Take part in our Severe M.E. Symposium from home

CantThink

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So, this does enable severely and severely affected patients to be included in their consultation.

I doubt a very severely affected person (as in worst case scenario) is able to use the computer. I mean people who lie in the dark 24/7, use a bedpan to toilet, are strip washed if they can bear it and may be fed through a tube.
 

Bob

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I doubt a very severely affected person (as in worst case scenario) is able to use the computer. I mean people who lie in the dark 24/7, use a bedpan to toilet, are strip washed if they can bear it and may be fed through a tube.
I agree... I was thinking along the lines of someone helping them out and doing the technical work for them...
Considering the disability that very severely affected patients endure, i think it's almost impossible to include them in a consultation.
I think they can only be included if their carers can contribute.
 

justy

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Still struggling with how to access the event - think I have signed upo for livestream, but don't seem to be able to watch anything. Also thought I sorted out google hangouts for the discussion, but this morning I noticed some sort of message from AFME through my google account (which I am not familiar with as I never use it), I tried to accept them but I think I pressed the wrong button and now I cant get the message back - I have done something to it but god knows what...so much effort and now looks like I wont be able to take part.
 

justy

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@Countrygirl - i'm in... on the livestream page I kept clicking the buttons at the bottom right corner saying skip this or done this or finish and now I am in the AFME live page - there a few comments at the bottom already. Not sure about the round table discussions tho - I have google hangouts open but don't know how this will work.
 

justy

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So far theres only 13 of us watching - so either people cant access itor not many people watching from home.
 

Countrygirl

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I always knew I was on a special list somewhere. :lol:

You think I am joking, Justy?

I even received a phone call a long while ago saying my activities were being watched by an official person who has the power to 'do you harm'. I was very sick and all I was doing was holding large meetings in the county for scientists undertaking ME and OP research. I think there is more than one list in circulation, although I don't honestly think that this morning's problem is due to any more than a technical hitch.

Have you gained access yet? I think I am going to have to give up and do something useful like continue to clear up the flood of water that poured through my roof and bedroom during the heavy rain.
 

Countrygirl

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It's back to the buckets!:)

I will rely on your running commentary Justy :):D No pressure, of course.:)

I think it is being posted later, isn't it?

Right...............now to return to the flood.................anyone have the energy to repaint my ceilings please as they have now turned a most unattractive shade of brown rather than the previous dazzling white after the rain storm?
 

justy

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its says the event has started but their is NO livestream that I can see - anyone else there?
 

justy

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Livestream started. They have a quiet room with sofas! wish I was there.
 

justy

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Professor Hugh Perry Southampton - talking about inflammation in the brain and MS

Talkign about Homeostasis and sickness behaviour.
 

justy

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Taking some notes - talking about the priming of microglia - may be able to post notes later, but very tiring listening.
 

justy

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talking about the Japanese research - activated microglia - small study - 1st of its kind - very interesting observations
PWME have activated microglia in pwme
 

justy

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low grade infections could be enough to prime the microglia in the brain - just stress is enough to generate inf cytokines
 

justy

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pain can maintain activated microglia in the brain. we may not need a stimulus from the periphery (eg infection) to have activated microgliaa sin tinnitus
 
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