What symptoms of ME that you personally experience is (a) not shown on your medical file and/or (b) not in the ME literature.

[Forbin]

Every now and then the sheets on my side of the bed turn blue. Bottom sheet worse than top sheet and it's roughly in the shape of my body.

Looking online the closest I can find is bacteria on the skin causing this.

May not be connected, but there is a condition called chromhidrosis in which sweat takes on different colors (including blue). The condition is considered benign, but it can obviously be a source of concern to the patient.

https://www.medicalnewstoday.com/articles/chromhidrosis

 

[rainy]

@Samuel I thought this thread was very interesting, because ME patients often have many symptoms that doctors and researchers are not interested in, and therefore might not get recorded anywhere. If it weren’t for patient forums like this, I wouldn’t know that many other patients also get a hoarse voice when they’ve done too much, for example.

For me what makes a possible symptom of my ME is whatever symptoms that occured in my life after I got ill with this thing that the doctores labeled ME, which they havent been able to find another cause for.

 

[Kalliope]

I haven't yet read this thread, but am looking forward to.

I've been pondering about something mentioned by a Long Covid patient in the recent Yahoo!life article A COVID-19 long-hauler details his year of 'hell'. He wrote he's "often hit with a sense of jamais vu, the big sister of deja vu. I forget friend's names and often repeat the same story in a conversation".

I've never heard of jamais vu before, but Wikipedia tells me it means "never seen" and its description sounds like a very familiar feeling:

Often described as the opposite of déjà vu, jamais vu involves a sense of eeriness and the observer's impression of seeing the situation for the first time, despite rationally knowing that they have been in the situation before. Jamais vu is sometimes associated with certain types of aphasia, amnesia, and epilepsy.

Jamais vu is most commonly experienced when a person momentarily does not recognise a word or, less commonly, a person or place, that they know.[1] This can be achieved by anyone by repeatedly writing or saying a specific word out loud. After a few seconds one will often, despite knowing that it is a real word, feel as if "there's no way it is an actual word".

This is similar to a sensation I often have, and which I've placed in the big bag of "brain fog". It makes it difficult to write things as I often need to google words and names I'm actually very familiar with, in order to double check that they really are correct. It can also happen in conversations, but it's easier to hide then.

If my sensation fits with what is jamais vu, then it's nice to at least have a name for it.
Does it ring a bell for some of you as well?

 

[Invisible Woman]

This is similar to a sensation I often have, and which I've placed in the big bag of "brain fog".

This is fascinating, isn't it?

One of the problems with cognitive problems like this is that they happen when we aren't in the best position to observe them. So it's very hard to describe or recall what's happened.

In the early years I had doctors and people who were genuinely trying to help jump in to describe it for me, unintentionally getting it wrong.

I knew "brain fog" or "problems with memory & concentration" weren't even coming close to describing what was happening . Especially when those descriptions were being put down to either simple fatigue or low mood.

It's like we each have a small piece of a very large picture puzzle being able to discuss it reminds me of symptoms I forget until they happen again or can't describe.