Saturday, October 29, 2011

Symptom fluctuations and daily physical activity in patients with CFS

http://www.archives-pmr.org/article/S0003-9993(11)00417-5/abstract

Symptom fluctuations and daily physical activity in patients with
chronic fatigue syndrome: a case-control study.
Meeus M, van Eupen I, van Baarle E, De Boeck V, Luyckx A, Kos D, Nijs J.
Archives of Physical Medicine and Rehabilitation Volume 92, Issue 11 ,
Pages 1820-1826, November 2011

Abstract

Objectives
To compare the activity pattern of patients with chronic fatigue
syndrome (CFS) with healthy sedentary subjects and examine the
relationship between the different parameters of performed activity
(registered by an accelerometer device) and symptom severity and
fluctuation (registered by questionnaires) in patients with CFS.

Design
Case-control study. Participants were asked to wear an accelerometer
device on the nondominant hand for 6 consecutive days. Every morning,
afternoon, and evening patients scored the intensity of their pain,
fatigue, and concentration difficulties on a visual analog scale.

Setting
Patients were recruited from a specialized chronic fatigue clinic in
the university hospital, where all subjects were invited for 2
appointments (for questionnaire and accelerometer adjustments). In
between, activity data were collected in the subject's normal home
environment.

Participants
Female patients (n=67) with CFS and female age-matched healthy
sedentary controls.

Interventions
Not applicable.

Main Outcome Measures
Accelerometry (average activity counts, peak activity counts, ratio
peak/average, minutes spent per activity category) and symptom
severity (intensity of pain, fatigue, and concentration difficulties).

Results
Patients with CFS were less active, spent more time sedentary, and
less time lightly active (P<.05). The course of the activity level
during the registration period (P interaction>.05), peak activity, and
the staggering of activities (ratio peak/average) on 1 day were not
different between groups (P>.05). Negative correlations (–.242 varying
to –.307) were observed for sedentary activity and the ratio with
symptom severity and variation on the same and the next day. Light,
moderate, and vigorous, as well as the average activity and the peak
activity, were positively correlated (.242 varying to .421) with
symptom severity and variation.

Conclusions
The more patients with CFS are sedentary and the better activity is dispersed, the fewer symptoms and variations they experience on the same and next day. Inversely, more symptoms and variability is experienced when patients were more active that day or the previous day. The direction of these relations cannot be determined in a
cross-sectional study and requires further study.

Friday, October 28, 2011

Research, testing and treatment of ME/CFS, Dr. Dan Peterson, Stockholm, October

http://translate.google.com/translate?sl=auto&tl=en&js=n&prev=_t&hl=en&ie=UTF-8&layout=2&eotf=1&u=http%3A%2F%2Fwww.rme.nu%2Fforskning-provtagning-och-behandling-av-mecfs-dr-dan-peterson-stockholm-6-nov-2011

Research, testing and treatment of ME/CFS, Dr. Dan Peterson,
Stockholm, October 6, 2011

Introduction

County Council Stig Nyman (In Swedish)
http://vimeo.com/30601506

A. Research and Diagnostics

Lecture A. PDF - http://www.rme.nu/sites/rme.nu/files/foredrag_a_okt_2011_0.pdf

Video Capture, Part 1
- http://vimeo.com/30430680

Video Capture, Part 2
- http://vimeo.com/30432402

B. Sampling and treatment

Lecture B. PDF - http://www.rme.nu/sites/rme.nu/files/foredrag_b_okt_2011_0.pdf

Video Capture, Part 3
http://vimeo.com/30565606

C. Research Front and Q

Lectures C. PDF - http://www.rme.nu/sites/rme.nu/files/foredrag_c_okt_2011_0.pdf

Video Capture, Part 4
http://vimeo.com/30567445

Video recording issues
http://vimeo.com/3061732

Dr. Dan Peterson is one of the world's leading ME / CFS experts. As a
pioneer in the field, he has now over 25 years experience in both
clinical treatment of ME / CFS as a research. His clinic in Nevada are
ME / CFS patients from throughout the United States. Dr. Peterson has
done research on the biological mechanisms of ME / CFS and has
developed methods for adequate diagnosis, testing and treatment.

Tuesday, October 25, 2011

Working While Disabled

 
 In 2011, a trial work month is any month in which your total earnings are over $720, or if you are self-employed, you earn more than $720 (after expenses) or work more than 80 hours in your own business. The trial work period continues until you have worked nine months within a 60-month period.

Extended period of eligibility—After your trial work period, you have 36 months during which you can work and still receive benefits for any month your earnings are not "substantial." In 2011, we generally consider earnings over $1,000 ($1,640 if you are blind) to be substantial. No new application or disability decision is needed for you to receive a Social Security disability benefit during this period.

Expedited reinstatement—After your benefits stop because your earnings are substantial, you have five years during which you may ask us to start your benefits immediately if you find yourself unable to continue working because of your condition.

The Great Twitter Purge

 
Maybe it's because for all our Torah and training, Jewish professionals don't have a very good response to suffering. After all, when someone is sitting before you and asking why is there really a good response?

Even the rabbis of the Talmud spent a good deal of time trying to understand suffering and had no clear consensus as to why. In general, however, their responses wavered between two extremes: Either, you are suffering because you are bad, or you are suffering because you are loved.

Apparently, I'm in an abusive relationship with God.

* * *

This is not limited to religious Jews.  I've dealt with the same responses from religious Christians.  I got sick because I did something to offend God.  I'm still sick because I don't pray hard enough or believe strongly enough.  Whatever the reason, it has something to do with me being a bad bad girl.  Blame the Victim.
 
So much for Christian charity, and a good reason why, even when I'm physically up to it, I no longer attend church.  I can get far more comfort and fellowship from my e-friends while reclining on the couch than I do from so-called Christians at church (some of whom also show up bearing noxious diseases to share, because something bad enough to warrant a day off work isn't considered bad enough to keep them from church). No guilt, no germs, and no wasted energy if I stay home and "fellowship" online.
 

Quickly search 11 languages of CFS/FM news

Dr. Marc-Alexander Fluks notes:

 I've written an 2700-line JavaScript programme to read the latest CFS/FM news
 in 11 languages (Danish, Dutch, English, Finnish, French, German, Italian,
 Norwegian, Portuguese, Spanish, and Swedish) and 7 services (Lists, Politics,
 Products, Science, Search, Topics, Translator). From now on, anyone can find
 the latest CFS/FM news: your computer will do the job for you.
 
The programme will also search and translate other news topics in the above
 languages. Deeplinks are supported (see below); the update frequency running
 from a few seconds to once a day (default: 15 minutes).
 
Variables are added to the URL to tell the programme what to do. The programme
 itself determines how to define these variables and to link to the 32 subpages
 present in the script.
 
The URL is,
 http://www.me-net.combidom.com/newsreader
 
Examples,
 - The latest CFS/FM news in English,
 http://www.me-net.combidom.com/newsreader/?language=en
 - The latest CFS/FM news in English, news update: 1 hour.
 http://www.me-net.combidom.com/newsreader/?language=en&update=60
 - The latest CFS/FM science news,
 http://www.me-net.combidom.com/newsreader/?service=science
 - The latest XMRV news in English,
 http://www.me-net.combidom.com/newsreader/?service=search&query=xmrv&language=en
 - The latest Rituximab news in Norwegian,
 http://www.me-net.combidom.com/newsreader/?service=search&query=rituximab&language=no
 Translate Norwegian into other languages,
 http://www.me-net.combidom.com/newsreader/?service=translator

Monday, October 24, 2011

Flupirtine - A New Drug to Treat FM?

Petition for Apology and Research Funding

This petition is asking for an official apology for not responding
appropriately to the ME/CFS epidemic, to double research funding, and to take down
false information on the CDC's CFS website.
Each time someone signs the public servants that this is addressed to will
receive an email !!!
_https://www.change.org/petitions/apologize-for-not-responding-appropriately
-to-the-mecfs-epidemic_

(https://www.change.org/petitions/apologize-for-not-responding-appropriately-to-the-mecfs-epidemic)

'It's a shameful state of affairs' | This is Bristol

 

THERE is never a mention about quality of care for people suffering for decades with ME (myalgic encephalomyelitis) in their own homes. Yet they are victims of the same types of neglect reported after unannounced inspections of NHS hospitals, by the Care Quality Commission (CQC calls for action to improve care for older people, press release, October 13, 2011), including basic nutrition, personal needs and social isolation, often failing to meet legal standards, never mind any consideration of decency. This is because (a) no one from the Commission, or anyone else, ever visits them and (b) many people with ME don't have a carer anyway – no one. It may be that some readers were genuinely not aware of this shameful state of affairs, which may leave ME sufferers unwashed and not properly fed for months at a time, because they are unable to call out for help for themselves. But now this organisation has done so, on their behalf, there is no excuse for it to continue, is there? Sadly, I think it will.

Dr John H Greensmith

ME Community Trust.org