Very mild or prodromal ME/CFS

[SugarSquared]

Same experience here with napping. Remember being offended by the concept of a scheduled nap as a child haha

Also gradual onset like you.

I don't remember what I thought of napping as a child, but I think that before becoming sick with ME/CFS, I only napped less than 10 times in 10 years. I’ve definitely surpassed that in one year.

It's nice to meet other people with gradual onset because the main story in the media that I have encountered is that of a very clear postinfectious start.

It's a little frustrating to have this form of onset because the only medical trial in my area was Luis Nacul’s trial on LDN that was solely for those who have long COVID. I hope his team will be doing more studies aimed at the wider ME/CFS population in BC. I believe they will. I really want to take part in biomedical research.

 

[ScoutB]

It's nice to meet other people with gradual onset because the main story in the media that I have encountered is that of a very clear postinfectious start.

Yes I basically had imposter syndrome for a while. Hearing people’s stories of ups and downs and episodes and all the other confusing paths into this illness made me feel a lot less alone.

 

[leahcarn]

I'd like to share my experience with long covid because I feel like it ties into this.
I had covid in April of 2022, then noticed PEM after exertion, as well as some enduring symptoms. Long story, but the point for this purpose is that initially I had quite a high PEM threshold , and the everyday symptoms were more annoying than disabling.
Gradually over the past few years those same symptoms have got worse and my ceiling for triggering PEM has been lowered.

According to most diagnostic criteria, whether it's "50% of pre illness capacity", or "significantly impaired", I wouldn't have reached that threshold until 2025 (Jan or Nov were both significant crashes I haven't recovered from).

So that would make 2022-2025 "prodromal", even though nothing feels significantly different in how my body operates between then and now, it's only a matter of degree

 

[V.R.T.]

Same experience here

Same, my mum says I didn't nap much even as a baby.

Yes I basically had imposter syndrome for a while. Hearing people’s stories of ups and downs and episodes and all the other confusing paths into this illness made me feel a lot less alone.

I had a clear infectious trigger for my definite onset. And it's possible my prodromal phase was triggered by infection as it happened over the winter. But that was more like what people with a gradual onset report. I might fall into both camps. Its so confusing!

I wonder if for gradual onsetters its a case of it taking many smaller 'hits' to send the mechanism awry as opposed to one big one...

 

[mariovitali]

I wonder if for gradual onsetters its a case of it taking many smaller 'hits' to send the mechanism awry as opposed to one big one...

I think that this is the case. And I believe that there are many hits which we haven't come across. Organophosphates and medications such as roaccutane :


https://meassociation.org.uk/2013/0...ty-assessments-of-roaccutane-21-january-2013/

and



So if anyone of you have been taking roaccutane, I think that it should be counted as a (metabolic) hit. Have you been drinking alcohol ? Add one more. Have you been hit by EBV while doing all this ? Add one more which is a major one

 

[V.R.T.]

Organophosphates

My parents house is next to a farmers field. 'They're spraying the crops' was a semi regular refrain growing up.

But then I also had many bugs and several nasty head injuries as a young man among other things. Thinking about potential causation is madenning...

 

[neophyte32]

I grew up surrounded by vineyards in southwest France, where I still live. I did seasonal jobs and we were literally sprayed with toxic products...

I probably got my tick bite and Lyme disease in 2011, or before... or after... anyway, in 2022 I was extremely positive on my Western blot, but for IgG (IgM was also quite high, but within the normal range). The discovery of the Lyme infection coincided with my prodromal phase.

BUT I had been taking tramadol daily for three years in small doses. This molecule gave me incredible effects, incredible energy and relaxation with just a small dose... I was clearly sensitive to the molecule.

There are too many things that could explain this prodromal phase. I'm still considering the combination of tramadol and alcohol, or Lyme disease, or the 2021 COVID vaccine, which had shaken me up a few months before the illness resurfaced. It's impossible to know for sure in the end.

But the shock I'll remember for the rest of my life was mixing strong alcohol (brandy) and tramadol in January 2022. I lost the use of my right quadriceps for 30 seconds and experienced fasciculations and a burning sensation all over my body afterwards...

 

[duncan]

I probably got my tick bite and Lyme disease in 2011, or before... or after... anyway, in 2022 I was extremely positive on my Western blot, but for IgG (IgM was also quite high, but within the normal range). The discovery of the Lyme infection coincided with my prodromal phase.

In 1999 I went camping. Was roughing it in the Northeast US woodlands for three days. This was a year before my symptoms slowly started to appear.

When I got back home, first thing I did was shower. I noticed all these freckles on my legs and lower torso. I looked hard and suddenly realized they were all deer ticks, all embedded.

I tried to pick them off, but they were in so deep, and there were so many. I went to my doctor's office for help. They had a five-doctor clinic. First a nurse, then another, then a doctor, then another, until all five doctors along with two nurses were tweezering and gouging ticks out of me. At least one suspect nurse brandished a scalpel. They removed a total of 135 embedded deer ticks. In the US, this is the primary vector for both Lyme and babesiosis (babesiosis is a parasite, cousin to malaria).

Back then, the treatment and even testing protocols were to do nothing unless or until there are signs. So, they sent me home with instructions to keep an eye open for something called a bulls-eye rash. That was it. No labwork, no antibiotics.

Over the next month, I watched for a rash, but didn't see one. And that was that.

Early the following year, my equilibrium began to bail, and life was never the same.

Eventually I ended up in a research study at the NIH , where I tested positive for both Lyme and Babesiosis. By then, I'd likely had those infections for almost 15 years. I still test positive for Lyme on the new MTTT, and often am IgM AND IgG positive for Babs.

 

[Mij]

My sudden viral vertigo onset PVFS lasted 5.5 yrs, but I didn't develop what I consider PEM or delayed PEM until years later. I didn't have the common symptoms that most pwME have until years later.

It took around 6 months to recover from Covid infection. I had extreme leg muscle exhaustion(this was not PEM), and no other symptoms. It was a very different experience from my ME onset.

We all arrived at the same place so we shouldn't judge anyone.