The Concept of ME/CFS

I think it is simpler than that. I am talking of the generalised unpleasantness that gets called 'fatigue' or 'exhaustion' or 'bleurrgh' and fades into nausea for some, pain for others and 'my arms just won't...' and so on.

 

I'd always thought of the bleurrgh as a separate thing on its own, with nausea, pain, etc. separately identifiable - as a collection of individual symptoms, rather than one single symptom that has different manifestations. Not sure about the diagnostic/research advantages of thinking one way or the other about this.

 

There are a couple words that may lose their conventional meaning with ME/CFS. Balance/vertigo/dizziness come to mind. Neuropathy. Brain fog - yuck, but it's accepted (personally I'd opt for cognitive decline and the erosion of clarity). Ditto for malaise, not happy with it.

But all of these really make it through the edit sift.

One that may not, and yet seems fairly common, is the "poisoned" feeling. How does one feel poisoned? Hard to describe. At its best it's a constant hot steam inside of me; at its worst, it is a persistent acid-like burning that consumes every minute. I feel it always. I can taste it sometimes. It's inside my chest and in the bottom of my belly. Me eyes burn from it, as do my thighs and shoulders.

Yet I've never been poisoned, and I suppose most readers will not have been, and so i'm not sure what truly being poisoned feels like.

Nevertheless, it's a thing for some of us, and it's a notable one for me.

 

I've only had it for short periods, but I came up with the same word long before the internet. I've found it's best not mentioned to most medical professionals, but it's very descriptive of how it feels.

I really like the idea of encouraging the use of people's own descriptions. If we use some medical terms it's possible we're more likely to be misunderstood or disbelieved, because doctors associate them with a specific set of underlying causes that seem unlikely to be at play in ME/CFS.

 

Thank you.


I haven’t read this updated version yet.


But skimming the first section which I think remains more or less the same as before I am uncomfortable with the section on the name the ‘transcending’. I feel like the way this is phrased draws a false equivalence between patients views on ME and doctors views. This reference to a patient’s positive contribution is undermined by the fact that it requires transcendence.


I am not suggest that patients have had everything right, but that they didn’t ought to need to be, where they are wrong we know who’s leading them on. So this is a wrong doctor on wrong doctor situation with ME and CFS.


Even there the doctors who are trying to come up with a biological explanation and being wrong, are sometimes in it for the money and exploitation, but often just trying to help or at least speaking kindly to patients when they see them. Whereas there is a wall of not trying to help and abuse on the other side.

I haven’t offered alternative wording because I think only you would know what is most important about the point.

But if there is a way to say this that is no longer loaded on the patient shoulders, or if to separate two points a little and mention patients having certain views as something doctors need to get over and see past, rather than that new name becoming necessary because of patients, because it wasn’t patients who put these terms on records themselves.

 

Re "Long term ME/CFS is recognised after EBV infection, but it may not be merely a longer version of a ‘PVFS’ category that does not include ‘crashes’ and sensitivity to light and sound."

Is the first 'not' erroneous?

 

I’ve had long periods where it feels like my body is shutting down. But again it’s one of those things medical professionals don’t respond well to hearing. There’s probably a whole language of these terms we have been taught not to use by negative reinforcement.

 

Any formatting/layout problems with the pdf are my fault and probably best ignored. I just did a quick print to pdf from my iPad to share.

 

I finally had the energy to read it. It was a fun, and thought provoking read. I really enjoyed it thanks @Jonathan Edwards.

My non-professional opinion is that there still is value in a stricter diagnosis criteria that does not rely on “fatigue”, which is what the ICC seemed to be trying to do, but I completely understand that it was based on assumptions that haven’t been proven.

 

Perfect Trish. So we even have a citation (which I have used before).

The first not is right but the rest of the sentence is hard to parse correctly so I will modify it. Thanks.

 

This is really excellent. A couple of very minor things:

Based on the format of the other references this should be (Edwards, 2024). There's no corresponding reference.

Did you mean to include FND as synonymous here? (There have been various other concepts over the years, including chronic mono and "CFIDS" as well.)

There's some errant bolding & out-of-place punctuation in the reference section.

 

Depending on the audience, which I assume it British, from what I read the common British English equivalent would be 'poorly'?

On our side of the Atlantic it's generally closer to feeling unwell, but really there isn't good vocabulary for this as this has to span the "blurgh" of a cold all the way to a bad flu or severe ME. It's a significant issue that I think overlaps with the "hard to describe" problem. This is actually why it's important for patients to work their way through social media and see descriptions and words from other people who at least get close enough.

Not everyone is good with words, and even then it doesn't mean being good at describing this kind of odd subjective experience, and then there's brain fog that muddles things further. Worse still is explaining it to people who not only have their special vocabulary, but can oddly trip on some perfectly fine words for weird historical reasons and/or gaps in training that are similar to people who are blind from birth having no useful vocabulary for colors.

But of course many MDs think this is how people get those ideas in their heads, when really it's just the process of figuring out how to describe things that are difficult to describe, and relying on the wisdom of crowds for the few who pulled it off, even if partly. People do the same thing all the time for other things. Hell, it's the entire basis of "let me teach you about your subjective experience of your illness", but it only works one way in medical culture.

Most of it seems to be down to the rejection of feeling ill as an accepted term, which is about as useful as rejecting the use of the word red, then asking someone to describe something that is red. I don't feel fatigue or tired. I feel ill. Or sick, but that's too often used for nausea and vomiting, which is weird because it's a generic term.

 

Congratulations on your 15,000th post, @Jonathan Edwards !

 

I don't like the use of 'bluerrgh' to describe how a ME patient can feel.

 

It can be used as a slight against us as well.

 

A few more tweaks below.

 

Thanks again, @Jonathan Edwards.

Can just see one thing on p. 4: 'I would suggest that the first lesson to learn is that whatever confusion has arisen it is our fault, not the patients.' - Should be '...patients'.' with an apostrophe.

 

Thanks @Sasha.
Am I allowed to assume that you are the ultimate proof reader and I can post it online!!?
I had better go over it again I guess.

 

This is a really impressive piece of work—thank you!

I didn't chip in before, but I saw another small proofing thing. It's just a few missing spaces in the fourth set of references on page 5. Corrected here for easy cut-and-paste:

Carruthers, B.M., Jain, A.K., De Meirleir, K.L., Peterson, D.L., Klimas, N.G., et al. (2003). Myalgic encephalomyelitis/chronic fatigue syndrome: clinical working case definition, diagnostic and treatment protocols. Journal of Chronic Fatigue Syndrome 11(1):7-115.

I assume the paragraphs aren't spaced for a reason connected to the website's formatting?