Validation of impaired Transient Receptor Potential Melastatin 3 ion channel activity in natural killer cells from CFS/ME, 2019, Cabanas et al

They do mean among other things sensory but this would change with the PEM state and they cycle that goes with it. When you are stable the sensory is not too bad but push a person in a PEM state and soon the senses are involved.

Sorry you have to come down to my level (which I have to say you are very good at) ... which is quite low. Big samples have fewer false positives but you have to know what you are looking for and I'm not sure they do yet?

All the studies I have seen miss the problem with what happens when the body is put in a deep PEM state, even the CEPT testing only ever goes to 3 days. My observations of PEM is through looking after and seeing other children go through PEM and some adults.

You start of with just a few basic symptoms that stay constant, what they term is a base line but it is a bit more fluid than that due to everything putting you in a PEM state. You then say have a 15 min lesson at home. For the next 2 days you feel OK and although you cannot repeat to the same standard of lesson you are still able to do some light reading. Day 3 and the symptoms get more intense and if you try another 15 min lesson you loose the ability to see and control of your legs. You wait another 3 days and try again fighting the growing symptoms, your sense of smell starts to bother you and you close the curtains and not necessarily for a headache but sensitivity to light. Cognition has deteriorated and holding a conversation to any degree has gone. It this progression most miss.

Now if you increase the size of the group you would never see the cycle, so wont see what happens to any of the systems of the body. The other problem is the understanding of activity and rest. Now when Mark Van Ness spoke about this and although we knew he was right me and a few other mothers were sceptical about what he was saying about resting and then doing a little more (if my memory serves me right it was a lady climbing stairs and sitting at every level) because if it takes 48 hours for the symptoms to come out the continual impact is missed.

Here is Sonya Marshall-Gradisnik talking about the calcium, NK cells and Bright CD56 and Dim CD16 and their function with regards to Liesing (I also think their Systematic Review would be worth a look).

https://www.youtube.com/watch?v=6sUFZzZdZBU

Now they looked at a longitudinal study of
baseline
snapshot
6 months
12 months
18 & 24 months. The differences are striking between controls and Me and severity but they should be looking at what happens in that PEM state and match that up with Mark Van Ness finds in the body. At some point something snaps and if more calcium and ATP is needed for the the NK cells to harpoon it would be good to find out what impact it has 48 hour 3,4,5 and possibly 6 days after. It may not be possible to test that often?

The other thing is does this then mean this is why we find so many infections after a PEM state has been initiated or is that my strange way of thinking?

 

I was watcing this and it clear a lot for me ( some thing confuse me though...)

https://www.youtube.com/watch?v=6sUFZzZdZBU

 

My experience is the more severe the less well that works.

 

That was my point when in a PEM state it takes very little to push further into it. A cumulative effect.

 

TBH I've been largely ignoring this group because of the small sample sizes and overconfident statements they are prone to making but I think - it was a bit over my currently foggy head - the video from the IiME conference addresses some of the questions and concerns raised in this thread such as why they use NK cells and why they think their small sample numbers are stronger than we give them credit for. Not confident I fully understood everything so won't try to give a summary. Better anyone interested listen to Prof. Staines explain it himself here:

http://investinme.org/IIMEC14.shtml

 

I had the same thing! I watched the video and it seems pretty interesting actually!

I have been to a neurologist lately, she thinks I might have myasthenia gravis or LEMS. They are both autoimmune channelopathies. I always thought the symptoms didn't fit me, but I've looked on a LEMS forum lately and I was stunned that the symptoms were not that different at all. Lot of people complain about how many days it takes to recover, they are exhausted all the time. Lots of other symptoms that are not in the "official books", but when I read the forums, it didn't actually seem all that different to me?

 

dit in tegenstelling tot LEMS, waar de spierzwakte minder wordt bij herhaalde activiteit

Muscleweakness becomes less with repeated activity.

When I read that I think it can not be LEMS.

 

Yes! I've read that too and the neurologist 5 years ago said that too to me, so I had confidently ruled that out without testing it. But now I'm reading up on LEMS and MG and I read a lot of people struggling with days of weakness after exertion? Also a lot of other problems, gastrointestinal, urinal problems etc. etc.

The video of Don Staines also says these channels they are studying, are not just in NK-cells, but everywhere in the body. So every organ can be influenced. That could explain why there are so many different symptoms-patterns between all me/cfs patients?
It's the same with MG, some people have full body muscular weakness, some people have only eye muscles weakness, why is that?
They all have the same auto-antibody, but it doesn't affect everyone in the same way.

 

I felt Slightly encouraged after watching Don Staine's presentation. It's great to hear that they will be looking for treatments.

 

Could anyone summarise this? I just couldn't sit through over an hour.

 

The presentation I linked to in post #46 is 33 minutes, if that helps. But it's high cognitive demand so I second the request for a summary if anyone has the energy and required functioning brain cells, thanks.