Monday, May 31, 2010

Urgency

Imagine the following scenario.

You're 47 years old, reasonably healthy. One day you get a bad case of the flu and you don't recover. You're in serious pain all the time. You have so little energy that getting to the bathroom and back wipes you out completely.

You go to the doctor. She runs a bunch of tests and diagnoses you with a form of cancer that tends to strike people around your age. Then she tells you the bad news: you have six months to live.

The prognosis gives you enough time to say your goodbyes and, with a lot of help, to get your affairs in order. Unfortunately, your quality of life isn't very high. Most of the time you feel miserable. You die six and a half months later, a few weeks shy of your 48th birthday.

Now imagine a different scenario. You're 22 years old, reasonably healthy. One day you get a bad case of the flu and you don't recover. Symptoms are the same as in scenario #1. You go to many doctors until, a few years later, one finally discovers that you have ME/CFS.

Even with a diagnosis, there's not much anyone can do for you. You go on disability because you're too sick to work and eke out the best existence you can.

You die of cancer just a few weeks shy of your 48th birthday.

* * *

Quiz time. Which disease is likely to get more attention and funding?

My guess, and probably yours, is the first one. It makes sense, right? We have to find a cure for that disease right away. It kills its victims within months. The clock is ticking!

And this is part of ME/CFS's PR problem. ME/CFS can kill people, but it does so more slowly, and more stealthfully. A 2006 study by Jason et al found:
The median age of death for cancer in the United States is 72 (Reis et al., 2003, versus an average age of 47.8 for the CFS sample), the average age of death for suicide in the United States is 48 (Centers for Disease Control, 2003, versus an average age of 39.3 for the CFS sample), and the average age of heart failure is 83.1 (CDC, 2003, versus an average age of 58.7 years for the CFS sample). What this suggests is that those from this memorial list who did die of cancer, suicide, and heart failure were considerable younger than what would have been expected from the general population ...
The full paper is here.

If we had to choose, most of us would rather be victim #1 than victim #2.

* * *

Today is the last day of ME/CFS Awareness Month. It has been rewarding to raise awareness about ME/CFS, but I'll be honest with you. I'm tired of raising awareness. I want to skip to the part where everybody is already freaking aware so we can concentrate on raising MONEY.

This disease gets less funding than just about any other, and it isn't going to cure itself.

The clock is ticking.

Do something.

* * *

The Whittemore Peterson Institute conducts research on ME/CFS and other neuro-immune diseases. As yet it receives no federal funding. To support them, go to wpinstitute.org and click the Donate button.

13 comments:

wyvernfree said...

I think that's a bit of a false comparison, though. From what you're saying, it sounds like people with ME/CFS have a higher susceptibility to cancer. If that's the case, then curing (or improving the survival rate) of cancer would help BOTH person #1 and person #2. So the people who would rather give attention to the cancer than the ME/CFS aren't necessarily dismissing the ME/CFS sufferer; they're probably thinking they'd be helping both, right?

cinderkeys said...

Sure ... though something else still might get the person with ME/CFS. Heart failure, for instance. And someone who's had ME/CFS for years might not respond as well to certain treatments as otherwise healthy people.

I do understand what you're saying, and nobody's arguing that all other medical research should grind to a halt while we focus our efforts on this particular disease. My basic point is that there's a perception out there that ME/CFS sufferers are guaranteed an entire, normal lifetime to wait out a cure, and that's not the case.

Anonymous said...

Thank you Cynderkeys. Your blog brought me to tears, considering I am 39 and have Chronic Fatigue Syndrome. I am luckier than most. I found a doctor, the only doctor in my entire state, that can keep my symptoms under control. I was lucky enough to live in the same city. Many others spend those years from, sometimes childhood, bedridden, wondering why no one cares. Thank you so much for speaking out for us. :)

wyvernfree said...

Sure, and I agree with you that there's a public perception problem... too many people seem to think ME/CFS is not a "real disease" just because nobody yet knows what caused it. That's reason enough to do more research on it right there.

But the "research on the things that actually kill you" camp versus the "research on the underlying problem" camp is a broader argument in medical research, as I understand it, and there aren't any villains on either side. The people who say "Look, this population of people is more susceptible to cancer and has a higher suicide rate, so let's improve cancer treatments and access to mental health resources" are not suffering from a lack of caring for the ill people, just a perspective that is a little more focused on treatment than cure, if that makes sense. I mean, of COURSE people feel more prone to suicide if they are afflicted with persistent pain nobody can cure. Making the pain go away would probably be a lot more help than suicide prevention resources. But suicide prevention resources are still a better idea than nothing, and if the search for an ME/CFS cure should be fruitless, then treating the sufferers' cancer and depression would still be a help to them... right?

Gah, I'm rambling...

Laurel said...

I loved this post, Cinderkeys.

Thanks for all you do to try to bring awareness to this devastating disease.

Anonymous said...

Wyvernfree,
Personally, I am looking for more than "better than nothing" and have no doubt that, if we searched, a cause will be found for our illness. If we find a cause for ME/CFS, this might even lead to a cure for cancer. I guess when I get cancer I will finally get some medical care. Sigh....

Anonymous said...

Cinderkeys, I just found your blog. I have had ME/CFS for 28 years, and it has catastrophically affected my career in the arts. For a while I had the most sympathetic pain doctor one could imagine, a man with a huge interest in CFS. But he no longer practices and for years I've been adrift in the world of doctors who are mystified by me or shrug me off. It is so hard to describe to friends the acid rain (or Chinese water torture) of this illness, but you have done it so beautifully. It makes today's fireball of fibro, inability to stand up and migraine just a little bit easier. Thank you so much.

wyvernfree said...

Hi Anonymous,

The point I was trying to make was that in medical research, the perfect doesn't have to be the enemy of the good. A cure for ME/CFS should definitely be sought. But truly curing diseases often takes longer than the lifetimes of the people who currently suffer from them (cancer is a good example actually-- look how long researchers have been looking for a cure for cancer.) So yes, the "better than nothing" treatments also need to be pursued. I wasn't in any way trying to imply that that's the only thing sufferers of the disease deserve, only that it's part of how medical research normally progresses (even for diseases that are not stigmatized at all) and that it doesn't mean the people who are working on a "better than nothing" track don't care about people with the disease. Sorry if I wasn't clear.

Anonymous said...

Sorry Wyvernfree, but I have to respectfully disagree with every one of your points.

About ME_CFS_unite said...

I also take umbradge with your comments. ME "HAS" killed MANY people and I do NOT mean ONLY by suicide. And simply saying cancer is not a good analogy and there are MANY cancers and many causes.
With the research started by one Dr and one set of parents we are already almost having hope... in the discovery of something that NEEDS more money for Research as it might be not ONLY be a player in causing ME/CFS, but also Autism, atypical MS, FM, Lupus, and a few cancers namely Prostate cancer and Lymphoma.
This just MIGHT be a way to defeat many cancers AND other diseases... ALL of these are EQUALLY IMPORTANT especially when 28 million people have already been ignored and abused by their Government's INTENTIONAL Lack of Attention causing YEARS of abuse by the lack of medical education for the Dr's so WE and the Dr's are ALL victims to what this Intentional Deception has wrought...
....Just like what is happening with the oil in the Gulf of Mexico NOW because the Oil Companies have been abusing all of the guidelines they were supposed to be working under and LOOK at what they have caused NOW... Well, WE are the 28 millions OIL Spill that will also NOT be silent any more...
...also a Letter "just got handed to Mrs. Obama" about our plight so we are using all kinds of methods to get heard.. As a 23 yr sufferer who had a mother pass from a Lymphoma and a stepdad that had Prostate Cancer, I believe the research that is NEEDED and NEEDS funding is of the Utmost Importance. That's all I will say to your insulting remarks. Sounded like another version of Prejudice
to me...IMHO.

wyvernfree said...

I think you're reading all kinds of things into my comment that never were there, ME_CFS_unite. I already stated that I believe more research into the causes, and hopefully a cure, for ME/CFS is necessary. I don't in any way believe this disease is unimportant or imaginary, and I don't think it's OK to ignore it.

What I was telling Susan I found ineffective was the comparison she set up between the hypothetical person #1 and person #2 in her post, WHO BOTH DIED OF CANCER. I didn't say or imply that all people with ME/CFS die of cancer, but the one in her example DID. At which point it would be entirely understandable if people who were reading the story were to think "Hey, cancer research would help both these people." Particularly upon reading the study she cited, which suggested that cancer rates among ME/CFS sufferers are nearly double the national average. A lot of the people reading that example who thought to themselves "spend the money on cancer research" were probably following this train of thought-- that it would help both people-- rather than the one she ascribed to them about urgency.

I'm sorry if you found that insulting. A little baffled as to how you possibly could, but sorry just the same. It was certainly not my intent. Susan links this blog from her LiveJournal, and I sometimes forget that's not really what this is. :-)

cinderkeys said...

Hey, thanks for all the kind words. It's nice to see so many people here who are down for the cause. (Including Wyvernfree -- I know her personally, and she takes ME/CFS as seriously as I do; she just occasionally disagrees with my rhetorical approaches. :) )

The question, now, is how to get everybody to take this seriously. I can write blog posts on the subject until my fingers turn blue, but I suspect that all or most of my readers agree already. How do we get the others to listen?

Laurel said...

Wyvernfree,

While I do understand where you are coming from, I'd have to respectfully disagree with you as well. I think the point Susan was making was that while both may die of cancer (or heart disease, or whatever the case may be), the person with ME/CFS will endure decades of a living hell in the meantime.

I have severe ME/CFS and am bedbound and unable to speak above a whisper. I've been sick for 14 years. My fiance has been sick for 26 years and is homebound and wheelchair bound. So,while we know we have a greater chance of getting cancer or heart disease down the road... we need help now. Something is better than nothing, but we don't even have something yet. :)

If it turns out that it is indeed a virus eventually causing cancer and heart failure, then we need help destroying that virus or getting it under control so that we DON'T develop cancer or heart disease in the first place. But there is very little research into this at the moment, other than from the WPI.

I also doubt there are many doctors out there helping to cure cancer or heart failure who are thinking they are also helping ME/CFS. Very few people even know that ME/CFS can ultimately lead to these illnesses.

Anyway, I take no offense to your viewpoints at all... just adding my own.

Cinderkeys -- how to get others to listen... that's a good question. :)