Friends and neighbours,
As some of you know, Manon suffers from ME (Myalgic Encephalomyelitis - also sometimes referred to as Chronic Fatigue Syndrome or ME/CFS).
ME is often incorrectly described as a "rare disease". ME isn't rare (it's estimated that 15-30 million people worldwide suffer from it), it's just poorly understood and research into its causes is severely underfunded.
For those of you in a rush, here's a peek into the life of someone with the condition: https://m.youtube.com/watch?vl=en&v=JvK5s9BNLzA
We're** running the Royal parks half marathon in support of Invest in ME Research, an independent UK charity finding, funding and facilitating a strategy of biomedical research into ME.
**Marghe, Helen, Willy, Theresa, Tommi, Olivia, Ali
For those of you who have a moment:
ME is a disease which affects around three times as many people as HIV. 75% of sufferers are women. The symptoms range from severe exhaustion after minor physical effort like walking up stairs to a complete inability to move or speak necessitating feeding by tube. The causes are not fully understood and there is currently no cure. Some patients spontaneously recover, but most do not. In Manon's case, she can still walk a few steps, but is otherwise wheelchair bound. She is 27 years old.
The disease can strike very suddenly – Manon was leading a normal and active life working in Hong Kong, then one day while walking home she collapsed in the street, unable to move. Medically she has had bad luck these past few years – she was a champion swimmer while at school and remained super fit while at University, but then got sick with life-threatening blood clots in her lungs which could only be held at bay by powerful drugs. After a series of incorrect diagnoses, it turned out she had a rare condition called Thoracic Outlet Syndrome which was cured by removing sections from her first rib on each side. She then lived normally for several years until she contracted ME.
ME remains poorly understood by a large part of the medical community. An influential study conducted several years ago in the UK was led by psychiatrists and was based on the premise that ME is a psychiatric condition, not a biological one. It is now clear that the study was scientifically severely flawed and possibly fraudulent (the ‘treatment’ of encouraging patients to exercise works only for lazy, out of condition or depressed patients who don’t have ME, but need a prod to be more active – the ‘treatment’ actually makes most true ME sufferers worse). Unfortunately the effect of the debunked study and its offshoots was to divert research and funding in the UK and several other countries down a blind alley for many years.
This is beginning to change, with researchers now focused on understanding the biology of the disease. They are making progress – for example by figuring out which chemical steps in ME patient’s energy creation process do not function properly. There are also some promising drugs in early stage trials. One of the leading researchers is Professor Ron Davis who played a key role in the Human Genome Project and now heads the Stanford Genome Technology Centre - Professor Davis has a personal stake in this – his son is affected so severely by ME that he is unable to move and is fed intravenously. Spurred by his son’s condition, Professor Davis is now leading the End ME/CFS project in the USA which is cooperating with other researchers globally. While the various researchers are making progress and believe it should be possible to find a cure in our lifetimes, this will only happen if their research is funded. At the moment they remain chronically under-funded.
Given the large number of sufferers and the severity of the effects of ME, it's really surprising that more is not being done. Especially since there is real hope of a cure.
Some of the potential reasons for this are: rear guard action by the psychiatric lobby involved in ME to protect their damaged reputations; the fact that ME does not fit easily into any one clinical department; and perhaps most importantly, because most of the sufferers because of their condition have to sit invisibly at home imprisoned in their non-functioning bodies - they do not die, but neither do they have the energy to fight.
Further details on the charity we're supporting:
Invest in ME Research is an independent UK charity finding, funding and facilitating a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS).The charity is run by volunteers - patients or parents of children with ME - with no paid staff.Overheads are kept to a minimum and all funds raised to go to promoting education of, and funding for biomedical research into, ME.Our efforts are focused on setting up a UK Centre of Excellence for ME which will provide proper examinations, diagnosis and in time treatment(s)/cure(s).