CUSS

Coincidental Unrelated Symptom Survey, a proposal

Some years ago, I asked a consultant gastroenterologist advisor to our charity whether there was any link between my occasionally occurring deafness and my reflux. He said it was purly coincidental, that people who have been diagnosed with one condition will want to attribute any other ailments they may experience to it.

However, shortly after that, I found research that confirmed my suspicions and, using a little reasoning, the link became easily apparent, as I described in the chapter on Extra-Oesophageal Reflux in the Down With Acid encyclopaedia.

Many people claim, or ask me whether their symptoms may be due to reflux, Barrett's, acid or the medication. Frequently I consider they're coincidental and unrelated. But what if I've missed something, like my gastroenterologist colleague? Are there any symptoms or conditions that may be related that need further research?

The proposed CUSSurvey aims to find whether there are frequently experienced symptoms amongst refluxers that have been overlooked or may merit further investigation.

Process

  1. Initially I wish to collect a range of symptoms that are probably coincidental and unrelated, which I can achieve by a simple question on the Facebook Barrett's Esophagus Awareness forum. Answers may be public posts or via email or Facebook messenger to preserve privacy/anonymity.

  2. Sort and collate the responses to provide a list to feature in the survey.

  3. Create a simple Survey (using Survey Monkey) to assess prevalence of the reported symptoms. (Limited to 100 responses.)

  4. Report findings.

  5. If the CUSS report shows anything that may be considered significant, it will be disseminated via social media in case anyone wishes to research any findings further.

This chart shows the commonly associated symptoms of acid reflux.

If you are a refluxer and wish to participate in round 1, please email chris@chrisrob.co.uk or message me on Facebook if you experience symptoms that are not listed above or are obviously due to a possible related condition such as IBS, hyperthyroidism, Sjögren's, etc . Please do not add extra information, just a single word or phrase is all I want for now. If I need more, I'll request it. Please entitle any emails, CUSS.

If I consider your reported symptom relevant, I will include it in the proposed survey (round 2 above). I will keep any information you provide private. If the survey is then published, all responses to it will remain totally anonymous.