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I don't know if this question has been asked but can you distinguish which of the two ME types are affected by their ME being triggered by a cold or virus and then also can be seemingly switched off for time by a cold or Covid. Would this occurrence still apply to both types of ME or one in...

I also wonder if when having a cold or Covid the opposite can happen. I didn't feel like I had ME for the first 8-10 days of Covid last year.

This rings bells from my study 30 years ago of the nervous system. Can't remember it all now. So this could be what adds to triggering PEM in muscle? The alarm system in play?

I've just been talking to my relative who had been on interferon and asked if he could remember whether he had worsening of symptoms while working full time during his treatment. He said he didn't think he did. He said his symptoms had felt just the same, awful. I remember how hard it was for...

Sorry, I think we are talking about two different things. I'm not talking about treatment or testing here. I don't understand any of that side of the conversation.

I think there is an underlying problem first and an infection switches things up and introduces PEM? I don't know, just throwing thoughts and experiences out there. It could be a number of 'hits' that further things.

Seems to contribute to switching ME on for many of us. There could be an underlying start to ME that smoulders for years and then gets fully triggered by a flu etc.

A close relative was having interferon treatment for Hep. C the same year of my very severe ME onset. His symptoms sounded like mine. I remember thinking that his symptoms would be turned off eventually, but mine were uncontrolled and no help in sight. I did post about this year's ago on PR.

I always forget to mention that I sanitize my hands a lot when out too. So both measures have given me good protection.

This proves that what I am doing has been working very well for me the last 3-4 years. I wear a surgical mask with a cotton mask over top. I haven't had a cold at all which is unheard of for me. I caught Covid last year for the first time but I am sure it was from my sick neighbour and I was...

Exactly this. They don't get it. You can tell they are so set on their point of view. Always this talk of 'fear'. We are not children riddled in the fear they talk about. Above quote. .

PEM gives me insomnia. So, I get the after effects of insomnia as well. There is something in PEM affects the sleep mechanism. So a before sleep problem rather than an after.

I gave myself extra work this evening adjusting the time on the two clocks in the house. A hour later I realised I had moved them both forward a hour instead of back. Down they came again and had to wind and wind them back two hours. I can't wait for the day when everyone decides to keep one...

Update. I stopped taking diclofenac about 2 years ago after weighing up risk. I now use ibuprofen for severe headache. Usually I start with panadol and a hour later add the ibuprofen.

Yes, there is so much to reply to in your posts @bobbler and I am not going to be able to do that but the layering factor is is constantly happening in the severe levels. I call rolling PEM and gets nastier with delayed.

Thanks. I'm aware my take on things could be wrong so I continue to try to understand.

I have OI with my ME so there is a blending which I can't say that I can figure out well what is coming from the OI and what is coming from ME PEM. I do know that my OI severity travels with my PEM severity mostly though. I've always said ME is PEM. So symptoms should be graded by the way they...

I personally would prefer delayed PEM to be highlighted as Delayed PEM. Instead of just calling it PEM. I would also like PEM to be used in 'Immediate OI PEM, rolling PEM, and we could add a Flare PEM that does not proceed to the delayed PEM. This is more continuous and can then be explained...

@Kitty I was thinking yesterday that PEM terms are like an advanced education. Those of us who have experience it know the experience of the types but it can be so difficult for others and newly sick to grasp.

We appreciate you Trish. Thanks for all your efforts with this.