A global campaign group wants to take action for what it calls the ‘millions missing’ to the next level in the UK. But it needs the public’s help to do it.
The Millions Missing
Myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS or ME, is a chronic systemic neuroimmune disease. But the disease has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’.
- Increase funding for research.
- Carry out more clinical trials.
- Provide better medical education.
- Increase public awareness in relation to ME.
As #MEAction says:
ME affects 15 to 30 million around the world, yet this disease remains invisible and people are missing from their own lives.
A UK coordinator
#MEAction is a global, grassroots network for people living with ME. The Millions Missing campaign is already extremely successful, having gone from protests in 12 cities to over 300 in just two years. Now, to increase its reach even further, #MEAction is looking to recruit a UK coordinator. But it needs the public’s help to do so. It says:
Help us raise £55,000 to hire an on-the-ground, UK organiser for advocacy, campaigns and medical outreach. Your donation will support salary, taxes, travel, expenses and associated costs. Once we’ve reached half the goal (£27,500), we’ll start the search to fill this position.
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- Community organising & outreach, including linking up with other disability rights organisations, medical professionals, politicians, and charities.
- Coordinating both #MEAction UK and #MEAction Scotland in their actions, including the Millions Missing campaign.
- Medical & scientific outreach.
- Partnerships, including collaboration with other ME campaign groups and charities.
The Canary caught up with Jenny Horner, Ruth Lampard, Adam Lowe, Kim Gurav, Sarah Reed, Nathalie Wright, and Claire Tripp from #MEAction UK to talk about their crowdfunder. They jointly said that having a UK coordinator is “vital” for numerous reasons:
A UK coordinator is vital both to sustain the movement, and to support our current volunteers as most of them have ME.
#MEAction has succeeded so far because of the passion of the volunteers involved. For us, advocacy isn’t a choice. We are fighting for the future that ME has stolen from us. We are in a race against time to get the research and treatment needed to stop any more of our community dying, to ensure that people who can’t move or speak can do so again.
However, ME creates a perfect prison; as we fight for investment in biomedical research and the removal of harmful treatments, we risk our own health. A UK coordinator would ensure that our movement will continue to grow, and to support our volunteers with ME to ensure that advocacy doesn’t harm their health.
It’s quite staggering that many of #MEAction’s volunteers do this while living with ME. And while symptoms vary for every person, people living with it often experience:
- A worsening of symptoms brought on by physical activities, mental activities, or both. Often referred to as post-exertional malaise.
- Flu-like symptoms.
- All-over pain.
- Sleep disturbance/problems.
- Cognitive impairments.
- Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
“Mind boggling” efforts
The #MEAction UK group told The Canary that their volunteers are doing fantastic work, but they’re limited in their reach:
Many of our volunteers are too sick for paid employment but can still contribute in a reduced capacity. The volunteers have valuable skills and experience to offer and when this is properly organised and coordinated our achievements will multiply. Volunteers come to #MEAction with a diverse skill-set and different backgrounds. The range of activities going on behind the scenes in any given week can be mind boggling, and this can’t be scaled up without effective coordination…
We need someone who can support and coordinate these efforts, build common resources and toolkits, and take a long-term, strategic view. By hiring a coordinator we’ll also be able to make better use of our growing volunteer network in the UK. We can only involve volunteers to the extent that we have someone with capacity to coordinate and help see tasks through to the end if we crash. It isn’t a contradiction to say that hiring staff expands volunteer capacity.
A political shift?
Scaling up its operations is crucial for #MEAction UK; not least because a political shift in the attitude to ME has recently begun. This has seen parliament begin to take note of the scandalous situation surrounding treatment, research, and support for the disease.
#MEAction UK is pragmatic about this. The group told The Canary:
We have something unique that we bring to UK ME patient collaboration, as the grassroots outreach arm of a global movement. There is worldwide concern about the approach to ME research and treatment taken in the UK, and this has a contagion effect. If our efforts help improve the official clinical guidelines, for example, this benefit will be felt by people with ME around the world. The UK health politics of ME are particularly tricky and we need someone who can support our ongoing parliamentary and medical outreach.
There are other UK-only patient organisations who are working hard in this area and we don’t intend to duplicate their longstanding efforts. We wish to collaborate, but collaboration tends to involve meetings and that is difficult for disabled volunteers. We need someone who can attend meetings and events and network continually with other organisations and stakeholders.
Fighting for the ‘Millions Missing’
ME is a devastating disease. But the UK government’s response to a chronic condition affecting 250,000 people in Britain alone is to invest just £2.23 on average, per patient, per year, on research. It’s sadly, therefore, down to campaigners and those living with the disease to keep pushing for more research and awareness of ME. As the group noted:
We need as much organising power as possible as we continue to fight for research funding commensurate with disease burden, as we fight against the dismissal this disease still so often meets.
We are an incredible community. We’ve shown how much we can love each other and ourselves. Love in the face of stigma, desertion and indescribable pain is a radical act. It is powerful activism and it is changing the world.
It’s this need to ‘change the world’ that makes #MEAction’s campaign for an organiser so vital.
– Read more from The Canary on ME.
Featured image via The Canary
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