Tonsils, Appendixes, Gall Bladders and ME/CFS

So forgive me if this is a patently stupid question or has previously been discussed. I’ve looked and don’t see anything in archived posts here regarding the question I am about to ask below. Likewise, I can’t find any mention of related research with a google search.

My question is this. Is anyone aware of any research into whether ME/CFS (or long Covid for that matter) is more prevalent in those who have had one or more so-called useless organs (tonsils, appendix, gall bladder) removed?

In looking at the work of Davis, Phair, etc. we see many folks hypothesizing a bi-stability or altered steady state as the potential underlying mechanism of ME/CFS. I find it odd that evolution would result in humans having the potential for a bistability that causes such a terrible disease and that seemingly has no means of self correcting or resetting.

Likewise, I’ve always found it dubious that medicine concludes several organs are useless vestiges of our past. This seems like a logical leap made only
because science doesn’t know what these organs do and we can generally live normally without them.

Given the lack of real reason for concluding these organs are useless, it’s not surprising to me that research continues to trickle in pointing to these organs having uses, mostly related to immune function, that are probably conditionally important in circumstances (infection disease, etc) that are not frequently encountered by most folks today.

Combining the two ideas above, and readily admitting I am a non-scientist simply thinking out loud, what if one or more of these frequently removed organs is involved in helping snap out of whatever causes ME/CFS? To conclude, my question is simply has anyone ever looked into whether removal of one or more so-called useless organs is associated with an increased likelihood of developing ME/CFS, or perhaps more accurately, inability to recover from ME/CFS.

 

I have all the pieces still attached. I had a grumble in my appendix as a teenager but it passed.

 

I am not aware of any such research, but like other infectious diseases, tonsillitis, appendicitis and cholecystitis caused by pathogens may well trigger ME.

As for the appendix, I have anecdotally heard that it serves as a reservoir of good bacteria for the gut. I do not know whether this is accurate.

 

It would be hard to study the relationship with tonsillectomy in the UK, as for a couple of generations of people, it was a very common childhood procedure. The other two ought to be easier, but whether it would be productive is another question.

If there did seem to be a link in some cases, it'd also be difficult to work out whether the loss of a body part or the surgery to remove it were the culprit.

Evolution's created all sorts of idiocies, though. There are—or rather, were—organisms that can't travel far, and are entirely dependent on a single other species that is itself vulnerable to environmental change.

If you think about it, ME doesn't really matter any more than cancer does in evolutionary terms. Neither disease has any impact on the survival of the species, but it might not have survived without the vulnerabilities that make them possible.

 

I know its not 'research' but i'd be curious to see results of a straw poll

 

This is an interesting area. Does the DecodeME project gather data through the online form on past hospital operations like removing appendixes or tonsils? If so, it would be easy to compare the incidence in an ME cohort with the average population.

 

In my own n=1 experience, I never had any of my bits removed but I still got years & years of severe ME.

I tend to have a feeling it's possibly more a genetic tendency than to do with tonsils, appendix etc. My mother had some weird undiagnosible illness for the last few years of her life which was at one point diagnosed as 'CFS' but nobody was ever sure what she had. (Whereas my father has been in excellent health for all of his 93 years - wish I'd inherited more of his genes instead!) I think both parents still had/have their appendix, tonsils etc.

 

Sorry, no, we don't.

 

I have also wondered if a history of antibiotics might be a factor.

But, I also think given that antibiotics were handed out like candy in my formative years, and even much later than that, likely the majority of people have had them. However, perhaps amount and how frequently used might be factors.

 

Interesting topic. In the UK with tonsils for example there was a phase mid 20th century for removing tonsils more readily (I don't know where the line was as issues with these have run in my family) in certain demographics/part of the country (I say that as apparently decades before that people used to have all their teeth removed 'in case').

Then there was a huge swing-back the decades after, where getting tonsils removed - even when they were shot was made very hard indeed. Which was at least 'just as problematic', but if you were one with tonsil problems you'd say far more of an issue.

My generation has been vastly affected by that policy, and I know a lot of people who have experienced significant issues from having to have them removed as adults and having significant health damage from the delay, lost life from all the illness that could have been avoided, and having them out at a less optimum time when adults. Once mine were shot they were shot and I was permanently ill with stinky what was probably to the body some sort of poison dripping through my throat and system. So not ideal from an immune system perspective either.

I also know a family member died of a quinsy some time between the two of these generations. Yes, just a quinsy (septicemia, as it was then called, eventually involved)

So I suspect they are good areas to study - I also get worried by the historical dichotomic-approach that has historically left some as collateral damage, rather than the nuance of really looking into the fact it is unavoidable for some, whether there is a good/better age point (sooner rather than later I think looking at the many I know through my family and ages they had theirs out and avoiding long-term health issues), but also if there should be something done or added in to help those who have needed these aspects removed.

Probably a fore-runner of the stupidity of Evidence-Based-Medicine: one has to assume they studied all kids instead of looking at those who did get lots of tonsilitis and bound the latter group to naff conclusions based on the former dominating the stats.

 

I still have my appendix, gall bladder, and tonsils. And I've had ME for 31 years now.

 

I have always wondered if it was antibiotics that was the start of my ME journey. I had two very badly infected teeth that I didn't know were infected until having a really bad toothache one night for about two hours. I was put on a "schookum" dose of Penicillin (my doctors word) and three days later I was hit with instant ME out of the blue and here I am 31 years later still waiting to get better. On that third day I woke up feeling absolutely great and that is when I realized just how long I hadn't been well but just hadn't realized it. I was so full of energy which I hadn't seen in a long time. That night was when the ME hit.

 

It is a very good question and worthy of a research proposal, IMO. I do remember this being discussed years ago on another forum, but I can't remember much about it. I have not found any research into associations between tonsillectomy and ME or long COVID, however associations have been found between a history of tonsillectomy and risk of irritable bowel syndrome (Wu et al), autoimmune diseases (Ji et al 2016), and with some COVID-19 symptoms (but not others) (Capriotti et al 2021),

Wu et al state: “Previous studies have found a dramatic decline in pre-existing antigen-specific IgA antibodies in the nasopharynx after tonsillectomy [3], suggesting that the tonsils are critical for generating mucosal immunity.
Furthermore, the tonsils are also considered to be a reservoir of T cells in addition to the thymus [4].
Previous studies have examined the association between antecedent removal of tonsils and the risk of respiratory disorders [5], infectious diseases [5], asthma [5], premature acute myocardial infarction [6], autoimmune diseases [7], inflammatory bowel disease [8, 9], and cancers [10]."

I was one of those mid-20th century children who had a tonsillectomy.

 

Fascinating- I was one in the later generation where tonsillectomy was avoided (seemingly no matter how ill you were). EDITED

Just led to many peers having written off decades being low-level ill between awfully ill due to them and eventually having to have them out privately as adults once they were shot (still even when they were that ill the options weren’t there and it was scrabble round to save them stuff) and often with rushes back into surgery afterwards. I guess having such bad tonsils for so long after they should have gone plays a part there.

I’d be interested in someone going through that list and looking at the actual people who got these and asking them whether they felt theirs should have been removed or not to find out whether just the underlying bit causing the autoimmune or whatever is the commonality vs the tonsils in or out (misdirection) but also whether there were timing issues or approaches that worsened outcomes one way or another.

is this just another part of medicine where the fixation on body part depts and what is visible meant they missed the whole point which is more system cell type level science being needed?

 

I still have all my useless organs.

 

My bolding...

I had my tonsils and adenoids out over 50 years ago, aged 10. The doctor who referred me for the procedure had a simple rule. If a patient had tonsillitis three times in a year they kept their tonsils and adenoids. If they had tonsillitis four or more times in a year he referred the patient to hospital to have tonsils and adenoids removed.

Since I was treated with antibiotics each time I got tonsillitis it can't have been good for me in the long run to keep having it. I've read that doctors no longer routinely prescribe antibiotics for tonsillitis on the assumption that the disease is usually caused by viruses. (Do they test to find out one way or the other? I don't know.) I have no data one way or the other about the bacteria/viruses issue, but I suspect that some children who have tonsillitis probably do have a bacterial infection which must make them extremely ill if they don't get antibiotics.

Getting my tonsils and adenoids out was a huge success for me. I had three bouts of "tonsillitis" i.e. a septic throat infection in the 12 years following my tonsillectomy and have never had anything similar since.

I do have long-term gut problems. Whether they were caused by the frequent antibiotics as a child, I will never know.

Regarding getting all the teeth removed, one of my aunts tried (and failed) to persuade me to get all my teeth out when I got married. She'd been given the money for getting her own out as a wedding present, and I think her husband got all his teeth out at the same time too. It was considered to be worthwhile because it would "save people from having problems later" and was considered to be a good investment and something to make life easier.