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.