I'D RATHER HAVE H.I.V THAN M.E

"My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my ME/CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses I would rather have H.I.V."

Nancy Kilmas, professor of microbiology and immunology.

M.E: A TRULY HORRIBLE HISTORY

There are countless debilitating illnesses in the world, but I hope that none of them have a history like this one.

M.E sufferers have been mocked and treated with disdain and cruelty for decades as a result of a paper published by 2 psychiatrists in 1970. They wrote about a viral incident in 1955 at the London Free Hospital, which led to hundreds of staff being taken ill and the hospital closing down for several months. Most of these staff never recovered. After studying this debilitating post viral illness, the WHO named it M.E - myalgic encephalitis. But, in 1970, the 2 psychiatrists didn't interview anyone involved, yet came to the conclusion that M.E wasn't a real physical illness after all, it was all in the mind and brought on by mass hysteria.

Why? Because most of them were women.

Their terrible legacy lives on, promoted by other often misogynistic psychiatrists (one of whom is currently a government advisor and on the board of the NHS). They even rejected the name M.E and invented a new one - chronic fatigue syndrome - to diminish the serious impact of the disease as simply being tired and unfit. This has caused untold damage ever since.

I'm amazed that anyone could think that I've made up my illness, that I don't want to get better, that I voluntarily gave up my job, my hobbies, my independence, and no longer want to go for a walk, a bike ride, spend time with those I love (or even watch Strictly!)

THE DEVASTATING CONSEQUENCES

We regularly face unkindness, ranging from disbelief, accusations of laziness, refusing us PIP and other benefits, to taking children with M.E from their families - "safeguarding" them because "the parents are causing them to be ill". A look at the headlines from the Canary, recently published online, and shown in the photo collage makes for disturbing reading.

At the moment, at least 3 women are in hospital as M.E has shut their bodies down to the extent that they require feeding tubes. But they're now suffering more than when they were first admitted and are close to death. Staff have told them they don't believe they have M.E, that they're making it up; they've prevented their families from seeing them, refused second opinions from renowned M.E specialists, refused to implement the NICE guidance for treating M.E, threatened them with deprivation of liberty and had them sectioned because they and their families have refused treatments which doctors are forcing on them which will be detrimental to their health.

Several other women have died over the past few years because of these same attitudes. Is it any wonder that most of us are actually afraid of going to hospital. Is it any wonder that many have taken their own lives or turned to Dignitas.

If you'd like to help these 3 women, do look at the Chronic Collaboration website and sign the petitions you find there.

https://thechroniccollaboration.com/petitions/

M.E AND ME

The way I have to spend my day, 365 days a year, is shown in the photo collage - lying down, reducing external stimuli, giving my mind and body the complete rest it needs. It's like having a constant whole-body migraine, and this is the only way to minimise the pain and keep it bearable. I'm then able to spend a short time sitting to eat a meal, enjoy the garden or try to look bright-eyed and bushy-tailed for the occasional visitor.

It's unlikely that I'll ever recover, the prognosis at my age is that I'll slowly deteriorate and become more bedbound, something I'm struggling to come to terms with. The only hope that I and countless millions have is that research will find a cure in our lifetime.

Meanwhile, we desperately need the government to stop listening to the psychological lobby, remove them from their positions of influence in government and the NHS, and boost the investment in research which was slowed to a trickle from 1970. We rely heavily on charities for research and support, while more is invested in studying male pattern baldness than in M.E!

Thanks for reading and for your support

M.E RESEARCH UK

"....doctors do not treat us and science does not study us. How could a disease this common and this devastating have been forgotten by medicine?" Jennifer Brea

Only biomedical research can find the causes of ME/CFS, improve diagnosis and treatment, and, ultimately, arrive at a cure. That’s why research is our focus.

We've awarded 64 full grants and 5 PhD-level awards since 2000 and invested over £3.5million. But research is expensive and becoming more so every day. That’s the challenge we face, and that’s why we need your help.