Edward Shorter to give talk on CFS at NIH

[taniaaust1]

I think if millions missing could continue to grow it would be an excellent venue.

I think it will take a lot more then laying out of shoes thou that has been a great idea to draw some members of the publics attention to our plight, I think it can only play a small influence onto our advocacy attempts. Its too easy to ignore a quiet protest and social experiments have been shown that people just generally switch off when it comes to sob stories or people suffering hardship and asking for help one could say.

I posted a link on our entertainment thread in our community section of these forums of a social experiment in which they set up to see if people would give a donation to a homeless person who was hungry sitting with a sign on this or to a lady who sat with a sign asking for donations for her to go and buy some more makeup. People choose to help the t good looking female wanting donations to buy make up and didnt donate to her when she posed as a hungry person living on the street wanting donations to food.

Ive watched many of these social experiments and they really I think help show us what wont work well. Things like shock factors and things people havent seen done before get attention.

Documentaries are another effective modern strategy - not ones only people with CFS will watch, but things like VICE. Petitions are jokes. Its about accessing a long-term media narrative through which congress is taken on. There are ways to do this and millions missing is certainly a good start.

nods I agree with this last part and we certainly could do with more good documentaries or even comedies to draw attention to this illness. (I really think a great comedy could be made about a ME/CFS and the stuffups which happen in life when one is functioning like with half a brain).

We need a good movie maker involved with an interest in this illness to produce some movie that could get well known just like some other diseases have had well known movies about them eg The Elephant man, Forest Gump, My Left Foot (Cerebral Palsy), Rain Man (Autism), The Theory of Everything (ALS), Girl Interrupted (borderline personality disorder), A beautiful Mind (schizophrenia).

How about a group of us try working on making up a whole movie screen play to send into the movie making people... Im sure with all the experiences we have, we could come up with something interesting.

It could be like cross between like a Mr Bean thing (I've showered while wearing my handbag!), someone falling all over the place and in some funny places (I once while dizzy fell face first in mud) or having to sleep in weird spots due to exhaustion (I had to have a bit of a nap at daughters wedding which people found rather amusing at time), the character could start snoring under a church pew while a wedding is going on), some endearing character with ME.

And have the character making all kinds of word screw ups with people causing funny situations. It could end by her accidently walking out in front of a truck and showing it coming at her while she's stopped forgetting she's crossing a road (I almost got hit by a car that way forgetting I was crossing a street) and "THE END" anyway, Im sure the community could come up with something good for a movie script to try to send places.

 

[alex3619]

Without civil disobedience of the people in the past, we would live in a much worse world today.

Nonviolent civil disobedience has a history of creating change. Its just hard to do when you cannot make it to the front door without trouble. What is also not clear is exactly what issue we are protesting on, without which such protests could be considered a news oddity. I suspect such issues will be much clearer soon, such as when we have effective treatments and only a very few can get them. THAT would be a good time to make civil disobedience a priority.

Another would be over abusive laws and regulations, and that issue exists now. I have made that case with respect to current DWP policies in the UK. Lack of research, while a major crisis in reality, is a very hard one to sell to those who are ill informed.

Should my country, Australia, go the UK DWP route, I have my own plans for a civil disobedience campaign. We have started down that path but not gone very far.

When the alternative to protest is death, and its about specific issues affecting a particular patient, its a no brainer, no matter how sick you are.

 

[Solstice]

How about a parade of naked people in wheelchairs ... to protest we refuse to remain invisible. (Im only kidding but who knows maybe it would be a good idea, it would certainly draw more media attention and I wouldnt be against anyone who did that. Maybe we do need to go that dramatic and keep going that dramatic

I'll only attend if you pick a particularly warm venue. Got an image to maintain .

 

[taniaaust1]

I'll only attend if you pick a particularly warm venue. Got an image to maintain .

how about they just wear gloves and socks (they could also wear eye masks to represent light sensitivity but it would also help to hide identity if people take photos, beanies on heads would help to hide identity too)

 

[trishrhymes]

Trouble is, much as I like some of these ideas, it might just feed into the public's perception of us as loony attention seekers.

I think the shoes protests are a brilliant idea, and would vote for more and bigger ones that disrupt politicians going about their jobs.

Maybe some clever techy could rig up holograms of us lying in bed and challenge politicians to walk through and ignore them...

Or maybe real beds with dummies in them...

 

[taniaaust1]

Trouble is, much as I like some of these ideas, it might just feed into the public's perception of us as loony attention seekers..

if done in Engand yes probably as those thought of our population have already been pushed in media by some well known psychs, but in other parts of the world we havent been constantly put into the media in a negative psych light, rather its been more of a cause of complete ignoral of our patient group. Other parts of the world do not have a "controlled" by wessely school media centre like the UK does.

I agree that something too outrageous wouldnt go down well in UK.

 

[Sean]

Trouble is, much as I like some of these ideas, it might just feed into the public's perception of us as loony attention seekers.

We do need to be careful.

I think the shoes protests are a brilliant idea...

Me too. Touch of marketing genius about it. Much thanks to the person/s who came up with it.

Maybe some clever techy could rig up holograms of us lying in bed and challenge politicians to walk through and ignore them...

I like.

 

[Tuha]

I would really like to know who invited him. Do we know it? I cant believe that after NIH´s proclaims that they are taking ME very seriously now that they can invite such a person among the other ME speekers.

Just when you think that the situation is changing - you wake up and think that the world had to get crazy. Btw. it´s very sad how all this health system funktions and the influence of pseudo psychiatrists is very dangerous

 

[Countrygirl]

Maybe some clever techy could rig up holograms of us lying in bed and challenge politicians to walk through and ignore them...

Or maybe real beds with dummies in them...

Yes, why not?

A row of beds with skinny dummies attached to feeding tubes.

A row of coffins to represent those who have died.

We need to take notice of the MS Society's depiction of their most severely affected sufferers to grab the public's attention, I think.

 

[slysaint]

I've said it before and I'll say it again; get Voice from the Shadows circulated/shown more, ditto the Sofia Mirza Youtube vid posted recently on a separate thread.
Also as I posted on another thread
"
Maybe the time has come to start trying to publicise the good research going on in the US and openly commit to supporting it through fundraising etc.
One nice headline saying that the 'UK ME sufferers back US biological research' and 'have no faith in the CMRC'.
"
EDIT: Anyone know anything about crowd funding? (yes I watched the Apprentice last night)

 

[Neunistiva]

Nonviolent civil disobedience has a history of creating change. Its just hard to do when you cannot make it to the front door without trouble.

But a lot of us have people who love us deeply and would do anything to help us. All we need to do is ask.

What is also not clear is exactly what issue we are protesting on, without which such protests could be considered a news oddity.

I thought that one is easy: stop dragging their feet, give more money for research and stop giving equal grounds to unscientific hate-mongers as they do to real scientists.

Trouble is, much as I like some of these ideas, it might just feed into the public's perception of us as loony attention seekers.

We do need to be careful.

Just like I said, we are afraid to ruffle any feathers.

But the truth is, they ALREADY think we are loony attention seekers. Or they simply don't care. We really have nothing to lose. Dr. Lipkin, Dr. Davis, Dr. Naviaux, Dr. Klimas, Dr. Younger etc. are not going to think we are loonies, they will fully understand where we are coming from. And apart from those few select doctors, no one is on our side anyway.

You think people were delighted with those wonderful homosexuals who so kindly shut down whole FDA for a day?

They were attention seekers, and they should have been, being so ill and no one helping them.

Sure, AIDS was a different case because public was afraid of catching it and it was deadly very fast, but the point is, society didn't care about AIDS patients until they risked everything and angered many people.

 

[tinacarroll27]

I am from the UK but we are in the same position and I watch what goes on in the USA and I know the patients in the USA watch what is happening in the UK as well and I think the same strategies can be use in both countries. The petitions are great and the millions missing protests as well but I think what we need to do is make more connections with other disability and human rights groups. I have seen support from AIDS activists with Millions Missing but we need more of that. We also need to get our story out anyway we can. Get public outrage! May be get a private PR company involved with getting our message out (which I know will cost money but we can try and get the money together through donations). The reason they are getting away with this for so long is because they have been able to control the story and the image of this illness and we have had no voice! We need a voice and image, like a commercial product we need to sell ourselves and the truth, They get away with this because we are invisible to everyone! The truth has been invisible and our story has been invisible.

 

[Sean]

We do need to be careful.

Just like I said, we are afraid to ruffle any feathers.

I did not mean cautious or meek, I meant smart. Perhaps 'careful' was not the best choice of words.

If you check my posting history you will know that I am not afraid of being blunt about these bastards, and more than just occasionally.

 

[Sidereal]

The NIH need Shorter about as much as they need a shingles outbreak.

 

[Denise]

Lindy, a commenter on OccupyME noted that the current NIH Events list goes only until Monday 7 Nov. (Shorter's presentation is to be on 9 Nov). The OccupyME link is to a cache from 1:46pm on 3 Nov.
Whether he is no longer speaking, still speaking or??? has yet to be determined....

 

[alex3619]

I thought that one is easy: stop dragging their feet, give more money for research and stop giving equal grounds to unscientific hate-mongers as they do to real scientists.

The problem is its very hard to make that case. Not that we couldn't , but that it is hard. The more specific we make the case, the more easily understandable by the average reader, the better. There are ways to make that case, which have been discussed many times, but they are all complicated, and sending a message is better if the message is simple. A simple clear message that is hard to misinterpret is important.

 

[mfairma]

The problem is its very hard to make that case. Not that we couldn't , but that it is hard. The more specific we make the case, the more easily understandable by the average reader, the better. There are ways to make that case, which have been discussed many times, but they are all complicated, and sending a message is better if the message is simple. A simple clear message that is hard to misinterpret is important.

The whole story may be complex, but I just don't agree that the message has to be. "Government has mismanaged this disease for three decades and we won't stand for it any longer. We need treatments, we need research, we need clinical care."

 

[Nielk]

The whole story may be complex, but I just don't agree that the message has to be. "Government has mismanaged this disease for three decades and we won't stand for it any longer. We need treatments, we need research, we need clinical care."

Exactly. This has been going on for three decades and is currently continuing.
Why is it such a surprise that NIH invited Shorter to speak and why such a big uproar about one lecture when Walitt is continuing to work for NIH and much worse, was appointed as lead investigator for a disease he promotes to be an imagination of the brain.

NIH disregarded all our protests to take him off the intramural study. NIH disregarded out demand to have a voice in every part of the planning and execution of the study.

They say one thing but their actions don't follow their words. Why should they change when the majority of community is accepting of this?

 

[Snow Leopard]

No one with any brains is going to show up to listen to a non-scientist like Shorter anyway.

 

[Denise]

No one with any brains is going to show up to listen to a non-scientist like Shorter anyway.

It'd be nice to think so but this isn't Shorter's first talk at NIH.
And the BPS crowd get quite a bit of media coverage, conference recognition, etc.
When it comes to this disease I wish they didn't get it, but they do....