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

[CantThink]

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]

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]

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.

 

[Countrygirl]

Justy, I have the same problem. I too am signed up for livestream, but I don't seem to be able to take part either. Perhaps they have checked Sir Prof Wessely's list of potential troublemakers?

 

[justy]

Justy, I have the same problem. I too am signed up for livestream, but I don't seem to be able to take part either. Perhaps they have checked Sir Prof Wessely's list of potential troublemakers?

I always knew I was on a special list somewhere.

 

[justy]

@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]

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

 

[Countrygirl]

I always knew I was on a special list somewhere.

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]

Thanks Justy! I will have another attempt.........or it is back to the buckets.

 

[Countrygirl]

It's back to the buckets!

I will rely on your running commentary Justy 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]

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

 

[Countrygirl]

Is no one able to watch?

 

[Countrygirl]

Suddenly! We are on!

 

[justy]

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

 

[justy]

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

Talkign about Homeostasis and sickness behaviour.

 

[justy]

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

 

[justy]

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

 

[justy]

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

 

[justy]

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

 

[justy]

Questions now