[RD] Ask a Person with ME/CFS

[aimeeandbeatles]

Are there any diagnostic tests for ME/CFS, or is it "eliminate all the other causes first" diagonosis?

 

[Lexicus]

Are there any diagnostic tests for ME/CFS, or is it "eliminate all the other causes first" diagonosis?

The latter was what I gathered from the CDC page.

 

[Synobun]

Are there any diagnostic tests for ME/CFS, or is it "eliminate all the other causes first" diagonosis?

Not yet. Specialized studies and specialized equipment can sometimes find potential markers that differentiate us from others, but nothing consistently reliable. The microclot theory from long COVID research has some promise but nothing definitive. At this time, studies and focused investigation can pinpoint that we are experiencing physiological dysfunction (i.e., not psychosomatic or imagined), but it can't pinpoint a cause, a marker, or a realistic treatment.

CFS does get used as an exclusion diagnosis but there is actual criteria that should be followed. People outside that criteria end up with a CFS diagnosis because of the "dead end" approach, and this is commonly used as a reason for why CFS isn't a real condition.

The Canadian Consensus Criteria is considered the gold standard for diagnosis and has the strictest requirements.

 

[aimeeandbeatles]

I find it interesting that the International Consensus Criteria is the only one that doesn't require "persistent fatigue."

 

[Hygro]

I don't know the scale required for those diagnoses but I still loosely fit many/most of those

However, scale is the key. Part of my personal disability management, based on the particular level of functionality that I have, is to pretty much deny its existence as anything other than something to keep pushing against and deny affects me. This is obviously not a recommendation or universal strategy, when I was sick-sick this would only hurt me and better people don't have "disability management"

 

[Synobun]

I just had my first appointment with a new specialist. While it wasn't great to read six pages documenting my health, and hearing that I rank as one of his worst patients health-wise, I am walking away with a new treatment plan that will hopefully make life more livable. I'm starting a new medication next week, have a referral for injections, and also have other medications lined up for when I reach my target dosage for the first. We also figured out a workaround for the medication so that it's covered by the government instead of me shelling out over a hundred dollars for it every month, which will let me continue taking CBD.

 

[aimeeandbeatles]

What effect does the weather have on symptoms, if any?

 

[Synobun]

What effect does the weather have on symptoms, if any?

Anecdotally I see people have the most issues with high humidity and high heat. Most summers I rarely if ever go outside, and if I do, it's at night. The past couple years I made okayish strides at tolerating the heat and being in the sun, but nothing remotely near that of a normal person. And I still sweat like a pig.

 

[Valka D'Ur]

It doesn't help that you're in a region where forest fires are common in the summer. I have no idea how you survived the heat dome in 2021. It nearly sent me to the hospital here.

 

[E.man]

What effect does the weather have on symptoms, if any?

Anything that works the body even a tiny bit more is bad , so heat. Have to stay in aircon on hot day.

 

[E.man]

It doesn't help that you're in a region where forest fires are common in the summer. I have no idea how you survived the heat dome in 2021. It nearly sent me to the hospital here.

Fires! Well shoot.

I lost every last facking thing except the car I escaped in.

Was too sick to pack stuff and escape as well. So, disabled, homeless and then hospitalised; where they tried to make me exercise. Still screwed and housebound.

 

[Valka D'Ur]

Fires! Well shoot.

I lost every last facking thing except the car I escaped in.

Was too sick to pack stuff and escape as well. So, disabled, homeless and then hospitalised; where they tried to make me exercise. Still screwed and housebound.

 

[aimeeandbeatles]

Do you know right away when you've overdone it and are going to get PEM? How often does it catch you by surprise?

 

[Synobun]

Do you know right away when you've overdone it and are going to get PEM? How often does it catch you by surprise?

At my severity, basically anything will result in PEM. My focus is instead on deciding how much I can tolerate/risk. It does not catch me by surprise.

 

[E.man]

Do you know right away when you've overdone it and are going to get PEM? How often does it catch you by surprise?

Exhaustion can hit straight away. Result of having done too much can hit me 12 hours later too.

After 23 years I'm used to doing *less* than I think I could. It's pretty tedious and takes practise but stops being disabled in pain as much.

It's also not just physical. Everything uses energy so everything can cause problems, even being happy.

 

[Synobun]

If you are ever curious how fatigue manifests in disabilities like ME/CFS and long COVID, this article from The Atlantic is surprisingly decent. Non-paywalled link: https://archive.is/Xnut6

 

[Hygro]

It’s similar but sooooo different from depression fatigue.

 

[E.man]

It’s similar but sooooo different from depression fatigue.

Yep.
With depression you can't bring yourself to want to exercise.
Fatigue ppl would love to do *anything* and not being able to can lead to a down mental state.

 

[E.man]

If you are ever curious how fatigue manifests in disabilities like ME/CFS and long COVID, this article from The Atlantic is surprisingly decent. Non-paywalled link: https://archive.is/Xnut6

That is actually very good.

Long COVID is said to have doubled the number of ME/Fatigue ppl here and yet it's still largely ignored, which is ridiculous given that it was recognised as a nuerological disease by the WHO in 1969!

 

[Synobun]

Hello, me again.

Ren has spent the past few years making music about his physical and mental health struggles. He has Lyme disease, which then developed into ME/CFS and MCAS. He had a similar journey as the rest of us, with a whole lot of nothing from medical professionals and just gradually getting worse, and worse, and worse. He received stem cell treatment recently here in Canada* and has experienced significant remission of his symptoms.

What I particularly like about him is that he's very real about it all. Other celebrities occasionally make an announcement that they have CFS, but then they spread quack science or talk about the power of positive thinking, which has been debunked so many times by scientists that it's in the realm of Flat Earth theory. Ren's always had a raw look about it that feels authentic and relatable to me as a "fellow sufferer."

Anyway, he just released a song. Now that he's better, he's made a commitment to spreading the word about conditions like ME/CFS. First up is trying to get this song charting so that unrelated people are exposed to it. It's all about his struggle with ME/CFS and trying to survive over the years.

If you like storytelling rap, I highly recommend giving it a listen. And maybe you can help it chart by listening on iTunes or Spotify.

* I was curious about where he got the treatment from and figured it was somewhere in Europe paid privately. Paid privately is right, but it turns out he got it in Canada and has been here since last year. The treatment takes six months of pretty constant tests, IVs, etc. I kind of want to look into it. There's no chance I could ever afford it, but if the treatment "sticks" and he stays in remission... maybe there could be pressure applied governmentally to cover it and expand it.