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Same here @Paulie I ended up not wearing anything on top to bed after about 7 years into ME. I would wake up boiling hot and it feels like an intense trapped in dry heat. It's not pleasant. In my severer years of ME I did get the night sweats often but the waking up boiling hot is still...

I've just emailed them and put my name forward.

It's been nearly 9 months since my last Covid booster. They are rolling out the next Covid vaccine the beginning of April here in NZ. I have an op date for 14th April and I want to have the best protection possible while in recovery. Just hope it all goes well with the vaccine. I've never had...

I'm still wearing a mask when I go out. I do everything possible not to catch Covid. Whenever I touch anything when out I sanitize my hands, even the coffee cup handle and spoon at the cafe as an example. I haven't worn the more reliable types of masks. I use the surgical mask that I knot on...

I think the gut and other areas of microbiome problems have been caused by an immune reaction and it has seized the microbiota changing it permanently. It can't return to the original composition. I can't see how transplant will turn things around except for very temporarily. The microbiome will...

I think from a post I read of JE is that it is something the patient cannot manage meaning it is involved in the PEM mechanism? I could have misunderstood though. I agree with you though. What you described is how it felt to me. I have a few examples of the extreme PEM of very severe ME that I...

Interesting, I am the opposite in PEM, loose bowels. Same mechanism but different expression? Something I noticed in my very severe and severe years was every time I put on weight, the weight would trigger a bad PEM and I would lose the weight I had gained. The ME had made me underweight at the...

Just to elaborate a bit more on this regarding severity. The stages of severity in the shower with gait from milder end to severe. 1. Stand normally. 2. Legs/feet apart. 3. Legs/feet further apart. 4. Legs/feet much further apart but also having to tighten the muscles in my legs with knees bent...

I've had a lot of change in gait with ME. In the shower my legs will automaticlly spread wider apart for balance in response to how much imbalance I am feeling. It is a gauge of how I am with that part of my ME. The further apart the worse I am. Walking into large high ceiling buildings makes...

I remember at very severe ME I was so sick I couldn't even bear to hear the word exercise. I was getting PEM from the very simplest of tasks. I was constantly in PEM and PEM on top. I'm now at moderate and able to do more. PEM is not severe and there are far less symptoms but I am still very...

@SunnyK I've had 3 generals in the last 3 years and I have another op coming up in March for a hysterectomy. None of the operations affected my ME adversely. The only thing I detest with generals is the nausea and lightheadedness when I come out of the anaesthetic. I ask for a quarter dose of...

This morning I went to get my 5th dose of Covid vaccine and was told at the pharmacy that there was no 5th dose. So it looks like from now on I am not as protected. Has anyone heard whether there will be another round of vaccines in the near future? I'm in New Zealand

I did manage to get a prescription for LDN about 7 years ago but I did not get it filled. I was concerned about severe side effects and just not sure whether I was doing the right thing experimenting with it.

I haven't caught Covid yet. I double mask when out and sit outside if I have a coffee. Always take sanitizer with me. I'm due for my 5th vaccine on the 14th Jan. I've decided that I will do all my relative visiting (stays) 4 weeks after I am vaccinated for the best protection? My brother...

I had to see my GP a couple of weeks ago and mentioned that I may be at greater risk if I catch Covid due to lung problems. She said I only meet 2 of the 3 criteria needed for Paxlovid. Later when I got home I thought I better do a bit of research on Paxlovid in case my GP does prescribe it for...

Looking through my old GP notes from the 80s I have finally found the vaginal pessary that caused an immediate reaction and permanent change in microbiota, inflammation and pain. It's been nearly 40 years of suffering from this. The pessary was Tiberal, an antibiotic. I will try to see what...

@Hubris I wonder what your level of ME is because the physical PEM I was getting at very severe and higher end of severe were unbearable, it was a miserable existence of illness. My cognitive ME was of the same magnitude, extreme. You said your physical PEM was a mild inconvenience compared to...

I haven't seen summer colds in past years as bad as what I am seeing at the moment. Like @Sean in Australia we are also going through a Covid wave here in NZ. Regards to colds, it could be a lack of exposure to colds since the mask mandate changed a few months ago? (I can't remember exactly...

I'm hanging out for my next Covid vaccine (5th dose) which will be around January 5th. I don't feel safe at all when out at the moment here in NZ. We are a week into December and it is quite shocking to me how many people are displaying cold/Covid-like symptoms. It's very unusual for this time...

@oldtimer Very memorable aren't they. lol. I spent quite a bit of time lying there trying to work out what all the noise was. I even wondered if the very sick patient next to me had some kind of loud medical equipment with her. One thing I did pack into my night bag was a pair of ear plugs. So...