AFME decide Geneva is where their #millionsmissing contribution should be

https://www.actionforme.org.uk/news/millions-missing-protest-coming-to-geneva/

Millions Missing Protest coming to Geneva
April 10, 2018

Action for M.E. is supporting the Millions Missing campaign with our Millions Missing event in Geneva on Saturday 12 May – and you can get involved at home, online or in person.

Millions Missing is a day of global action, led by US-based advocacy group #MEAction, that calls for health equality for everyone with M.E. Working collaboratively with charities from the US, Australia, Japan and South Africa, we are adding our voice to this call for action.

We are aiming to have contributions from people affected by M.E. all over the world, to demonstrate the need for urgent action on a global scale – which is why we are holding this event in Geneva, the location of the United Nations headquarters and its global public health body, the World Health Organisation (WHO).

We want the WHO and its Member States to recognise M.E. as a “serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients” (Institute of Medicine, 2015) and adopt measures to provide a global and co-ordinated public health response to M.E.

You can get involved by:

• sending us shoes that we will display at the event, representing the lives not being lived as a result of M.E., whether you live with the condition yourself or care for someone who does; you can see the powerful visual impact of this at previous Millions Missing events
• telling us about the impact M.E. has on you or your loved one
• supporting us on social media by sharing our films and images during and after from the event
• attending on the day if you live in or near Geneva and are well enough to do this; everyone is welcome.

We have prepared a simple guide to getting involved that we hope you will find useful.

Following the event, we will work with the Millions Missing campaign to present films and images of this and other events across the world to decision-makers and health officials at the United Nations and World Health Organisation.

Action for M.E. is taking part in this Millions Missing event as part of our international advocacy work. The aim of this work, which we began earlier this year, is an appropriate global public health response to M.E., which can achieve only by working collaboratively with patients, carers, advocates and M.E. organisations across the world.

 

I personally would like to see the uk charities have respresentatives at the uk big city demos & show a united front as happened in the US, and get across that it's not just a handful of the more extreme activist types (as some will think) making a bit of noise.

I would like the support charities to encourage all their members and subscribers to support or attend them in some way , via family proxys if necessary, so that we have as large numbers possible attending the protests rather than a small number.

I would like the charities to use their journalist connections via their media communications employees to ensure that more mainstream press take interest this year.

And finally I would like all organisers to have a clear set of demands at specific bodies over specific things, with effective slogans and so on so that we actually call for action , rather than yet again raise awareness or make vague calls for more money from somewhere which never happens..



I don't know what AFME will achieve their geneva way. It might achieve a lot? But it conveniently lets them get away with not having to criticise or take on the U.K. establishment or stand alongside with protesting angry patients - something I feel they really don't want to do.

 

Personally, I'd prefer to see them (AfME) 'camping' outside Bristol Uni.

 

I am sure Geneva will be very congenial for those attending.

 

It's beginning to look to me very much like a charity that wants to be relevant to the patient population and do right by them but is also very much afraid to rock the boat in the UK. Again, it could be a who funds them issue. Certainly whatever it (might) be they won't feel at liberty to speak about it.

 

But aren't they funded by patients in the UK?

 

Sounds expensive

 

I imagine there are a lot of AfME members scratching their heads now............but no doubt will be reassured it's for the 'greater good'.

 

I expect that they are. But while I have no direct knowledge I expect that they may have other sources of funding too and that it is that funding that might be problematic. I do have one (sadly already vague) bit of knowledge of other funding -- it was announced here somewhere 50,000 pounds from some (London building firm?) Sadly I can't find a link to the info but I have looked.

Their statements say they were loosing money for a while in recent years. Like any charity that can pay staff they focus on paying hired staff to raise funds from corporate donations. Although my biggest concern for having a charity be timid in focusing on advocating loudly for denigrated, maligned and generally oppressed patients would be government increasingly gov't and business interests are aligned and businesses charitable donations aren't always free of strings.

While I don't think that AfME are puppets as per others statements -- because I don't think anyone is being that 'hands on' with regard to AfME operations I do think there may be something in 'where the money comes from' that is a hinderance to speaking out. I could be wrong in that it seems to me that MEA have seemed intimidated by the controlling narrative too but with AfME clearly as we are aware here the difference is in not being able to break with the PACE trials narrative of effectiveness of CBT/GET labelling it as 'controversial'

just as a post script I want to add that when I make posts this long I am always in danger of 'loosing' the thread. At this point I have forgotten your question completely and hope I have not strayed too far off course.

 

So the biggest UK charity decides to join in a global campaign but instead of picking anywhere in the UK it goes outside the UK. Bizarre.

You know, if I was a cynic I might suspect this has something to do with their being resistant to criticizing anyone in the UK doing what has been happening in the UK.

 

Just wondered, is it because WHO headquarters are in Geneva so making a statement there and with reference to ICD code re - classification issues?

 

I really don't know if this is a really good idea, a good idea gone about in an odd way, or a bad idea. I wonder how AfME came to the decision that they should undertake an international advocacy role. They also seem to be doing it on their own rather than in collaboration with other ME patient organisations.Maybe I'm missing something.

I'd certainly be scratching mine if I was a member.

What support will there be in terms of people there on the day for this demonstration?

Do Swiss ME advocates know AfME are coming? ( I'm think I remember reading that the swiss advocay movement was v small?)

As you perhaps can tell I'm bewildered by this, but haven't the cognitive energy to spend on it so I'll just put it down to 'weird stuff that happens'.

(Oooh! - I've just decided to stage a millions missing event in the Caribbean because of... good reasons - anyone want to donate to make this happen? (not shoes, don't be silly, cash to send me there..))

 

Yep! And to think there is already an event planned right on their doorstep in Bristol.

There is more information to be found here and as linked to in @Cinders66 original post. For those interested, you can find a linkedin to the profile of Alexandra Heumber - Head of International Advocacy Action for M.E. (Myalgic Encephalomyelitis) - here.

Maybe I'm missing something also. As per here .. only 4 attendees registered at the time I've posted.

Thanks kindly for your closing comment, I did enjoy a good giggle, even though its not helpful for the muscular/skeletal issues I have in play at the mo.

Wishing everyone improved health and every happiness. John

 

That's a good idea. Is there anyone from Invest in ME on this forum? I see their registered address is in Eastleigh so maybe they'd like to come to the Southampton Millions Missing?

 

I seem to remember some years ago that british tory government made threats/possible law changes to charities that got involved with politics.

 

That would make sense and could be effective- perhaps @Action for M.E. could fill us in on this ?

 

WHO has always been supportive of ME being coded in G93.3 and being an actual disease with disease pathology and has in fact chided UK when they wanted to code it with the code for neurasthenia. NHS was made to print stickers to put in their handbooks.

 

I can't comment on whatever their activities in the UK might be, but I think they are on the right track with WHO. ME exists in every country and is a global issue. While it has got attention in mostly English speaking countries, I think in many countries it's hardly got any recognition or concern at all. That's an extremely big problem (imagine if MS wasn't recognised in half of Europe).

ME is a much bigger issue than just what happens in the UK, and as far as global health problems go, this would be up there with being one of the biggest and the most neglected (if you assume there are indeed 17-30 million pwME globally, who are all extremely disabled). So, although it's a bit radical, I think it's worthwhile to try to get WHO to do something about it. It would be well within their realm of responsibility.

Maybe this is a way for them to avoid doing something in the UK, and it would be worth getting a response from them on that.