David Tuller needs our help

[Barry53]

I'm not assuming David Tuller will receive the whole of the $60,000 himself. As I understand it, this is the cost of creating a post for him at the university. It's possible this may involve costs. Anyway, this amount is not high for a senior university post, I'm guessing.

And any costs involved in his advocacy work will have to be paid for out of this.

 

[Esther12]

The thought just occurred to me that the two ME organisations, and I use that term loosely in respect to AfME, with the biggest reach in the UK, the MEA and AfME, neither of them has shared the fundraiser.

I'd just assumed that MEA would have.

 

[Barry53]

I'd just assumed that MEA would have.

Me too. Cannot help wonder if they would have been so shy of doing so if not part of CMRC.

 

[frenchtulip]

CrowdRising is fundraising to support the work of Dr. David Tuller. The goal is $60,000 by June 30th, 2017. $46,660 has already been donated. Read about Dr. Tuller's work and this fundraising effort at: https://www.crowdrise.com/virology-...rm=fb&utm_device=desktop&utm_source=donate-cr
If you are able, please consider contributing and share information with family and friends. Thanks!

 

[Binkie4]

Has anyone actually asked MEA or AfME if they would share the DT fundraiser? There was some conversation on here about doing it but was never sure it happened,

I was wondering about doing it/ discussing it further but did neither. On antivirals since beginning of May.

Was it done?

ED: haven't seen anything on either site but while I keep an eye out, it's not 100% accurate. Though there is an interesting discussion on MEA fb this afternoon. Am sure it will have been posted elsewhere so won't take this off topic.
ED2: maybe it was @BurnA who suggested contacting AfME. Apologies if it wasn't you Burn A but I thought it a good idea.

 

[AndyPR]

Just had a quick look, couldn't see that it was shared with either so I've done that.....page admin pressing the delete button on my post to AfME in 5,4,3,2,1

 

[Binkie4]

@AndyPR

Quick worker - I like it.

 

[AndyPR]

@AndyPR

Quick worker - I like it.

Lol, rarely. I just happen to be feeling quite a bit better today.

 

[Binkie4]

I have wondered for a while about the division that seems to exist between PR and the ME charities ( AfME and MEA).

I know some of us here on PR do comment on the charity sites but not many. Of course I don't really know but am sure I have recognised one or two who are on both.

To me this seems an opportunity lost. I joined AfME on being diagnosed, why that choice I don't know. I only gained awareness when David Tuller posted his blog, and we became very individually active. Firstly to AfME with a lot of pressure to ask for release of the Pace data which they eventually did. A few months later I left. I think I had just started lurking here.
I felt nervous on here especially at first. Everyone seemed to know so much more.

But I think we need to expand our community which, from the money raised for DT seems quite small in terms of numbers. And there are large numbers of members in the charities. I don't have the membership but someone will know.

Many of those members may, like me, be ready to learn and join in discussion here if given access to the full story.

How to do it? I think it would help if more of us commented on their fb pages. Just our individual views as today so that more names respond to the issues. There will be wider views.

When EC's son's health was discussed on AfME, a number of people jumped to her defence perhaps without knowing the wider picture. And today, when MEA posted their position re CMRC, instead of, or as well as, posting here, could PR members post on the MEA fb page so as to give a wider range of viewpoints? ( I know some of us did).

Could the reason this isn't widespread be something to do with feeling confident here and not sure there? Or they are less knowledgeable than us? ( oh god, I'm going to be hung, drawn, and quartered).

Just a view hoping to work towards enlarging our ME community if that is what we want to do.

EDIT: a bigger community could have raised money more quickly for DT

 

[RogerBlack]

EDIT: a bigger community could have raised money more quickly for DT

A bigger community, aware of the issues, would not need DT.

 

[Barry53]

How to do it? I think it would help if more of us commented on their fb pages. Just our individual views as today so that more names respond to the issues. There will be wider views.

I have taken to publicly sharing on fb some of David Tuller's work and Dr. Ron Davis' ... I feel they both have "the common touch". My feeling is it may help to familiarise the broader populace with the fact ME is biological not psychological, and that a lot of highly credible work is underway to prove this.

 

[BurnA]

maybe it was @BurnA who suggested contacting AfME. Apologies if it wasn't you Burn A but I thought it a good idea.

It could well have been me but I would have said it in total jest ( sorry that's not always obvious)

In principal it's a great idea to spread the word around but unfortunatly I think we know what AfME are like now, so asking them to do anything remotely helpful is almost guaranteed to be a waste of energy.

But I think we need to expand our community which, from the money raised for DT seems quite small in terms of numbers.

Yes I agree.

The best strategic advocating we can do from now is to grow our community.

AfME and the like are surviving off propaganda and misinformation. That only lasts a certain time in the era of the internet. They can shout fake news all they like and take down posts but sooner or later the tide of information will grow too big.

 

[Wolfiness]

And today, when MEA posted their position re CMRC, instead of, or as well as, posting here, could PR members post on the MEA fb page so as to give a wider range of viewpoints? ( I know some of us did).

.
They seemed pretty informed and angry!

 

[adreno]

But I think we need to expand our community which, from the money raised for DT seems quite small in terms of numbers. And there are large numbers of members in the charities.

I don't understand why the members in the charities would need someone from PR to come and tell them to support DT. Can't they read what he's published themselves? Isn't it in their own best interest? Are people here on PR some kind of elite group that needs to educate the great unwashed by posting on their FB pages?

 

[MEMum]

When EC's son's health was discussed on AfME, a number of people jumped to her defence perhaps without knowing the wider picture. And today, when MEA posted their position re CMRC, instead of, or as well as, posting here, could PR members post on the MEA fb page so as to give a wider range of viewpoints? ( I know some of us did).



Hi@Binkie, just to clarify it was SC's son who is ill (ie Sonia's)
Esther seems to have healthy teenagers as she "enjoys skiing and sailing" with them.

 

[Binkie4]

@MEMum
Thank you. Of course it was SC's son. Grey cells.

 

[mango]

June 17, 2017 / Update #1
Two weeks to go...

So I’ve got two weeks left in my five-week PACE-busting crowdfunder, and I’ve been overwhelmed by the amount of support and enormously touched by all the comments and notes. The many stories I have heard have made it clear to me how much remains to be done and how important it is to continue this fight to alert the scientific and medical communities about the egregious flaws of the PACE trial, as well as the harm that the CBT/GET ideological movement has inflicted on the patient community. As of this posting, I have received 721 donations for a total of $46,726. That’s pretty incredible.

I am committed to this project and plan to continue whether or not I reach the $60,000 goal. But reaching that level is still critical because it will ensure that my Berkeley position includes health insurance for the full year. That will make things much, much easier for me and allow me to focus my energy on keeping up the PACE-busting pressure.[...]

Continue reading here:
https://www.crowdrise.com/fundraiser/campaign-updates/1306193#!/status/1

 

[Jennifer J]

Was catching up with a friend today. She has ME/CFS, for years. I told her about the research being done and of David Tuller's work. Much to my surprise she said she wants to help and donate!

https://www.crowdrise.com/virology-...fs-and-related-issues1/fundraiser/davidtuller

 

[trishrhymes]

I don't understand why the members in the charities would need someone from PR to come and tell them to support DT. Can't they read what he's published themselves? Isn't it in their own best interest? Are people here on PR some kind of elite group that needs to educate the great unwashed by posting on their FB pages?

If the charities like AfME and MEA would actively inform their members about David Tuller's work and his fundraising, we wouldn't need to. AfME won't because they are in Crawley's pocket. I don't understand why the MEA Facebook page doesn't seem to like putting up anything 'political'. Maybe the see it as a place for patients to ask for advice on symptoms, treatment etc.

Before I joined PR I had difficulty finding out the bigger picture about PACE, etc because these 2 charities chose to put little or nothing about this on their websites and FB pages. I wasn't aware of Tuller's work until I came here, even though I've had ME for decades and have intermittent followed the work of these charities.

There must be many. other pwme similarly uninformed through no fault of their own.

 

[adreno]

If the charities like AfME and MEA would actively inform their members about David Tuller's work and his fundraising, we wouldn't need to.

If people are not seeking information for themselves, it is likely because they trust the authority of the charities to provide it. They are also likely to take the same stance as the charities they follow and support. If the charities do not find it important to inform their members about DT and support his work, it is likely that most members won't either.