Today was a good day, so why am I crying? AKA Show me the money!

Ok, I’m pretty tired, having reached my step limit today, but it’s more than that…it’s the millions missing, including myself, and our invisibility in the world of medical research.

It all comes back to Florence Nightingale.

For a few weeks the mere mention of Nightingale’s name has been enough to set me off. Last week I saw her on the show “Victoria” talking to the queen about cholera. I cried when I realised who it was. Today, I was looking for a CFS/ME blue ribbon or blue butterfly image to use for ME/CFS awareness day (May 12, Nightingale’s birthday) and I came across her name on a page that mentioned her.

Florence Nightingale, the incredible nurse who is credited with the creation of modern nursing methods; the woman of standing who rejected her status in order to devote her life to helping and healing others; the social justice warrior who lobbied for and achieved reforms in unfair prostitution laws, and expanded acceptable employment options for women; the writer and statistician and pioneer of infographics, who wanted information to be available and accessible to the less educated (she invented the polar area diagram, aka circular histogram); the hard working saviour of soldiers whose reforms reduced military mortality rates both in wartime and times of peace; the researcher who used observation and analysis to discover and describe the basic connection between health, diet, stress, and sanitation … who was eventually bed ridden by what appears to have been ME/CFS (caused by a parasite found in milk)… it was even called Florence Nightingale disease for a while.

It breaks my heart that someone with such drive and purpose should have to choose between surviving and carrying on her work. It humbles me to be in the same ‘club’ as her. But mostly it’s because her research still matters and matters a lot in the search for a cure for our illness.

Why does her research and analysis matter?

Medical research funding is painfully insufficient in all areas. Funding is allocated according to a variety of criteria. One requirement for most funding organisations is the existence of a testable hypothesis. This means you need to know what you’re looking for and have an experimental design that allows you to show that this is true (by disproving that it is untrue).

Nightingale’s research was conducted by observing patients and their conditions, their disease progression and/or recovery. Her observations and analyses of those factors allowed the development of the understanding needed to go on to design and test a hypothesis. Before these preliminary observations she, and others in the field, didn’t know enough to even formulate the question. This style of research doesn’t tend to get chosen for a piece of the limited funding pie.

ME/CFS research is still very much in its infancy, so much so that we don’t even know what to expect from it’s growth… We don’t know enough about the nature of the illness to know if the answer to treating it will be complex and difficult, taking years of trials, or incredibly simple with a cure available in 6 months. We don’t know enough about the nature of the disease to even know where to start looking.

There are an estimated 20 million people with CFS/ME around the world, all hoping for a cure, or even just a treatment that will help us have a semblance of a normal life again.

  • 75% of us can’t work fulltime.
  • 25% of us are housebound, many of those needing full time care.

That’s 5 million people worldwide who are so sick they can’t even leave their homes.

Unlike some higher profile diseases CFS/ME isn’t ‘sexy’ and marketable. We don’t die; as much as we might want to. We have 1 awareness day per year (although there are now campaigns arising to extend that to a week – the missing millions week, or a month, May Momentum), and we share our awareness day and even our ribbon with a number of other conditions, but else that CFS/ME awareness has is the blue rose. There’s no awareness day when you wear it though. It’s worn when one of us can’t fight any longer and commits suicide. We’re 7 times more likely than members of the general population to die by our own hand). Because finding global data on this is hard (ironically, because there’s not a lot of research on this), I’m using New Zealand’s suicide rates and extrapolating from there. NZ has a suicide rate of 12/100,000 so if CFS/ME sufferers are 7 times as likely to die by suicide than the general population, that gives us roughly 17 of New Zealand’s 20,000 ME/CFS sufferers will die each year by their own hand. That’s 17 people every year who died invisible. We are invisible because we’re stuck at home, shut away behind closed doors and curtains, away from light and sound. The outside world has too much stimulus, is too far to walk, is cold, and generally exhausting. Many of us can’t even go online and interact with social media.

Estimated State of ME/CFS research funding

CFS/ME research needs more funding. But to be very clear here, my complaint with funding isn’t that one area or disease gets too much, but that others don’t get enough. Which essentially means we need more funding for medical research over every area.

The most well funded area of medical research has to be cancer, and within that category it would be breast cancer. Breast cancer research gets US$500 million/year in US government funds alone (I just did a quick google search to get these numbers). I include this to show how much medical research costs.

From 2006-2015 the total global research funding for CFS/ME research was around £50 million (about US$75 Million at the time) …over 9 years. So just over US$8.3 million/year. Funding has risen to approx US$15 or 20 million/year since 2015 but it seems to have plateaued again (I’m struggling to find a good summery of recent research funding levels). That’s about $1 per year per person with the illness.

The estimated cost of CFS/ME worldwide: US$17-25 BILLION, including US$9 billion in lost house hold labour/ labour force productivity. By my estimates, even looking only at that $9 billion of lost productivity, it’s worth investing almost 500 times the current research budget if it means finding a treatment or cure and getting us back into society.

I would put ME in the same category as Multiple Sclerosis (MS), rather than cancer – it’s also a long term, disabling illness with with a lot of  similarities, and the most common comparison. MS gets about US$150 million per year in NIH funding . Worldwide MS affects approximately 2.5 million people. That’s 1/8 as many people as CFS/ME and only half as many in number as the most severely affected CFS/ME sufferers. Yet this disease gets 10 times as much as CFS/ME’s worldwide research budget in the US alone.

Why is ME/CFS so underfunded?

The problem is 2 fold yet circular. The first being that for many year ME/CFS was considered a somatoform – as in a psychological illness with physical manifestations. Research focused on treatments to increase fitness and activity levels, and to address what was seen as a fear of activity. We now know that these treatments caused real harm to those who used them. The second part of the problem, as I mentioned before, we don’t know enough to know what we don’t know. We need exploratory studies that look at anything and everything in the hope of seeing a pattern.

Thankfully a number of recent studies have been able to identity physiological evidence of an illness, such a problems with oxygen uptake in cells, loss of blood cell elasticity, damage to blood vessels, low blood volume, higher inflammation markers after activity etc. so it should stop being dismissed as “in our heads” (and don’t get me started on the stigmatising and dismissal of mental illness!).

What can you do to help?

I am a huge fan of the Open Medicine Foundation. Since its inception in 2012, they have raised $18 million in funding for CFS/ME research. This does not include any government funds because those applications are constantly unsuccessful.
That’s a lot of fundraising but still less than $1 per person with CFS/ME. Most of that funding has come from our own and our communities’ fundraising efforts.

The research coming out of OMF is amazing and it’s shared freely, openly and inclusively. They make all of their data available to anyone who is able and willing to analyse it, so that researchers without their facilities can also be involved. As a result, they have teams all over the world sharing data with each other, and asking those open ended questions that we need to ask in order to understand what is happening and how it can be treated. The lead researchers regularly speak to our community, providing us and our medical carers with information on the current state of the research in a way that even a foggy brained layperson can understand. What they have done with their small amount of money is incredible. We know so much more about this disease because of the work they are doing. I wonder what they could do if they were funded better.

This year OMF will have a billboard in Times square on 12 May. They are charging US$33 (the average age of onset of CFS/ME is 33 years) to have your/your loved one’s photo on it to show the faces of the “millions missing.” If even just the 5 million people who are severely ill had someone pay for their photos to be displayed that would raise $165 million for research this year alone.


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