Saturday, December 24, 2011

Full retraction of 2009 XMRV/CFS paper by Science

Thanks, Tim, for this link.....

The Chronic Fatigue Retraction: Good Science Takes Time

"It was a long time coming: a journal retracts a controversial 2009 paper linking a virus to chronic fatigue. The good news? Faulty data can't hide."  By Alice Park

Read more:

Wednesday, December 21, 2011

NHBPM Day 26 ~ Veggie Tales Wisdom

From Bread and Roses during National Health Blog Post Month

When my daughter was little and we first discovered veggie tales, I made several adult friends (who didn't have kids) sit down and watch some of the songs with me. 

I was just going to post a few for levity as a follow up to yesterday's muppets videos, but when I got back to my internet and could post, lobster quotes had a zinger that fit the first one:

Security is mostly a superstition. It does not exist in nature..Life is either a daring adventure or nothing~Helen Keller  (from Nov. 22)
The thing we fear we bring to pass~Elbert Hubbard

#NHBPM Day 16 ~ All I need is a better hood (Smithsonian Day 2)

Post from November from Bread and Roses; 2nd day of our Smitshonian trip last month

Today I was running in D.C. in the rain.  My feet were getting damp through my Dansko clogs and I could tell that the raincoat I packed was not really rain proof any more.  My hands were getting wet, so I knew I couldn't really deal with the other parts of me that were getting wet or tuck my hair under my hood successfully.

I had parted with my husband and kids and mother and father in law as they began their day in the American History Museum of the Smithsonian so I could grab a coffee.  I would absolutely need it to pull another full day of this kind of travel.

I came to a catty-wampus intersection that had a secondary pedestrian light in the middle of multiple lanes of traffic.  My timing was bad and I was going to barely make it across the confusing part in time to make a run across half of the lanes of traffic.  And a blind woman was going to get stuck in the middle, as she was just barely finding the light with her cane.  She asked for help as I was deciding whether or not she would be offended by the offer. 

We made small talk about the rain until the light changed.  She wore a long wool coat that looked like it was working fairly well, but she pointed to her head and said, "All I need is a better hood."

Sunday, December 11, 2011

Lyme status in Montana (officially?)

As far as I've seen, it's easier to get treated for lyme disease in Montana thatn to get diagnosed or thoroughly tested.  My doctor, I'm certain, would continue further if I brought in compelling evidence.  Which I think is a decent position for her to take.  There were only so many tests I wanted following my Chronic Fatigue Syndrome diagnosis, once she felt we'd cleared all the remaining questions.

But I have so much in common with lyme disease patients (aside from my current recovery) that it has remained a lingering question mark.  Bell's palsy, for example, can be a symptom of Lyme disease.  And I did have a tick on me within a month prior to Bell's, and a red rash on my scalp within a month after.  Although there was no evidence of a bite, there is often no evidence of a bite.

When Lyme disease had not yet been detected in Colorado, a Forest Service employee (as per the movie Under Our Skin) went in to a doctor with a ring shaped rash, a tick bite, and the tick in a jar.  It still took hime two or three years to get diagnosed.  So the idea that lyme is a possibility is not so far fetched.  Montana doesn't have lyme disease because we're not testing for it, though we're not testing for it because we 'don't have it'.

My daughter's homeroom teacher (a junior high science teacher) has helped at least two or three local people get diagnosed due to her familiarity with the symptoms through her son (who almost died of lyme disease).  In one of the cases, a student went home from school talking about ticks and lyme disease to her mother, who had been sick for months or years but hadn't had any luck figuring out the cause.  When her daughter came home describing her symptoms right on the nose, she got tested, diagnosed, and treated.

Many people post in the Bell's palsy and CFS forums I read about their overlapping lyme symptoms, or about how lyme treatments are going.  The two are reported to be indistinguishable by most methods of testing, but that is not an agreed upon fact.  There is considerable politics and contention surrounding the topic.  If you watch Under Our Skin and follow up with your own research, you come away with a pretty strong acknowledgement that some conspiracy theories are just not so easy to disprove.  Some things sound unbelievable and far-fetched because they are attrocious, not because they are untrue.

So, while Montana does not have the right kind of tick, and therefore does not have lyme disease, it is not really disputed that we may have a Lyme-disease like agent adapted to local ticks, which an eye opening article refers to as a possible "cousin" to Lyme.  A similar article citing the same source (Epidemiologist Todd Damrow) describes a patient with the 'mystery illness' having been helped by medication. 

Other doctors support the possibility of lyme disease in Montana and report lyme positive patients who haven't traveled outside of Montana (also noting that insects are not the only transmission method).

Although these sources are all clearly of the same mind and possibly drawing conclusions based on the same general influences of thought, this certainly does not discredit them nor those influences, nor the validity of their doubts.  In a addition to not looking for lyme disease here, reporting may also be flawed, and seems likely to be, at the very least due to the fact that CDC reporting standards are based on east coast lyme disease.

Officially, we 'don't have lyme' in Montana.  Realistically, the degree of certainty with which patients with lyme disease similar symptoms are told they must have something else does not seem at all justified.

Wednesday, December 7, 2011

What I look like when I listen (a few reflections on my face)

An Eric Gillet photo from Cheryl's wedding rehersal

I like this picture.  I posted some of Eric's pictures of Cheryl and Miguel before their wedding (he took their engagment pictures, which were amazing, and his work is captivating, to say the least).  In chatting with him before the rehersal, I told him I have a special nack for ruining pictures, and he saw first hand after not realizing how serious I was, that I do have an uncanny ability to close my eyes and contort my face as a shutter closes.  The above photo, though, I like. 

My face was tired a lot that weekend and there is a fair amount of asymmetry in my face in other pictures, and now in general, even compared to earlier in my recovery.  I also discovered that I have no control over my 'lesser' neck muscles on my Bell's side.  I don't know if this is new or if I just didn't notice all this time.  They aren't muscles I think I need for anything.  But, by the way it feels to smile these days, there may be some other muscles that are either regressing or that did not heal the way I thought they did.

Most people would never know now by looking at me that I had Bell's.  It's visible in some photos, espcially when my face is tired or when I couldn't tell my Bell's side wasn't smiling, so I didn't correct it.  In this picture, though, it is hardly even visible to me.

I don't spend time thiking about it from the perspective of outright vanity, and interestingly that didn't even bother me a whole lot when I didn't know if I would heal.  Frankly, I care more when I occasionally get a zit in various ridiculous looking spots on my face.  I rarely spend time on my appearance.  I thought about it in terms of attractiveness to my husband, though, I guess, as I healed.   But not in the way you think about your hair or acne or crooked teeth when you're a teenager and you (truly, though not consciously) believe your value and acceptance are dependent on those things. 

It worried me more with my kids and with interpersonal communication.  People responded to me very, very differently when I couldn't smile.  Responses ranged from akwardness to outright hostility.  The differences in my face now impact interactions less, of course, but there are still subtle differences, both in my face and in the way I feel during conversations where subtle facial cues are important. 

This photo captures how I feel a lot of the time around people.  Not entirely sad, but someimes at least a little separate...working at connecting.

Like many major illnesses, Bell's leaves most of us a little wiser and more grateful than we were before, but also just unexplainably different.