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Feeling frustrated. I can't follow the instructions to activate the kit ( I did the swabs this morning and need to send off today). I don't know if I have to pay more money to send back either. Can anyone walk me through 1. How to activate kit? I can't see anything on the page where to...

Yeah, I'm glad the timing has been perfect for me as mine are bad at the moment and exactly the sinus problem infection (whatever) I have had all the way through (all the years of my ME) so it will be interesting to see the makeup of it. All the back of my nasopharyx area feels sore and can...

They must have good preservatives in the solutions. I'm thinking I might do my swabs first thing in the morning, within a half hour of waking. Sometime this week. I haven't done it yet. What time of day is everyone else on this thread doing their swabs?

I noticed the postal address on the packet read San Francisco. I thought it was coming from somewhere much further inland.

12 days. Pretty good. Received it this afternoon.

I had a lot of nausea and different types of awful stomach in my severe years. I don't get these types now, just nausea mainly from headache. When my ME is very severe and I am bedridden, weak and cannot eat, I get diarrhea. Would love to know what changes cause me to go through these episodes.

I wouldn't mind doing this three years in a row to see if I am getting the same infection all the time or whatever it is that feels like infection. Remember to write down that you have ME/CFS for their data. I don't know if they ask whether you have an illness or not.

Wonder how long it will take to get to NZ. Can you guys let us know when you receive your test kit?

Could do.

Thanks for putting this up @adreno I've just ordered.

@Justy I think so. I have experienced the excessive laughter, crying, high emotions. I don't like remembering my severe years and the anger, shock, despair, terror (of severe physical symptoms I was experiencing). The heightened nervous system made all these emotions felt much more extremely...

I haven't finished reading this but needed a break because I feel emotional reading this. He said some things I needed to hear about the microbiome and how changes in microbiome could alert the brain and cause sickness.

How does one describe PEM in the severe years? Layers and layers of PEM is only way I can describe it. I couldn't bear to experience those full-on years again.

Yes, I've experienced the different delay times as well. It all depends on what the exertion was (gardening, mental exertion, noise, etc. to name a few, is an exertion that brings on PEM quicker than other exertions for me). Then there is the 'accumulation' PEM that can happen over a period of...

Thanks for mentioning this @zzz I must read through the ICC definition again and refresh my memory. Good to see ICC has this 'Pene'. I hope they describe a weakness + exhaustion but I will check if they do. The weakness part should also be in the description.

I wonder if it is neuro-immune induced weakness that some of us are feeling as well. When my ME is severe, or I have accumulated too many "over-doings" over a period of time I experience as part of the PEM experience 'what feels like' a neuro-immune weakness. I barely can look after myself...

I saw a lady take a bad fall last year while walking with the Nordic poles. They tripped her up. So be careful with them. Anything we add to our walking like sticks, shopping trundlers, add risk of bad falls. Just a reminder to be extra careful when using these.

I get the drunk-like swaying as well. I have to concentrate while walking (although, I am so used to dealing with this now after 20 odd years of it, mostly since severe onset, 16 years ago). I use a shopping trundle a lot these days and I find leaning on it really helpful for stability. Wish I...

At the moment it is mornings and evenings for me. In my severe years it was only in the evenings where I felt a hour or two more energy (not every day though). I had a strange weakness in my legs in the severe years which really worried me because it was a very unusual feeling of weakness. To...

. I've changed my vote to 'secondary progressive' because my ME 'remitting' is really just a slight easing in symptoms due to resting.