As my thoughts flit around my mind, I already feel conflicted as to whether or not I should put pen to paper, or finger to keyboard rather. Lately, well, these last few years I’ve found emotive posts the most difficult to write. My head so hot, so angry, so inflamed with the constant migraines, that to think, to try and compile my thoughts, thoughts that overwhelm, feelings that I cannot place; in a world that has been, well different, has been too much. So I don’t know. But today this feels cathartic.
M.E Awareness Month Can Be Tough
I can’t lie, ME Awareness Month is hard. I dread May and there is a sense of relief when it is over. I feel guilty saying that out loud. But in a world, my world; where the only way to survive, is to not focus on how bad things truly are, how sick I truly am, how dire the situation really is; it is then a lot to spend a month putting energy I simply do not have into sharing facts, quotes, figures that are soul-destroying, to both myself and my fellow sufferers, in the mere hope of a little more understanding. That my friends is more than hard.
I feel the guilt of sharing quotes that simply state the truth but that can upset others. I feel that weight. Yet if I don’t try, then what? What if these facts aren’t seen, heard or believed?
The truth of the matter is that it shouldn’t be up to us. We are sick. It shouldn’t be up to those who are dreadfully sick, their loved ones, to advocate. It shouldn’t be that we then feel that stress, that guilt, that loss. Being sick is hard enough.
Twenty Years Too Long
I’ve now lived, rather existed, for over twenty years with this disease. This year was my twentieth sickiversary and I couldn’t bring myself to talk about it. I just felt broken. In that time what has happened? My Mum wrote a letter to our then MP Denis Murphy, to enquire about biomedical funding for ME/CFS in 2007, he wrote to Rt. Hon Alan Johnson MP, who was then the Secretary Of State for health (as you can see below) we heard nothing following this letter.
Of course, since then has been the PACE debacle, which began with the part government funding of the trial in 2006 (the only ever government-funded trial to date) and has had a catastrophic effect on the care of patients with ME/CFS, the continued misconceptions and medical ignorance and the continued lack of funding for biomedical research.
On the PACE trial, Carol Monaghan MP stated that it was “one of the biggest medical scandals of the 21st century…In PACE the evidence should have forced a rethink of the original hypothesis. The failure to do this has had serious implications for those living with ME. I do believe the trial is a medical scandal; how big a scandal is probably for society to decide.”1
To understand more about PACE trial and the history of ME/CFS in general, this is an excellent article in the independent Time for Unrest: Why patients with ME are demanding justice by Nathalie Wright it is behind a paywall, I have screenshots on my Instagram here if that is helpful for you.
Two years ago, we finally, finally, heard ME/CFS be debated in the House of Commons. Two years later, no good has come of it.
Over 80% of people with ME/CFS developed it after a virus. We know only too well the damage viruses can do to the body. Our community saw the tsunami to come that would soon be known as Long-Covid and it has been a painful, difficult watch.
When I read biomedical studies I get excited. To me, finding new research that pinpoints something that’s different to a healthy person is a positive. Not because our bodies aren’t functioning correctly of course, but because it’s part of the answer. And that’s how I see it, every study is part of a massively, complex, puzzle. We just need the funding for biomedical research to complete it. The end to medical ignorance so that scientists wish to study the disease. That all sounds pretty simple doesn’t it?
But when the weight of that comes down to the patients and their loved ones, that’s a lot. That shouldn’t be the case. It is what government funding is for.
Self-Advocates Because No-one Else Will
We’re tired. And no, I don’t mean physically tired, that’s obvious if you were to take a look at any of the fantastic biomedical research (charity funded of course) which showed cellular exhaustion, which is incomparable to tiredness. Here’s just one such example:
A SWATH-MS analysis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome peripheral blood mononuclear cell proteomes reveals mitochondrial dysfunction2
We’re emotionally and mentally tired of having to fight this battle unheard. Having to fight while watching false narratives painted daily in the press. Having to fight with little to no help. We’re tired of being self-advocates. The only way we cope is to get through our days. So yes, our stories are told, the truth is told but that you see, can be overwhelming when you are quite simply in survival mode because there is no other option.
Isolation, Isolation, Isolation
As the healthy world returns to socialising this month, we return to advocating, to crying out for our lives, always, it seems our cries ignored. Our isolation does not end.
So I ask this of you. If you tire of seeing posts from a sick person. If you feel they overshare. If you think it’s a ‘bit depressing’. If you just don’t want to see it. Please think twice. This isn’t something that person can switch off from. They don’t get a second’s break from feeling, from being severely sick. More, they have to fight for everything; medically and socially with the least understanding, you could ever imagine. Their posts, these posts, are their only way out, they have to self-advocate for everything.
This month will be hard on all of us. To my ME community, I am sending much love and strength. I see you. I hear you. I will do what I can.
I hope one day, I won’t have to say, it took a pandemic for them to hear us. It took a pandemic for them to notice ME/CFS.
Looking for more to read? ME/CFS Facts VS Fiction
1Sweetman, E., Kleffmann, T., Edgar, C. et al. A SWATH-MS analysis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome peripheral blood mononuclear cell proteomes reveals mitochondrial dysfunction. J Transl Med 18, 365 (2020). https://doi.org/10.1186/s12967-020-02533-3
2Trial By Error: A Q-and-A with Scottish MP Carol Monaghan By David Tuller, DrPH Virology Blog
I hear you. I’m sorry it has taken a pandemic to make your points more widely heard xx
thank you so much for your support, always, xx
Thank you for putting this post together, not only with your own thoughts and feelings but with such appropriate/helpful facts, links and references too (I know from my own attempts to blog that including both kinds of information always means extra brain power). You said so many things just as I feel them ❤ I’ll be sharing for sure! I hope this reaches people who aren’t as aware as they should be.
thank you so much, I really do appreciate that. It really does take it out of us, doesn’t it? And I really like to back up everything I say as much as I can and provide as much information as possible but it does come at a cost. I just hope it helps! I’m so glad you have found it beneficial, that means a lot. Take care!