Katharine has composed a superbly eloquent, accurate, and captivating response to the show's segment that echoes every single sentiment I would have written in my own response. Please take a moment to read this and then take another to share this article because this is a serious matter that needs to be spoken about more often.
I'M WORTH MORE THAN £50
by Katharine Cheston
This morning there was a discussion on The Wright Stuff, on Channel 5, entitled;
"Is the NHS failing M.E. sufferers?"
It featured the CEO of Action for M.E., Sonya Chowdhury, and Graeme Bloom, who has M.E.. While I expected to be left feeling very angry and upset ― as I usually am whenever M.E. is misrepresented in the press ― I was actually quite impressed with the coverage; which, for most part, stayed true to the facts and made it clear how debilitating this illness is. We even had a mention of the fact that people can ― and do ― die from M.E.; something which is often shied away from, even within the M.E. community.
For an in-exhaustive list of M.E. deaths, see here.
Aside from a rather unfortunate remark from Nadine Dorries that "97% of young people with M.E./CFS recover" (if only this were true!), there were two figures that stood out to me;
Firstly, that cancer cases ― which affects 10 times as many people as M.E./CFS ― receives over 500 times more funding from the NHS than M.E. and CFS, and secondly, while other chronically ill patients each receive upwards of £2,000,
the NHS spends only £50 per M.E. sufferer.
Who is allowed to decide that my health, my future, and my life ― and the health, futures and lives of thousands of others ― is worth just £50? How is this right? How is this fair?!
Firstly, I want to make it clear that - even though it cannot cure or treat me - I am completely pro NHS; it is a fantastic institution that us Britons should be proud of. Moreover, I am certainly not arguing for M.E. to receive the same funding as cancer, which obviously deserves every penny of the money that goes to fund treatments and - eventually - cures. Indeed, we don't want to take any funding (whether that's for research, care, or treatment) from any other illness (although personally I'd like to see M.E. getting more funding than male pattern baldness - which is awarded 18 million dollars in funding by the NIH, compared to a measly 3 million for M.E. and CFS). We just want to be taken seriously, believed, and for the funding for research and care to reflect the immensely debilitating nature of our illness. When your life is affected as much as ours can be, it's really not much to ask.
The same illness whose patients are worth only pennies, is the same illness which has been described by experts as more disabling than MS and congestive heart failure; the same illness whose most severe sufferers feel the same every day as an AIDS patient feels two weeks before death. It is the same illness that robs sufferers of their ability to work, of their ability to leave the house, and all too often of their ability to tolerate any stimulation, to be upright, and to move from bed.
While I remain chronically ill, I know just how lucky I am; I am so grateful for every day I can breathe painlessly, where I can leave the house, and where I am able to study. I would give every penny of my allocated £50 to those most severely affected: to those thousands of patients who cannot physically leave their beds, who are in unimaginable pain, who cannot even look out of the window or see their family and who, sadly, have little to no help from society and from the medical profession.
This is why I write my blog, while I spend what energy I do have on speaking up for myself and for fellow M.E. sufferers; it is why I volunteer for 3 M.E. charities, and why I work tirelessly to raise awareness and funds - because we deserve more than this. We deserve to have doctors who listen to us and who will believe us, instead of those who ridicule and abuse us. We deserve to have scientists working day after day to find proper treatments - like those who study other major illnesses - so that we can one day hope of a future without pain and illness; a future where we can go out to work, have a family, and do all the normal things most people take for granted, such as just sitting up in bed and having a conversation with a friend.
I am worth more than £50 - and so is every M.E. sufferer. This neglect, dismissal, and scandalous cover-up of the true suffering that neuro-immune Myalgic Encephalomyelitis inflicts on its sufferers is wrong, unjust, and inexcusable - and while I can't shout it from the rooftops, I for one will not stop until this abuse stops and ME patients are offered the help and support we so desperately deserve.