Friday, January 28, 2011

Mortality in Fibromyalgia

Note: In some areas, the assumption is that if a disease doesn't kill
you directly it isn't important. Medicine's failure to adequately and
safely address, define and determine the etiology of severe pain and
other organic issues coupled with a lack of hope for patients could
easily be blamed for suicide rates in fibromyalgia, which were shown
by the study below to be similar for patients with osteoarthritis. As
with AIDS, it isn't the virus that actually kills the patient, it is
the associated variables and diseases.

Fibromyalgia: What's Killing Us?
Wednesday January 26, 2011

Newly published research shows that fibromyalgia does not cause
premature death.  However, the illness does raise the risk of suicide
and accidental death.

Researchers followed a group of nearly 8,200 fibromyalgia patients and
more than 10,000 osteoarthritis patients for 35 years.  They say the
death rate was nearly the same between these two groups.

Earlier research has also shown the higher rate of suicide.  Given the
high rate of depression, strain on marriage and other relationships,
and the difficulties of treating fibromyalgia, that's sadly to be

The higher rate of accidental death may seem odd, but it does make
sense in light of certain fibromyalgia symptoms.  We tend to be
clumsy, and our cognitive dysfunction (fibro fog) may make it
dangerous for us to drive.  Also, accidental overdose can happen due
to forgetfulness, desperation or both.

The take-aways from this study include:

We don't need to worry about early death as a result of fibromyalgia
(at least, not directly);
We do need to find help for depression and suicidal thoughts;
We need to be careful and pay attention to our physical and mental
capabilities at that moment so we don't put ourselves in danger.

Mortality in fibromyalgia: A study of 8,186 patients over thirty-five years
Frederick Wolfe1,*, Afton L. Hassett2,†, Brian Walitt3, Kaleb Michaud4

To determine if mortality is increased among patients diagnosed as
having fibromyalgia.

We studied 8,186 fibromyalgia patients seen between 1974 and 2009 in 3
settings: all fibromyalgia patients in a clinical practice, patients
participating in the US National Data Bank for Rheumatic Diseases
(NDB), and patients invited to participate in the NDB who refused
participation. Internal controls included 10,087 patients with
osteoarthritis. Deaths were determined by multiple source
communication, and all patients were also screened in the US National
Death Index (NDI). We calculated standardized mortality ratios (SMRs)
based on age- and sex-stratified US population data, after adjustment
for NDI nonresponse.

There were 539 deaths, and the overall SMR was 0.90 (95% confidence
interval [95% CI] 0.61–1.26). Among 1,665 clinic patients, the SMR was
0.92 (95% CI 0.81–1.05). Sensitivity analyses varying the rate of NDI
nonidentification did not alter the nonassociation. Adjusted for age
and sex, the hazard ratio for fibromyalgia compared with
osteoarthritis was 1.05 (95% CI 0.94–1.17). The standardized mortality
odds ratio (OR) compared with the US general population was increased
for suicide (OR 3.31, 95% CI 2.15–5.11) and for accidental deaths (OR
1.45, 95% CI 1.02– 2.06), but not for malignancy.

Mortality does not appear to be increased in patients diagnosed with
fibromyalgia, but the risk of death from suicide and accidents was

Thursday, January 27, 2011

Quote of the Week

Oprah is talking to the family of a disabled veteran.  His wife says "I'm angry for the people who have walked away from us."
While we hear this often in the CFS community, we tend to think that it's because CFS is a controversial illness and they don't believe us.  Hearing it in this context tells us that it's because healthy people can't cope with disability -- IT'S NOT YOU!!!!  And it's not because they don't believe you're really sick.
The failing is on THEIR part.  They don't have the emotional wherewithal to see a friend disabled.  They don't realize how much you need friends in your time of need.  They can't step outside themselves enough to do something for someone else. 
That was a big one for me.  So many of my "friends" were only willing to be my friends while I was doing things for them.  But when the tables turned and I was the one who needed help, they ran away.  Stopped returning calls.  Avoided me entirely so they would not hear a request for a little of their time to do the things I couldn't.  My income was zero, yet one said she'd only help me if I paid her $15/hour, which, granted, was less than the $20/hour I'd been quoted by a cleaning service, but still was money that I didn't have; she just didn't get it.
But I found new friends.  The people in support group may not be able to do my housework, either, but they're there with emotional support.  Marlene Dietrich said "it's the friends you can call at 4 AM who really matter" and there's not a one of my fellow patients who would cuss me out for calling at 4 AM, because they know what it's like to be in that place in the middle of the night. 
Since I'm now home 24/7, spending a lot of time on the computer, making e-friends, I have people in my life who actually ARE awake at 4 AM my time -- which is afternoon in Europe and evening in Australia -- people who don't mind IM-ing with me in the middle of my night.  And if I really need to hear a human voice, I can send out an e-mail pinging a group of friends and see who responds "I'm awake".

According to Dr. Deckoff-Jones' blog

475 days, 16 hours, 56 minutes have passed since the Science paper was
published ... and there's still no solution to XMRV.

They had a treatment for SARS in 8 days. Why could they fix that virus in
a week, and in over a year still haven't even agreed that this one really

Gluten-free and well-fed

Fact Checking Rep. Bachmann's "Tea Party Response" To The State Of the Union

Scroll down to the information on Health Care Reform

Assignment of Drugs to treat CFS

On Jan. 26, the FDA's Office of New Drugs announced that all new applications for CFS treatments will be assigned to the Division of Pulmonary, Allergy and Rheumatology Products. This decision may help streamline review of products that were previously scattered to six different revew divisions. Here's the FDA announcement:

Wednesday, January 26, 2011

Why ME/CFS? (Thanks, Mary!)

To clarify a few things:

ME/CFS is the name used in the Canadian Consensus Criteria, so it does have a formal usage.

The name was chosen in 2003 to reflect the placement of both ME and CFS in ICD-10 under the chapter on neurology at G93.3.  Many patient advocates believe the Canadian Consensus Critera represents the best current definition in use.

In the US, myalgic encephalomyelitis was never used.  When British researchers began using M.E., the US instead used Epidemic Neuromyesthenia.  However, Alex Shelekov, the national expert on epidemic neuromyesthenia, sided with those at the 1988 Holmes meeting who said the cluster outbreaks were M.E.  That was not even included in a footnote, but in a companion article the same year, the late Stephen Straus wrote that CFS was also once known as epidemic neuromyesthenia and, without using the term M.E., nevertheless referenced the two McAvedy and Beard articles suggesting M.E. was really mass hysteria, using them to lend authority to his assertion that researchers knew CFS patients actually had mental problems.

To introduce the term ME to the US medical establishment, many advocates - dating back to the late 1990s - had suggested the use of ME/CFS and ultimately dropping the CFS part.  I suggested it myself when presenting at a special name change session on the AACFS program in 1998, but I was not the only one.

In 1998 CDC removed 323.9, the designation for M.E., from ICD-9-CM.  Doctors in the U.S. have to use those codes for insurance reimbursement, so that was tantamount to rendering the disease nonexistent.  As it was, most doctors in the US refused to give that diagnosis when asked.  Now it required a second diagnosis for reimbursement.

After patients began clamoring for the adoption of the Canadian Consensus Criteria that linked M.E. and CFS, CDC added a statement to ONE of their websites to the effect that the two were not the same thing.  I thought at the time it was not a recognition of M.E. (because you will find nothing on M.E. anywhere else at CDC), but an effort to negate the movement to adopt the Canadian Criteria.  

Personally, I was surprised and delighted that the CFSAC recommended the use of the term ME/CFS because it would place CFS in G93.3 in ICD-10-CM, which is still not scheduled for adoption until at least 2013.  The rest of the world is looking on to ICD-11, but the US is still on ICD-9.

The CFSAC is an advisory committee to the Secretary of Health and Human Services, who oversees both CDC and NIH.  It is well within their purview to recommend the use of ME/CFS, and well within the purview of NIH to follow that recommendation in an exploratory workshop on the state of the knowledge, for now.

Finally, while I fully appreciate why patients in nations that have a history of M.E. would like to get rid of CFS entirely and not see it paired with M.E., please understand that doing so in the US means that CFS, the only name used in the vast majority of the medical establishment in the US (who never heard of M.E.), will be placed in R53 under "vague signs and symptoms" - not G93.3, in neurology, in ICD-10-CM.

Mary Schweitzer

CFIDS Assn webcast Feb 22

The NIH will host a webcast about CFS on Feb. 22 at 4PM (Eastern) as part of its "Demystifying Medicine" series. Drs. Shyh-Ching Lo (FDA), Harvey Alter (NIH) and Fred Gill (NIDDK) will discuss "CFS: Is There A Virus?" No advance registration required. More info at

Tuesday, January 25, 2011

Cognitive defects in CFS patients

Send an Email for free membership
  >>>>> Help ME Circle <<<<
>>>>     26 January 2011      <<<<
Editorship :


Clin Neurol Neurosurg. 2011 Jan 19. [Epub ahead of

Cognitive deficits in patients
with chronic fatigue syndrome
compared to those with major
depressive disorder and healthy

Constant EL, Adam S, Gillain B, Lambert M,
Masquelier E, Seron X.

Department of Psychiatry, Université Catholique de
Louvain, 1200 Brussels, Belgium



Chronic fatigue syndrome (CFS) patients report
usually cognitive complaints. They also have
frequently comorbid depression that can be
considered a possible explanation for their cognitive

We evaluated the cognitive performance of patients
with CFS in comparison with a control group of
healthy volunteers and a group of patients with MDD.


Twenty-five patients with CFS, 25 patients with
major depressive disorder (MDD), and 25 healthy
control subjects were given standardized tests of
attention, working memory, and verbal and visual
episodic memory, and were also tested for effects
related to lack of effort/simulation, suggestibility,
and fatigue.


Patients with CFS had slower phasic alertness, and
also had impaired working, visual and verbal episodic
memory compared to controls.

They were, however, no more sensitive than the
other groups to suggestibility or to fatigue induced
during the cognitive session.

Cognitive impairments in MDD patients were strongly
associated with depression and subjective fatigue; in
patients with CFS, there was a weaker correlation
between cognition and depression (and no
correlation with fatigue).


This study confirms the presence of an objective
impairment in attention and memory in patients
with CFS but with good mobilization of effort and
without exaggerated suggestibility.

Copyright © 2011 Elsevier B.V. All rights reserved.

PMID: 21255911 [PubMed - as supplied by publisher]

International Living -- Health care

Is good quality and affordable healthcare an important consideration in your move overseas? If so, read this new article

A Fighting Spirit Won’t Save Your Life -

But there's no evidence to back up the idea that an upbeat attitude can prevent any illness or help someone recover from one more readily. On the contrary, a recently completed study of nearly 60,000 people in Finland and Sweden who were followed for almost 30 years found no significant association...
The incessant pressure to be positive imposes an enormous burden on patients whose course of treatment doesn't go as planned.
It is difficult enough to be injured or gravely ill. To add to this the burden of guilt over a supposed failure to have the right attitude toward one's illness is unconscionable. Linking health to personal virtue and vice not only is bad science, it's bad medicine.
* * *
I can't even count how many times I've been told that my symptoms are worse because I'm dwelling on them.  No, I can only think about my symptoms because that's how overwhelming they are -- I'd love to watch TV or read a book, but I can't concentrate because I'm in so much pain or have slept so little that my brain isn't functioning.

Insurance fraud and social media: Insurers are scouring social media

Be careful what you put out there, folks.....

CBS/NYT Poll: Support for Repeal of Health Care Provisions Nearly Non-Existent

CBS/NYT Poll: Support for Repeal of Health Care Provisions Nearly Non-existent | AlterNet 
The NYT/CBS poll then asked the pro-repeal camp whether they want to "repeal all of the health care law, or only certain parts of it." Suddenly the number who favor full repeal drops to 20 percent -- one-fifth -- while 18 percent peel off and say they want to repeal "certain parts." ... Hell, a full 14% were supposedly in favor of repeal but couldn't name even a single provision they disliked."

Monday, January 24, 2011

A new blog from The Patient's Voice

Dear Friends

I would like to welcome you to the latest blog from The Patients Voice.  With the rise of social media utilities such as UK and the BBC's iPlayer watching video clips and TV programs on the web has become very common.

Indeed there are now specialist sites such as which provide people with access to specialist medical and healthcare information and education. As well as this video blogs are produced and watched by patients and caregivers across the globe.

The marriage of TV and the web looks a very powerful medium for patients and healthcare providers to communicate with each other. The Patients Voice is interested in finding out a bit more about what you think about this new trend and its value to patients.

To visit the blog please go to

Blogs are a wonderful way for people to connect with each other.   This is a great opportunity for you to share with other members and enrich all our knowledge.  Do feel free to add any sources of information which you think will be of interest.

Feel free to share this blog with anyone you know might be interested.

If you have any suggestions for future blogs or please do let us know.

Best wishes


Belinda Shale

The Patients Voice

Sunday, January 23, 2011

Make anti-vaccine parents pay higher premiums -

"Evidence disputing any link between autism and vaccines has been gathering for a decade. The anti-vaccine movement's lynchpin, Dr. Andrew Wakefield, has been shown to be nothing more than a grifter in a lab coat, with the prestigious British Medical Journal calling his work "an elaborate fraud."

"Two new books, "Deadly Choices" by Paul Offit and "The Panic Virus" by Seth Mnookin, detail the sordid story of the anti-vaccine movement.

"Given that, it's hard for me to believe that some parents still refuse to vaccinate their children."

* * *

Moreover, if your kids aren't vaccinated, they can die of preventable diseases, or be paralyzed from polio.  I cannot understand the thinking of parents who apparently would rather have a child die a painful death from whooping cough than a live child with autism.  Since the growth of the anti-vaccine movement locally, we've had a number of deaths from whooping cough ... made worse by the fact that this generation of doctors had never seen whooping cough and didn't even know what they were seeing till an elderly doctor identified it.

"Forty-eight children too young to be vaccinated had to be quarantined, at an average family cost of $775 per child. The total cost of the outbreak was $124,517, about $11,000 per case and substantially more for the hospitalized child. That was just in the money the county and state spent to clean the mess up, and doesn't take into the account the costs to private insurers." 

I once worked with someone who'd had a transplant and was therefore immuno-compromised.  Every year at the beginning of flu season, the boss would give a lecture on staying home when you're sick, concluding with the threat that anyone who brought flu germs into the office would be charged for the sick days taken by the rest of the office as a result (which might include Ms. D spending a month in the hospital).  Whether that threat was legal or not, it made a point -- one person can lose $100 pay by staying home for a day, or the firm can lose thousands in productivity.

Understanding Invisible Illnesses: Call to Action: Pics for Project

Submit your photos by January 30

Rheumatoid Arthritis Diet Tips --

Concerns over proposed new category in DSM-V

As a psychologist, I am most concerned about the introduction of the new category to cover medically unexplained symptoms.  It is not possible to submit a comment to the APA at this stage which undermines the scientific process and is likely to lead to errors.    

From a purely psychological perspective, there are a number of issues with Simple Somatic Symptom Disorder (SSSD).  The rationale is not theory based. It's practical (shorthand for, 'I don't now what's wrong with you and you seem a little too concerned that you might be physically ill so this label will cover it. You need to worry less as it will only make you feel worse. Goodbye'). In my view, the new label could have serious consequences, not only medical (inappropriate advice), but also financial (loss of benefits).  The older diagnosis of somatisation disorder was the term used  for medically unexplained symptoms where there was evidence that they  were a means of expressing emotional distress by those who were not willing to be assertive and verbally communicate their feelings to significant others. This was more common in paternalistic societies where women were discouraged from expressing their displeasure, and that includes  England prior to the 1960s. The rationale was therefore that the symptoms were a sign of distress and served a purpose (e.g. avoidance). Thorough assessment tended to alert the practitioner to the 'gains' associated with the symptoms and that was one reason to consider the diagnosis. The concept came from old Freudian ideas reflected in older diagnoses such as conversion hysteria. 

SSSD does not require evidence that the presence of the symptoms are primarily meant to justify avoidance in people unwilling or unable to express their anger etc  using words.  It's a new concept, it's about symptom counting and about value judgement.  It's the doctor who decides (after a 50 minute consult?) if the anxiety about the symptoms is out of proportion, i.e., it's subjective and therefore likely to be influenced by non-clinical factors such as gender and culture. We already know that communities who express themselves more colourfully, such as the Italians, are at increased risk of a psychiatric diagnosis than less expressive cultures. Likewsie, women are more vulnerable than men. How you use words will colour the professional's decision as much as the nature of the symptoms and the tests which have been done to rule out other conditions.

Which tests are ordered depends on the practitioner's  knowledge and the people working in the pathology department.  I was recently reminded of this when a consultant oral surgeon sent me off to have a blood test for Sjogren's Syndrome (SS).  Eight weeks later, it transpired that the lab had not done the tests.  Someone had decided that they were bound to be positive in a person like me. (No, I don't know what that means either.)  However, the oral surgeon wasn't informed nor was my GP. I therefore remain with toothache  in a diagnostic no-man's land.  If the results had turned out to be positive, I'd meet the criteria for Sjogren's syndrome.  If negative, I'd need a more invasive test to rule out SS.  A practitioner unfamiliar with the diagnostic criteria for SS and the importance of the blood tests might well consider SSSD or CSSD at this point. That would leave me  without  the appropriate treatment or advice and at risk of losing teeth, infection and lymphoma.  Chronic toothache causes stress, so the next doctor who sees me might, if I'm unlucky,  reverse  cause and effect, thus reinforcing the diagnosis of SSSD.   The primary gain would be limited to the money earned by the psychiatrist from the consult. The patient would be left with  primary and perhaps secondary losses.  If they were to take legal action to recoup the losses and win, the medical authorities would also lose. 

To summarise, I cannot see how the new category improves on the older labels used to denote the presence of medically unexplained symptoms plus anxiety which might undermine recovery. Indeed,  I'm at a loss to think of a single good reason meriting its inclusion in DSM-V. CSSD was poorly thought out and SSSD is worse. 

Psychological medicine has improved while I've been in practice, but not enough.


Ellen M. Goudsmit BA, MSc, PhD, C.Psychol. FBPsS