Thursday 8 August 2019

M.E. and Me // BBC Newsbeat // Severe M.E. Week 2019

I featured this documentary last year during M.E. Awareness Week and I wanted to reshare it as it's such a great documentary.

About the Documentary

M.E. an Me is an emotive documentary by Emma Donohoe who herself has M.E. diagnosed at the age of 19. The documentary features several young women living with severe M.E. - Sophie, Hannah and the mother and sister of Merryn who passed away as a result of M.E.

21 year old Sophie has severe M.E.  and has recently been diagnosed with M.E. She lives wth her partner Phil and she also has a young son Lucas. 
In the documentary her partner explains that Sophie "feels like she's a bad mother because she can't stand his [her young son's] own voice" and when speaking with Emma Sophie states "what kind of a mother can't tolerate her own child?". 
At the time of making the documentary Sophie was experiencing a crash in her M.E. which started 3 weeks before filming - in the M.E. community this is a heightened exacerbation of symptoms; as a result as the time of filming Sophie was unable to get out of bed and could tolerate only minimal sound and light. 
Some of her family are supportive but the majority just don't believe in her illness.

Emma explains in the documentary that you never know how long a crash can last but it leaves you feeling 'helpless and hopeless'.

Next Emma goes to meet Hannah who also has severe M.E. who is helping with research by Cure M.E. into M.E. to find a reliable test to diagnose M.E. In the documentary Hannah explains how she fights to be believed by a lot of healthcare professionals, some trying to pass her off as having a mental illness such as OCD or an eating disorder. She says "you're fighting your health and then you're fighting every health professional".

Dr Charles Shepard, a leading professional in M.E. says "It's partly due to lack of medical education on this subject and just not being aware, or even confident about how to diagnose this illness. So in many cases going for a whole year, or even more with no form of management or diagnosis. And this is jus unacceptable."

In next part of the documentary Emma meets with Merryn's mum and sister who talk about the progression on Merryn's M.E. and also how Merryn "was embarrassed of her illness". Merryn's mum speaks about he severity of Merryn's M.E. and how Merryn hod to eventually be tube fed and making choices between her mum washing her or just sitting and holding her hand and talk to her because of how little energy she had and how even when Merryn was told she was terminally ill that Merryn never gave up hope. Merryn passed away just 10 days after her 21st birthday after a 6 year fight with M.E.

At the time of the documentary there was an inquest into Merryn's death to see if M.E. was the cause of her death which now we know it was. Merryn is the youngest person in the UK to have M.E. listed as cause of death. 

In the final part of the documentary Emma explores some of the research into M.E. that is being done. Emma goes to Addenbrooke's Hospital where they take tissue samples from people who have passed away. Through research scientists have been able to discover inflammation in the nerves that carry information in the brain and spinal cord.


Even though this documentary only features a couple of people with severe M.E. all bed bound it doesn't give a view of those with severe M.E. who are housebound of 'sofa-bound' (though Emma does speak of here time when here M.E. became severe and she was house and sofa bound at points during that time). It excludes those who had mild and moderate M.E. and doesn't show M.E. from that aspect who are the majority of M.E. sufferers as only around 1 in 4 are severe or severely affected so it does't show the 3 in 4. 

However for Severe M.E. Week and today being the pinnacle Severe M.E. Day it does give a good idea a little of what some severely affected M.E. sufferers may be experiencing.

It was also good for Dr Charles Shepard to speak in the documentary and it was good to see the research aspect, though in reality research for M.E. is extremely underfunded.

And though in Emma's case her M.E. drastically improved, though still ill to some degree, the majority of M.E. sufferers don't get that breakthrough. Though I am happy for Emma that she got a significant improvement in her health and for making the documentary.