Thursday, February 17, 2011

Rocky Works Hard: a Good News/Bad News Story Inspired by the PACE Trial

We were working up a sweat in the garden, turning the soil one warm spring afternoon, preparing for planting. My kid Rocky paused for a moment and leaned on her shovel, its handle reaching higher than her head, and proclaimed, "I love working hard," and she dug in once again.

That's how she was at age 7, and that's how she stayed. No matter what she took on, Rocky dug in with a will. No turning back halfway on a hike or a kayak trip. No leaving half the dishes soaking and the counters dirty. No letting go of a research question until she had found not one but several answers. Rocky was a fighter and was delighted to conquer the rock she was climbing, the math problem she was solving, the new programming language she was teaching herself, the tough goals she habitually set.

At least, that's how she was, until one day, when she was fourteen, and she got horribly sick.

Well, everyone slows down when they have the flu. We all three got sick that spring, both of my kids and me, and we all slowed waaay down. That spring, we couldn't plant even a small garden.

When we'd been sick for nearly a month I got more worried. Every time we thought we were bouncing back, tried a school activity, a family outing, even a walk, slam, down we'd go again with the aches and sore throats and tremendous exhaustion. So off I took us to the local health clinic.

The doctors said it was a flu, maybe a respiratory infection. They checked for strep or fevers and sent us home advising the usual rest and liquids. And the sickness continued.

Months went by. We rescheduled activities, tried to pick up and keep going, but with each effort, slam, down we'd go. Rallies were followed by relapses. Bess was pale and listless, I couldn't concentrate on work, and Rocky, rarely out of bed, was in awful pain almost constantly. We were referred to rheumatologists, neurologists, infectious disease specialists.

The diagnosis after six months was "mononucleosis." After nine months it was "post-viral fatigue syndrome." We had been sick for a year and a half before a doctor said, "chronic fatigue syndrome and fibromyalgia." All that time we had been pushing ourselves, thinking a little exercise would help. "Try a five minute walk each day for a week," one doctor advised, "and then increase that to seven minutes, then ten...."

After one five-minute walk Rocky wasn't able to move for days. But she was determined. Up she'd get as soon as she was able, and try another walk. This kid who loved to hike and kayak, dance and research, write quirky stories and do tricky math, Rocky who loved to work hard, tried to take a five-minute walk and ended in pain and tears, barely able to get out of bed to take care of basic needs.

Nearly eighteen months into our illness, we had to move house. As we packed and carried boxes we felt like our arms would fall off. Again, a relapse to even more profound pain and exhaustion. And then we got the diagnosis of chronic fatigue syndrome and fibromyalgia, and began to research what that meant.

When we learned about Post-Exertion Malaise, it sounded so familiar. And when the Lights' study on exercise in CFS came to my attention, stating that "symptoms are often exacerbated following even mild exercise in CFS patients," I couldn't follow the medical jargon in detail but I could see that the study was a vindication, confirming with scientific evidence something we patients already knew. Exercise, body or brain, work or play, hurts. It hurts.

Unfortunately most hometown clinicians don't have tools or time to measure the pain we feel. We look fine. They can assume we're depressed or that the whole phenomenon is due to some misfiring of neurons. Following the best practices they were taught, they'll give us painkillers and antidepressants, cognitive behavioral therapy and graduated exercise therapy, and when we refuse to get well the poor beleaguered doctors throw their hands up in frustration.

Rocky is 17 now. Nearly four years have passed since she got ill. Sometimes, sitting up is too much. Looking at a screen to watch a video or play a game can be too much. Sometimes all she can do is lie in bed in a darkened room, trying to be as still and quiet as possible, because light and motion exacerbate the agony.

And it's agonizing to know that the friends she used to climb trees with and swim with, visit museums with and play D&D with, play hard and work hard with, can all continue busy lives full of education and recreation, while she lies quiet, waiting for a treatment that will actually help.

The hardest work Rocky ever did: putting up with ME/cfs day after painful day.

And now, some good news/bad news. 

The good news is that research like the Lombardi study, Science, Oct 2009 and the confirming study by NIH and FDA scientists Alter and Lo are narrowing in on a possible trigger for all the many physical processes, the neurological and cardiac damage and viral symptoms, everything that is ME/cfs. Turns out there's a strong link to a retrovirus also found in prostrate cancer. Identifying this retrovirus and how it works may be the key to effective treatment for ME/cfs patients; a return to life and normal hard work for Rocky and all of us who work so hard at surviving.

But it's good news/bad news. We just recently learned that Rocky tests positive for that retrovirus, XMRV. This means we probably all three are infected. That's bad news because nobody wants to be infected with a retrovirus. An infection with XMRV, same as with related retrovirus HIV, is an infection for life. But it's also good news because again, it might at least point our way towards treatment. Then again, more bad news is that the treatment is liable to be very expensive and it might take years for it to be FDA approved and hence covered by insurance.

And finally, a piece of bad news, but I'm hopeful it will blow over soon. All this while that we struggle to understand and cope with the disease that destroyed our lives and took Rocky's entire high school years away, millions of dollars have been wasted on research that persists in trying to pin the clearly-neuroimmune illness on psychological causes and/or suggest psychological and exercise-based treatments.

The latest waste, as I write this, is the PACE Trial out of the UK (where ME/cfs is notoriously snake-pitted, with patients like Sophia Mirza, a bright and passionate young woman like my Rocky, getting malpracticed to death with psychiatric mismanagement of a physical illness). The Pace Trial is claiming that we can get well with positive thinking and good healthy exercise. That's bull.

Yes, it's bollocks in UK parlance, and Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC isn't afraid to say so. He points out that the patients selected for the PACE study don't even have the disease being studied. Patients with neurological disorders were excluded from the PACE study, but ME is a neurological disorder. He quotes Dr. Klimas who stated that, to set against the PACE nonsense, "...you have a publication, written by a psychologist and well-regarded CBT expert to use when you want to argue that CBT helps people with this illness (as it does in every chronic disease model ever tested) but does not cure the illness.” He points to conflict of interest, a clear motivator for the sponsors and conductors of studies like PACE, seeing that they stand to benefit financially. I'll let Dr. Hooper's excellent article show you in detail why PACE is nonsense. Of course, a part of me dearly wishes it were not. I wish it helped.
 
If only it really were as simple as CBT and GET. Rocky would love to be back at work, and so would I. But we can meditate and be mindful, try one recommended therapy after another, exercise only to relapse and make therapy appointments only to have to cancel them because we're too sick to see the therapist. Millions of dollars are poured into studies while we remain ill, and the super bad worst news of all is, all those dollars are diverted from the serious, valuable, biological research that should be done now, to follow up on the exciting findings of Lombardi, Mikovits, Alter and Lo.

Rocky has XMRV and ME, and no matter what the PACE Trial may say, CBT and GET won't get her on her feet and into the garden again.

This is not the first time that the medical establishment has relegated an illness to the psych snake pit, only to later learn the biological causes. Polio and MS are cases in point. But the biological research has got to get funded or in the snake pit we stay.

We would appreciate it if readers would take a moment to call or write their elected officials, urging support for research into biological causes and treatments for ME/cfs. A letter to the editor or a mention in your blog would be great, too. HIV research turned a corner when people who were not infected took an interest. If you could devote some time to our cause, that would be very good news. The best.

9 comments:

  1. Thank you, Creek, for this intimate and sensitive sharing. In talking about your daughter's situation, you make it real. You are talking about a real girl with a real retrovirus and real illness, not some researcher's idea of a patient. This is a real problem and it needs real biomedical research if your daughter and other sufferers are to have a future.

    Here's to a bright future for Rocky!

    Patricia Carter
    XMRV+, 24 years M.E.

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  2. THANK YOU CREEK FOR SHARING YOUR PERSONAL
    'REAL LIFE' TRIALS !
    I HAVE BEEN SICK-25 YRS+ & I AM IN "AWE" TO U !
    HOW YOU HAVE FACED 'THIS HELL' WITH YOU & U'R CHILDREN, IS A MIRICLE ITSELF.
    I ADMIRE U GREATLY.
    I GOING TO SEND IN A FEW 'MORE' ANGELS, TO U'R HOME :):)
    BUT...LETS KNOW, WE HAVE HOPE ! ME, LIKE U'R SON, HAVE XMRV AND WITH WPI WORKING AS FAST AS THEIR LITTLE HINNIES CAN......
    ( AND LIKE U SAID HERE "WRITE...DO WHAT U CAN TO GET THIS 'OUT THERE')
    NOW IS THE TIME TO "FIGHT-FOR OUR RIGHTS" !!

    WE WILL FIND A THE MAJIC POTION !!....SOON
    (PS: U'R STORY WOULD BE A GREAT PR STORY !)
    MUCH HOPE,LOVE,PRAYER & PEACE TO U & U'R FAMILY XXXXXXX
    MARIE

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  3. Excellent and moving piece. It makes me all the more angry at so-called "doctors" who, for personal gain, try to prove that they are right. Have they really no sense of moral/ethical values? I too assumed at first that exercise would help me, and spent months pushing myself to go further, to do more, until I was on the point of complete collapse. Not such a big deal for me - at least I've had a life and I can be philosophical about it; but for kids in this situation?
    Wishing you and the children all the best. xxxxxxx

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  4. Thanks Kassy for sharing a piece of your lives. We can huddle together and demand for change, bio research for ME, and the rest But we must never forget that we are humans and have rights to health. Say hello to you kids and tell them to hang on, help is coming.

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  5. hiya your story moved me immnensely its bad enough that adults are being ignored and left to live with this illness alone but for it to be happening to children too is an outrage! i have two children myself who thank god are presently healthy (ive been suffering witn m.e for 8 years) but i live in watchful fear that will start to show the signs off illness i would be devestated to see either of them as desperately ill as your rocky i hope and pray that those with the power to help us will listen to us and start doing the research that is so needed
    i send you and your family lots of love and best wishes and hope you get some answers soon xx

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  6. Cheers for this,

    it describes what so many have to endure.

    XMRV seems like a red hot poker that the CDC and CAA don't want to touch.

    Seems so strange that a UK psychogenic study, with atrocious study design, that had to be held up for publication, to geive them time to find away of making the figures look better,

    would gets more coverage in UK and USA, than the XMRV retrovirus like HIV, being found in people with ME cfs Fibromyalgia, prostate cancer, autism on and on.

    I'm starting to feel like a dirty little secret that the governments wants to keep hidden.

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  7. Thanks for mentioning those totally biased PACE trials in this heart-wrenching story. I have tried graded exercise therapy (GET) just as most ME patients have. We know it most frequently leads to relapse because we have actually followed doctors' misguided orders before learning the hard way that they have definately got it wrong ....and yet these are the same doctors who prescribe total bed rest if you catch a virus like Influenza A or swine flu. It does not make sense for them to have a double standard.

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  8. Thank you for sharing I'm so sorry to hear how sick you both are. ME and XMRV are horrific to deal with, and the PACE trial is a joke!!

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  9. <3 Best wishes. Thank you for sharing <3

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