Dear Dr. Gibson,
Submission – Inquiry into Myalgic Encephalomyelitis
I wish you to consider the following evidence as part of your Inquiry into Myalgic Encephalomyelitis. This pertains personally to my daughter, Lauren, who has suffered since the age of 12 and is now 20.
On July 4th this year, in the USA, a 23yr. old man called Casey Fero died of Myalgic Encephalomyelitis (ME) He had had the illness for at least fourteen years. In that time he had coped with the ignorance and disbelief of doctors and teachers.
The University of Wisconsin pathologist reported that “Casey died of myocarditis: that is, his heart was infected with disease. There was inflammation, and the tissue was full of viral infection. Casey also had old fibrosis, indicating that the viral infection was not of a new onset.”
Casey’s death is extremely worrying for M.E. sufferers like Lauren and us, her family. Lauren, and thousands of other severely affected ME sufferers like her in this country, has experienced the same symptoms that Casey had exhibited during his illness.
Lauren first became ill in September 1997 with an initial diagnosis of Glandular Fever.
Instead of recovering she gradually deteriorated in health. This deterioration was exacerbated by inappropriate advice and expectations from Health and Education officials with no understanding of ME.
Eventually, even after gradually reducing her timetable and giving up all extra – curricular activities, it became too much to attend school for even short periods. By the age of 15 Lauren was virtually bed bound and terribly isolated.
A major symptom of ME is body clock reversal and sleep disturbance which meant that sometimes Lauren could not get to sleep until 6am and then woke only in time to have home tuition after 4pm. However, by sheer determination she managed to attain 5 A* GCSEs over a 3 year period.
By the age of 16 she could only make occasional trips out for very short periods. We considered it a good week if she spent 20 minutes in the library and visited the doctor!
Now, at the age of 20, even that takes a real toll on her and sometimes she doesn’t leave the house for weeks at a time
Wherever she does go she needs a wheelchair and, of course, a carer to push her.
The isolation this illness fosters cannot be underestimated. Lauren has no siblings and understandably only one friend from school keeps in touch.
We have seen our once bubbly, confident, extrovert daughter reduced to someone who has missed all her teenage years living in pain, with dizziness, muscle-weakness, nausea, “brain-fog”, sleep-disturbance, temperature control problems and last but not least, overwhelming fatigue.
As her father says, “To have to bath your 20 year old daughter and carry her upstairs to bed is heartbreaking. To have doctors tell you that it is “just M.E.” is insulting!”
We are increasingly worried about the long-term effects of this illness upon Lauren’s health and are campaigning for greater awareness amongst the public and the medical profession. We have had a doctor tell us that Lauren needs to have a “Can do, not a can’t do, attitude.” That man knew nothing about our daughter or he would have known that you would never meet a more positive girl. We hope he hangs his head in shame when he eventually educates himself to the reality of M.E. and its physiological basis.
Professor Malcolm Hooper of the University of Sunderland says that the treatment (or lack of it) of ME sufferers in the UK is a national scandal and that it is time that the school of psychiatrists who perpetuate the myth that M.E. is a “non-disease” are held publicly accountable. We can only agree wholeheartedly.
M.E. has been well-documented in medical literature for over 60 years. It was extensively documented and named by Dr. Melvin Ramsay, the Honorary Consultant Physician at the Infectious Diseases Department of the Royal Free Hospital for many years, who was the clinician at the Royal Free Hospital when a mass outbreak occurred there exactly 50 years ago. Before his death Dr. Ramsay, echoing the sentiments of Professor Hooper, wrote: “The too facile assumption that such an entity - despite a long series of cases extending over several decades - can be attributed to psychological stress is simply untenable.”
M.E. has been recognised and classified as a serious neurological disorder by the World Health Organisation since 1969.
Professor Hooper points out that most experienced ME clinicians accept that some degree of encephalitis has occurred in patients with ME leading to damage of the brain stem. In M.E. there is evidence of disruption in ion channels in the cell membranes; Such changes in ion channel function offer a rational basis to explain the fluctuating symptoms experienced by ME sufferers. Such ion channel changes are known to be induced by physical activities, stress and fasting and these ion channel abnormalities in the myocardium may form the basis of cardiac dysfunction in M.E.
It is also the case that some entoviruses are known to be implicated in M.E. and are known to damage the heart muscle, while Dr. Vance Spence of Dundee University has proved that free radical damage in the endothelium can adversely affect all major organs. These three separate studies show how multi-organ damage occurs in patients with M.E.
240,000 people in the UK are thought to sufferer with M.E, a quarter of them severely affected like Lauren. It is hard to know for certain though, as there is no Department of Health agreed rigorous diagnostic criteria and the DoH refuses to collate statistics.
So why, with such damning international evidence of serious organic pathology is the Government so keen to listen to an influential group of psychiatrists who advocate Cognitive Behaviour Therapy and Graded Exercise Treatment for ME patients, delivered through a network of new ME/CFS clinics? The government have spent £11.2million in setting up these “centres of excellence” which can deliver nothing more than glorified coping strategies. Could it be that to acknowledge the extent of this dreadful illness would mean having to do something about it?
When US clinicians and researchers show that patients with ME are in effect in cardiac failure, not through the occlusion of the coronary vessels but because of mitochondrial dysfunction which affects muscles, including the heart muscle; why are patients’ lives being put at risk by the prescribing of graded exercise “therapy” which could be life-threatening?
We have been told by an expert in Thyroid dysfunction this week that Lauren is now suffering from hypothyroidism (we believe as a result of her ME). We had to pay to see this specialist privately, as we have had to pay for all other “non-standard” NHS tests and treatment over the years. We are in the fortunate position that we have been able to manage to find the money but there are thousands of patients like Lauren who are unable to seek private, professional help. This is not good enough!
If this illness had been given the priority it should have had many years ago, instead of being denigrated as “Yuppie Flu” then perhaps a young man named Casey may have been alive today and Lauren, and many thousands like her would not have to exist in a state of anxiety about their future. It is time that rigorous scientific evidence was believed by doctors and politicians over the non-scientific prognostications of a psychiatrist who asserts that “M.E. is simply a belief, the belief that one has an illness called M.E.”
We would be happy to give personal evidence to the inquiry.
Sue and Nigel Waddle (Mr. & Mrs)
Support ME Awareness- www.investinme.org