Tuesday, November 08, 2011

Imagine...

(For the five[?] of you still reading...a brief lapse in the illness-induced silence as the muse paid me a visit this morning on the occasion of a letter-writing campaign to NIH Director Francis Collins to increase funding for ME/CFS research.)

Dear Dr Collins,

I respectfully ask you to imagine the worst flu you’ve ever had. You’re feverish. Sweaty yet cold and clammy. Your joints burn. Your throat is raw. Your stomach swims with nausea. You’re weak, dizzy, exhausted, and find it difficult to get out of bed. And any tiny bit of exertion makes every symptom worse.

Now imagine that flu never goes away.

Or imagine the worst hangover you’ve ever had. Every light is too bright. Every noise too loud. Every smell makes you nauseous. And your head is pounding. All you can think of is how you just want to lie down in a dark, quiet room.

Now imagine you have that hangover all the time.

Or imagine the worst jet lag you’ve ever had. You can’t sleep at night when it’s time to go to bed, even though you’re desperately tired. And during the day you’re groggy. Your brain is mushy. You keep forgetting things. At times you even feel disoriented.

Now imagine having jet lag every day.

Imagine a constant burning hum throughout your body. Your muscles jerk and twitch. Little electrical impulses zap you in different places -- your foot, your arm, your eye. At times the burning pain is so bad that it feels like you’re being given constant electric-shock torture. But most of the time it’s just a steady burn, like acid coursing through your veins. Or being burned from the inside out.

Now imagine that burning pain for years without end.

Imagine all of this -- the flu, the hangover, the jet lag, the unrelenting pain -- this is your reality every day of your life.

If you can imagine all this, then you can imagine how I’ve felt for the last 13 years.

You can imagine how debilitating a disease this would be. That it would leave you too weak to work, take care of your kids, be intimate with your spouse, go to church, out with your friends or have them over or sometimes even to talk with them on the phone. You would be dependent. A burden. Useless. You would spend your time alone in bed for days, weeks, months, even years. Isolated. Often in unbearable pain.

You would want -- indeed expect -- that your doctor would be able to diagnose your disease and provide you with medication and advice on how to manage it. Should you need to see a specialist or end up in the Emergency room, you would expect that the doctor seeing you would recognize your disease and the various ways his or her treatment might make it worse.

Except they don’t. Your doctor runs all sorts of tests which all come back inexplicably normal. Eventually he or she says you have a condition with a name that belittles your suffering. Or perhaps tells you that you’re not really suffering anything -- even as the weakness, dizziness, nausea, chills, headache and burning pain you feel tell you otherwise.

When you see a specialist, he says he doesn’t “believe” in your illness, as if you’re talking about the Tooth Fairy or Santa Claus.

When you end up in the Emergency Room -- because your heart palpitations have gotten much worse than normal, or you had a bad fall, or you caught a stomach bug that has you vomiting all night -- the nurse rolls her eyes when you ask for a saline infusion because your poorly-named disease causes you to dehydrate easily. And the doctor merely shrugs, tells you you’ll be fine, and leaves to treat patients with “real” diseases.

At the pain center, where your doctor has sent you for an evaluation of your pain, the provider you see has never even heard of your disease -- not even the derisive name commonly known in popular culture -- and decides that the morphine your doctor has been prescribing to treat that horrible burning pain (which she can’t explain so therefore doesn’t exist) is the cause of your fatigue and recommends your doctor decrease your dose substantially (dismissing your experience of it actually improving your sleep thereby actually reducing some of your fatigue).

While all of this is frustrating in the extreme, at the end of the day you can’t really blame any of these health care providers for their ignorance. They have been given absolutely no instruction about your illness, whether at medical school or from their continuing medical education. Your real frustration lies with the government agencies, in this case the National Institutes for Health and the Centers for Disease Control, that are supposed to be using tax dollars to research your disease and educate physicians. The CDC acknowledges that this disease causes the same level of debility as does Multiple Sclerosis, Congestive Heart Disease, and late-stage renal failure (even as its first suggestion for treatment of your illness is “psychological counseling” - would that be your first treatment for end-stage renal disease?). Yet in Fiscal Year 2010, the NIH spent $151 million researching Multiple Sclerosis. Over a billion on Heart Disease. $647 million on Kidney Disease. Even $81 million on Attention Deficit Disorder and $37 million on some category named “Arctic.” But on your illness -- the one that has robbed you and 1-4 million other Americans of your lives and left you to rot in bed because your doctors have nothing with which to even merely diagnose your condition, never mind actually treating it (not to mention costs this country an estimated $24 billion in healthcare costs and lost productivity)?

$6 million. That is how much the NIH spent last year on this disease. And it’s only budgeted $6 million for next year (FY 2012).

This neglect is why a handful of patients have dragged themselves out of bed today to protest in front of a Holiday Inn in Washington DC where a subcommittee of the Department of Health and Human Services is meeting to discuss this disease - just as they have done almost every six months for the last fifteen years. And at each meeting representatives of different government agencies come and make statements about how “of course they take this disease seriously!” and “we’re working hard to help those afflicted with it!” while committee members ask for more research, more funding for that research, better physician awareness of the little research that has occurred, and patients give tearful testimony of the same tragedy happening to all of them: I was once healthy and productive and independent and now I’m wasting away while life is passing me by and please, please help me...

You would want someone to help you if you had this disease, wouldn’t you?

Thank you for taking a moment to imagine what my life is like.

Sincerely, etc.

(In 1987 a small trans-governmental committee named this disease “Chronic Fatigue Syndrome”. Imagine if we called Alzheimer’s Disease “Chronic Forgetting Syndrome.” Would you really find that an adequate name for a disease robbing the victim of his or herself?)

(Note: the NIH spending figures are from the NIH RePORT site “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).” I appreciate the figures from that site can be messy in their complexity but I think it makes the point. The estimate of cost to the country is from the CFIDS Association. The prevalency figures are from the CDC and their statements regarding CFS are from their webpages on CFS.)


3 comments:

Blairmyaligia said...

Michelle, As someone who has been suffering & struggling with these diseases I Thank You for writing so eloquently about the problems we face. My ability To write AS well AS I once Have has been greatly affected by these diseases.24 years later I still face ignorant Drs,* other medical personnel. I still get depressed, sad &frustrated at how my life & that of MY daughters (now an adult ) HAS been impacted by ME/CFS.

No Poster Girl said...

This is excellent, Michelle. I have used a similar description - let me copy and paste here. My 30-second summary goes like this:

I have ME/CFS. It's a neuroimmune illness that has left me bedridden since 2007. It affects pretty much all body systems, and it feels like having the crushing exhaustion of mono, the all-over body pain of the flu, the noise/light/sound/smell sensitivity of a hangover, the weakness of having just worked all your muscles to failure at the gym, and the feeling of not having gotten any rest for a couple nights no matter how much you sleep, all of it constantly. No cure, no FDA approved treatments, and it's infectious, but nobody knows for sure what causes it. It affects one million people in the U.S., 17 million worldwide. And last year the federal government spent a grand total of $6 million on research.

-Jocelyn

Clara david said...

WHAT A GREAT MIRACLE THAT I HAVE EVER SEE IN MY LIFE. My names are Clara David I’m a citizen of USA, My younger sister was sicking of breast cancer and her name is Sandra David I and my family have taking her to all kind of hospital in USA still yet no good result. I decided to search for cancer cure so that was how I found a lady called Peter Lizzy. She was testifying  to the world about the goodness of a herbal man who has the roots and herbs to cure all kinds of disease and the herbal man's email was there. So I decided to contact the herbal man @herbalist_sakura for my younger sister's help to cure her breast cancer. I contacted him and told him my problem he told me that I should not worry that my sister cancer will be cure, he told me that there is a medicine that he is going to give me that I will cook it and give it to my sister to drink for one week, so I ask how can I receive the cure that I am in USA, he told me That I will pay for the delivery service. The courier service can transport it to me so he told me the amount I will pay, so my dad paid for the delivery fee. two days later I receive the cure from the courier service so I used it as the herbal man instructed me to, before the week complete my sister cancer was healed and it was like a dream to me not knowing that it was physical I and my family were very happy about the miracle of Doctor so my dad wanted to pay him 5 million us dollars the herbal man did not accept the offer from my dad, but I don't know why he didn't accept the offer, he only say that I should tell the world about him and his miracle he perform so am now here to tell the world about him if you or your relative is having any kind of disease that you can't get from the hospital please contact dr.sakuraspellalter@gmail.com or whats app him +2348110114739  you can follow him up on Instagram @herbalist_sakura for the cure, he will help you out with the problem. And if you need more information about the doctor you can mail me davidclara223@gmail.com