Sugar-Coated Shackles: Could Sugar-Coated Pills Trigger M.E. Symptoms?

[Rufous McKinney]

I just have to be so careful of potential allergens lest I end up gasping for air or near choking to death.

that sounds very difficult to have to cope with day to day, I'm so sorry you dealing with this.

I had alot of allergies, severe ones as a child. Chinese TCM herbs, helped me alot with the allergies. I was able to see an expert herbalist, and they are rare and hard to find.

 

[SugarGirl]

@Rufous McKinney Thanks for your kind words Rufous. My lung capacity is very low indeed, with a peak flow of 130 instead of the usual 400, so these days Im very limited in what I can do, and the reason why I have to be so careful with allergens, as I really cant afford to lose any further capacity. I was interested to hear about your success with Chinese herbs, but living in rural Scotland, my chances of finding a herbalist might be remote, but I'll look into it. Anyhow, I hope your week is going well and that your feeling okay.

One thing I was wondering about, was why the ratio of members to guests on this site is so great. At present there are nearly 1,500 gusets but only 9 members online. Im just worried Im not getting that many responses to my call for people trialing swapping out their enteric coated pills for non coated varieties. Im hoping that maybe people are maybe trying it out in the background and that they will report any findings out later. Im hoping the offline crowd will also let us know if they have any success. Anyhow, being a newbie, I just wondered how the numbers worked. Thanks again for your contiued interest.

 

[SugarGirl]

@Dysfunkion Thanks so much for your detailed reply about the meds you have used, and for clarifying that you weren't affected by the enteric coatings. This is exactly the kind of result that I am looking for, where I can discover if people have been affected of not. I'm just as interested in disproving my hypothesis than I am in proving it. Its all about getting enough data to prove it one way or the other. Maybe my own reactions to these coatings are a one off, but without the data, I just dont know. If no one else gets these symptoms, then I can at least look elsewhere for answers to my own reactions to these coatings.

Thank you again for your response, its very much appreciated. I hope the sun is shining wherever you are and that you are having a good day.

 

[Rufous McKinney]

One thing I was wondering about, was why the ratio of members to guests on this site is so great. At present there are nearly 1,500 gusets but only 9 members online.

oh wow, I don't know much about that. I think thats not correct. Only 9 members. New people are in a type of waiting period and then are Oked to be Members, typically.

A problem around here is threads do not stay visible as New Threads, for very long, and then they sink into PR oblivion and you have to go find the thread again. Threads proliferate. Instead of one thread about taking Plasmalogens, there are maybe ten.

I'll bump your thread to the top again, and maybe some new folks will notice. People are in and out, all over the world different time zones etc etc etc.

 

[andyguitar]

One thing I was wondering about, was why the ratio of members to guests on this site is so great. At present there are nearly 1,500 gusets but only 9 members online.

As far as I know members only appear as members if they log in. So if they just come for a quick look without logging in they show as guests.

 

[SugarGirl]

@andyguitar @Rufous McKinney Thanks so much for taking the time to get back to me regarding the online numbers. It makes a bit more sense now. What I'm left wondering now, is that like @Dysfunkion, are visitors to my page mistakenly thinking I'm talking about actual sugar, understandable given the posts title, and possibly dismissing the rest of the post from the get go, and that could account for the lack of uptake for the study. I've had 640 views but only 4 respondents.

I really thought there would be a lot of interest in it given my total remission since getting these enteric coatings out of my system. But perhaps I did have an idiosyncratic reaction and have some other underlying condition which brings about these ME symptoms, when triggered by these pills. There also seems to be confusion around which ingredient might be the culprit as discussed with @Wishful , but at the end of the day, I now realise there is no way of really knowing, given the multiple chemicals that are involved in these coatings or contaminants in the pill making machinery, so feel further discussion along these lines is unlikely to further my enquiry.

It would just be useful to get some bigger number of respondents to see if there are any measurable outcomes. So my question now is, should I post a simpler, less muddled hypothesis following on from our discussions here, in a different area of the forums, ie, the research area? If you have the time I'd be very glad to hear your opinions. Hope your respective weeks are all off to a good start.

 

[Dysfunkion]

I think whats happening with the guest and member ratio is that there are probably a lot of general bots viewing the site and others just glancing over. You'll see that on all forums honestly. Its probably not that people just saw the topic and glanced over too often but those clicks may not have even been people in many cases. Here I tend to have better faith in people seeing a topic and also considering what the topic could be related to based on the title.

 

[andyguitar]

So my question now is, should I post a simpler, less muddled hypothesis following on from our discussions here, in a different area of the forums, ie, the research area?

I dont think that would help you get more comments. What you could try is posting about this subject on some of the other forums- like Reddit for instance- and making it more about allergy rather than me/cfs.

 

[Rufous McKinney]

are visitors to my page mistakenly thinking I'm talking about actual sugar, understandable given the posts title, and possibly dismissing the rest of the post from the get go,

the title might throw off some users, there should be a way to modify the title but I'm not sure what that is...

I think Titles should be far more carefully crafted to help users find the thread.

 

[andyguitar]

there should be a way to modify the title but I'm not sure what that is...

On the right side of the thread title is "unwatch" next to that is an arrow. Click on that and the thread title can be edited.

 

[Mary]

I really thought there would be a lot of interest in it given my total remission since getting these enteric coatings out of my system. But perhaps I did have an idiosyncratic reaction and have some other underlying condition which brings about these ME symptoms, when triggered by these pills

@SugarGirl - post-exertional malaise (PEM) is considered to be the hallmark symptom of ME/CFS. Per AI:

The hallmark symptom of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is post-exertional malaise (PEM), where symptoms worsen significantly after physical, mental, or emotional exertion, and recovery can take days, weeks, or even months.

This has nothing to do with ingesting any sort of chemicals. I overdid it yesterday (spent 2 hours at an animal shelter adopting a cat) and today have been crashed. This has been happening like clockwork for almost 27 years now. It has nothing to do with what I eat or ingest.

I do have a very strong sensitivity to MSG in all its iterations - it gives me severe insomnia if I eat or drink anything in that category at dinnertime, but that's not ME/CFS. So you have a strong sensitivity to "sugar coatings" - I don't think that's ME/CFS. It might be considered part of MCS (multiple chemical sensitivity). This may be why you're not getting more responses here - your reaction just does not sound like ME/CFS to me.

One night I watched a fascinating lecture on DVD about cancer - all told it took 3 hours, I was taking notes, spending a lot of mental energy - and I crashed the next day. That's a typical ME/CFS reaction.

I think it's quite possible that persons with ME/CFS may have more MCS or MCAS or POTS symptoms than other people, but those symptoms alone don't constitute ME/CFS. We really need a biomarker for this illness! Actually I think the closest we have come to a biomarker is the 2-day CPET (cardio-pulmonary exercise stress test) which shows a significant decrease in functioning among ME/CFS patients on day 2 of the test, not seen in any other illness. Persons with almost every other illness, including congestive heart failure, perform better on day 2 of the test - but not persons with ME/CFS, and that's due to PEM.

I have no doubt you have a very strong negative reaction to "sugar-coated pills", whatever the coating consists of - but I just don't think that is ME/CFS.