I'm asking this because this is what triggered a severe worsening of my symptoms at the time. It coincided with sporadic serum hyperpotassemia but no test or swap had been done on infections.
I need another option, I'm afraid. Yes in the run up prior to developing ME and then in the early stages. Cutting sugar out seemed to help significantly. We have a thread here somewhere where we discussed the frequent need to pass water & whether this is another symptom of PEM. It certainly seems to be the case for me and years ago I would probably have thought it was a warning sign of impending cystitis and start drinking more water and using an OTC remedy.
@Invisible Woman I added your suggested options. I first had the before option but something went wrong when editing it and now there's the periodical option twice.
I used to get really bad cystitis (before and after getting ME), but haven't had it since I started taking cranberry juice tablets daily, not for years.
I did get a bladder infection once (year 18 or 19 of ME). Antibiotics did the trick. The infection didn't affect my ME symptoms (nor did the antibiotics). I can certainly believe that any sort of immune system activation event can possibly make some people's ME worse, but such things are not guaranteed to do so. We're all different.
I'd like the addition of 'sometimes, both before and after ME diagnosis'. You could edit the duplicated one to say that. Edit: I'll do it for you now.
I was diagnosed with Interstitial Cystitis 21 years ago. My urologist told me at the time that it is much more common in people with ME/CFS. Mine wasn't caused by an infection though, but from using bath salts in my bath water.
I second @Trish's post – some women just get UTIs every now and again, it's not at all unusual. Those who have penetrative sex, even within monogamous relationships, can pick up bugs particularly easily due to the mechanics involved. Women who don't may still occasionally get them anyway, because we have short urethras along which faecal bacteria can track easily; this is especially true if we're prone to IBS-D, even when careful with hygiene. My tendency to get them hasn't changed noticeably since I was diagnosed with ME. They often go away without treatment, I only tend to call the surgery if I've had one for more than five days without any improvement.
Another useful option would be to specify one's gender, as we have rather significant differences down there! (I think that this would be ideal in all studies on ME, and probably most other diseases too.)
I'm male. For males, it's rather unusual and if it happens, it's more likely to be coliform bacteria or other pathogens traveling from the GI tract. But it could be related to the metabolism as well such as from toxic levels of certain intermediates of the sugar metabolism, or from hemolytic anemia (which can also be caused by the former). @Trish @MeSci I think this would be a great addition to the survey feature if we were able to specify additional questions on gender etc. or a tag-based mechanism in addition to single-choice questions. This was the suspicion of my urologist as well. But retrospectively, there was no basis for this.
You could start again with half the questions labelled male and half female with 7 options for each group, but honestly I don't think it's worth doing that. Our members polls are not in any way scientific - more an opportunity to open a discussion and sharing experiences. On that basis, adding extra complications to the poll feature of the forum, even if it were possible, is not in my view justified.
I see. It would also require elevated privacy protection and consent because linked data allows profile creation and then, it wouldn't be completely anonymous anymore. It's best this way. However, I could create GDPR-compliant surveys on an external tool and reference them in a post. Would this be endorsed by the forum rules?
I guess theoretically it would be OK and up to you, but what would be the point? Research that seeks to discover, for example, whether urinary tract infections are more common in people with ME/CFS than those who don't have ME/CFS, would have to be set up properly with appropriate epidemiological sampling methods by people with access to a representative sample of patients, and approval from ethics committees. That's way beyond what individual patients or even groups of patients can do. If you just want to get a bit of an idea whether other patients have experienced similar symptoms to yourself, a forum poll is a way to invite people to join the discussion. Inevitably those who have experienced urinary infections are more likely to participate in a poll about them than those who haven't, so it tells us nothing about prevalence.
It's not about this post in specific. I have some other questions that are more complex. I don't have the endurance to set up a proper study at the moment and I'm not up to drawing conclusions. I would like to address certain subgroups and cross-reference multiple questions to get a better idea of patterns within these subgroups. Only if something stands out in one of the surveys, I would consider a proper personalized follow-up, which is theoretically possible as independent research. Ethical review could be done by any institute.
An important topic for me. Repeated UTI’s during 2012-13 > bacteria resistant to an antibiotic > Sepsis 30.8.2013 > Diagnosis of ME/CFS Previously mostly ‘recovered’ from a PVFS event in 2001.
This thread on Interstitial Cystitis may be of interest, Chronic Urinary Tract Infection or Interstitial Cystitis?
My partner has ME and has a very long history of utis’ every six weeks. The usual antibiotics from the gp became ineffectual or caused hives. A chance meeting on a plane with a consultant led to asking her gp for something called Hiprex. The gp really did not want to prescribe it at £16 a month but eventually decided he had found this new treatment! Miraculous and no issues for 4 months. Interestingly her ME has improved over the same period. Hope this helps others.
I've just looked up the name of the drug, and I'm pretty sure it's the same stuff my nan swore by 50 years ago! She used to buy it over the counter, but obviously things might have changed—anyway, it worked well for her too.
