It’s hard to write this post, as it is about an intrinsic part of my life. But that’s not all.
It’s hard because so many around the world, including medical professionals and politicians, still don’t take ME seriously.
It’s hard because this indifference has damaged so many lives and has seriously restricted the research that needs to be done to enable a search for a cure.
It’s hard.
I’m writing this post after watching a recent Channel 4 News (UK) item about ME. You see, ME, in it’s severest form, kills. For many with the condition it puts us in a sort of purgatory where we don’t really have a life — but it isn’t death either. It’s evil.
But a certain percentage loose their lives because their bodies completely give up. They are the ones in the NICE ‘very severe’ category, who are unable to leave their beds, have severe sensory sensitivities (eg, light, sound) and who are unable to swallow food so have to be tube fed. I think that deserves proper research, don’t you?
With all the charities there are around the world advocating for us, even they feel the indifference from the authorities who could change this for us. They are frustrated at the lack of government funding, of people who are unable to get the benefits (social security) to pay their bills, and the dismissiveness which remains prevalent despite consistent evidence that this is not a psychological illness but a neurological one. It is not our thinking that is the problem, but the physical function of the brain.
So what am I asking of you?
To please learn about ME and to accept that it exists; and if enough people show their support, that something might change for the better. That we will get the funding for research. That people with ME will get the acceptance for their declining heath and receive the financial and medical care that they need.
May is ME Awareness month. If we can have enough voices, then perhaps those in the position to help may actually start to hear what we’re saying.
If you would like to know more about ME, then the following links can help you. (Links not affiliated).
Action for ME — UK charity
The ME Association — UK charity
ME Support — UK charity
Copyright © 2024 Charlotte Clark
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