Saturday, June 21, 2014

Why those with treatable diseases get more sympathy

The psychologist Melvin Lerner talked about the "just world hypothesis" – the idea that we hate injustice so much that, if someone seems to be undergoing an unfair punishment, we start inventing crimes to fit it.
... If someone's story is too bad, and too hopeless, we find it hard to sympathise. It just seems to demand too much.
* * *

I periodically point out that those with cancer -- some forms of which now have a nearly 100% cure rate -- are still treated as if it's an automatic death sentence, but PWCs, with a zero percent cure rate, are treated like lazy mooches when, in fact, it is damn near impossible for us to get disability benefits in a timely manner, charitable assistance, or volunteers to clean houses or drive us to doctor appointments.  All the things cancer patients take for granted, we can't get at all.
That I wish I had cancer instead of CFS brings out the verbal abuse.  Frankly, my odds of going back to work would be better.  There are things doctors can do for cancer.  And, yes, I have a lot of cancer patients in my family, so I know how the two compare.  My dad got 20 good years after his surgery and died at the ripe old age of 86.  I have a life expectancy of 58, and have spent most of the past 20 years homebound.
A friend had successful cancer treatment a year ago.  Even though she had a husband and sisters available to take care of her, the whole neighborhood pitched in to bring casseroles and do yardwork.  I have no husband or sisters to help out, and only once has a neighbor brought me a plate of food ... leftovers from a party, and I had to turn it down because of my food allergies.  And instead of doing a little yardwork for me, the neighbors call and report me to the authorities when my hired help doesn't do the job well enough.  Instead of help, I get threatened with sizeable fines. 
No charity has ever sent a volunteer -- even when I was going to church regularly, not one person from the church offered any assistance.  Nor have I received any money or other tangible goods from any charity.  Every place I called informed me that I don't have the right diagnosis, and therefore I should call the charity affiliated with my disease.  What do I mean they don't have an office here?  This is a major city.  What do I mean they don't even have an office in the state?  What do I mean they don't provide anything directly to the patients, all they do is raise money for research?!?!?
All of this is just too foreign from the usual disease concept for anyone to get their heads around.  If my disease charity isn't sending volunteers, people convince themselves that it's because I don't need any help, not because the disease isn't respected enough to attract volunteers.

Learning to Live With ME/CFS: 2014 Changes to Social Security Ruling

recent changes to the US's Social Security Ruling for ME/CFS

Wednesday, June 18, 2014

Valley Fever -- Similarities

"When you go into a doctor's office, you HAVE to know more about this disease than the doctor."
* * *
Like CFS, there's no cure, and no agreed-upon treatment; once you have it, any immune system insult can bring it back to affect you again.  2/3 as prevalent as West Nile Virus, it gets only 4% of the research funding.
As a result, like CFS, doctors (even in areas where it's common) often don't know anything about it and the patients basically have to diagnose themselves and teach the doctor about it.
Valley Fever, Coccidioidomycosis. is becoming more common in California, and non-Anglos are especially hard hit. 

McCaskill Takes Aim at Weight-Loss Scams

Senator Claire McCaskill today took aim at weight-loss diet scams that she said represent "a crisis in consumer protection"-using a hearing in the Consumer Protection panel that she leads to pose tough questions to popular TV host Dr. Mehmet Oz on his frequent claims about "miracle" products, explore options for regulators and industry to crack down on deceptive practices, and urge media outlets to strengthen screening of false advertising.

Tuesday, June 17, 2014

Fibromyalgia: Maligned, Misunderstood and (Finally) Treatable

Better still for fibromyalgia sufferers is that it's now relatively treatable. Several neurotransmitter-modulating drugs and drug classes appear to be effective, including some pain medications and antidepressants. Among these, three treatments are now FDA-approved. Possibly more effective, according to the current evidence, are exercise, cognitive-behavioral therapy — a form of psychotherapy based in altering negative thoughts and behaviors — and simply patient education. Clauw stresses that while medications can help alleviate symptoms, patients rarely see significant symptom improvement without also adopting self-management approaches like stress reduction, quality sleep and exercise.

Immune Activity Different in Gulf War Illness and CFS


Systems Biomedicine • Volume 1 • Issue 3
Succumbing to the laws of attraction: Exploring the sometimes
pathogenic versatility of discrete immune logic
Paul Fritsch, Travis JA Craddock, Ryan M del Rosario, Mark A Rice,
AnneLiese Smylie, Virginia A Folcik, Gerda de Vries, Mary Ann
Fletcher, Nancy G Klimas, Gordon Broderick

Feedback mechanisms throughout the immune and endocrine systems play a
significant role in maintaining physiological homeostasis.
Specifically, the hypothalamic-pituitary-adrenal (HPA) and
hypothalamic-pituitary-gonadal (HPG) axes contribute important
oversight of immune activity and homeostatic regulation. We propose
that these components form an overarching regulatory system capable of
supporting multiple homeostatic regimes. These emerge as a result of
the extensive feedback mechanisms involving cytokine and hormone
signaling. Here we explore the possible role of such alternate
regulatory programs in perpetuating chronic immune and endocrine
dysfunction in males. To do this we represent documented interactions
within and between components of the male HPA-HPG-immune system as a
set of discrete logic circuits. Analysis of these regulatory circuits
indicated that even in the absence of external perturbations this
model HPA-HPG-immune network supported three distinct and stable
homeostatic regimes. To investigate the relevance of these predicted
homeostatic regimes, we compared them to experimental data from male
subjects with Gulf War illness (GWI) and chronic fatigue syndrome
(CFS), two complex chronic conditions presenting with endocrine and
immune dysregulation. Results indicated that molecular profiles observed experimentally in male GWI and CFS were both distinct from the normal resting state. Profile alignments suggests that regulatory
circuitry is largely intact in male GWI and that the persistent immune
dysfunction in this illness may at least in part be facilitated by the
body's own homeostatic drive. Conversely the profile for male CFS was distant from all three stable states suggesting the continued influence of an exogenous agent or lasting changes to the regulatory circuitry such as epigenetic alterations.

HHS request for info on Diagnosis and Treatment of ME/CFS

[Federal Register Volume 79, Number 116 (Tuesday, June 17, 2014)]
[Pages 34538-34539]
From the Federal Register Online via the Government Printing Office
[FR Doc No: 2014-14084]



Agency for Healthcare Research and Quality

Scientific Information Request on Diagnosis and Treatment of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

AGENCY: Agency for Healthcare Research and Quality (AHRQ), HHS.

ACTION: Request for scientific information submissions.


SUMMARY: The Agency for Healthcare Research and Quality (AHRQ) is
seeking scientific information submissions from the public. Scientific
information is being solicited to inform our review of Diagnosis and
Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(ME/CFS), which is currently being conducted by the Evidence-based
Practice Centers for the AHRQ Effective Health Care Program. Access to
published and unpublished pertinent scientific information will
improve the quality of this review. AHRQ is conducting this systematic
review pursuant to Section 1013 of the Medicare Prescription Drug,
Improvement, and Modernization Act of 2003, Public Law 108-173, and
Section 902(a) of the Public Health Service Act, 42 U.S.C. 299a(a).

DATES: Submission Deadline on or before July 17, 2014.

ADDRESSES: Online submissions:
Please select the study for which you are submitting information from
the list to upload your documents. Email submissions:">

Print Submissions

Mailing Address: Portland VA Research Foundation, Scientific Resource
Center, ATTN: Scientific Information Packet Coordinator, PO Box 69539,
Portland, OR 97239.
Shipping Address (FedEx, UPS, etc.): Portland VA Research Foundation,
Scientific Resource Center, ATTN: Scientific Information Packet
Coordinator, 3710 SW U.S. Veterans Hospital Road, Mail Code: R&D 71,
Portland, OR 97239.

FOR FURTHER INFORMATION CONTACT: Ryan McKenna, Telephone: 503-220-8262
ext. 58653 or Email:">

SUPPLEMENTARY INFORMATION: The Agency for Healthcare Research and
Quality has commissioned the Effective Health Care (EHC) Program
Evidence-based Practice Centers to complete a review of the evidence
for Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome (ME/CFS).

   The EHC Program is dedicated to identifying as many studies as
possible that are relevant to the questions for each of its reviews.
In order to do so, we are supplementing the usual manual and
electronic database searches of the literature by requesting
information from the public (e.g., details of studies conducted). We
are looking for studies that report on Diagnosis and Treatment of
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), including
those that describe adverse events. The entire research protocol,
including the key questions, is also available online at:

   This notice is to notify the public that the EHC program would find
the following information on Diagnosis and Treatment of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

-   A list of completed studies your company has sponsored for this
indication. In the list, indicate whether results are available on
[[Page 34539]] along with the
trial number.

-   For completed studies that do not have results on, a summary, including the following elements: Study
number, study period, design, methodology, indication and diagnosis,
proper use instructions, inclusion and exclusion criteria, primary and
secondary outcomes, baseline characteristics, number of patients
screened/eligible/enrolled/lost to follow-up/withdrawn/analyzed,
effectiveness/efficacy, and safety results.

-   A list of ongoing studies your company has sponsored for this
indication. In the list, please provide the trial
number or, if the trial is not registered, the protocol for the study
including a study number, the study period, design, methodology,
indication and diagnosis, proper use instructions, inclusion and
exclusion criteria, and primary and secondary outcomes.

-   Description of whether the above studies constitute ALL Phase II
and above clinical trials sponsored by your company for this
indication and an index outlining the relevant information in each
submitted file.

   Your contribution is very beneficial to the Program. The contents
of all submissions will be made available to the public upon request.
Materials submitted must be publicly available or can be made public.
Materials that are considered confidential; marketing materials; study
types not included in the review; or information on indications not
included in the review cannot be used by the Effective Health Care
Program. This is a voluntary request for information, and all costs
for complying with this request must be borne by the submitter.

   The draft of this review will be posted on AHRQ's EHC program Web
site and available for public comment for a period of 4 weeks. If you
would like to be notified when the draft is posted, please sign up for
the email list at:

   The systematic review will answer the following questions. This
information is provided as background. AHRQ is not requesting that the
public provide answers to these questions. The entire research
protocol, is also available online at:

Key Questions (KQs)

   1. What methods are available to clinicians to diagnose ME/CFS and
how do the use of these methods vary by patient subgroups?
   A. What are widely accepted diagnostic methods and what conditions
are required to be ruled out or excluded before assigning a diagnosis
of ME/CFS?
   B. What is the accuracy and concordance of diagnostic methods?
   C. What harms are associated with diagnosing ME/CFS?
   2. What are the (a) benefits and (b) harms of therapeutic
interventions for patients with ME/CFS and how do they vary by patient
   A. What are the characteristics of responders and non-responders to

PICOTS (Population, Intervention, Comparator(s), Outcomes, Timing, Setting)


   1. Include:

A. For KQ 1: Symptomatic adults (aged 18 years or older) with fatigue
B. For KQ 2: Adults aged 18 years or older, with ME/CFS, without other
underlying diagnosis

   2. Exclude:

A. Children and adolescents
B. Patients with other underlying diagnosis


   1. Include:

A. For KQ1: Case definitions: e.g., Fukada/CDC, Canadian,
International and others
For KQ2: symptom-based medication management (immune modulators, beta
blockers, antidepressants, anxiolytics, stimulants), forms of
counseling and behavior therapy, graded exercise programs,
complementary and alternative medicine (acupuncture, relaxation,
massage, or other), and transcutaneous electrical nerve stimulation.


   1. Include:

A. For KQ1: Diagnostic accuracy studies and diagnostic concordance
studies with comparators
B. For KQ2: Placebo or no treatment/usual care, other active
interventions (including combination therapies and head-to-head


  1. Include:

A. For KQ1: Sensitivity, specificity, positive predictive value,
negative predictive value, positive likelihood ratio, negative
likelihood ratio, C statistic (AUROC), net reclassification index;
concordance, any potential harm from diagnosis (such as psychological
harms, labeling, risk from diagnostic test, misdiagnosis, other)
B. For KQ2: Overall function (i.e., 36-item Short Form Survey
[SF-36]), quality of life, days spent at work/school, proportion
working full or part time, fatigue (Multidimensional Fatigue Inventory
[MFI] or similar), adverse effects of interventions, withdrawals and
withdrawals due to adverse events, rates of adverse events due to


  1. Include: 12 weeks or longer


  1. Include: Clinical settings

   Dated: June 3, 2014.
Richard Kronick,
AHRQ Director. [FR Doc. 2014-14084 Filed 6-16-14; 8:45 am]

Sunday, June 15, 2014

Medical ignorance and CFS

Edward Hadas' recent article in Reuters points to "medical ignorance" in CFS. "Why isn't the healthcare industry – the delivery system, the research complex and the profit-seekers – more interested?," he asks. The answer is "dogma."

Read the article "Market failure can be sign of fatigue" here 





Simmaron Research Foundation Study Targeting Roots of Immune System


Twenty years ago  the internationally known virus hunter, Dr. Ian Lipkin of Columbia University, didn't find Borna Virus in people with ME/CFS, but he never forgot the immune dysfunction he found.  Twenty years later he found more immune dysfunction in another study.

He doesn't know why it's there but he does believe that all ME/CFS cases – no matter what pathogen or other factor has triggered them –  devolve to a 'common pathway'. The fact that pathogens of all types – from Epstein-Barr Virus, to SARS, to Giardia – can trigger ME/CFS suggests a core immune deficiency lies at the heart of the illness.

- See more at: