Nothing wrong with disagreeing with an approach but, personally, I think one of the successful things about #MEAction, to date, is that it's taking more than one approach, which it's been able to do by getting more people on board. But I can imagine people will disagree with doing things that way, and there can be times when an ultra-focused approach is more successful. It's just trying to find the successful approach to each problem, and that is easier to write than to actually do.
This is the most widespread, global, informative, awareness-raising, powerful movement that has occurred to date in ME history!
Total gratitude and awe to @JenB and the worldwide team of patients and supporters that have made it such a success
Another one from the Dutch team! At night on the 27th they made the news section on a national commercial tv channel. The (soft) news section is called Hart van Nederland (Heart of the Netherlands). They interviewed one of the patients who was at the protest in The Hague. I'll post the link here, although the video can only be watched in the Netherlands: http://www.hartvannederland.nl/video/uitzendingen/2016/27-september-2016-laat/
Presenters in the studio:
The Square in front of the Lower House was full of shoes today. Patients with ME asked to focus on the disease where you lose all your energy. Sometimes you have to choose for example between combing your hair or going outside because both would be asking too much strength. For ME patients it's a daily thing. So too for the young Arlette Poolen.
Meeting girlfriends somewhere other than at home often is not possible. Also, a major symptom of ME, for me personally, I'm hypersensitive to noise. So if I'm somewhere where there's many people then I have ear plugs to deal with it a bit. But I do not last long either.
VoiceOver while seeing pictures of Arlette and her parents at the table: The 22-year-old Arlette from Eijsden in Limburg is tired every day. Especially for this action she went with her parents to her sister in The Hague yesterday. Because of this she has enough energy to take action.
It occurs occasionally in some people to think I am a poser. As if all day I am sitting at home for pleasure. But that is not the case. It's obviously not fun to hardly get out of your house when you're 22.
VoiceOver while seeing pictures of Arlette and her parents walking out of the house and getting into the car:
ME is not yet recognized in the Netherlands as a disease but Arlette hopes along with other patients that things will change through this action.
Image of the shoes on the Square
You see here are all those shoes. They symbolize all the people with ME who are too sick to protest. Which are represented by their pair of shoes. I think we have about 1000 pairs of shoes. All these people miss their life because of ME.
Linda Voortman (2nd MP for Green Left):
These people ask for recognition. And recognizing, by the time we actually recognize this is a disease we can and have to do something about it, then comes the rest. Like ...the training for caregivers. And the treatment will be... clearer. Minister, take a good look at this. Can we really not just recognize ME and then take further steps to really help these people?
Image of Arlette and her mother walking in between the shoes:
Arlette today has at least done the best she could. But that did not really come easily:
I am now standing here, but I probably need at least a week, probably longer, to recuperate.
Picture of the posters and Arlette watching over the square exhausted:
So probably I will spend at least the next few days in bed, but probably much longer.
This week, demonstrations occurred in 25 global cities world-wide to focus attention on a neglected, devastating disease — Myalgic Encephalomyelitis (ME), an illness that also goes by the misleading name Chronic Fatigue Syndrome (CFS). At this event, the most powerful demonstrators were those who could not attend — the bedridden and housebound patients.