petition: Retract Misleading PACE Claims

[Merry]

Christian Godbout in this post:
http://forums.phoenixrising.me/inde...igue-syndrome-study.40664/page-15#post-658228

I tried to find the direct comment but can not navigate myself through all the social media outlets that well.

I can see the public becoming very supportive and interested in such a massive scam that has been going on. Its just not been widely publicised enough.

Thank you, @Empty, for going to the trouble of looking this up. I will read the thread later when my head clears.

 

[Merry]

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[Merry]

His post may have been a joke. ME brain can't decide.

I think Christian Godbout was kidding. This is what he said:" Not sure if my sources are reliable, but apparently Donald Trump made a comment on the Pace Trial controversy: 'Yeah the Pace Trial, I'm all for it, I just love this trial, cause it's HUUUUGE, 600 patients, 8 million bucks, that's how you do things, I tell you, - oh and don't let those 8 million scare you, when you think how much money you save in the long run with the treatment recommendations, you just know it's an investment. Yeah the Pace Trial…We need more trials like this one. Let's make science great again.' "

Later in the thread beaker says: "I am 99.9999999% sure that was written as a parody . ;-)

​

 

[Empty]

yeah, I read that too, not familiar with Trump so thought it was his parody. Best let brain rest for now he he. Thanks Merry.

 

[Merry]

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[Merry]

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I just received a request from #BlackLivesMatterNetwork that I sign a petition, and their petition generated 100,000 signatures in the first 24 hours. Edit: The email said 100,000, but when I went to the petition itself, the counter said 50,000.

I mention this other petition only as a reference to what might be possible for us. More signers, please.

 

[Merry]

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[Empty]

Do you mean the Care2 petitions Merry? I was thinking if someone could do a punchy paragraph to grab those who are not familiar with the politics/background, this petition could really take off on that...

Can't do it myself though.

 

[Merry]

Do you mean the Care2 petitions Merry? I was thinking if someone could do a punchy paragraph to grab those who are not familiar with the politics/background, this petition could really take off on that...

Can't do it myself though.

The #BlackLivesMatter petition was at the Color of Change website. If that's what you mean when you ask about Care2 petitions.

Yes, I wish I knew how to get members of the general public to sign. I asked my son to sign, but I am not comfortable asking other family members or non-ME friends to sign.

 

[Merry]

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[Merry]

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[Merry]

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[Merry]

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[Merry]

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[Empty]

The #BlackLivesMatter petition was at the Color of Change website. If that's what you mean when you ask about Care2 petitions.

Yes, I wish I knew how to get members of the general public to sign. I asked my son to sign, but I am not comfortable asking other family members or non-ME friends to sign.

I have been thinking about this good point you make, Merry.
I am finding it difficult to explain what it is about in the two seconds people often afford you before deciding upon something. Also people who know nothing about M.E. or the whole saga seem to be turned off by the petitions format (I thought it was great). Not enough drama, sensational captions?

 

[Merry]

I have been thinking about this good point you make, Merry.
I am finding it difficult to explain what it is about in the two seconds people often afford you before deciding upon something. Also people who know nothing about M.E. or the whole saga seem to be turned off by the petitions format (I thought it was great). Not enough drama, sensational captions?

@Empty, I like your reflective nature. I don't know that I made a "good point," but I appreciate your interest. Perhaps the issue is that I've grown cowardly and am afraid of being rebuffed by, or alienating further, the few people I still have contact with.

I agree that the PACE petition is difficult to explain to someone outside the ME/CFS community, especially when many people in the general public agree with the PACE researchers that patients just need to change their attitudes and get some exercise.

 

[Merry]

8813

Actually, @Empty, I see the numbers on this petition as encouraging. For several years, I've been participating in online contests, trying to raise money for ME/CFS charities, and my impression has been that it's only a few hundred people worldwide who vote. But, slowly, more patients are getting involved?

 

[Empty]

8813

Actually, @Empty, I see the numbers on this petition as encouraging. For several years, I've been participating in online contests, trying to raise money for ME/CFS charities, and my impression has been that it's only a few hundred people worldwide who vote. But, slowly, more patients are getting involved?

Oh. Yes, more people on-line with easier more affordable access. I see the care2 petitions take off really well. I often sign them. I want this one to get 100,000 signatures. Have you come across a PACE caption at all along your travels?, anyone? People are busy. The 'exercise & positive thinking' caption is superglued into peoples brains and also part of culture. (even thou the UK is quite depressed!?)

 

[Empty]

@Empty, I like your reflective nature. I don't know that I made a "good point," but I appreciate your interest. Perhaps the issue is that I've grown cowardly and am afraid of being rebuffed by, or alienating further, the few people I still have contact with.

I agree that the PACE petition is difficult to explain to someone outside the ME/CFS community, especially when many people in the general public agree with the PACE researchers that patients just need to change their attitudes and get some exercise.

yep, that sounds like 'friends and family' of a person with ME. :-/

 

[Empty]

People bake cakes for you when you have 'Cancer'...