Saturday, November 24, 2012

Angela says....

Thanks to Sonia Poulton for this lovely comment in her Daily Mail blog: ""The problems about treating a physical illness in a psychological manner are brilliantly explored in Angela Kennedy's 'Authors Of Our Own Misfortune?' which tackles the topic with some considerable aplomb." http://poultonblog.dailymail.co.uk/2012/09/me-no-more-in-the-mind-than-multiple-sclerosis.html

Friday, November 23, 2012

Avoid the Emotional Pitfalls of Pain

 
 

Thanks to Tom Kindlon for this one!

[The following was highlighted by various people on Twitter as being
different from a lot of other "official" information on CFS. This is
the Google translation of it, which isn't perfect. I don't speak Dutch
so haven't tried to correct it. The information can be seen in Dutch
at the top link. Tom]
-----------------

http://bit.ly/QxAJMh  i.e.
http://www.euromut.be/ContentServer/particulieren/DossiersNL/dossier.chronisch-vermoeidheidssyndroom-CVS-nl/artikel.cvs-inleiding

In the search for the causes of the disease the biopsychosocial model
focuses on the biological , psychological and social factors . One
seeks the cause in the personality of the patient and in certain
vulnerability factors such as stress, depression, biological factors
and personality traits.

This hypothetical assumption is now under increasing pressure because it can not account for the physical symptoms.
 
* * *
That last sentence really isn't new information.  From the beginning, generalists thought it was fakery because it was "every symptom under the sun", but neurologists noted that all the symptoms are related to Central Nervous System dysfunction.
 
The problem, as Steve Dupre and I noted in our Request for Congressional Action years ago, is that what researchers know isn't getting down to the front lines of doctors who treat us.  They're still being taught in medical school that we're just stressed and depressed, and for many of them, what they were taught in medical school will be what they do the rest of their lives, they won't incorporate new treatments. 
 
Heck, something like 90% of them admit to not reading the medical journals, or glance only at the index before tossing them aside, so would never even know there's a new treatment.  Patient attempts to educate them are often dismissed as "don't believe everything you read on the internet", even if what you read was on the website of a reputable medical journal.
 
 
 

Tuesday, November 20, 2012

Recruiting for Chronic Pain Study

Note: Self-compassion scale can be found here:
www.self-compassion.org/scales-for-researchers.html. This study is
essentially about whether increasing coping skills might impact pain.

Brief Online Intervention for Chronic Pain
This study is currently recruiting participants.
Verified July 2012 by University of Maryland
Sponsor:
University of Maryland

ClinicalTrials.gov Identifier:
NCT01639196

Purpose

The purpose of this study is to explore the effects of writing about
chronic pain on mental and physical health. The effectiveness of two
different types of brief online writing interventions will be explored in
individuals with chronic pain.
Pain severity is measured on a 10-point rating scale.

Contact: Katie Schaefer, MA
chronicpainstudy@umd.edu<chronicpainstudy%40umd.edu?subject=NCT01639196,%20338877-1,%20Brief%20Online%20Intervention%20for%20Chronic%20Pain>
http://clinicaltrials.gov/ct2/show/NCT01639196?term=NCT01639196&rank=1

Monday, November 19, 2012

Being Sick Doesn’t Mean You’re Wrong: Enabling Real Healing | Tiny

 
The voice of some guru in our head whispering, "It's your fault. You just don't want to be healthy enough."
 
* * *
Or the voices of a bunch of Christians telling you "it's your fault; you're not a good enough person, you don't pray hard enough."

Sunday, November 18, 2012

When Poor Health and the Holidays Collide | Psychology Today

 

Another gem from Toni Bernhard
 
" As I say in my book, How to Be Sick, one of the bitterest pills for me to swallow when I became chronically ill was that suddenly the very activities that brought me the greatest joy were also the activities that exacerbated my symptoms. Prolonged socializing is one of those activities."
 
"People write to me all the time, convinced that some kind of moral failing on their part brought about their health problems. Let me set the record straight right here: it's not our fault that we are sick or in pain. We're in bodies, and bodies get sick and injured. It could happen to anyone. It took me many years to stop blaming myself for being sick."
 
* * *
I've recently had a conversation with a friend who seems to think that my ills could be solved by socializing more, not understanding that not only is trying to follow a multi-participant conversation exhausting, but that socializing in winter exposes me to flu and cold germs that can take me down for weeks.  My condition simply doesn't square with his personal experience that his depression is eased by socializing.
 
As for Toni's second point, I have had MANY people lecture me that I'm sick because it's my own fault -- either they think I violated basic health habits or they think I should be able to pray myself back to health.  I spent decades begging "I'll be good, I'll be good, please, God, make it stop!"  Neither the prayers nor the attempts to become a better Christian by doing even more for others had any effect on my health ... in fact, all the things I did for others made me sicker because I didn't have the energy to spare.
 
Toni's right -- STOP BLAMING YOURSELF!
 
The only thing I did "wrong" was to leave my germ-free apartment during flu season.  But if I'd been so paranoid about getting sick that I'd locked myself in and refused to go to work or for groceries till March, there would be other reasons for people to condemn me.
 
If prayer were enough, don't you think 30 years of prayers from 17,000,000 patients worldwide and their families would have produced a cure?
 
Fortunately, TV has figured out that there are a lot of us who are home on holidays.  Instead of wearing myself out on Thanksgiving either by spending 8 hours in my own kitchen, or making my way to someone else's house, I will be curled up with my knitting, watching the Macy's Parade on NBC in the morning and other parades on CBS in the afternoon.  When I'm too sick to cook, I just nuke a turkey TV dinner.  This year I'm feeling a little better and will pop a Louis Rich turkey breast portion in the oven.
 
Similarly, on Christmas, I stock up on take-out from the neighborhood Chinese restaurant so I don't have to cook, and settle in for a day of holiday-themed specials.  HGTV often has show after show of extreme Christmas decoration/light displays, and my local NPR radio station plays a variety of Christmas programs, including "Lessons and Carols from Kings College" and "The Messiah".  Much more enjoyable than having to endure someone's family drama.