Has anyone appealed to celebrities/philanthropists to help us?

[Lucy33]

You have to love when people personally attack those who go out of their way to put together advocacy projects for the ME community just because they have a slight disagreement over phrasing, lol. The post is even more ludicrous because Brazil is an industrialized nation, and there are industrialized nations in Africa.

As for those proposing sending DVD's/Videos along with the letters, that is not an approach that I support for a few different reasons. If we are lucky, a few of the letters that are sent to philanthropists will make it directly into their hands, but most will have people screen their mail. Either way, these high level executives and powerful people are very unlikely to sit down and watch a DVD based off an opening letter. This is a strategy that could perhaps be employed if we get a response and someone shows interest, but until then, I don't think that approach is congruent with what we are attempting to accomplish.

I don't at all wish to seem offensive and apologise if it came across as such- well done for doing all that you are. Brazil is actually a middle income country and Nigeria may be potentially classified as such (where the study was done) but the latter has a life expectancy of 51 awd 9 milllion children who dont go to school etc. Anyway i just wanted to say that ME has been found in industrial nations because (surprise ) that's where people have looked- so lets not close our minds to the very real possibility that there are people with this dreaded disease in non industrial nations especially as some studies have found that there's a genetic component.

 

[CantThink]

You have to love when people personally attack those who go out of their way to put together advocacy projects for the ME community just because they have a slight disagreement over phrasing, lol. The post is even more ludicrous because Brazil is an industrialized nation, and there are industrialized nations in Africa.

As for those proposing sending DVD's/Videos along with the letters, that is not an approach that I support for a few different reasons. If we are lucky, a few of the letters that are sent to philanthropists will make it directly into their hands, but most will have people screen their mail. Either way, these high level executives and powerful people are very unlikely to sit down and watch a DVD based off an opening letter. This is a strategy that could perhaps be employed if we get a response and someone shows interest, but until then, I don't think that approach is congruent with what we are attempting to accomplish.

I appreciate the effort you are making. There will always be people who say: you should have done it this way... Or something along those lines. Probably because it's easy to give advice, but requires a lot more effort to actually do the action (if you know what I mean).

I agree about the DVD. I do not think that it is worth including it in an initial approach. If a person expresses an interest in response to the letter, then they'd be more likely to actually watch it and not just throw it away.

 

[redviper]

I appreciate the effort you are making. There will always be people who say: you should have done it this way... Or something along those lines. Probably because it's easy to give advice, but requires a lot more effort to actually do the action (if you know what I mean).

I agree about the DVD. I do not think that it is worth including it in an initial approach. If a person expresses an interest in response to the letter, then they'd be more likely to actually watch it and not just throw it away.

Thanks for the kind words, I sincerely appreciate them. I learned a long time ago in life that it's impossible to please everyone, so all you can really do is surround yourself with talented people and trust the collective feedback of the group. Speaking of which, @CantThink , since we seem to be on the same page strategy wise, I would love to be able to seek your feedback on the next round of letters that are going out. Both in terms of the strategic approach taken, and how they are going to be written.

@Debbie23 @geraldt52 - I've done a significant amount of research to identify candidates for the next round of letters. Unfortunately I've still got quite a bit more research to do before we can begin, but I want to absolutely make sure that we select the philanthropists that are most likely to respond to our cause. I should have a list of thoroughly researched candidates in the next 7-10 days and we can then proceed from there.

@Debbie23 - I know that you wrote a version of the original letter to Tim Cook, would you be open to writing a few letters on your own to some of the philanthropists that we eventually select? You could use your previous letter as a template and then refine it for the individual chosen. I could collaborate with you, or just provide peer-review feedback once you have completed your letter like you and so many others graciously did for my original letter to Mr. Cook. If we take this approach, perhaps we can target more than the 5 philanthropists I had originally planned with personalized letters.

 

[CantThink]

Speaking of which, @CantThink , since we seem to be on the same page strategy wise, I would love to be able to seek your feedback on the next round of letters that are going out. Both in terms of the strategic approach taken, and how they are going to be written.

Yes, that's fine! I look forward to it.

 

[Debbie23]

I'm certainly willing to try my best if you think it would help, as I say I've never really done much of this kind of thing myself but I'm certainly willing to give it a go where I can. I think you've done great work on this so far by the sounds of what you've said, so I'm totally willing to follow your lead on it.

I've not been doing so well over the past few days, and I have some very big life events coming up in the next three months which are going to hit me mega hard and likely provoke a mega crash, but which are unavoidable Like a massive house move across the entire country. But I'm totally willing to try as best I can, when I can, if you'd like. I can always post any other versions on here for people to take forward and work in a team if you think that would work? Or else try my best to submit where you and others think are appropriate as and when I can. As I said I'm easy to following what you think is best.

I'd like to thank you again for the work you've put into this.

 

[Folk]

I think, if massive twitters were sent to a lot of celebrities, from a lot of patients, someone would notice...

Perhaps a good punch line in 140 characters.

 

[redviper]

Hey everyone,

Things continue to move ahead with this project at a pretty quick pace. Through further research, we have identified and assessed other American philanthropists that would be the most likely to contribute to ME/CFS research. Currently we are looking for people to primarily provide assistance in two different kinds of ways.

1) We are looking for a couple of different people to serve as lead pens on some of the letters. It's important that your writing is clear and concise, as well as that you incorporate feedback and work collaboratively with the rest of the team. All letters go through a peer-review process, so it's important that all writers can accept feedback in a professional manner.

2) We are looking for ME patients to help provide feedback on the letters by participating in the peer-review process and providing their thoughts and any potential edits.

If you're interested or would like to know more, feel free to shoot me a message.

 

[dannybex]

Actress Alberta Watson has it, and used to be somewhat active on the forum here - or someone claiming to be her was!
http://forums.phoenixrising.me/inde...famous-me-cfs-sufferers.647/page-3#post-18831

Sadly, it looks like she passed away in 2015, from cancer. She mentioned follicular lymphoma in this post from 2010, which apparently has a generally good prognosis? Anyway, here's one of many obits:

http://deadline.com/2015/03/alberta-watson-dies-24-actress-nikita-1201397120/

I came back to this thread however as I just read an article where Susan Harris (writer/creator of 'The Golden Girls') says it turns out she didn't have CFS, but instead, 'an adrenal issue', but was still proud of the episode she wrote:

http://www.vulture.com/2017/03/the-golden-girls-creators-on-finding-new-fans.html