Nov 29th #YoungHeartsDay - for #KidswithME

[Sly Saint]

just wondering if we could do something to show our support?

 

[Invisible Woman]

Nice idea. Wonder what we could do?

 

[Andy]

Also on Facebook for those of you there


ETA: Are TYMES the only children dedicated ME organisation?

 

[Sly Saint]

@Andy @Adrian
FB, tweet 'official' S4ME supporting Tymes Trust and thinking of all the kids, including link to donate to Tymes?

eta: also people could add messages of support on this thread and you could post a link of the thread?

 

[Andy]

@Andy @Adrian
FB, tweet 'official' S4ME supporting Tymes Trust and thinking of all the kids, including link to donate to Tymes?

I've set myself a reminder to share their Facebook post on the 29th.

 

[MEMarge]

Should I ask AfME if they can put it on their Facebook/Website? I will be at their AGM tomorrow and could pass it on to Chair of Trustees.

Any other questions for them/Neil Harrison.....

 

[MEMarge]

Would it be better not to mention it then?

 

[Amw66]

Should I ask AfME if they can put it on their Facebook/Website? I will be at their AGM tomorrow and could pass it on to Chair of Trustees.

Any other questions for them/Neil Harrison.....

There is little love lost between these organisations. As a gesture it may signify a new approach.

 

[obeat]

Should I ask AfME if they can put it on their Facebook/Website? I will be at their AGM tomorrow and could pass it on to Chair of Trustees.

Any other questions for them/Neil Harrison.....

Is Harrison study able to assess the brainstem accurately? If not he's missing valuable data imo.

 

[MEMarge]

Are you thinking of anything in particular re the brain stem? @obeat

 

[obeat]

Are you thinking of anything in particular re the brain stem? @obeat

Not really. Techniques seem to be in development. It just should be included if possible.

 

[ladycatlover]

ETA: Are TYMES the only children dedicated ME organisation?

There used to be another one that got subsumed into Action for ME. Mary Jane Willows used to be CEO and Crawley medical director. I think MJW was on the last Nice GDG?

Edited to remove Media.

 

[Amw66]

MJW heads up the children section of AfME

 

[Invisible Woman]

So the Tymes Trust are the only dedicated, national charity for kids with ME that doesn't have a strong BPS agenda or ties.

 

[MEMarge]

Hi @obeat. Yes the imaging research that Neil Harrison is doing does include the brain stem

 

[obeat]

Hi @obeat. Yes the imaging research that Neil Harrison is doing does include the brain stem

Thanks

 

[Tom Kindlon]