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"Unrest" updates

Mary

Mary

Moderator Resource
Messages
17,376
Location
Southern California
I think if nothing else, the film brought home very clearly and powerfully the devastation that is ME/CFS. I think it would be very difficult for anyone seeing this film to continue to insist we're just tired, or it's all in our heads. I was blown away by the film and am beyond grateful that it was made - thanks so much @JenB!
 
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Hajnalka

Senior Member
Messages
910
Location
Germany
Q&A with Jen and Omar (he joins in later), 28 min.

Presented by Philanthropy New York’s Health Working Group - everybody in the audience works in the health care system! :thumbsup:

Bad quality, but very interesting. Some new information, that I haven't heard in other interviews so far. Great to hear about even more plans for the campaign, e.g. to make short educational videos. Jen also stretches several times that she does not represent the typical ME patient because she's privileged. And that the typical pwme never gets to see a specialist and doesn't get treatment or care.

Jen is brilliant as always, she makes many great points. And I love that she asks the audience for recommendations for the campaign to reach more health care workers. :)

 
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Yogi

Senior Member
Messages
1,132
I am a big fan of Jen Brea, ME Action, MEPedia and the Unrest film project. I think they have done so much in the last year to help our cause and have really moved things forward and make me very hopeful.

However I was very disturbed and saddened to hear that Action for ME are partners.

https://www.unrest.film/time-for-unrest/#advocate

I am now quite concerned at this given AFME claim to be a patient organisation but are actually a front for the BPS and collude with Peter White, Esther Crawley, Michael Sharpe and are responsible for the PACE trial.

AFME always tries to take credit for others patient advocacy but then behind the scenes backstab us over and over again.

Does Jen Brea and the unrest team know this?

:(:(
 
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Yogi

Senior Member
Messages
1,132
slysaint said:
@JenB
Click to expand...

Didn't want to make any problems given she has probably got so much on her plate right now.
I just think it is sad that AFME have jumped on the bandwagon with Unrest given if one looks at the root cause of the problems in the UK they are behind many of them. I just feel it is very parasitical for AFME to free-load on the back of the publicity of Unrest and hardwork by Jen Brea and ME Action. I am very sad at that.

They could choose to pretend to support Unrest so that people could end up donating to AFME by accident but to get on as charity partner is remarkable and shocking. I kind of expected them to do these sort of things. They have always taken credit for the hard work of ME advocates whilst undermining and working against those very advocates. It is AFME's special skill, they are like Simon Wessely very good at networking with influential people and getting public recognition whilst working actively against pwME.

AFME are behind Esther Crawley and is an advisor and without AFME's authority of patient support of EC and let us not forget PACE trial they would be stopped and not have happened in the first place.

http://forums.phoenixrising.me/inde...-how-to-deal-with-anti-science-brs2017.51066/
http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/
http://web.archive.org/web/20030804230351/http://www.afme.org.uk/news/pace-q&a.shtml

AFME and the DWP work together so people are refused disability benefits and as we know PACE trial was funded by DWP.

AFME are also colluding with Esther Crawley who has still not apologised to David Tuller for her smears.
http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/
http://www.virology.ws/2017/05/15/t...mrc-affirms-full-support-for-libelous-esther/

I understand how anyone could think AFME are a ME charity as they do a very good job at disguising their true objectives. One only needs to watch their actions rather than there words.

AFME are also joining with Stephen Holgate for Unrest.
http://forums.phoenixrising.me/index.php?threads/holgate-afme-talk-at-royal-free-hospital.55173/

I am very concerned that people could end up donating to Action for ME instead of ME Action in the excitement of Unrest. I am sure AFME will be actively soliciting donations to "help those poor people with ME". After the MillionsMissing protests last year AFME launched a petition the following day to dupe people into signing a petition for research and it was found to be conducted by Esther Crawley - MEGA. Many have now had to fight to stop MEGA like we did PACE trial.

Great charities to partner with are InvestinMe, Tymes Trust and 25% ME Group.

I didn't expect this to be a long post but I just felt so annoyed by this and just wanted to get this off my chest. It is Unrest's decision to decide who to partner with. I don't wish to tell them what to do but have written this incase they were not aware of AFME's background and objectives are.

Thanks to everyone at MEAction and Unrest. I think you are all doing a great job and best wishes.
 
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Yogi

Senior Member
Messages
1,132
Joh said:
I guess that partner means sponsor (don't know of course) and that these (great) charities can't sponsor anyone and have no paid staff.
Click to expand...

What does partner mean?

Sponsor means supporting the Unrest project financially or otherwise. I do not think that is what it means. I could be wrong though. If so then not that bad.

Partner I thought meant just promote and effectively partner with Unrest. Not great if it is AFME. The issue is if AFME try to exploit this and get people to support them is where the problem lies.
 
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NelliePledge

Senior Member
Messages
807
@Yogi good point to flag up concerns about the way AFME have operated in the past and, we suspect continue to be close with the likes of Crawley in particular. I agree it would be unfortunate if AFME get donations on the back of Unrest

On the other hand I think it is very good that supporters of AFME will be exposed to the messages in Unrest that they aren't hearing because they are in AFMEs NHS CFS/ME / Optimum Healthworld rather than the world of ME biomedical. It's unfortunate that Unrest have to work with AFME but they reach people who need to hear this stuff as much as if not more so than other charity supporters. unrest appears to be reaching the parts other campaigns cannot reach

Edited to add ref to OHC

Interesting seeing Facebook comments some wondering how Jen is able to do the events and travel are hearing that she has access to medication. This will come as a revelation to a lot of people in the UK
 
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Binkie4

Binkie4

Senior Member
Messages
644
Not sure where I read this, but I believe AfME are showing Unrest at their A GM in Nov. It's in the offices of a London solicitor as far as I can recall but don't remember which one. I think entry is free.

I briefly considered attending ( not as a member of AfME) because the film was being shown in the day.

The Monday showing at the BFI was at 8.30pm: completely impossible for me without total crash. Wish there were more daytime viewings. I know there is one in Crowborough on a Sunday afternoon in mid Nov so it will be that or iTunes: I had hoped to view it as part of a community.

Also cost: I saw today that tickets for Chester viewing are £10. Am uncomfortable asking family/ friends to pay this. There seem to be a number of opps for free views in London.

Anyway really looking forward to seeing this. Thanks to Jen Brea for making it and coming to London to take part in the Q and As.

EDIT: Jen is coming to UK to attend showings. Thank you @NelliePledgeo
 
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slysaint

slysaint

Senior Member
Messages
2,125
N

NelliePledge

Senior Member
Messages
807
Binkie4 said:
Not sure where I read this, but I believe AfME are showing Unrest at their A GM in Nov. It's in the offices of a London solicitor as far as I can recall but don't remember which one. I think entry is free.

I briefly considered attending ( not as a member of AfME) because the film was being shown in the day.

The Monday showing at the BFI was at 8.30pm: completely impossible for me without total crash. Wish there were more daytime viewings. I know there is one in Crowborough on a Sunday afternoon in mid Nov so it will be that or iTunes: I had hoped to view it as part of a community.

Also cost: I saw today that tickets for Chester viewing are £10. Am uncomfortable asking family/ friends to pay this. There seem to be a number of opps for free views in London.

Anyway really looking forward to seeing this. Thanks to Jen Brea for making it and coming to London to take part in the Q and As.
Click to expand...

Jen is coming to other UK locations outside London too
 
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Inara

Senior Member
Messages
455
@Yogi
Thanks for your post about AfME and all the information within.

If all that's true - that behind AfME are actually Wessely, Crawley&Co - then cooperating with them is dangerous for "our cause" (to get ME accepted and to receive treatment and so on).

"Thus, what enables [...] to strike and conquer, and achieve things beyond the reach of ordinary men, is FOREKNOWLEDGE. Now this foreknowledge cannot be elicited from spirits; it cannot be obtained inductively from experience nor by any deductive calculation. Knowledge of the enemy's dispositions can only be obtained from other men." (Sun Tzu on Spies)

It is the job of a mole to connect, to maintain the illusion he has the same opinions and shares the same goals, to find weaknesses, to provoke crises and then to strike. Might it be possible AfME is a mole or "spy" or something like that? Or is that paranoid?
 
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Yogi

Senior Member
Messages
1,132
charles shepherd said:
We are working very closely with Jen Brea and the UK production team on a number of initiatives

The main one is the parliamentary screening and discussion that we have arranged at Westminster - this will take place in the Speaker's House by kind permission of the Speaker (John Bercow is an MEA Patron). Jen Brea will be coming to Westminster!

I will be taking part in some of the post-film discussions that are being arranged - both here and abroad (I am about to book my flight to Holland for the screening at the University of Leiden)

Our press and social media people are trying to get as much publicity for the film as they can

And there is more….

CS
Click to expand...

No date was mentioned by the MEA and Charles Shepherd about when the film will be shown in parliament.

On ITV it says next Tuesday 24 October.

https://www.youtube.com/watch?time_continue=7&v=7UVmIc6FKnE

How many MP's are going. Does anyone know?

It would have been a good idea if we knew the date, for constituents to get their MP to go along to this showing. Especially those who had signed the EDM on NICE and petitions.
 
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