Friday, January 4, 2013

Voters 'brainwashed by Tory welfare myths', shows new poll

 the public is being fed "myths" about those who rely on benefits
 people who know least about the facts are the most hostile towards claimants. More than half of those who are "least accurate" about the system think benefits are too generous, while fewer than one in three (31 per cent) of those giving the "most accurate" answers agree.

Frances O'Grady, the TUC General Secretary, said: "It is not surprising that voters want to get tough on welfare. They think the system is much more generous than it is in reality, is riddled with fraud and is heavily skewed towards helping the unemployed, who they think are far more likely to stay on the dole than is actually the case. Indeed if what the average voter thinks was true, I'd want tough action too.

"But you should not conduct policy, particularly when it hits some of the most vulnerable people in society, on the basis of prejudice and ignorance. And it is plainly immoral to spread such prejudice purely for party gain, as ministers and their advisers are doing, by deliberately misleading people about the value of benefits and who gets them."

* * *

It's the same in the US.  Imagine the shock of people who think you can live high on the hog with Disability learning that the average monthly payment is around $1000 -- significantly less than you'd get from a minimum wage job.  I live in a high cost-of-living state; when I first got sick in 1987, one of my co-workers had just been out on Disability for maternity leave and was getting around $400 a month.  I was paying $400 a month to rent a no-frills one-bedroom apartment.  If I went on Disability, I'd have no money to pay for utilities or food or medical care.

Yes, I know someone on Disability who took her kid to Disneyland.  Her mother paid for the travel and a friend who works there got her free tickets.  That changes the equation substantially, doesn't it?

I know someone else on Disability who has travelled to Europe.  Her husband's paycheck covered the costs, not her SSDI benefits.

For most people, SSDI barely keeps body and soul together.  There's very little incentive for fraud, because the payments leave you below poverty level.  Many people I know on SSDI regularly go without meals because they can't afford enough food for the month.  You'd have to be seriously lazy to scrape by on SSDI instead of a minimum wage sit-down job like receptionist.  Only if you have well-off parents or a spouse with a good-paying job are you going to make ends meet by "choosing" to go on Disability. 

Prevailing in the Face of ME/CFS - Three Ways to Respond to Illness

Until We Have a Cure: What CFS Patients Want Well People to Know

Good reading for those you deal with who won't listen to you, but may listen to an article

Thursday, January 3, 2013

Is your hospital hurting you? -

"The culture of health care needs to change. Medical mistakes cause too many needless harm or deaths, yet few people see the problem in this context because we rarely have an open and honest conversation about the quality of health care in America. When we do, it is often behind closed doors. This is a challenge that a new generation of doctors is working to change through initiatives ranging from more transparent bedside care to public reporting of hospital performance."
"A Harvard study published in the New England Journal of Medicine reported an alarming fact: 18% of patients were actually harmed by medical care. The Congressional Budget Office estimates that up to 30% of health care procedures, tests and other services do not improve health outcomes."
* * *
For years, we've been seeing statistics that iatrogenic harm is the third- or fourth-leading cause of death in the US.  The other day, I saw a new statistic boosting doctors to second place.

Wednesday, January 2, 2013

Ange's blog: New years honours? This one's a head-scratcher...

Simon Wessely: more sinning than sinned against | Indigo Jo Blogs

"Nobody ever asks him about patients who are severely affected and who have very clearly measurable pathologies which cannot possibly be matters of mere behaviour or of psychiatric origin."

Monday, December 31, 2012

Ampligen Petition

The FDA is deciding over a New Drug Application for the drug Ampligen for
CFS. Ampligen is the only drug up for approval in the foreseeable future.

On Dec 20 an Advisory Committee voted with 8 votes NO and with 5 votes YES
against a recommendation for approval for Ampligen. The FDA can override
the recommendation of the committee, but it is rare.

A petition to the FDA is currently being circulated: http://www.ipetitions

Additional information can be found here:

Sunday, December 30, 2012

Specificity about bad reactions to GET

I sometimes come across people who have difficulty believing anyone
has ever suffered significant or long-term problems from a Graded
Activity Therapy (GAT) or Graded Exercise Therapy (GET) program.

And, indeed, although surveys mention numbers, they have generally not
included extra individual details. I think more examples need to be

I included a few in:
Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy
and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111.
Free at: i.e.
(and could have included some more from the same source)

Here are a few Jane Colby @JaneCColby posted on Twitter on Dec 27,
2012. Jane has been running the UK-based charity, The Young ME
Sufferers Trust (Tymes Trust) for over a decade:

- "Consultant paediatrician referred 2 severely ill kids to 'expert'
who set graded activity program. Children so ill he said it was a

- "A doctor in the North prescribed GET for a girl who became so weak
she had to be tube-fed for many years. He apologised. #CFSME#neuroME"

- "A doctor (now retired) used an exercise bike for a child with ME.
He apologised when, to his consternation, she became very ill as a
result." (third one needs more details)

Tom (@TomKindlon)
* * *
I can add my own.  Several years ago, I was feeling enough better to take on the doctor's challenge to take a walk every day.  Each day, I walked the same distance, from my house to the nearby Safeway, picked up something for lunch, and walked home.  Each day, I collapsed for even longer after this short walk, until the end of the first week when I couldn't get out of bed without crumpling to the floor. 
Since the doctor had not been inclined to believe my assertions based on experience that exercise makes me worse, this time I took very good contemporaneous notes of how long I had to rest before I could get to the kitchen to eat what I'd bought for lunch, which symptoms got worse, etc., to prove that I wasn't mis-remembering, exaggerating based on mistaken memory, etc.

“2013 will be a year of optimism, opportunity and HOPE” | X Rx Blog

Update on Dr. Judy