease dx is a good
example of this.

I'm not too bothered at this stage what particular bowel condition people were diagnosed with. There is a wide range of them, but a high proportion have in common the fact that they increase the permeability of the gut wall/mucosa.

If the responses indicate that gut conditions commonly precede the development of ME, my current plan is to then look at whether people have found that any treatments improve the bowel condition, the ME, or both.

 

[peggy-sue]

The only think that helps my OH with his IBS id a daily dose of psyllium husk (commercial Fybogel).
After about 3 months of taking it, everything just eased up. He can now happily drink a bottle of wine of a few bottles of beer with no problems afterwards. He can't afford to stop taking it - or everything goes haywire again.
(thank-goodness - or I'd have to live with him sober, for ever!)

 

[xchocoholic]

I don't think i had leaky gut when my me started because i ate what i call garbage
food everyday. Mine started with a chest
infection. I'he been sick since 1990 and my digestion would stop every few months for about a week but
then I'd be ok again.

There have been studies on cfs and leaky gut. We have a thread here.

Am i missing the
point here ? My cfs brain could be befuddled. ; ) .. sorry if i wasted your time
here. tc ... x

 

[MeSci]

I don't think i had leaky gut when my me started because i ate what i call garbage
food everyday. Mine started with a chest
infection. I'he been sick since 1990 and my digestion would stop every few months for about a week but
then I'd be ok again.

There have been studies on cfs and leaky gut. We have a thread here.

Am i missing the
point here ? My cfs brain could be befuddled. ; ) .. sorry if i wasted your time
here. tc ... x

No need to apologise, xchocoholic.

Yes, I have seen and participated in the threads on leaky gut and ME/CFS. What I want is a poll to see whether it is common for bowel problems to precede the development of CFS. If it is, this would support the theory that leaky gut may cause CFS, likely via mechanisms that lead to autoimmunity. I know there are studies that find that people with CFS commonly have leaky gut and that treating the leaky gut improves CFS symptoms, and it is even claimed that it can bring about complete remission. But I haven't yet seen a study that refers to the timeline of illness development. If there are any I would very much like to see them, as chronology can be crucial in ascertaining causation.

 

[peggy-sue]

You can put me down as a definite no for gut troubles preceeding ME or in the run up to it.

I didn't start getting occassional gut troubles until 8 years in, and I don't see them as being involved in my ME any more than joint pains or finger swellings, or any other bit of me that decides it's not going to play properly.