#MEAction soliciting community input for protest demands

[Justin30]

In the case of clinical trials, for me the need is more of them in general and more of them on severe patients. But if we combine the two needs into one demand it doesn't necessarily gain anything.

No that was great I totally agree and understand where you are coming from.

The demand should be sperated as the patient cohort maybe of difďerenr sibtype. Keen observasation I think a revieion is in order

 

[JaimeS]

Hello, folks! As promised, #MEAction has posted a request for input into the #MEAction US protest demands.

http://www.meaction.net/2016/08/01/give-your-feedback-on-the-meaction-usa-protest-demands/

If you are interested in commenting, please do so by Friday, August 5.

This is not a beast like the RFI questionnaire. If you are a decent typist, you will be done in fifteen or twenty minutes, even if you have quite a lot to say.

Note: if other countries would like to promote demands as well, we now have #MEAction in the UK and #MEAction Australia; I know other countries are also making strides.

-J

 

[JaimeS]

BTW I will add that the commentary here helped inform the feedback I myself had about the demands, particularly around the clinical trial requirements; thanks as always, PR community, for being your intelligent and articulate selves!

-J

 

[A.B.]

Will feedback by non US citizens by used? Don't want to waste my time if it's just discarded.

 

[JaimeS]

Will feedback by non US citizens by used? Don't want to waste my time if it's just discarded.

The first question asks if you are a US citizen, and there is a 'no' option. If you state 'no', it does not allow you to continue the survey; your results would not be discarded, because you would have no results!

I know that L.A. Cooper's team is working on one for the UK if that's where you are. If not, do bug the leaders of your home country to start developing one!

 

[Nielk]

The demands of MillionsMissing were prepared and made public (without input from the entire community) for the protest before May 25, 2016.

More than two months later, MEAction is sending this notice on August 1st soliciting input from the community - of mostly moderately to very severely sick patients for whom an effort like this is taxing if at all possible, with a deadline of August 5. (4-day timeframe)

I don't think that this is an appropriate time frame for very sick patients to read, analyze and compose recommendations for edits or additions to the demands.

 

[JaimeS]

The deadline has been extended to next Friday, August 12!

 

[Sasha]

Glad to hear the deadline has been extended. I think that #MEAction is basically one set of very sick patients trying to cater for another!

It must be hard to try to get everything ready in time centrally - and people are going to find it hard to get everything ready in time peripherally. But I think Sept 27 was the latest date to really go for this until next spring - beyond that, I wouldn't have wanted to trust the weather, at least in the UK.

 

[JaimeS]

@Sasha, the longer we extend, the less time we have to assimilate the information, so it's a delicate dance. We want everyone to be able to have a say, as much as is possible within our ill community.

 

[Sasha]

@Sasha, the longer we extend, the less time we have to assimilate the information, so it's a delicate dance. We want everyone to be able to have a say, as much as is possible within our ill community.

I agree, and that was the point I was making about one very sick bunch of people trying to accommodate another. You're also all sick and will need time to cope with the results, as you say.