Around 1 in 4 people like myself have Severe or Very Severe M.E. - this leaves those people mostly or entirely housebound or bed bound.
What I wanted to say about severe M.E. this year is the chronic lack of services and support there is for people in the UK. It does vary depending where you live but it can be very difficult to access care especially when you can’t travel. Where I live in my NHS no access to services exist at all.
There is also the general lack of understanding from professionals from GPs to hospital staff. I’ve too experienced this. In my last GP appointment my GP had never heard of M.E. and during the telephone appointment she googled Myalgic Encephalomyelitis and then I directed her to a specific M.E. charity’s website for information. There have even been cases when someone with very severe M.E. has been admitted to hospital and due to the severity of their M.E. they have been unable to talk, eat or drink and due to lack of understanding of M.E. and just how severe it can become for some people they aren’t believed and instead are sectioned under the Mental Health Act.
So many times now I see petitions to get individual with severe/very severe M.E. the care they need and desperately deserve whilst in hospital. Such as not being sent to a psychiatric unit or not having their bed raised at the head for tube feeding due to their severe orthostatic intolerance (a key feature of M.E.) or trying to get a transfer to a hospital that is better equipped for their M.E.
Just recently Maeve Boothby-O’Neill who had severe M.E. sadly passed away after being discharged from hospital. Her family felt that opportunities were missed and her death could have been avoided. Read BBC article here
The fact of the matter is that this illness takes lives. It took Maeve’s life and several years ago it also took Merryn Croft’s life too and also Emily Collingridge (who wrote a fantastic resource book ‘Severe M.E.: A Guide to Living’ - lives taken far too soon, and countless other people have also lost their life and countless more people will too. It’s time M.E. needs to be taken more seriously.
Jessica Taylor-Bearman also wrote a great collection of three books. I’ve only managed to read the first one so far as it’s on audio ‘The Girl Behind Dark Glasses’ but Jessica wrote about the severity of her M.E.; how it took away her ability to move, speak, eat and drink but also the mistreatment she received at the hands of those meant to be caring for her from people like her consultant she named ‘Boss Man’ to whom she couldn’t fight back against.
My M.E. has thankfully never become this severe but I have been mistreated by agency carers and I know what it’s like to have doctors and other care staff neglect your needs and not understand your illness or be able to give you the care, support and services you desperately need.
This all makes me feel invisible and incredibly alone. It’s so incredibly hard having doctors not knowing my own illness, the illness that affects me the most and the one that I’m needing this most help with. Because I’m not getting any support and my GP practice are useless and with the way my M.E. has been worsening a little gradually in all honesty I am scared of my M.E. worsening and not being able to get the help and understanding I need, just like so many others with this illness.
People with M.E. deserve better. We should have access to specialist services regardless of where we live. NICE Guidelines also need to be followed including the part about meeting people with severe M.E.’s care needs in hospital (from my experience because M.E. isn’t always known about so are the NICE Guidelines, or the hospital just can’t accommodate our needs according to the guidelines). Social care also needs to improve and there needs to be more support given to unpaid caregivers.
Finally people with M.E. won’t be forgotten about. We may be out of sight from the world but we will keep campaigning until we get the care we need and deserve.
