Star and Crescent are proud to be working with Portsmouth fundraising campaign M.E. Foggy Dog and its founder Sally Callow on a week of articles devoted to raising awareness of Myalgic Encephalomyelitis (M.E.). In part V of this week’s 6-part series, Sally explores how female sufferers – and the disease itself – are dismissed as ‘hysterical’. She also looks at how recent research comparing the experiences of Multiple Sclerosis patients with M.E patients highlights the prejudice M.E sufferers are still struggling against in the medical profession and in wider society.
Myalgic Encephalomyelitis (M.E) is a hugely misunderstood and under-represented disability. In addition to living with the condition, sufferers like me also frequently deal with the ignorance of healthcare professionals and wider society. Sometimes it feels like a daily fight to be believed, as we are often told the illness is ‘all in our heads‘ and that we are hypochondriacs and malingerers.
These attitudes continue, despite M.E being recognised as a valid condition by the World Health Organisation since 1969. So where did the scepticism about the very existence of M.E come from?
Women are 2 to 4 times more likely than men to acquire M.E, leading many professionals to dismiss sufferers as ‘hysterical’ and the condition itself to be linked to ‘female hysteria’. This is partly why it takes a long time for the condition to be acknowledged as valid, and for progress to be made in terms of research. M.E, Fibromyalgia, and Multiple Sclerosis have all been labelled as ‘female hysteria’ but with M.E, the label has been harder to shift.
The reason for this dates back to a paper written by two psychiatrists in 1970, which has influenced medical, public and media perceptions of ME as an illness for decades. The M.E Association has described the study as follows:
It would almost be funny if its effects hadn’t been so tragic. And after all, who would believe it? A disease defined by a flawed 40-year-old study – where no patients were interviewed and which concluded that ME was mass hysteria because many of those affected were women.
You can find out more about the study here, but if these two scientists had undertaken interviews with patients they would have discovered men had the same illness. While accusations of being ‘hysterical’ are obviously damaging to women, there is also a stigma for men in suffering from a disease many still dismiss as ‘female hysteria.’
As a campaigner working to raise awareness of M.E, this is unacceptable and I work hard to smash down this additional barrier. I also wonder if it is possible yet to accurately assess the numbers of male M.E sufferers worldwide while social stigma may make men reluctant to admit they are suffering from the illness.
But hysteria isn’t the only condition regularly cited to M.E patients to question our experiences of the illness. Another common one is Multiple Sclerosis (MS).
Personally, I dislike comparing illnesses, each condition has individual issues for sufferers to contend with, and suffering should be considered on an individual basis. However, M.E is often belittled when compared with other conditions, such as MS.
Many people confuse the two conditions due to the similarity in abbreviations, although Myalgic Encephalomyelitis reads and sounds nothing like Multiple Sclerosis. I have lost count of the amount of times I have been talking to someone about M.E and they say ‘yes, my friend/colleague, has M.S but they manage it with drugs’ or ‘but they can work around it’.
The confusion is unhelpful as well as inaccurate. People assume that M.E can be treated, for example, but the two diseases differ greatly when we look at treatment, understanding, and research funding.
A recent study compared ‘the functional status and well-being of people with well-characterised ME/CFS with people with multiple sclerosis (PWMS), as well as healthy controls (HCs).’ The reason for the study is given as follows:
People with Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) continue to struggle to have their condition recognised as disabling in the face of public and professional prejudice and discrimination.
The research concluded that people living with M.E are measurably more disabled than those living with M.S:
More people with ME than people with MS lost their jobs after becoming ill, and the income of people with ME decreased markedly more than for people with MS.
Unemployment costs are borne by both the individual and society. The prevalence of ME/CFS […] and the economic cost of the illness to society should be powerful motivators for policy makers to encourage better funding of research to discover the cause of, and establish effective treatments for, this disease.
In terms of numbers of patients, M.E affects more than double the amount of sufferers in the UK as M.S (M.E 250,000 and M.S 100,000). Yet M.E patients seem to get the thin end of the wedge in terms of understanding, research funding, and support from healthcare professionals.
The UK government may not be moved by compassion, but must see that ignoring the M.E problem is not beneficial to our economy. M.E sufferers want to work, we want to contribute to society but are currently unable to. Helping us would indirectly help the economy by allowing us to escape a dependency on benefits and survive financially.
In terms of research funding given to M.E, Dr. Nancy Klimas, director of the Institute for Neuro Immune Medicine, reports that in the US, more funding has gone into finding treatments for male pattern baldness than into treatments for M.E. Dr Klimas told Al Jazeera in January 2018:
It’s been a very, very small budget…I had looked up male pattern baldness … $18 million for male pattern baldness [but only] $3 million for chronic fatigue syndrome, an illness that affects 1 million people in this country that has at least 25 percent of them out of work and on disability.
The lack of government research funding for M.E is a worldwide issue. This means M.E charities are heavily dependent on donations from the public, but there is no doubt that misunderstanding about the condition also affects the level of support and funding they receive.
This is partly why charities and advocates like me work hard to raise awareness of the condition. Everybody knows somebody with M.E but often people still don’t fully understand the condition. That is something that needs to change in order for the M.E community to progress towards a brighter future.
My charity brand and fundraising campaign, ME Foggy Dog has, over the past 4 years, raised over £10k for research funding for the ME Association’s Ramsey Research Fund. However, the average cost of one research study is £30k, and the ongoing fight for research funding is both difficult and a long term struggle.
So why not get involved? Come along to one of the events today or tomorrow for International M.E Awareness Day on 12th May. More details below.
Friday 11th May 2018, 12.30 – 2pm, M.E Awareness Week – Go Blue!
Join Sally at the Frank Sorrell Centre for a coffee and a chat, and find out more about ME Foggy Dog and M.E/CFS. This is a family friendly event with activities for the whole family to take part in. ALL WELCOME!
Saturday 12th May 2018, 12.30 – 2pm, International M.E Awareness Day – Go Blue!
Join Sally for a coffee morning in the Lily & Lime cafe in Central Library. Wear blue to help spread the message!
This is a family friendly event with activities for the whole family. Take part in our M.E quiz to be in with a chance of winning a pack of Quirk, a family fun card game and 2x best seller in the UK, it is nominated for 4 awards in gaming this year and is showcasing at the UK Games Expo in Birmingham and International Spieltage in Essen, Germany 2018. The prize is one of the first 1000 to be printed.
And of course, read the rest of Sally’s articles from this week here on S&C.
Head over to the ME Foggy Dog website to follow Foggy’s travels on his blog, donate and shop to raise money for the ME Association, and of course, follow ME Foggy Dog on social media: on Twitter, Facebook, YouTube and Instagram.