Leave your mouse ears at home

Leave your mouse ears at home
Greg Crowhurst
(permission to repost)

"I have my reservations about the Nov 1 protest", someone said to me over the weekend .

"It's the suggestion that people wear mouse ears that I am most concerned about ", she said.

What suggestion ??

Sure enough ,right there on the Protest website : http://www.notsonice4me.co.uk/ it states :

"Wear mouse ears to help publicise XMRV."

As my friend points out , what on earth are the public going to make of a bunch of mouse-ear wearers,   claiming to have some kind of  mouse disease - and apparently demanding to be able to give blood ??

How  obvious will it be that the opposite is true , that the protest is not a demand to give blood but a stand against the cover-up of the real reason people with ME are banned from giving blood....actually, as I type these words,  I am struggling to state our case as simply as possible.

XMRV...cover-up....Biomedical v Psychosocial ...NICE....Blood Transfusion...Can anyone express in a single  short sentence exactly what it is we are protesting about ??

It's a big problem .

 ME is  a hugely misunderstood and generally reviled disease .  How many people walking by on Nov 1st by are going to have the foggiest notion  of Ramsay, the Canadian definition, the WHO classification of ME as a serious neurological disease ??

To all intents and purposes the ban on people giving blood , because it might lead to a relapse, doesn't sound too much like a Stalinist injunction , one that reeks of denial and ongoing oppression. Does it ?

It's complicated.

 I read  Cort Jonhson's superb  coverage of XMRV, over the weekend.  Cort's review just happens to  mention   that  :"XMRV is not found in mice at all; it is related to mouse murine retroviruses but is found, as far as we know, only in humans - another startling finding."

http://www.forums.aboutmecfs.org/content.php?248-XMRV-at-in-the-balance-A-Tale-of-Two-Conferences-CFS

Oh ....did you know that ?

All that aside, there is a deeper issue here and it's to do with   imagery . It has to be faced ; those who are most ill with ME are going to be unable to get to the protest. Those who do manage to get along, well, ME is exquisitely cruel  in that you can go through so much , yet look absolutely fine.

The psyches have done a through job of convincing the public  that people with ME , almost choose to be  just tired all the time. To what extent, though,  does  the other suggestion on the website to "wear a dressing gown" buy into  that ?

Will it help or hinder  our cause , to dress up as "a vampire" - as the website also  exhorts ?


ME is not being taken seriously , right across the board. The psyche's message is certainly one of deviancy - doctors are "ashamed of" of people with ME; those "heart-sink" patients, who don't even warrant physical investigation,  who simply need to pull themselves together and stop wasting precious resources.


Wolfensberger, whose writing has had an enormous influence upon me, for many years,  makes the point that the last thing people who are seen as deviant need to do,  is to buy into any type of negative imagery.(http://www.essaychief.com/free_essays.php?essay=727155&title=To-What-Extent-Does-Normalisation-Apply-In-Respect-Of-People-With-Dementia


My friend so wisely concluded;  "I fear Nov 1st could horribly backfire on us. "

I agree. Those mouse ears, dressing gowns or vampire suits - plus  a confusing , easily  misunderstood message,  could so  easily do the psyches job for them ; by convincing  the public that people with ME  are just  a bunch of nut cases, with a "Micky Mouse" disease....

A clear message  - and a dignified stand. Surely that is all that is required ?

Comments

  1. I agree, Greg.

    Who cares if this virus is mouse-related? It's a HUMAN retrovirus. Frankly, that's all I care about, and that's what people should be worried about!

    I really like the idea of a protest but vampires, mouse ears and dressing gowns sounds more like carnival to me.

    Please whoever goes there, give people a SERIOUS message. This is serious disease, a serious threat to the public.

    Surely that message will do?

    ReplyDelete
  2. I highly suggest the protesters view Rivka's stunning video of her protest in front of the NIH...I don't have the link! but someone here might...

    ReplyDelete
  3. Rivka's Protest: http://www.youtube.com/watch?v=ME764z_4vEY&feature=player_embedded

    Many moons ago I worked at a local blood bank to pay my way through nursing school; and as a nurse I infused blood. Having a well stocked, healthy blood supply is crucial. A compelling way to get the attention of the media is to sponsor a blood drive with your local blood bank center.

    This way we could report about XMRV, MLV’s and the importance of ensuring a safe blood supply, but in a more credible way than protesting wearing mouse ears and dressing gowns.

    Since ppl with ME/CFS are banned from donating, support groups and individuals can sign up healthy people to give blood in their place. Much like a person would get sponsors to support a walk-a-thon. But instead of giving money, they give a pint of blood. This could be done in May for ME/CFS Awareness day.

    Get a local radio or TV station to co-sponsor and cover the event. This might be a better way to raise awareness and get the word out about the ban. - Lori

    ReplyDelete
  4. If people are going to trivialise the protest into a fancy dress party then I fear this will fall right into the psychiatric mode. More harm than good will come out of this. I was considering trying to get myself to this protest but on hearing a few want to do more damage than good by making us a laughing stock & the suffering i will endure afterwards I will not attend

    ReplyDelete
  5. All it takes for evil to prevail is for good men to do nothing. If you have better ideas, let's hear them.

    ReplyDelete
  6. I agree. Leave the Micky Mouse ears at home; take the mouse off the poster; the LA Times has already reported on "...effigies of people they consider villains in the world of their disorder", too late to fix that.

    What next - a jolly cartoon mouse holding a syringe?

    I will not be promoting this event on my site.

    ReplyDelete
  7. I agree leave all silly costumes at home and design really great posters !!!

    ReplyDelete
  8. There's nothing jolly about this protest and attempts to portray it as such are lies.

    The protesters are serious and will deliver a serious message. Trying to say that they aren't is an insult to them.

    Few are intending to dress up and it's not a carnival.

    Please stop distorting this.

    If anyone wants to offer real help and real support, then do something worthwhile now, rather than complaining.

    ReplyDelete
  9. What is the organisers' rationale for the use of mouse imagery on posters and mouse related props in association with XMRV?

    ReplyDelete
  10. I'm not convinced that a protest is appropriate here and I'm absolutely certain that the silly gimmicks will damage our cause. The ban on us giving blood sends out a clear message to the public that people are seriously ill and thus as a country we have a responsibility to ensure that this patient group's welfare is considered and protected. How stupid will we look to those who have no idea of the political issues we face with research etc if a) we seem to protest against something in our favour and b) dress in such a manner that suggests the whole thing is a bit of a laugh? As Greg says, the message about XMRV is a complex one to put across and I see little chance of us doing so with any beneficial outcome through holding a protest in the context of the ban - conspiracy theorists never get a good press even when right! I know that we need to do something, but whether mass public protests of this nature (regardless of occasion) are ever going to be the right move in ME campaigning is a considerable matter for debate. After all, attending such an event is a patient's worst nightmare. Many are prepared to do it through desperation. But humans are quick to judge their fellow man. Will protests such as this one not just reinforce doubt in sceptics (ie "must be malingerers if can do this when they want to") without really highlighting an issue that will have any impact. There is such a thing as bad publicity -nobody should know that better than us given all we've had over the years! Before organising any campaign of any sort, we must find a simple message that people can grasp leaving them open to and interested in more detailed information and then be innovative in our means of highlighting it. I for one think that the public would be shocked to discover that we now have what is essentially a subtle means of media censorship through the Science Media thingy. This is relevant to all citizens, but would open up the way for us to show that the public are not receiving an accurate and full picture of the serious issues surrounding ME. In essence I feel we need to be cautious, creative and a bit more organised before taking such actions. As we've committed to the protest though, it seems vital to leave all distracting imagery out of it and ensure focus remains on the facts: "ban highlights fears for public safety not just ME sufferers". No offence intended to anyone with this as am obviously grateful to anyone willing to use up precious strength to help us all - it's just my perspective.

    ReplyDelete

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