Saturday, February 6, 2010

Guilty Until Proven innocent: Dealing with a Flawed SSDI Application Process

Repeating another oldie but goodie

Signatures for Letter to The Guardian

Letter to The Guardian - 3rd Draft with corrections and amendments
As mentioned previously we have 60 names and rising.
If anyone would like to add their names please contact
The Guardian is one of the top English language websites read globally so the insult to the ME community is also a global concern.  <>
Dear Mr Rusbridger,
I am writing to draw your attention to an issue that is causing a great deal of distress and anger to a population of sick and disabled people – presently an easy target for those who carry a prejudice against disabled people.
In recent months you have had a column on your website that goes under the title "Dr Crippen".
I understand that this "Dr Crippen" column is penned by an NHS doctor who uses "Dr Crippen" to both keep his anonymity, and also to give an airing to views that he knows will be insulting or hurtful to those whom he chooses to victimise.
For the last 10 years I have run an Internet discussion group called MEActionUK, to raise awareness and keep members up-to-date with the news, politics and scientific research surrounding myalgic encephalomyelitis (ME).
We were recently alerted to your "Dr Crippen" column as he has yet again used his space on your website to denigrate the ME community for the purposes of his own entertainment and presumably his presumption that his comments will also entertain your readers.
I am aware that you hold the true identity of "Dr Crippen". However, we the public can see that this deliberate false identity has been established so that this doctor can given out subjective, misleading or even wholly false information about anything he chooses, in this case myalgic encephalomyelitis, without any recourse should that information be demonstrably factually inaccurate.
We would like to know why the readers of the Guardian do not have the right to know who this doctor is who hides behind the title of "Dr Crippen".
Initially, you may argue that he should keep his anonymity. However, he is a registered and practicing NHS doctor speaking via your newspaper, giving your readers his "wisdom". So, the answer is actually, yes – the identity should be known, because this doctor is paid out of the public purse from us, as taxpayers, and he may well carry his views into his consulting room and for all we know he could be denigrating or mistreating his own patients based on the bigotry displayed on the "Dr Crippen" page.
It is apparent from "Dr Crippen's" own description of himself here that he in no way has a medical speciality such as a virologist or immunologist would have for example, and therefore "Dr Crippen" does not have the necessary qualifications to comment on subjects out of his area of expertise."
The doctor himself is responsible for the content of his column, and we believe that, certainly in relation to his repeated derogatory comments on ME, he is breaking the General Medical Council's code.
Source: Good Medical Practice: Duties of a doctor.
The duties of a doctor registered with the General Medical Council.  
'Never discriminate unfairly against patients or colleagues.'
'Keep your professional knowledge and skills up to date.'
'Protect and promote the health of patients and the public.'
'Treat patients politely and considerately.'
'Never abu [rest truncated by Mary's Blackberry but you can read it on the website.]


20 Key Figures sign letter in UK newspaper

Thanks to Mary for spotting this one!
Check THIS out!

'Breaking the ME enigma'
- 20 key figures sign letter in the Daily Telegraph today,
6 February 2010
Saturday, 06 February 2010 07:54    

A joint letter appealing to the nation to start taking ME seriously appears in The Daily Telegraph today. It is signed by 20 leading figures in the ME debate – including parliamentarians, clinicians, researchers and figures from the ME national organisations and patient support groups.

Breaking the ME enigma 


The death of Lynn Gilderdale and the humane verdict in the trial of her mother brought home to many people for the first time what a devastating illness myalgic encephalomyelitis (ME) can be.

Many of the estimated quarter of a million people with ME in Britain experience not only extreme pain and disability, but also incomprehension, ignorance, lack of sympathy and at times outright hostility, not only from the public but also from professionals responsible for their care. 

Such lack of understanding even extends to blaming parents for the severity of their child's illness. 

It is time the nation began to take ME seriously. Provision of adequate clinical and other services by properly informed and sympathetic professionals is currently subject to a postcode lottery. Such provision should avoid inappropriate treatments, and range from support for home tuition for school-age children to respite care for the severely affected. 

Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness. We should build on recent scientific advances to develop effective treatments, so that no one in future need experience the pain, isolation and despair that were Lynn Gilderdale's fate. 

Countess of Mar
Secretary, All Party Parliamentary Group on ME

Dr Neil Abbot Operations Director, ME Research UK

Jane Colby Executive Director, The Young ME Sufferers Trust

Anne Faulkner
Hon Director, CFS Research Foundation

Tanya Harrison
Chairman, BRAME

Malcolm Hooper
Emeritus Professor of Medicinal Chemistry, University of Sunderland

Andy Kerr MSP

Dr Jonathan Kerr
Consultant Senior Lecturer,
St George's, University of London

Simon Lawrence
Chairman, 25 per cent ME Group

Kathleen McCall
Chairman, Invest in ME

Dr Luis Nacul
Consultant in Public Health, London School of Hygiene and Tropical Medicine

Professor Derek Pheby
National ME/CFS Observatory

Neil Riley
Chairman, ME Association

Dr Charles Shepherd

Dr Nigel Speight

Sir Peter Spencer
Chief Executive Officer, Action for ME

Des Turner MP
Chairman, All Party Parliamentary Group on ME

Dr William Weir

Mary-Jane Willows
Chief Executive Officer, Association of Young People with ME

Andrew Stunell MP
Vice Chairman, All Party Parliamentary Group for ME/CFS

CDC reassigns controversial head of chronic fatigue research February 5, 2010

CDC reassigns controversial head of chronic fatigue research
February 5, 2010 --

The Atlanta-based CDC has reassigned its chief researcher into chronic
fatigue syndrome, a longtime target of scientific organizations and
patient advocacy groups around the country.

Researchers in Nevada last fall reported a strong correlation between
chronic fatigue syndrome and XMRV, a retrovirus related to the one
that causes AIDS. The potential breakthrough has excited the 1 million
or so Americans with CFS who are looking for treatment.

The CDC's research program, led by Dr. William C. Reeves, had no role
in that study, and Reeves was dismissive of its findings. Critics said
that was because the agency had wasted $100 million on looking for a possible psychological explanation for CFS and dismissing outside research that looked for a viral cause.

Finally, last fall, a CFS Advisory Committee called on Health and
Human Services Secretary Kathleen Sibelius to install "progressive
leadership" to direct CDC's efforts to find a cause and cure for the
disease. The panel did not identify Reeves as the obstacle, but
minutes show the committee had discussed whether to name him.

The International Association for Chronic Fatigue Syndrome, a
500-member group of medical professionals, has repeatedly challenged
CDC's focus and its new five-year plan for CFS research. Its
president, psychologist Fred Friedberg, testified in October:

"After 25 years (and over $100 million) of CDC research, chronic
fatigue syndrome remains a stigmatized illness without substantive
progress on public health policy or objective diagnosis and treatment.
And their new five-year, $25 million plan fails to inspire any
confidence that change will occur."

CDC spokesman Tom Skinner said today he had "no direct knowledge" of
the reasons behind Reeves' reassignment, other than the agency's
belief that his expertise was "a good fit" for his new role.

"As far as his salary goes, it's a lateral move for him," Skinner said.

Starting Feb. 14, Reeves will be senior advisor for a new mental
health surveillance program that will explore how various diseases and
conditions affect mental health. Virologist and cancer researcher Dr.
Elizabeth R. Unger becomes director of the Chronic Viral Diseases
Branch (CVDB), which includes the CFS program, on an interim basis.

"Looking for a permanent director will commence as soon as possible,"
Skinner said.

The transfer comes on the heels of the CDC's reassignment last month
of Dr. Howard Frumkin, who had run the CDC division that deal with
public health problems associated with formaldehyde contamination in
trailers provided to victims of Hurricane Katrina. Frumkin became a
special assistant to the CDC's director of Climate Change and Public

CFIDS Association applauded the leadership change in the CDC's
research into the disease:

"The CFIDS Association of America, other organizations and advocates
have vocally supported new program leadership to effect a more robust
research effort at CDC. This staffing change has the potential to
significantly advance CFS research beyond the agency's intramural
program and to seize scientific momentum generated by recent
* * *
$100M wasted in 25 years.  Divide that by the 4M Americans CDC says have CFS.  That's a whopping $1 per patient per year.  How do they expect to find anything on that budget?  By contrast, cancer research gets hundreds of dollars per patient per year, and have made great strides in changing cancer from an automatic death sentence to something that's curable if caught early enough. 
Meanwhile, Dan Peterson continues to stress that not one single CFS patient has ever been "cured"; we go into remission, but the threat of relapse is always there.  After 12 years of remission, I thought I was bulletproof, then spiraled down into a horrible relapse that's now in its 10th year.  Mostly due to doctors who bought into the CDC position that I was just depressed and therefore all they had to do to comply with accepted treatment was to keep feeding me anti-depressants until they found one that worked.  Never mind that I was joking and laughing with them, denied any suicidal ideation or feelings of hopelessness AND kept telling them what the right treatment was (proving that I did not have such low self-esteem that I was afraid to speak up). 
I wish we could find a lawyer with enough guts to sue the CDC -- class action suit -- for their contribution to what's befallen us over the past 25 years.  The reimbursement for lost wages alone would cripple the Federal budget, much less when we demand payment for 25 years of "pain and suffering".

Friday, February 5, 2010

Correspondence on CFS in the Journal of Rehabilitation Medicine

Dr. Ellen Goudsmit gave the link to the latest set of correspondence but I
thought I'd put everything in context with all the links:


(i) The following article was published in April 2008:

Chronic fatigue syndrome: an approach combining self-management with graded
exercise to avoid exacerbations.
Nijs J, Paul L, Wallman K.
J Rehabil Med. 2008 Apr;40(4):241-7.PMID: 18382818 [PubMed - indexed for


Controversy regarding the aetiology and treatment of patients with chronic
fatigue syndrome continues among the medical professions. The Cochrane
Collaboration advises practitioners to implement graded exercise therapy for
patients with chronic fatigue syndrome using cognitive behavioural
principles. Conversely, there is evidence that exercise can exacerbate
symptoms in chronic fatigue syndrome, if too-vigorous exercise/activity
promotes immune dysfunction, which in turn increases symptoms. When
designing and implementing an exercise programme for chronic fatigue
syndrome it is important to be aware of both of these seemingly opposing
viewpoints in order to deliver a programme with no detrimental effects on
the pathophysiology of the condition. Using evidence from both the
biological and clinical sciences, this paper explains that graded exercise
therapy for people with chronic fatigue syndrome can be undertaken safely
with no detrimental effects on the immune system. Exercise programmes should
be designed to cater for individual physical capabilities and should take
into account the fluctuating nature of symptoms. In line with cognitive
behaviourally and graded exercise-based strategies, self-management for
people with chronic fatigue syndrome involves encouraging patients to pace
their activities and respect their physical and mental limitations, with the
ultimate aim of improving their everyday functioning.

Full text at:  


(ii) Lucy Clark and Peter White co-wrote a reply to which the authors

Chronic fatigue syndrome.

Clark LV, White PD.

J Rehabil Med. 2008 Nov;40(10):882-3; author reply* 883-5. No abstract
PMID: 19242631 [PubMed - indexed for MEDLINE]

*Response by: Jo Nijs, Lorna Paul, Karen Wallman

Full free text at:  


(iii) Ellen Goudsmit and I wrote a response to this correspondence, to which
the other two groups replied:

Graded exercise for Chronic Fatigue Syndrome: Too soon to dismiss reports of
adverse reactions  
Kindlon T, Goudsmit EM

J Rehabil Med. 2010 Feb;42(2):184-6
DOI: 10.2340/16501977-0493

Full free text at:  



Horror Statistics from the US Government


Cinder Bridge: Reeves out


Is it over?



Thursday, February 4, 2010

Time to regroup on autism -

Whereas anti-vaccine parent advocates cite personal anecdotes and state that they know with certainty that their child's autism came from vaccines because "they know their child," scientists talk about the "preponderance of evidence" and "statistical significance."

* * *
There are also those who claim that CFS is caused by vaccines.  However, I hadn't had a shot of any sort in many years before I got sick, which sort of disproves that theory.  Many other CFS patients have wracked their brains (and searched their medical records) without finding a link to vaccination dates.
It's comforting for people to point to something like a vaccine and say "if only I hadn't" and decide that when the choice comes up again, they will refuse on behalf of their child.  In this area, we've had a lot of unvaccinated kids hospitalized because they came down with one of these preventable diseases because their parents refused to have them vaccinated for fear of autism.  And had kids diagnosed with autism despite having no vaccines.
The simple fact is, the only "risky behavior" I engaged in just prior to getting sick was leaving my apartment to go to work, church and grocery shopping.  I had excellent health habits: ate healthy food, fast food maybe four times a YEAR, no smoking, no drugs, very little alcohol, no coffee, exercised daily... there was simply nothing my doctor and I could find to blame for the CFS except that I may have been coughed on by someone who had the virus, or touched something that had germs on it.  A grab bar on the bus?  Some coins given in change?  The door of the ladies room after I'd washed my hands?  No one knows, just during the work day I felt fine and by dinnertime I was delirious with a 105 fever that my dinner guest (not a medical professional) mistook for stomach flu and decided not to take me to the ER.  (We have now been educated that "the flu" rarely gets over 101, so this had to be a more powerful virus than a simple tummy bug.)

One day I was in excellent health and the next day I couldn't even get out of bed.  I'm not one who jumps to baseless conclusions, like that I've eaten tuna a million times before, but this Friday's tuna sandwich made me sick, so it must have been the tuna and therefore no one should eat tuna ever again.  I felt fine after breakfast, I felt fine after lunch.  I sat down for dinner, and the first bite of chicken tasted bad.  My guest said it tasted fine.  The first bite of baked potato with sour cream tasted awful; my guest reassured me that the sour cream hadn't spoiled.  After those two bites that I spit out, I felt so awful I had to lie down and a few minutes later ran to the bathroom.  My friend ate the same food, including some of what was on my plate, without incident, so it wasn't food poisoning.  By the time he finished eating (and he's not a slow eater), my temp was over 104 and I was delirious.  That's how long it takes to change a life forever. 
But since we shared the food, and I hadn't actually swallowed any of it, the food can't be blamed. 
Back up a few hours, or a few days, and the only risky behavior that turns up was that I left my apartment during flu season, and mingled with people on the bus, at the store, walking down the street, at the office.
It can happen to anyone, and it has no connection to vaccines.