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My Current Understanding of ME - Part 1: What The Hell Hit Me?

So, I have only written one blog so far, and it was a little obscure (it was about Post-polio Syndrome), but hopefully this one will be a bit more relevant. I have been putting it off writing it, but it seems others have similar ideas/areas of interest to me, and I want to get the scoop first (at least on PR)! I should say that all of this has been pieced together from PR (e.g. other members´ contributions), ME physicians/researchers´ videos on YouTube, and Pubmed, with an assist from Health Rising.

I thought about writing a rather brief outline of what I understand ME to be, but I barely have the patience to read scientific articles, never mind to write like that. Besides, that would require me to get all my thoughts in order before I start, and I just don´t feel like doing that, okay? Instead I will divide my thoughts about ME into four separate blogs, one on each of the crucial issues regarding ME (as I see them). In doing this, I will try to emulate the readability of Jaime S´s and Tired Sam´s blogs (amongst others).

Okay, no more putting it off...


Part 1: What The Hell Hit Me?

I´m talking infectious-onset here, people! I have been reliably informed (by Prof. Edwards) that the symptoms of lupus can mimic an infectious disease, but it is not clear to me that those symptoms would then be expected to diminish subsequently, as seems often to be the case in ME. I therefore propose that the ´flu-like symptoms´ commonly observed in patients who have just come down with what will later be diagnosed to be ME, are, in fact, a result of something like the flu. Or, in my case, not that like the flu. The symptom that started it all for me was appendicitis-like pain. I went to a doctor with this, but unfortunately I wasn´t able to ask the doctor any questions (since I don´t speak Vietnamese), and therefore I didn´t understand why I should take antibiotics for what I thought was appendictis; I will hopefully show later that my ME may have resulted from not taking an antibiotic.

So I went home and did nothing, and within a few days I had new symptoms: a sore throat with phelgmy cough and sharp pains throughout the abdomen, which increased if I pressed on where the pain was. I was prescribed a few courses of antibiotics for the sore throat, and had an Monospot test for I.M, which was negative. The illness continued and the initial symptoms were replaced (to varying extents) by sore joints and Reiter´s Triad (look it up, this is a family blog). The latter was not a diagnosis I made post-facto; it resulted from one of my work colleagues suggesting that I might have arthritis: when I looked it up, I found an entry for Psoriatic Arthritis, one of the symptoms of which is Reiter´s Triad. It turned out later that if I had just looked at the next entry on the list then I would have had a decent chance of working out what was wrong with me.

But I didn´t, so when I got back to the UK the only suggestion I had for the GP (who definitely could have used one) was that I might have Psoriatic Arthritis. The GP gently suggested that I probably didn´t, since I had neither a.) psoriasis, or b.) arthritis. So I was tested instead for loads of other things I didn´t have, such as Multiple Myeloma (I was quite glad that the GP was wrong in this case), and then left to deal with my illness on my own.

Ok, I will pause at this point (I think we all need one) for a quick quiz: what (for those who don´t know my story) would I end up being diagnosed with by KDM? And for extra points, what was the next entry in the medical dictionary?

If your answer to the first question was Lyme Disease, then you were...wrong! The answer was Chronic Yersinosis (the clue was the symptoms). The answer to the second question was Reactive Arthritis (this time the clue was the alphabet).

Alright, that word ´chronic´: I am aware that some people aren´t comfortable with its use before a noun referring to a bacterium, so let´s concentrate for now on the second part, the Yersiniosis bit. The other reason for concentrating on this is that my current understanding of ME does not require anything to be ´chronic´ (although it probably helps).

At this point, you are probably (and quite rightly) thinking ´that is all very interesting, but what has it got to do with me?´ Well, it turns out that our good friend Ian Lipkin has been pondering the same thing:

´The association between ME/CFS and IBS could arise as a result of overlapping pathophysiological mechanisms that contribute to the development of both syndromes. For example, infectious gastroenteritis caused by bacterial (Campylobacter jejuni, Salmonella enterica, Shigella sonnei, Escherichia coli 0157:H7), viral (norovirus), or protozoal (Giardia lamblia) pathogens increase the risk of post-infectious IBS [25]. ME/CFS is often reported to develop following an acute infectious illness, and post-infective fatigue states have been reported following bacterial, viral, and protozoal infections [26]. Acute giardiasis, for example, is associated with both increased risk of post-infective IBS (relative risk = 3.4 [95% CI 2.9–3.8]) and increased risk of post-infective chronic fatigue (relative risk = 4.0 [95% CI 3.5–4.5]) [27].

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5405467/

If you had to choose one bacterium that causes enteritis to add to those mentioned in the quote, Yersinia Enterocolitica (hence the name) would be pretty high up the list. Interestingly, it would be fourth bacterium on that list to trigger Reactive Arthritis.

How do I think Lipkin sees the possible relationship between infection with these bugs and ME? Tune in next week (or whenever) and find out!
Likes: Helen

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