The National CFIDS Foundation maintains a Patient Memorial List of people who have died of causes relating to CFS (Chronic Fatigue Syndrome), also known as CFIDS (chronic fatigue and immune dysfunction syndrome) or ME (myalgic encephalomyelitis). They updated the list tonight, and I got notice of that through my Facebook feed.
I thought I’d just take a look at the list, but wound up reading them all.
It’s emotionally overwhelming.
There are no words for what I’m feeling.
I’ve mentioned a few times before about the “outcome” for many CFS patients like myself – the increased risk of death by heart attack or stroke, the unusual lymphomas and other cancers (often associated with the reactivated Epstein-Barr virus that’s so common), and the very high incidence of suicide. And how many struggle just to get diagnosed & treated, and how it breaks up families, with some family members deserting the patient because of the stress of caring for them, or because they don’t believe they’re really sick.
But it’s one thing to mention it, in the abstract, and another thing entirely to read through memorial after memorial, name after name, to see how many were active – some were marathon runners, Olympic medal winners, equestrians, doctors, teachers, active people just struck down with the “never-ending flu”.
Reading about the cause of death; how many die young, some so very young; reading about people younger than me having “massive coronaries;” multiple bouts with cancers; intractable pain so bad they kill themselves; those who died alone, uncared for… and how very many left behind children who also have CFS.
Some memorials mention the fight for disability, usually a losing battle.
It brings home, makes me confront, what may be ahead.
It makes me wonder for my own future.
Why the government isn’t stepping up & really seriously looking for causes & cures. One doctor who is in the military & treats patients with Gulf War Syndrome, AIDS, & CFS has flat out stated that her CFS patients are by far the sickest. And yet precious little research is being done.
And it makes me wonder how many thousands more there are who aren’t on this list. The list is made up in large part of people who ran support groups for other patients, or those who participated in them.
There are no words for what I’m feeling: angry, sad, overwhelmed… and brokenhearted for those left behind.
If you are a CFS/FMS/CFIDS, etc. patient, you know how real these illnesses are.
If you’re not, if you know someone who has it, then I ask one thing of you: go read the list. All of it. Let the reality sink in, as it already has for us.
Wolfdreams.... 
Hi Ash, I was literally just reading this list before I came here. I too was overwhelmed. I couldn’t believe it. I know many died from “secondary complications,” but you and I obviously understand all too well what that means.
It is a shame that we are being ignored, we who are still here. (I still don’t have that handicap sticker.) I guess I think of this because doctors, even the best ones, don’t seem to get it the kind of fatigue people are talking about when they talk about CFIDS! They just don’t get it. I think we should all give them videos instead of going for a visit. Let them see how we really live. In our four walls of fatigue and ongoing pain.
Thanks for posting about this. You are precious!
LikeLike
I was thinking of you when I wrote it, actually, because I try to reply to every comment but I hadn’t replied to your precious comment on “Self & Self-Destruction.” I’m sorry about that – typing is such a huge pain with this shoulder injury (literally) or it’s very slow if I use the computer one handed. But I did want to thank you for all you’ve written, especially with all you have going on. I’m so sorry you’re having such a tough (impossible) time with doctors understanding & the depression issues on top of that, and your son’s issues, I just can’t imagine how you keep going. You are clearly much stronger than you might think you are!
You know, that brings to mind that saying (which I hate): Whatever doesn’t kill you makes you stronger. There have been so many times in my life, well before I got sick, when someone has said that to me, and I’ve often answered with something like “I’m strong enough already – I don’t need anything else!”
But in reality, I did need all those things, in order to be the person I am today, who is strong enough to face the crumbling of my body & yet be able to keep going through it all.
Perhaps the same is true of you, too – you’ve been through a lot of hell, too. We are both of us survivors of so much, and now faced with the greatest challenge of our lives. I’m so glad you found me through my blog – those of us with CFS/FMS/Lyme, etc., need each other as friends so much, because unless someone is living this hell, they can’t understand it, they can try, but they really can’t grasp what a struggle everything is.
I came across a reference to the Hunter-Hopkins Center – they are in Charlotte but have another clinic outside Raleigh. They are online at drlapp.net – I don’t know anything about them except another PWC (person with cfs) had them listed, and what I read on their website. Sounds like they might be a good place to check for treatment options & such. I think they work with your PCP after doing their testing, so you don’t have to go to the center that often.
Can I borrow your phrase “four walls of fatigue & ongoing pain?” That’s a classic!
I hope you are doing as well as possible today, and send many virtual hugs!
LikeLike
Hi Ash,
I wanted to reply here before I forgot. Sorry it took me so long.
I hope you are having some peace as I write. We had a storm and the power went out a few times, with lightening waking me at 4am so I’m tired now. I have so much to do but not the energy. What do you do you know? The house chores, the mail, the bills, all of it feels quite overwhelming to me lately.
You are right about people who aren’t living with chronic illness not being able to really grasp what it is like. The ongoingness of it. Not to mention the severity of pain. It is very depressing. I listened to music today. Haven’t done that in a while.
Hey you can use that phrase anytime anywhere okay 🙂
Today I’m in those four walls of fatigue, but the sun is trying to shine, so that’s good.
We should connect on FB. Let’s try if we can.
Take good care, thanks too for your comments on my posts. I can imagine how hard it must be to type and understand needing to at the same time.
Peace…
LikeLike