[I’d like to precede this post by saying that I’m not a medical doctor. Even if I was, what I am about to say is termed as ‘opinion’. In a nutshell that means I’m allowed to write about whatever I want to write about, because it’s my opinion only. Please don’t rely on what I’m writing as if I am your doctor, it’s not being written with that in mind. Thanks.]
Right. That’s the legal stuff over and done with! Here’s the post.
BM – “Before ME”
ME CFS has a curious journey into the public consciousness and awareness. In 1955 Ramsay, a doctor, noticed that a particularly nasty illness was affecting staff at the Royal Free Hospital in London and named it ‘Ramsay’s disease.’
This is now known as Myalgic Encepholomyelitis / CFS / SEID.*
It is an unusual illness because no-one has yet been able to piece together the puzzle and say: “This is the cause, and this is the cure.”
So sufferers are diagnosed by elimination of other illnesses that might also be producing the same symptoms. Once they are ticked off the diagnostic list, and you satisfy the criteria for ME diagnosis, you are told you have ME.
Yeah. If it sounds a bit….unspecific….that’s because it is.
There’s no pharmaceutical treatment for it either. I.e. there’s no pill you can take to make it better. Nothing.at.all.
In the gap between the cause and the cure, sufferers often go on a self-reflective exercise of trying to work out what caused them to get it in the first place.
Everyone I’ve ever known or met with ME at some point says something like: “I had blah blah blah so I got it.”
It’s such an original and odd illness in this way. With other illnesses you say: “I’ve got blah” and that says it all.
“I’ve got MS.” “I’m autistic.” “I’ve got the flu.” “I’ve got cancer.” All of those things say everything in one word and one sentence.
ME walks in tandem with another illness first
But ME sufferers in the main, have to have something first before they got ME.
That’s what makes it so unusual and specific an illness. It doesn’t walk alone. It has a preceding factor. That also explains what causes ME. ME is, I think, caused by a preceding illness that then produces the long term symptoms.
When I first got ill with ME symptoms I also worked in a hospital, just like Ramsay’s initial patients.
There is research that shows that more ME patients work in healthcare than any other professional group (I can’t find the source for this at the moment, will post when I do. If you do, feel free to post it in a comment.) Did I get it because of where I worked?
I like puzzles, so I have spent a lot of time thinking…
Why would that happen?
Well. I’m not sure. Hospitals are notoriously unhealthy places. There are a lot of people there who work in close proximity as well. Perhaps the “virus” that predisposes people to develop ME is transmitted by close contact. Not everyone will get it, but those that do are then predisposed to develop full-blown ME, as I call it.
I wondered whether the ME virus was different from other viruses. It looks like one thing but it has a subtle difference that changes someone’s body and makes them develop ME.
I used to work closely with someone who had ME. Did I somehow catch it from them? Who yet knows.
There’s also a relationship between development of ME and upper respiratory tract infections. I’ve asked myself Why would that happen as well..
Well, what we do know that this illness has grown in incidence since the 1950s, not declined in incidence.
There must be a reason for that too that goes beyond us being able to name a set of symptoms whereas before 1955 we couldn’t.
Is that because there were ME sufferers before 1955 and we called it something else, or is there something about life after 1955 that might be provoking an increase in numbers?
This morning I read an article about the HPV vaccination and side effects
Now I believe that vaccinations are a very, very good thing. I really do. I want to make that clear. However like all medications, some people who are vaccinated will have side effects.
I got ME after having 2 bouts of flu. During the second bout of flu I was seriously unwell and ended up with a chest infection. I’m the same as many people who develop ME in that way.
I was prescribed, in no particular order
Tamiflu, Erythromycin, Clarithromycin and then, because those antibiotics weren’t clearing up my chest infection, finally I was prescribed Amoxicillin.
At the same time my doctor gave me 2 inhalers prescribed to people who have asthma. I don’t have asthma. I was prescribed Ventolin and Salbutomol – the brown one and the blue one. I was so short of breath I used them.
My doctor refused to continue signing me off sick so I went back to work. That was it. It was such an awful period of time health-wise that I can’t remember whether I felt any sicker taking the antibiotics.
From that moment onwards I had symptoms that were clearly the early signs of MECFS.
What was the difference that time?
I’ve had flu before and didn’t end up with ME. So what on earth made the difference that time…
Was it because I had flu twice in 4 months?
Was I already showing signs of having ME and I didn’t know it?
Was I predisposed to getting ME at some point and this bout of illness switched the switch?
Or was it something else….?
On the day that I rushed to my local hospital to get my finger seen to I was asked when I last had a tetanus jab. I couldn’t remember so they gave me one anyway.
While I was sitting in the Triage nurse’s office I asked about what happens if the finger becomes infected. To cut a long story short I ended up saying the word Amoxicillin, the antibiotic that cleared up my chest infection.
“We wouldn’t prescribe you that.” Was the reply.
“Oh? Why not?” was my answer.
“Because you are allergic to Penicillin.” They said, looking at my notes on screen.
“..It’s a Penicillin?” I said, shocked.
“Yes,” they replied.
I reeled. I’ve been allergic to Penicillin since childhood. It clearly states that on my medical notes as well.
Then something else floated back to me on the great sea brain fog. It was a conversation with a GP in my GP practice. She was the person who prescribed me Amoxicillin.
I was in there to see her for something different and she suddenly asked me: “Are you sure you are allergic to Penicillin? Some people think they are allergic but they are not.”
“I definitely am,” I replied annoyed at her question. “I threw up constantly and had black granules in my vomit. I remember it well. Since then I’ve had Penicillin clearly labelled in my notes.”
“Ah. Oh.” She replied enigmatically. The conversation stopped there, she didn’t explain why she was asking. Had she realised she’d once made a massive prescriptive boo-boo?
After I got home from my finger-trip to the hospital I looked up Amoxicillin and side effects
One academic paper I read said there were important questions about it’s use and effect on DNA. Gulp!
Something else said: ”Produces toxic free radicals which disrupt DNA and proteins.” OMG. Double gulp!
Attribute a cause when cause is due
Now I could attribute – which means assign a cause to – this antibiotic for the subsequent ME that I have had since but I might be totally wrong in that.
But for me this entire train of thought has raised a question.
Does the increase incidence in ME and it’s concordance with chest infections suggest that there might be a link between ME and the antibiotics used to treat them?
If that were the case, that would explain the sudden onset and the increased incidence of ME in line with antibiotic use that has also increased enormously since Ramsay first identified the illness in 1955.
© Lindy 2015