David Tuller needs our help

[Binkie4]

@trishrhymes ( edited to add user name)

Before I joined PR I had difficulty finding out the bigger picture about PACE, etc because these 2 charities chose to put littleor nothing about this on their websites and FB pages. I wasn't aware of Tuller's workuntil 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.

This was exactly my position. I was diagnosed in 2008, joined AfME, why that organisation I can't remember, and read their magazine quarterly. I had no awareness of its history or where its approach differed from MEA. I did look at reMEmber but it seemed a local organisation. Perhaps I just googled ME.

I can't remember either when I heard of Phoenix Rising. It was when David Tuller published his blog that I began to understand the magnitude of the damage created by the PACE trial and I started following ME news avidly. I think I joined at the end of 2015 or early 2016 so there were several years when there was plenty of information out there that I wasn't accessing.

I agree with @trishrhymes that there may be many other pwme who would be glad of more information but the term " Phoenix Rising" isn't naturally linked with ME.

Am not suggesting a change of name by the way. Or maybe that would be worth it if we seriously want to grow by reaching more people???

I know I would have liked more information earlier but if we want our numbers to increase, we need to reach out particularly to newly diagnosed members, maybe via the ME charities fb pages. ( EDIT)

 

[slysaint]

we need to reach out

I'm not on FB or Twitter; but this was what I was trying to do, encourage others to do :
Spreading the word - other ME/CFS forums
(note: not all links are in my first post on the thread).

But in addition if people post on FB could they not also link to the PR FB page?
https://www.facebook.com/PhoenixRisingMECFS/

and on Twitter:
https://twitter.com/aboutmecfs?lang=en

eta: it might also help to increase awareness of Invest in ME :
https://en-gb.facebook.com/groups/5804522506/permalink/10154582113177507/

http://www.investinme.org/landerP5.shtml

Ron Davis mentioned PR and his wife Janet is on PRs board but
I can't see anything on PR on there.

And while we're at it I can't find any reference to this years IiME colloquium on MEAs website??
ditto AfME (but then that's no great surprise).

 

[MeSci]

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.

Just to say, I used to belong to AfME too, but eventually left due to being fed up with their stick-in-the-mud approach, I think.

I was rather hesitant about joining here, but soon felt very welcome!

There is no need to worry about saying the wrong thing - you make a lot of sense.

 

[AndyPR]

But in addition if people post on FB could they not also link to the PR FB page?
https://www.facebook.com/PhoenixRisingMECFS/

I would argue that if this is done then we need a more active Facebook page - just a thought.

 

[slysaint]

I would argue that if this is done then we need a more active Facebook page - just a thought.

I was more thinking they might follow the links to the community here; but also at the very least realise we are a forum for ME sufferers

eta: I can't actually see a link to the forums just a picture of them...........?

 

[BurnA]

I was more thinking they might follow the links to the community here; but also at the very least realise we are a forum for ME sufferers

Maybe I've missed something but if we want people to come here why not just link to here.?
If too many links are provided it will lose the impact, nobody clicks on all links so if they click on an out of date fb page they are likely to give up and think PR is out of date.

PS. I have no idea what the PR facebook page is like I don't use facebook. My point is, rather than spray and pray we should be selective with our links.

 

[BurnA]

And while we're at it I can't find any reference to this years IiME colloquium on MEAs website??
ditto AfME (but then that's no great surprise)

I think generally speaking, very few charities will promote the work of other charities if they are in the same sphere. That's just my impression. It would be a bit detrimental to their cause if MEA started highlighting all the great work iime are doing and suddenly all the MEA members left and paid money to iime instead. I could be wrong maybe someone more familiar with charity work could explain.

 

[Orla]

Have people written to the local UK charities? People shouldn't just rely on the national ones to do the "advertising". Some charities might email their members, even if they are not in a position of donating as a group.

 

[AndyPR]

Maybe I've missed something but if we want people to come here why not just link to here.?
If too many links are provided it will lose the impact, nobody clicks on all links so if they click on an out of date fb page they are likely to give up and think PR is out of date.

PS. I have no idea what the PR facebook page is like I don't use facebook. My point is, rather than spray and pray we should be selective with our links.

Many people won't want to sign up here and try to either follow all of the new threads that come up constantly, or to dig through and discover the veins of useful information in amongst our in-jokes, squabbles and pictures of various animals (all of which I have been guilty of).

A Facebook page that highlights, off the top of my head, the 5 most active threads of the previous day could be a more digestible way for people to understand what PR can offer. But I doubt that can be automated so would need someone to track that and post every day.

I see that as a gateway for people to dip their toes into PR, rather than being overwhelmed by the sheer quantity of posts.

 

[Mrs Sowester]

There needs to be a Phoenix Rising FB page, an open group page. It would need a good few people to moderate - it would get pretty fiery!
FB is the best platform to spread word otherwise people just go to AfME and get nowhere and nothing helpful. I did 5years of miserable lurking on their site, visiting the 'research' page daily before finding PR and actually feeling empowered.

 

[BurnA]

There needs to be a Phoenix Rising FB page, an open group page. It would need a good few people to moderate - it would get pretty fiery!
FB is the best platform to spread word otherwise people just go to AfME and get nowhere and nothing helpful. I did 5years of miserable lurking on their site, visiting the 'research' page daily before finding PR and actually feeling empowered.

I think a fb as you describe night fragment PR, the whole point of these forums is that the discussion takes place here. If the discussion starts to take place on fb then the forums become diminished.

I think we need to look at ways to attract people here and make it less intimidating for newcomers.

By intimidating I don't mean personally I mean the overwhelming daunting task of figuring the forums out.

Maybe a newcomers information pack on how to navigate and where to find the popular and recent threads or threads on a topic?

 

[trishrhymes]

There needs to be a Phoenix Rising FB page, an open group page. It would need a good few people to moderate - it would get pretty fiery!
FB is the best platform to spread word otherwise people just go to AfME and get nowhere and nothing helpful. I did 5years of miserable lurking on their site, visiting the 'research' page daily before finding PR and actually feeling empowered.

I agree it would be good to have a more active FB page that promotes PR and explains what it is and how to join. At the moment it is almost defunct - only one posting in the last month, flagging up the review of Julie Rehmeyer's book.

An active page would require someone with the time and energy to moderate it and keep it fed with new links to PR discussions of interest. I don't know who does it at the moment.

Anyway, that's a bit off topic for this thread. I hope to give another donation soon to help David Tuller keep up his excellent work.

EDit to add: I've just tried a facebook search for MECFS and for ME and for CFS. Phoenix Rising didn't appear in any of these searches. If we are to be found on facebook, I suggest we need to change the name of the FB group, for example to 'ME/CFS Phoenix Rising'

 

[Mrs Sowester]

Yep, you make sense.
A signpost page then with links to PR

 

[Mrs Sowester]

I didn't know it existed! couldn't find FB PR page just now... it's all bands, I obv didn't scroll far enough

 

[Jo Best]

Re. the ME charities, I guess it goes without saying that Invest in ME Research (IiME/IiMER) have helped spread the word of David Tuller's crowdrise via their pre-conference dinner, on Facebook, Twitter and now in their free e-newsletter which was mailed out yesterday.

David Tuller gave a forceful pre-conference dinner speech which left nobody in doubt as to the problems with the PACE Trial.

How this particular piece of research is still being defended by some, and how certain others maintain an overwhelming silence over the support of the trial, is beyond comprehension.

David ended his presentation by bringing the title of the speech to life. The PACE Trial, and other papers which were deemed unusable, were left in pieces on the floor.

Fiat justitia ruat caelum

David has put out a crowdfunding campaign to secure his continuing investigation of the PACE Trial and similar research which have been heavily criticised by patients.

As David writes -

"That's why I am seeking your tax-deductible contributions for another year of investigating and blogging about the PACE trial and ME/CFS on Virology Blog. I will also continue to write articles for other publications, when possible. There is much, much more investigating, blogging and hammering away to do--about conflicts of interest, about the FINE "sister" trial, about Cochrane's misleading systemtatic reviews, the false PLoS One claim that the treatments are "cost-effective," etc, etc. "

David needs just $15000 at the time of this newsletter.

More on this at this link

 

[Esther12]

I think a lot of people do just spend time on FB now. I wonder if there's some way of having PR's software automatically post links to FB of the most commented on threads of the day, or something like that?

 

[Dolphin]

I think a lot of people do just spend time on FB now. I wonder if there's some way of having PR's software automatically post links to FB of the most commented on threads of the day, or something like that?

Phoenix Rising could also have this on the forum directly. I know politics.ie in Ireland does this: see here:
http://www.politics.ie/
They have most viewed threads this day and this week.

----
I have just noticed that Phoenix Rising actually has a page with similar information:
http://forums.phoenixrising.me/index.php?find-popular/content

 

[Dolphin]

Personally I don't like seeing Action for ME and ME Association being discussed as if they are basically the same.

AfME

does not equal

Association for Youth with ME (now defunct)

does not equal

ME Association

does not equal

the 25% ME group

does not equal

Tymes Trust

does not equal

Invest in ME research.

 

[adreno]

There needs to be a Phoenix Rising FB page, an open group page. It would need a good few people to moderate - it would get pretty fiery!

One of the big advantages of the forums over FB groups is that it is anonymous to post here. I'm not convinced you will see the same fiery debates there.

Remember everything you post on FB comes with a price attached. For example, insurance companies are already using information from your FB posts to set higher premiums for certain people. You might also be denied insurance. Or lose job opportunities, for those who can work.

 

[Esther12]

One of the big advantages of the forums over FB groups is that it is anonymous to post here. I'm not convinced you will see the same fiery debates there.

Remember everything you post on FB comes with a price attached. For example, insurance companies are already using information from your FB posts to set higher premiums for certain people. You might also be denied insurance. Or lose job opportunities, for those who can work.

I find that the formatting on FB makes it hard to follow a detailed discussion too. It's just not what it's made for.