May 12th in Sheffield, UK with Carol Binks
May 12th, 2018
After delivering my speech at the Sheffield Millions Missing Event today, it was kindly suggested to me that I should publish the transcript of it, so for anyone who couldn’t follow the live-stream, here it is.
The short 2.42 minute video compilation of Sheffield ME and Fibromyalgia Group’s #MillionsMissing Event. Please share widely.
Carol has also brought this beautiful song to our attention.
Myalgic Encephalomyelitis, commonly known as ME, is a devastating illness, affecting the immune, endocrine and nervous systems, for which there is no cure. It leaves 25% of patients housebound, or bed-bound, and an estimated 75% unable to work. ME affects 15 to 30 million people around the world, yet the sufferers of this disease remain invisible.
Today, Sheffield is joining 100 cities around the world, including Adelaide, Karachi, New York, Tokyo, Guatemala, and 36 other European cities, in a campaign to make ME sufferers visible again.
We are here to raise awareness of an underfunded and ignored disease. We are calling for increased government funding for research, clinical trials, medical education and public awareness.
People with ME, who are too ill to leave their homes to join us today, have sent their shoes, with messages attached, to let the world know that they ARE amongst the Millions Missing, who have had their dreams and expectations shattered by this disease, but not their hopes.
We are here to speak for the millions of ME Sufferers, who cannot leave their beds and homes, people living in constant pain who, in many cases, because of their extreme sensitivity to light, sound and touch, simply exist in darkened, silent rooms behind closed doors, unable to bear the touch of their loved ones, or even the sound of their own children’s voices. People who need 24 hour care, some of whom are fed by tube, unable to swallow, speak or care for themselves at the most basic level.
Research from the US has demonstrated that people with ME have a lower quality of life than people with Congestive Heart Failure, Type II Diabetes, Heart Attack, Multiple Sclerosis and Depression. Further research studies from the UK, Denmark, Italy and the US also found that people with ME have a lower quality of life than sufferers of other serious heath conditions.
In spite of the physical devastation wreaked on the bodies of sufferers, and in spite of a reported 9000 research studies demonstrating biomedical, physical, abnormalities in people with ME, the main treatments recommended by NICE, the National Institute for Health and Care Excellence, in the UK are based on behavioural and activity models, which follow the assumption that people with ME suffer from ‘false illness beliefs’ and have a ‘fear of activity’, when in reality, people with ME are desperate to get out of bed, leave their homes, go out to work, and have a social life, as you can see from some of the very moving messages on the shoes here today.
Graded Exercise Therapy and Cognitive Behavioural Therapy, which are recommended by NICE, and used by the NHS to treat people with ME, are no longer recommended by the US National Institutes of Health, as they say that there is no good evidence for them, and in July last year, 15,180 people signed the UK ME Association Petition, calling for Cognitive Behavioural Therapy, and Graded Exercise Therapy, to be removed from the NICE Guidelines, as so many ME patients have reported being harmed by these interventions, some of them reporting a permanent deterioration, from being mildly affected when they started the treatment, to becoming permanently disabled.
NICE is now reviewing its guidelines for ME, but says that the reviewed guidelines will not be announced until 2020, and NICE has refused to heed calls for the use of Cognitive Behavioural Therapy and Graded Exercise Therapy to be withdrawn immediately, which ME Charities and Patients say exposes countless, newly diagnosed and uninformed, patients to risk of harm.
Because the treatment of ME in the UK is based on Psychological and Behavioural Models, which have been criticised by Scientists and Patients around the world, Biomedical research into the true nature of ME has not received anywhere near the level of funding necessary to address such a widespread and devastating illness.
Medical Students are not taught about the biomedical nature of ME in Medical School, so most doctors either have no idea, or are extremely poorly informed, about the true nature of ME. Many doctors don't even believe that ME exists, even though it has been categorized since 1969 as a Neurological illness, as opposed to a Psychiatric one, by the World Health Organization, an International Authority with which the UK collaborates.
If treating ME as a ‘false illness belief’ when it is not, isn't bad enough, certain doctors are now diagnosing ME as a ‘Functional Neurological Disorder’ which, in spite of the fact that this sounds very scientific and validating to unsuspecting patients, actually means that the symptoms are not due to any physical disease or illness, but are ‘emotionally generated’ As I have already mentioned, the scientific evidence showing abnormalities of the neuro-endocrine and immune systems in ME, and now also differences in the gut microbiome, an emerging field of research, clearly demonstrate that ME is neither of these things, but a devastating, disabling physical illness.
Merryn Crofts, from Rochdale in Lancashire, died last year aged just 21, after battling ME for for 6 years. Merryn was originally diagnosed with ‘Conversion Disorder’ another name for the aforementioned ‘Functional Neurological Disorder’, which is also known as ‘Medically Unexplained’ ‘Psychosomatic’ or ‘Somatisation’.
You can see Merryn’s tragic story right now on BBC iPlayer, in a new documentary called “ME and me”.
Biomedical research, into the true nature of ME, is being carried out in the US, by Professor Ron Davis, who in 2013 was hailed as one of the greatest innovators currently working, with a substantial number of genetic advances of the past 20 years being traced back to him in some way. Professor Davis has the greatest of incentives to find a cure for ME, as his adult son, Whitney, is one of the Millions Missing, a sufferer of ME who has had his life taken away and lies in a silent room, cared for by his parents, and fed intravenously.
But even with great minds willing to work towards a cure for ME, research cannot happen without funding and, for ME, there is nowhere near enough.
The stories of adults whose lives have been taken away by ME are heartbreaking, but the accounts of what children and their parents go through today, in the UK and other countries, are both heartbreaking and astounding.
Jane Colby, Executive Director of The Young ME Sufferers Trust in the UK, known as The Tymes Trust, has written that parents who decline, or withdraw, from management regimes such as Cognitive Behavioural Therapy or Graded Exercise Therapy, which may have worsened their children's illness, can find themselves facing investigation for child abuse or neglect, or have their child forcibly confined to a Psychiatric Unit.
The Tymes Trust has advised 121 families facing suspicion or investigation. To date, not one of these families has been found to be at fault.
The Tymes Trust also reports that ME has been mistaken for school phobia, anorexia nervosa, neglect, child abuse, Munchausen syndrome by Proxy (now known as Fabricated or Induced Illness) or Pervasive Refusal Syndrome and the Service Users Joint Statement reports that “The mis-use of Child Protection Powers to remove children with ME from their homes and families is likely to produce a crisis of health and social impacts.”
The devastation that is wreaked on young people and their families when they are disbelieved about their ME symptoms, and are sectioned and removed from their home and parents, can be seen in the true story of Karina Hansen, who was forcibly removed from her home, in Denmark, admitted to a psychiatric ward, and was only allowed to see psychiatrists. She was finally allowed home three years later and still remains ill with ME.
Sophia Mirza, an ME sufferer, was sectioned for 2 weeks under the Mental Health Act in 2003. Sophia died in 2005, aged 32, of acute renal failure, after suffering from ME for at least 6 years, and was one of the first UK patients to have CFS, or ME, recorded as the cause of death.
Every one of the Millions Missing, who we are representing here today, has their own tragic story to tell. They are invisible and want to be seen. They want their stories to be told. They want the world to know that they exist, but most of all they want a cure for this devastating illness that has taken their previously active, productive lives away from them.
They are asking ‘Can you see me now?”
Newsbeat Documentaries, M.E. and me:www.bbc.co.uk/iplayer/episode/p065b4lp via @bbciplayer
YouTube link to 2 minute video of event highlights ...