Saturday, June 18, 2011

9 Countries That Do It Better: Why Does Europe Take Better Care of

"When you plug what France pays per person for health care into our own government's fiscal projections, you get balanced budgets by around 2014, which then turn into surpluses after 2040."

Thursday, June 16, 2011

Asthma and Weight Gain


"Most people know about the usual weight gain suspects — eating too much unhealthy food or spending too much time on the couch, for instance. But people with asthma need to watch out for an additional factor — their medication. Weight gain is an unfortunate side effect of oral steroids, taken in pill or inhaler form to treat asthma."

* * *
Many anti-depressants cause weight gain, too.

I gained weight while the idiots at my local medical group insisted that all I needed was antidepressants.  I lost most of it while I was in the sleeping pill clinical trial.  What took me a year to lose all came back within the first 3 months of being back on psychotropic meds that were supposed to (but didn't) help me sleep -- my exercise level actually increased because I was no longer passing out when I stood up, so you can stop blaming anything except side effects of the pills.  And then I continued to gain another 20 pounds after that, until I finally stopped taking those meds.

But most doctors (thankfully not mine) don't make the connection between drug side effects and weight gain and will bully you to do the impossible, to lose weight while taking drugs that make you gain weight.

Know the side effects of what you're on, and don't be afraid to stand up to a doctor who tells you to lose weight while you're taking those pills.


Tuesday, June 14, 2011 - Change Online Shopping for Good

Select WPI as your charity of choice, and a portion of all purchases made via iGive will go to them.  OK, today's shopping spree only got them $1, but it was $1 they didn't have yesterday. 
If all 1 million CFS patients in the country were to spend enough to earn WPI $1 per month, that would be $12 million per year -- twice the research funds we've gotten from the government in our best year! (the online arm of Rite Aid) pays 4%, so mail order a single prescription for monthly delivery, and you've earned that $1 for WPI, and saved yourself a trip to the pharmacy.
Peapod and Safeway groceries are also on the list, for those of you who order groceries online.  Peruse the list and see how many places you can spend your money to help WPI.

Ampligen in SF

Public service announcement:  People interested in being treated with the experimental ME/CFS drug Ampligen in the San Francisco Bay area and can afford the circa $2,500 a month that the drug and infusions will cost, please contact: [email protected]

Monday, June 13, 2011

Adult-Onset Allergies

What to Say to Someone Who’s Sick - This Life -


First, the Nevers.

1. WHAT CAN I DO TO HELP? Most patients I know grow to hate this ubiquitous, if heartfelt question because it puts the burden back on them. As Doug Ulman, the chief executive of Livestrong and a three-time cancer survivor, explained: "The patient is never going to tell you. They don't want to feel vulnerable." Instead, just do something for the patient. And the more mundane the better, because those are the tasks that add up. Want to be really helpful? Clean out my fridge, replace my light bulbs, unpot my dead plants, change my oil.

2. MY THOUGHTS AND PRAYERS ARE WITH YOU. In my experience, some people think about you, which is nice. Others pray for you, which is equally comforting. But the majority of people who say they're sending "thoughts and prayers" are just falling back on a mindless cliché. It's time to retire this hackneyed expression to the final resting place of platitudes, alongside "I'm stepping down to spend more time with my family," or "It's not you, it's me."

* * *

#2 is my personal pet peeve.  You're going to spend 15 seconds praying, when what I really need is someone to spend an hour actually doing something hands-on.  Don't just pray for someone to bring me dinner ... get off your butt and do it yourself!  (Of course, for friends and relatives halfway around the globe, and for my fellow bedbound patients, I understand that praying is all you can do.)  But the ex-friend right here in town who could only ever be bothered to spend a few seconds saying "God help her", needs for God to yell at her "don't ask me, YOU do it."


Mitochondrial Dysfunction in ME/CFS

Can Work Damage Your Health?

Dear Friends,

Can work damage your health?

The Patient Experience has just launched a new blog on work and health.  It is guest blog which features and interview with Nick Kemsley,Co-Director of the Centre for HR Excellence, Henley Business School to gives his views on the effects of the work place on people's health!

It would be great to have your comments and thoughts about the issues involved and perhaps tell your story about how work has impacted on your heath!

To visit the blog please go to

Blogs are a wonderful way for our members 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

Do Before Wednesday!

May be reposted

From Suzy Chapman for

13 June 2011

"So basically, they're dumping some little-used, contentious and unpopular categories in a big bucket and stirring them up. The resulting mud could well end up sticking to us!"

If you only do two things online this week make it these:

1] Register to submit feedback via the DSM-5 Development website, here, and submit a letter of concern - however brief:

2] If you know an informed and sympathetic clinician, allied health professional, lawyer, educator or social worker, contact them today and urge them to review these criteria and to submit a response as a concerned professional, or ask your state ME/CFS organization to submit a response.

The closing date for comments in the second DSM-5 public review is Wednesday, June 15.

How many subscribers are there to this Co-Cure mailing list?

A couple of thousand?

And there are over 4,500 members of Phoenix Rising Forums. These usually very active forums are currently offline.  Please use the time and energy you might have spent on Phoenix Rising to submit a comment.

We have the potential for several thousand more responses over the next three days.

OK, the APA issued no prior announcement of its intention to bring forward this second public review of draft criteria and so patient groups could not be alerted in advance. But alerts went out on May 5, the day after the latest criteria were posted on the DSM-5 Development site.

Nevertheless, many international patient organizations have been slow off the mark and some have been lukewarm about the need to submit, this year, or to submit, at all.

I've been banging on about the implications for these proposals for ME and CFS patients for two years, now, but where are the responses from our international patient organizations to these latest proposals? 

Over two years ago, on May 13, 2009, I first reported on Co-Cure that the conceptual framework the DSM-5 Work Group for "Somatic Symptom Disorders" were proposing would:

"...allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome." [1]

("Somatic" means "bodily" or "of the body".)

The most recent version of the "Disorders description" document states:

"This group of disorders is characterized predominantly by somatic symptoms or concerns that are associated with significant distress and/or dysfunction...Such symptoms may be initiated, exacerbated or maintained by combinations of biological, psychological and social factors."

"These disorders typically present first in non-psychiatric settings and somatic symptom disorders can accompany diverse general medical as well as psychiatric diagnoses. Having somatic symptoms of unclear etiology is not in itself sufficient to make this diagnosis. Some patients, for instance with irritable bowel syndrome or fibromyalgia would not necessarily qualify for a somatic symptom disorder diagnosis. Conversely, having somatic symptoms of an established disorder (e.g. diabetes) does not exclude these diagnoses if the criteria are otherwise met."

"The symptoms may or may not be associated with a known medical condition. Symptoms may be specific (such as localized pain) or relatively non-specific (e.g. fatigue). The symptoms sometimes represent normal bodily sensations (e.g., orthostatic dizziness), or discomfort that does not generally signify serious disease." [2]

Psychiatric creep

The APA appears hell bent on colonising the entire medical field by licensing the potential application of a mental health diagnosis to all medical diseases and disorders, if the clinician decides that the patient's (or in the case of a child, a parent's) response to their bodily symptoms and concerns about their health are "excessive", or their perception of their level of disability "disproportionate", or their coping styles "maladaptive."

While the media has focussed on the implications for introducing new additions and broadening definitions of existing DSM diagnostic criteria, there has been no media scrutiny of these Work Group proposals nor recognition that this Work Group has been quietly redefining DSM's "Somatoform Disorders" categories with proposals that will have the potential for a bolt-on diagnosis of a "somatic symptom disorder" for all medical diseases, whether "established general medical conditions or disorders", like angina or diabetes, or conditions presenting with "somatic symptoms of unclear etiology."

Yet these radical proposals for renaming the "Somatoform Disorders" category "Somatic Symptom Disorders" and combining a number of existing, little-used categories under a new umbrella term, "Complex Somatic Symptom Disorder (CSSD)", and the more recently proposed "Simple Somatic Symptom Disorder (SSSD)", have the potential for bringing thousands more patients under a mental health banner and expanding markets for psychiatric services, antidepressants and behavioural therapies such as CBT, for the "modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors" for all patients with somatic symptoms, irrespective of cause.

Sitting ducks

CFS, ME, Fibromyalgia and IBS patients are likely to get caught by these proposals.

CFS and ME patients already diagnosed or waiting for a diagnosis (which might take months or years) would be especially vulnerable to the highly subjective criteria and difficult to measure concepts like "disproportionate distress and disability", "catastrophising", "health-related anxiety" and "[appraising] bodily symptoms as unduly threatening, harmful, or troublesome", this Work Group is proposing.

Other patient groups also bundled under the so-called "Functional somatic syndromes" and "medically unexplained" umbrellas, like Chemical Injury (CI), Chemical Sensitivity (CS), chronic Lyme disease and Gulf War Illness, would also be highly vulnerable to a CSSD label.

These proposals could potentially result in misdiagnosis of a mental health disorder, misapplication of an additional diagnosis of a mental health disorder, misapplication of "rehabilitation" therapies like GET or in iatrogenic disease.

Families would be at risk of wrongful accusation of "over-involvement" or "excessive" concern for a child's symptomatology or of encouraging "sick role behaviour" in a child or young person.

Application of these vague and highly subjective criteria may have considerable implications for the diagnoses assigned to patients, for the provision of social care, payment of employment, medical and disability insurance and the length of time for which insurers are prepared to pay out. 

The application of a diagnosis of CSSD may limit the types of treatment, medical investigations and testing that clinicians are prepared to consider and which insurers are prepared to fund.

International implications

This is not a US centric issue. The DSM is used to a varying extent in other countries in clinical settings. DSM criteria are currently used more often for research purposes than ICD-10 and the next edition will shape international research, influence literature in the fields of psychiatry and psychosomatics and inform perceptions of patients' medical needs throughout the world.

Please make use of these last three days to tell the APA why the SSD Work Group needs to rip up these proposals and start over again.


Proposed criteria are set out on the DSM-5 Development site here:

The CSSD criteria are here:

More information on registration and preparing submissions here:

For examples of last year's submissions, go here:

Copies of this year's submissions are being collated on my site, here:

If you are a patient organization, professional, patient, carer or advocate and have already submitted and would like a copy of your comment added to my site, please send a copy to [email protected]

Submissions published to date for this second public review:

ME Free For (UK);
The Young ME Sufferers Trust (UK);
Coalition4ME/CFS (US);

Angela Kennedy, sociology lecturer (UK);
Dr John L Whiting MD, (Australia);

Mary Barker (US);
Peter Kemp (UK);
Mary M. Schweitzer Ph.D., (US)


[1] "The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV - a preliminary report" was published in the June 2009 issue of the Journal of Psychosomatic Research. The journal is co-edited by DSM-5 Work Group members, Prof Francis Creed and Dr James Levenson. Full free text:

[2] There are two key PDF documents: "Disorders Descriptions" and "Rationale", which expand on the Work Group's proposals:

Suzy Chapman

[email protected]