Friday, January 18, 2013

FREE housecleaning for cancer patients

FREE housecleaning for cancer patients:

If, like me, you're chronically ill and physically unable to do the cleaning yourself, you're still entirely on your own.

Cost-effectiveness of rehab

Note: According to the authors, "PR provides an explanation for patients'
symptoms, based on a model in which CFS occurs as a consequence of
physiological dysregulation associated with inactivity, disturbance of
sleep and circadian rhythms
, and the somatic symptoms of arousal or

The explanation provides the rationale for a rehabilitation program,
developed collaboratively with the patient, which includes a graded return
to activity and normalisation of sleep patterns."

Other researchers have found the physiological deregulation precedes
lessened activity.

BMC Family Practice 2013, 14:12

Cost-effectiveness of supported self-management for CFS/ME patients in
primary care

Gerry Richardson, David Epstein, Carolyn Chew-Graham, Christopher Dowrick,
Richard P Bentall, Richard K Morriss, Sarah Peters, Lisa Riste, Karina
Lovell, Graham Dunn , Alison J Wearden

Nurse led self-help treatments for people with chronic fatigue
syndrome/myalgic encephalitis (CFS/ME) have been shown to be effective in
reducing fatigue but their cost-effectiveness is unknown.

Methods: Cost-effectiveness analysis conducted alongside a single blind
randomised controlled trial comparing pragmatic rehabilitation (PR) and
supportive listening (SL) delivered by primary care nurses, and treatment
as usual (TAU) delivered by the general practitioner (GP) in North West
England. A within trial analysis was conducted comparing the costs and
quality adjusted life years (QALYs) measured within the time frame of the

296 patients aged 18 and over with CFS/ME diagnosed using the Oxford
criteria were included in the cost-effectiveness analysis.

Results: Treatment as usual is less expensive and leads to better patient
outcomes compared with Supportive Listening. Treatment as usual is also
less expensive than Pragmatic Rehabilitation.

PR was effective at reducing fatigue in the short term, but the impact of
the intervention on QALYs was uncertain. However, based on the results of
this trial, PR is unlikely to be cost-effective in this patient population.

Conclusions: This analysis does not support the introduction of SL

Any benefits generated by PR are unlikely to be of sufficient magnitude to warrant recommending PR for this patient group on cost-effectiveness grounds alone. However, dissatisfaction with current treatment options
means simply continuing with 'treatment as usual' in primary care is
unlikely to be acceptable to patients and practitioners.

Trial registration: The trial registration number is IRCTN74156610

Sympathising with the chronically ill | decimawho

Shit people say to the chronically ill.

Rituximab receives $100,000 seed money for clinical trial

Per the OMI newsletter

Note: Like Ampligen, Rituximab may not be effective for all patients
subsumed under the CFS and ME umbrellas. Determining biomarkers for
responders would help subgroup these patients in order to strengthen the

Rituximab Clinical Trial Effort Receives First $100,000 towards New
Potential ME/CFS Treatment

We are thrilled to announce that the Open Medicine Foundation (OMF) has
received its first donation towards a comprehensive scientific strategy to
attack ME/CFS. A very generous patient from the Open Medicine Clinic has
donated $100,000 to initiate the proposed large-scale, international,
multi-center Clinical Trial with rituximab for ME/CFS. His optimism is
helping launch the fund raising for this clinical trial so that people
around the world can realize the potential benefit from this and other
potential therapies.

This donation leads the way for others to donate ($50 or $100 or whatever
they can) to help jump start research to help find needed diagnostic tools
and treatments for this debilitating, devastating, life-altering disease.

With $50-$100 from 100,000 patients, friends, family and foundations
towards the $7.65 million initial goal for this trial, then this study can
begin immediately. With 200,000 such gifts we could start a comprehensive
list of projects with direct diagnostic or treatment effects!

Donors have already pledged over $1.7 million towards various OMI-MERIT

Additional information can be found here:

Thursday, January 17, 2013

Your Physical Illness May Now Be Labeled a Mental Disorder

To Give Or Not To Give…and How Much?

To Give Or Not To Give…and How Much?

JANUARY 15, 2013

by Sasha

If any of us was Bill Gates, we wouldn't ask ourselves whether we
should donate money to ME charities. We'd just do it. We'd reach into
our gigantic bank account and drop our billions on the problem, secure
in the knowledge that we were pouring such shedloads – no, planetloads
– of cash onto it that the problem would be solved.

We're not Bill Gates. So, should we bother giving if we can't give billions?

In his book, 'How to Change the World', John-Paul Flintoff says that
we tend to think that when big things happen, it's because one person
did something big, but in reality, it's usually lots of individuals
making small contributions. It's well worth each of us making even
small donations, because we're among thousands doing the same thing.
It's also important to tell others what we're doing so that they don't
feel like suckers if they give and so that we make donating to our
charities a social norm. By telling people about your giving, you
multiply it.

So if you're not in debt or really struggling to afford the basics, it
would be a good idea to donate. But how much? As people who are
chronically sick, we're probably going to be a bit more cautious with
our money than most but if we pick a strategy that suits us, we'll be
more likely to give and to feel comfortable doing it. And it needn't
be the same strategy forever: pick something that suits you for now,
and if it doesn't later, change it.

Here are a few approaches to choosing how much to give:

Article continues at:
* * *
Both as a result of the way the church acted regarding my CFS ("just another word for lazy") and because going to church exposed me to germs that required me to take extra days off work (that mindset that it's better to share your flu than miss church), I've left the church. 

Instead of tithing to a church, I donate a percentage of the earnings from my editing business to CFS research.  The minimum I donate is 10%, but when Simmaron was trying for matching funds, I donated far more than that.

If you can't afford to give anything now, please write it into your Will.  It doesn't have to be a huge amount, even selling your bed and clothes at a yard sale will provide a few dollars toward research.  Or "in lieu of flowers, donate to [CFS charity of your choice]."
One year, I even tucked envelopes for one of the charities into my Christmas cards urging friends and family to tuck a check in to fund CFS research.  (I may do that again this year if I think of it in time to order the envelopes.)

DSM-5, Somatic Symptom Disorder

From Suzy Chapman for

January 16, 2013

Today, Allen Frances, M.D., publishes a follow-up to our December 8 commentary in which we set out the implications for all chronic illness patient populations of misdiagnosis with "Somatic Symptom Disorder (SSD)" or misapplication of an additional diagnosis of "SSD."

In this second of three commentaries, Dr Frances reports on the outcome of his representations to the DSM-5 SSD Work Group, key APA Board of Trustees office holders and DSM-5's Task Force chair and vice-chair.

Dr Frances' first commentary on SSD is approaching 20,000 views and has received over 300 comments on Psychology Today, alone. It is also published at Huffington Post and at Education Update and has been widely circulated on other platforms.

There has been an overwhelming response to our concerns with comments pouring in from patients with diverse chronic illnesses and conditions including Ehlers-Danlos Syndrome, Interstitial Cystitis, Behcet's disease, Endometriosis, Lupus, Hashimotos thyroid disorder, Hughes Syndrome, Pancreatitis and Chronic Lyme disease - comment after comment from patients whose symptoms had been dismissed for years before finally receiving a diagnosis or who are still struggling to obtain a diagnosis, many of whom had been mislabelled with a somatoform disorder.

We've also received many emails from patients and international patient organizations thanking us for exposing the perils of these highly subjective, catch-all criteria.

The texts for DSM-5 are expected to be finalized for the publishers by the end of this month.

I'd like to thank all of you who have left comments to the first commentary and reposted the link. Please also circulate the link for Dr Frances' follow-up commentary, below.

We are particularly keen to reach platforms for patients with common chronic diseases and conditions - cancer, heart disease, diabetes, COPD, MS, RA; also Lyme disease, chemical injury and rare diseases, IBS and Fibromyalgia, as well as our own patient group.


Allen Frances, M.D., was chair of the DSM-IV Task Force and of the department of psychiatry at Duke University School of Medicine, Durham, NC. He is currently professor emeritus at Duke.

Psychology Today

DSM5 in Distress

The DSM's impact on mental health practice and research
by Allen Frances, M.D.

Published on December 16, 2012 by Allen J. Frances, M.D., in DSM5 in Distress

Bad News: DSM 5 Refuses To Correct Somatic Symptom Disorder
Medical Illness Will Be Mislabeled Mental Disorder

"Many of you will have read a previous blog prepared by Suzy Chapman and me that contained alarming information about the new DSM 5 diagnosis 'Somatic Symptom Disorder.'

"SSD is defined so over inclusively by DSM 5 that it will mislabel 1 in 6 people with cancer and heart disease; 1 in 4 with irritable bowel and fibromyalgia; and 1 in 14 who are not even medically ill.

"I hoped to be able to influence the DSM 5 work group to correct this in 2 ways: 1) by suggesting improvements in the wording of the SSD criteria set that would reduce mislabeling; and 2) by letting them know how much opposition they would face from concerned professionals and an outraged public if DSM 5 failed to slam on the brakes while there was still time..."

Read on here:

Further coverage:

Mislabeling Medical Illness As Mental Disorder: Allen J Frances, M.D., December 8, 2012:

Moving in the Wrong Direction: Dr Tiffany Taft, Ph.D., Northwestern University, December 13, 2012:

Proposed DSM-5 Criteria May Unfairly Label Physical Conditions as Psychological Disorders: IBS Impact, December, 2012:

Somatic Symptom Disorder could capture millions more under mental health diagnosis: Suzy Chapman, May 26, 2012:

Suzy Chapman

Marriage and Family Therapists: Understanding Fibromyalgia

Source: California State University
Date: December 2012 / January 9, 2013

Title: Workshop for marriage and family therapists: understanding
fibromyalgia syndrome
Author: Williams, Michelle
Type: Thesis


The purpose of this project is to create a workshop that will educate
Marriage and Family Therapy Trainees, Marriage and Family Therapy
Interns, Licensed Marriage and Family Therapists and licensed
Psychologists about fibromyalgia syndrome. Once educated, therapists
would be able to recognize this medical condition and appropriately
treat their therapy clients; they would dismiss labels such as
somatization disorder, factitious disorder or malingering, for this
population. In addition, they would be aware of and can assess for the
high rates of depression and suicide risk associated with the
diagnosis. In clients not yet diagnosed with fibromyalgia the educated
therapist will potentially have the foresight to refer their clients
to an appropriate medical doctor for evaluation and treatment. If the
therapist is knowledgeable and prepared with the appropriate treatment
options, in advance, for the obstacles that some with fibromyalgia
face, their effectiveness for this population of client will improve.
In addition, the relationship between the therapist and client
diagnosed with fibromyalgia could strengthen as a result of the
therapist taking the initiative to understand their client?s
subjective reality.

(c) 2013 California State University

Check out Not Fatigue After All? New Model Suggests Other Symptoms Better Exp

When doctors don't listen -

Dr. Groopman pointed out that misdiagnoses occur because doctors stop listening after 18 seconds.  Here's what to do about it.

Wednesday, January 16, 2013

Think Beyond the Label Online Career Fair | Brazen Connect


Think Beyond the Label Online Career Fair

Recruiting Workers with Disabilities Nationwide!

Date: March 5, 2013
Time: 1:00pm EST to 4:00pm EST

Energy Envelope Research Results

Source: Fatigue: Biomedicine, Health & Behavior
Date: January 14, 2013
Rem: This is the new IACFS/ME journal

Energy conservation/envelope theory interventions
Leonard A. Jason(a,*), Molly Brown(a), Abigail Brown(a),
Meredyth Evans(a), Samantha Flores(a), Elisa Grant-Holler(a)
& Madison Sunnquist(a)
a Center for Community Research, DePaul University, Chicago,
* Corresponding author. Email: [email protected]

Received: 05 May 2012
Accepted: 08 Aug 2012
Version of record first published: 14 Jan 2013


Treatment approaches for patients with chronic fatigue syndrome (CFS),
Myalgic Encephalomyelitis (ME) and Myalgic Encephalomyelitis/chronic
fatigue syndrome (ME/CFS) have been controversial. This paper provides
the theoretical and conceptual background for the Energy Envelope
Theory to assist patients and reviews evidence of its treatment

Over a 15-year period, efforts were directed to develop a
non-pharmacologic intervention that endeavored to help patients to
self-monitor and self-regulate energy expenditures and learn to pace
activities and stay within their energy envelope.

Studies show that the energy envelope approach, which involves
rehabilitation methods, helps patients pace activities and manage
symptoms and can significantly improve their quality of life.

energy envelope, pacing, chronic fatigue syndrome, Myalgic
Encephalomyelitis, Myalgic Encephalomyelits/chronic fatigue syndrome

(c) 2013 Taylor & Francis

Tuesday, January 15, 2013

Why are we allowing mild sufferers to die?

Hi all,

There is a new post on The Kafka Pandemic. It is called
"Why are we allowing mild sufferers to die?":


The Kafka Pandemic:

The disease DOES progress. MANY people have died from it. ANYBODY
can get it. There is no hope without action.

Monday, January 14, 2013

KLIMAS: Redefining Exercise in CFS through Reconstruction of Aerobic Capacity

KLIMAS: Redefining Exercise in CFS through Reconstruction of Aerobic Capacity

The CFSPCOCA conference call was today.  To submit questions, propose agenda items, or get on the mailing list for the next call, send an e-mail to [email protected] The next call is scheduled for August.
CDC's Elizabeth Unger:
This is the second call in the series.  The audience for the first was so much larger than anticipated last time that they've doubled the number of phone lines.  By popular demand, a summary of the talk and the Q&A will be posted online.
CDC is now working on the most pressing needs as identified by advocacy groups. #1 request was for better healthcare, recognition and treatment.  The Multi Site Clinical Assessment is obtaining standardized information from 7 clinicians: Klimas, Natelson, Kogelnik, Lapp, Peterson, Bateman and Powell.  Data on illness, history of the illness, family medical history and prescriptions/treatment.
At this point 96% of patients enrolled are in the system and 62% of the info has been collected.  The results should be out this fall.  Some of the sites including children/adolescents.
Phase 2 includes blood samples, cognitive testing, exercise tolerance; final protocols are being prepped.  It should start in March/April.  More info on the CDC website.
#2 was for more education. They have plans to develop new content.  They've met with patient advocacy groups and a professional educator, and the next step is pediatric CFS experts.
In March 2012, Medscape put up "CFS: Challenges in Primary Care", which has been viewed 31,000 times and 5000 medical professionals have already received Continuing Education Units for it.  This is the largest audience reached to date with one of these educational videos.  Doctors say the most significant barrier to proper treatment is limited time for visits.
November 2012, Medscape put up "Back to School and CFS" to help school nurses deal with students with limitations.
In March 2013, they'll do "Case Based Approach to CFS" with Komaroff moderating about management/treatment.  There will be test questions to see how much the doctors have learned.
The Med Ed portal on the Association of Medical Colleges website is free.  They have 2 vignettes filmed.  The first shows poor attitude, the doctor doesn't take the patient's complaints seriously.  The second shows him learning from another doctor and promising to do better in the future.  That should be available in June 2013.
Nancy Klimas, MD and Connie Sol, PhD
"Exercise is a dirty word in our field."  It doesn't have to be.
They were investigating blood volume and discovered that "deconditioning alone explained dysautonomia" (the severity of abnormalities in blood pressure, pulse, respiratory rate, etc. correlated with the level of deconditioning).  If your pulse is racing, that's an adrenaline rush.  If you have tachycardia while lying down, the adrenaline will keep you from falling asleep.
Taking exercise as a challenge, when you exceed the aerobic threshold you go into an anaerobic state, and that's what produces relapse.  On average it takes patients 8 minutes to reach threshold, after that 8 minutes you're already releasing inflammatory cytokines. 
Klimas treats the autonomic dysfunction/deconditioning first.  You need to understand your PERSONAL limit for aerobic retraining.
Sol's background is training athletes with MS.  "Exercise is wonderful for MS."  But in CFS they are not "making athletes", they're working in "very very tight zones", just a few minutes is enough.
Even activities of daily living can be "exercise" if it raises your heart rate.  The approach is more important than the type of exercise: use pacing!  Get a pulse monitor, continuous is best, because if it's the kind you have to press your finger, by the time you get the reading, you're over the limit and the damage is done.
There are two types of metabolism.  Aerobic burns fat; 1 unit of fat = 36 units of energy.  Anaerobic is when you move from fat burning to carbs, the emergency system.  You need to stay below your anaerobic heart rate to burn fat.  220 minus your age x 60% – for those of us in our early 50s, heart rate around 100 beats per minute.
Debilitating illness causes dysfunction at the threshold.
Exercise done lying on your back is best.  You can do yoga, water exercise where you're floating, slow swimming, slow Pilates, resistance exercise, eventually working with light weights, exercise 1 minute and rest 2 minutes..  Your heart rate should NOT go up.  As soon as the pulse meter shows the heart rate at the cut off (i.e., 100 for early 50s, below 100 for late 50s), STOP!!!!!
Q: What symptoms are improved?  More endurance through reconditioning and pacing.  Some patients who were previously athletes, the body remembers and they can do more to start, but you MUST keep under the anaerobic threshold, using pacing and naps to rebuild.
Q: Does CFS destroy mitochondria?  Cytokines are produced with exercise, and the mitochondria shut down.  With deconditioning, you need to start slowly and build back up.
Q: What about diet? Work with a nutritionist to see what nutrients/enzymes you personally are missing.  As blood moves away from the gut, digestion is affected.
Vitamin D
Omega 3 – anti-inflammatory, quiets the cytokines
probiotics for gut problems
Q: Should we get a flu shot?  Unger says we can get them, they're recommended, but talk to your PCP about contraindications.  Klimas agrees that most patients should get a flu shot.

Sunday, January 13, 2013

Countess plays Smackdown again!

As per Rosie Cox, the text below is the original letter sent to the
Independent on Sunday in reply to an earlier piece. The IoS had promised to
print the full version online with the shortened 140 word version in the
paper edition. As of this writing, the full copy (below) is not online.


Professor Peter White, on behalf of himself and his 26 co-signatories, has
apologized to the three of us following the publication of their letter on
2 December 2012. He made it clear that he did not intend to imply that we
were harassing Professor (now Sir) Simon Wessely. We were not harassing
him. None of us believes that harassment is a means of advancing scientific
debate, and certainly not in promoting a greater understanding of the
causes of ME/CFS.

In the IoS article of 25 November 2012 we were criticizing the award of the
Maddox Prize to Professor Wessely because it is axiomatic that the progress
of scientific understanding depends upon sound evidence. Sir Paul Nurse,
President of the Royal Society, has said: "The John Maddox Prize is an
exciting new initiative to recognize bold scientists who battle to ensure
that sense, reason and evidence base play a role in the most contentious

We are in complete agreement with Sir Paul. We would wish the scientific
process to prevail, whereby the extensive peer reviewed biomedical evidence
base on ME/CFS is acknowledged and used by all researchers in the field to
advance the understanding of the disorder, and we have been calling for
this for many years.

There can be no doubt that the cause of ME/CFS is a contentious issue and
that there remain many unanswered questions. Both Professor White and Sir
Simon Wessely have promoted an hypothesis that ME/CFS is due to an abnormal
illness belief; that it is perpetuated by dysfunctional beliefs and coping
behaviours, and that cognitive behavior therapy (CBT) and graded exercise
therapy (GET) are effective treatments for the condition. In an attempt to
prove this hypothesis Professor White, principal investigator, and
colleagues, including Sir Simon, conducted what has become known as the
PACE trial, published in February 2011 in The Lancet, at a cost of some £5m
to the taxpayer. No data on recovery rates and positive outcomes have been
released and a FOI request to Queen Mary University of London revealed
that: "The requested data relating to recovery rates and positive outcomes
do not exist. That is to say that such analyses have not been done and
there is no intention to do so.
The reason for this is that the analysis
strategy has changed from the original protocol."

There has been no attempt by Professor White to correct the misapprehension
in respected journals as well as the popular press that the PACE trial
demonstrated recovery rates of between 30% and 40%. The release of all the
data relating to the PACE trial would be the most telling indication of the
efficacy of CBT and GET and would contribute very effectively to the
evidence base that precise scientific enquiry demands.

In our view, the idea that ME/CFS owes its origins to a dysfunctional psyche is an hypothesis that lacks any scientific evidence base. We are therefore at a loss to understand why the Maddox Prize was awarded to the defender of that hypothesis rather than to someone who was upholding the spirit of true scientific enquiry.

Our main interest is in advancing the scientific understanding of the cause
of a frequently devastating and debilitating condition which blights the
lives of many thousands of people. We do not believe that personal attacks
directed against Professor Sir Simon Wessely will advance the cause, but
reserve the right to direct criticism at the hypothesis both he and
Professor White continue to espouse. We believe that a proper scientific
understanding of the cause(s) of ME/CFS will emerge in the fullness of time.

The Countess of Mar
Professor Malcolm Hooper
Dr William Weir
House of Lords
London SW1

Why Can't I Sleep? | Psychology Today

Be sure to read Toni Bernhard's piece, at the bottom of the page. 
When I point out that I had excellent sleep hygiene -- since I had to get up for work, I DID go to bed at roughly the same time and get up at roughly the same time every day -- and got 1/2 hour of early morning sun walking to work, and couldn't sleep anyway, the detractors don't seem to hear "facts", and argue with me that if I'm not sleeping, I must be doing something wrong.
Like everything else about this disease, it goes against the grain, and therefore, if you're not having normal results, the assumption is that you're doing something wrong, not that you have a condition that makes your body do strange things.

Yoga and Fibromyalgia

Note: This paper is behind a paywall. Hopefully it would include additional
information on the type of yoga used. There are many different forms
ranging from gentle stretching (Hatha) to far more strenuous forms.
Increased function was found for fibromyalgia patients, however impact on
psychosocial issues isn't listed in the abstract as significant

Musculoskeletal Care. 2013 Jan 9. doi: 10.1002/msc.1042. [Epub ahead of

Yoga for Functional Ability, Pain and Psychosocial Outcomes in
Musculoskeletal Conditions: A Systematic Review and Meta-Analysis.

Ward L, Stebbings S, Cherkin D, Baxter GD.


Centre for Physiotherapy Research, School of Physiotherapy, University of
Otago, Dunedin, New Zealand.



Musculoskeletal conditions (MSCs) are the leading cause of disability and
chronic pain in the developed world, impacting both functional ability and
psychosocial health. The current review investigates the effectiveness of
yoga on primary outcomes of functional ability, pain and psychosocial
outcomes across a range of MSCs.


A comprehensive search of 20 databases was conducted for full-text,
randomized controlled trials of yoga in clinically diagnosed MSCs.


Seventeen studies met the inclusion criteria, involving 1,626 participants
with low back pain (LBP), osteoarthritis (OA), rheumatoid arthritis (RA),
kyphosis or fibromyalgia. Studies were quality rated, and analysed for the
effect of yoga on primary outcomes, immediately post-intervention. Twelve
studies were rated as good quality.

Yoga interventions resulted in a clinically significant improvement in
functional outcomes in mild-to-moderate LBP and fibromyalgia, and showed a
trend to improvement in kyphosis (excessive outward curvature of the spine,
causing hunching of the back).

Yoga significantly improved pain in OA, RA and mild-to-severe LBP.
Psychosocial outcomes were significantly improved in mild-to-moderate LBP
and OA.

Meta-analysis of good-quality studies showed a moderate treatment effect
for yoga of -0.64 (95%CI -0.89 to -0.39) for functional outcomes and -0.61
(95%CI -0.97 to -0.26) for pain outcomes.


Evidence suggests that yoga is an acceptable and safe intervention, which
may result in clinically relevant improvements in pain and functional
outcomes associated with a range of MSCs. Future analysis of outcomes which
take into account the amount of yoga received by participants may provide
insight into any putative duration or dosage effects of yoga interventions
for MSCs.

Copyright © 2013 John Wiley & Sons, Ltd.