Today the UK Parliament are debating a motion on M.E. I have had this chronic illness since October/November 2017, so I thought I'd make a post explaining the symptoms and why this debate is so important.
The motion being debated is: “That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures.”
The main symptoms are:
Post exertional malaise: after carrying out an activity, the body needs hours-weeks of rest to recover.
Activity-induced muscle fatigue caused by trivially small exertion (physical or mental) relative to the patient’s previous activity tolerance. For example, before getting M.E. I could walk for several miles without feeling too exhausted, and now I can only walk about 20 mins on a good day before I get extremely achey and exhausted. Also caused by things people might not necessarily think are energy-consuming, such as conversations, reading, writing, brushing you hair and teeth etc.
Cognitive dysfunction – problems with short-term memory, concentration, word-finding. Often also called brain fog.
Sleep problems – sleeping too little or too much, vivid-dreams, unrefreshing sleep.
Ongoing flu-like symptoms – including sore throats and enlarged glands, fever-like sweats, lethargy
Orthostatic intolerance – problems with pulse and blood pressure control leading to feeling faint/dizzy when upright.
Pain – which can involve muscle, joints and nerves
Problems with balance and with temperature control
Sensitivity to light and sound
Alcohol intolerance
Gastrointestinal symptoms
I am still very lucky: I can meet up with friends and go to choir and orchestra when my symptoms aren't too bad, but 25% of those with M.E. are bedbound, many for years at a time.
M.E. is still very stigmatised or even unheard of by many, including medical professionals, with many saying that it's psychological, despite evidence to suggest otherwise. The treatments available on the NHS (Cognitive Behavioural Therapy and Graded Exercise Therapy) are based on biased and flawed evidence and are only being reviewed in 2020. They have barely any positive affect on the condition, often severely exacerbating the symptoms.
According to Action for M.E. 'people with M.E. - at least 250,000 adults and children in the UK - score lower overall on health-related quality of life tests than most other chronic conditions, including prostate cancer, breast cancer, rheumatoid arthritis and schizophrenia. M.E. affects more people than Parkinson's disease and Multiple Sclerosis combined, and costs the UK economy at least £3.3 billion a year in healthcare costs, disability-related welfare payments, productivity losses and unpaid informal care. Yet research into M.E. represents just 0.02% of all active grants given by UK mainstream funding agencies. As a result, we still lack effective treatments for this life-stealing condition.'
All these points put together show why more understanding, research, and education is important, and why this debate means an awful lot to everyone affected by this life-limiting condition.
If you want to know more about M.E. or donate to research projects, watch the film 'Unrest' on Netflix, and/or visit the M.E. Association website.
