Friday, February 12, 2010

Letter from Dr. Hooper re "Magical Medicine: How to make a disease disappear"

Permission to Repost

From Professor Malcolm Hooper

Magical Medicine:

How to make a disease disappear 


12th February 2010
A formal complaint has been lodged by Professor Malcolm Hooper with the Rt.
Hon The Lord Drayson, Minister of State with responsibility for the Medical
Research Council (Science and Innovation) about the "PACE" Clinical Trial of
behavioural modification interventions for people with Myalgic
Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS).

PACE is the acronym for Pacing, Activity, and Cognitive behavioural therapy,
a randomised Evaluation, interventions that, according to one of the
Principal Investigators, are without theoretical foundation.
The MRC's PACE Trial seemingly inhabits a unique and unenviable position in
the history of medicine. It is believed to be the first and only clinical
trial that patients and the charities that support them have tried to stop
before a single patient could be recruited and is the only clinical trial
that the Department for Work and Pensions (DWP) has ever funded. 

Since 1993, the giant US permanent health insurance company UNUMProvident
has been advising the UK DWP about the most effective ways of curtailing
sickness benefit payments. The PACE Trial is run by psychiatrists of the
Wessely School, most of whom work for the medical and permanent health
insurance industry, including UNUMProvident. These psychiatrists insist – in
defiance of both the World Health Organisation and the significant
biomedical evidence about the nature of it -- that "CFS/ME" is a behavioural
disorder, into which they have subsumed ME, a classified neurological
disorder whose separate existence they deny. Their beliefs have been
repudiated in writing by the World Health Organisation.

In 1992, the Wessely School gave directions that in cases of ME/CFS, the
first duty of the doctor is to avoid legitimisation of symptoms; in 1994, ME
was described by Professor Simon Wessely as merely "a belief"; in 1996
recommendations were made that no investigations should be performed to
confirm the diagnosis and in 1999 patients with ME/CFS were referred to as
"the undeserving sick".
The complaint is supported by a 442 page Report which addresses areas of
major concern about the PACE Trial.

These include apparent coercion and exploitation of patients, flawed
methodology, apparent lack of scientific rigour, apparent failure to adhere
to the Declaration of Helsinki, the unusual personal financial interest of
the Chief Investigator, the vested financial interests of the Principal
Investigators and others involved with the trial and the underlying
non-clinical purpose of the trial.
The psychiatrists' unproven beliefs and assumptions are presented as fact
and trial therapists have been trained to provide participants with
misinformation; therapists have also been trained to advise participants to
ignore symptoms, a situation that may in some cases result in death.

There are some extremely disquieting issues surrounding the MRC PACE Trial
and documents obtained under the Freedom of Information Act allow the full
story to be told for the first time. 
People with ME/CFS do not seek any special consideration; they simply wish
to be treated equally to those who suffer from other classified neurological
disorders.  As shown in the Report that accompanies the complaint, the MRC
PACE Trial clearly demonstrates that people with ME/CFS are not treated
equally to those with other chronic neurological disorders.

CONTACT: Professor Malcolm Hooper 0191 – 528 - 5536

The Report can be accessed at  

File Size 6Mb

Adobe Acrobat format

See alternative download sites below
Letter of complaint to the Rt Hon The Lord Drayson
Professor Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
                             11th February 2010

The Rt Hon The Lord Drayson
Minister of State
(Science and Innovation)
1, Victoria Street
Dear Minister

re:  Complaint about the Medical Research Council

It is with deep concern that I lodge this formal complaint about the Medical
Research Council with you in your capacity as Minister with responsibility
for the MRC.

You will doubtless be aware of the serious problems at the MRC that were
documented in the 2003 Report of the House of Commons Select Committee on
Science and Technology (HC 132) in which MPs issued a damning judgment on
the MRC, lambasting it for wasting funds and for introducing misguided
strategies for its research.  MPs found evidence of poor planning and of
focusing on "politically-driven" projects that have diverted money away from
top-quality proposals.  The unprecedented attack was the result of a
detailed probe into the workings of the MRC.

Sadly, very serious problems continue to exist at the MRC, with disastrous
results for patients with Myalgic Encephalomyelitis/Chronic Fatigue

The attached 442 page Report addresses the background to the MRC "PACE"
Trial on "CFS/ME", the biomedical evidence that disproves the assumptions of
the MRC trial Principal Investigators, the many extremely disturbing issues
surrounding the PACE Trial, and illustrations from the Manuals used in the
The unproven beliefs and assumptions of the MRC Investigators are presented
as fact; trial therapists have been trained to provide participants with
misinformation, and therapists have also been trained to advise participants
to ignore symptoms arising from the interventions, a situation that may in
some cases result in death.

Patients with ME/CFS do not seek any special consideration; they simply wish
to be treated equally to those with other classified neurological
disorders.  As shown in the commissioned Report that accompanies this
complaint (a bound copy of which will follow), the MRC Trial clearly
demonstrates that people with ME/CFS are not treated equally to those with
other chronic neurological disorders.

Given the long-standing recognition that at least one of the interventions
used in the trial is contra-indicated for people with ME/CFS, an
intervention that is already known to have adverse effects on 50% of those
who have already undertaken it, there is international concern about the MRC
PACE Trial.

I urge you to read the attached Report and to respond to it with due
attention and alacrity. You may wish to know that the Report is already on
international academic websites.

Yours sincerely
Magical Medicine:

How to make a disease disappear
Alternative download sites:
(all files are in Adobe .pdf format)
442 pages
File size - Approx. 6Mb

Thursday, February 11, 2010

How psychiatrists think



WEBINAR: CFIDS Association Research Program Update

In 2008, the Association greatly expanded its research program and launched several
new initiatives. Suzanne D. Vernon, PhD, scientific director of the CFIDS Association
of America, will describe the Association's approach to expanding research and the
six projects it funds directly. We hope you'll join us to learn more about exciting
research projects and the network that links these projects and ideas together.

Speaker: Suzanne D. Vernon, PhD, Scientific Director
Date: Thursday, February 18, 2010
Time: 2:00-3:30 (Eastern Standard Time)

Dr. Vernon will share the Association's approach to funding research and why linking
independent investigators through a network will accelerate progress. She'll describe
how the six projects being supported address different aspects of CFS and hold promise
for improved diagnostics and treatment. Here is a preview of studies she will describe:

Dr. Sanjay Shukla at the Marshfield Research Foundation is studying the human microbiome,
testing samples taken from CFS patients before and after an exercise challenge to
see if post-exertional symptoms might be due to agents crossing from the gut into
the bloodstream.

Research being led by Kathy Light, PhD at University of Utah has identified differences in blood markers after modest exercise in sedentary controls, CFS patients and MS patients.

Dr. Marvin Medow and his team at New York Medical College use a tilt test and other
tests of autonomic function to evaluate blood flow problems that have been reported
in CFS patients. His team collaborates with Dr. Dikoma Shungu, who uses a brain
imaging technique to look for abnormal levels of certain brain chemicals.

Please take advantage of this opportunity to learn more about these important studies,
and how the Association's network of investigators is contributing valuable information
to making CFS widely understood, diagnosable, curable and preventable.

To learn more about webinars in general, please visit Reading this information will orient you to the technical requirements and what
you can expect during the webinar. You can also keep up with new topics/dates as
programs are added to the schedule at

To register for the Feb. 18 webinar, go to

Our Mission:
For CFS to be widely understood, diagnosable, curable and preventable.

Our Strategy:
To stimulate research aimed at the early detection, objective diagnosis and effective
treatment of CFS through expanded public, private and commercial investment.

Our Core Values:
To lead with integrity, innovation and purpose.  

Wednesday, February 10, 2010

CFS and Metabolic Syndrome

[Tom: This study used the "empiric criteria" (Reeves, 2005) for CFS]

Chronic fatigue syndrome is associated with metabolic syndrome: results from
a case-control study in Georgia

Maloney EM, Boneva RS, Lin JM, Reeves WC.

Metabolism. 2010 Jan 25. [Epub ahead of print]

Centers for Disease Control and Prevention, Chronic Viral Diseases Branch,
National Center for Zoonotic, Vector-borne and Enteric Diseases, MS-A15,
1600 Clifton Rd, Atlanta, GA 30333, USA.

We hypothesized that persons with chronic fatigue syndrome (CFS) would have
a higher prevalence of metabolic syndrome compared with well controls, and
that unwell persons with insufficient symptoms or fatigue for CFS (termed
ISF) would have a prevalence of metabolic syndrome intermediate between
those with CFS and the controls. We also sought to examine the relationship
between metabolic syndrome and measures of functional impairment, fatigue,
and other symptoms. Our analysis was based on a population-based
case-control study conducted in metropolitan, urban, and rural areas of
Georgia, United States, between September 2004 and July 2005. There were 111
persons with CFS, 259 with ISF, and 123 controls. Metabolic syndrome was
determined based on having at least 3 of 5 standard risk components
(abdominal obesity, high triglycerides, high blood pressure, elevated
fasting glucose, and decreased high-density lipids) according to the
National Cholesterol Education Program Adult Treatment Panel III definition.
Persons with CFS were 2-fold as likely to have metabolic syndrome (odds
ratio = 2.12, confidence interval = 1.06, 4.23) compared with the controls.
There was a significant graded relationship between the number of metabolic
syndrome factors and CFS; each additional factor was associated with a 37%
increase in likelihood of having CFS. The association of ISF with metabolic
syndrome was weaker (odds ratio = 1.72, confidence interval = 0.94-3.16).
Among persons with CFS, the number of metabolic syndrome factors was
significantly correlated with worse fatigue on a standardized summary
measure of fatigue (r = 0.20, P = .04). In conclusion, CFS was associated
with metabolic syndrome, which further exacerbated fatigue. Published by
Elsevier Inc.

PMID: 20102774 [PubMed - as supplied by publisher]

Tuesday, February 9, 2010

Brain Shrinkage May Be Tied to Insomnia



When All Else Fails, Blaming the Patient Often Comes Next

When All Else Fails, Blaming the Patient Often Comes Next
Published: October 20, 2008

Doctors and psychotherapists generally don't like it when their patients don't get better. But the fact is that lots of patients elude our clinical skill and therapeutic cleverness. That's often when the trouble starts.

I met one such patient not long ago, a man in his early 30s, who had suffered from depression since his teenage years. In six years of psychotherapy, he had been given nearly every antidepressant under the sun, but his mood hadn't budged.

Weeping in my office one day, he explained that he was depressed because he was a failure and a whiner. "Even my therapist agreed with me," he said. "She said that maybe I don't want to get better."

I could well imagine his therapist's frustration. She had been working with him for nearly three years without significant progress, and she was now doing what many clinicians do when the chips are down: blame the patient for failing to improve.

"I think he has an unconscious desire to remain sick," she told me.

About a month later, I saw this patient respond remarkably well to a novel treatment. Free of depression at last, he was joyful and relieved — an odd reaction, you must admit, from someone who secretly wished to be ill.

Not just that, but he no longer felt like a failure and was much more upbeat about his future prospects.

I decided to challenge him. "How come you're feeling so much better despite the fact that nothing in your life has really changed in the past few weeks?"

"Well, I guess I just think like that when I'm down."

Exactly. His sense of worthlessness was a result of his depression, not a cause of it. It's easy to understand why the patient couldn't see this: depression itself distorts thinking and lowers self-esteem. But why did his therapist collude with the patient's depressive symptoms and tell him, in effect, that he didn't want to get better?

For an all too human reason, I think. Chronically ill, treatment-resistant patients can challenge the confidence of therapists themselves, who may be reluctant to question their treatment; it's easier — and less painful — to view the patient as intentionally or unconsciously resistant.

I recall an elderly woman who was referred by a colleague for intractable depression, in which I have a special interest. I was eager to help her. Several months and many treatments later, I began to get frustrated that she was no better and noticed that my thinking about her shifted. I wondered whether there was something about the sick role that she found rewarding.

After all, she had constant visits from friends and family members, not to mention an army of medical experts who were all trying, in vain, to cure her. If she got better, she might lose all that care and attention.

Then one morning, shortly after starting a new combination of antidepressants, she called. I did not recognize the cheerful voice. "I'm feeling really good," she told me. "Not depressed at all."

My delight aside, I felt chagrined that I had begun to write her off as a help-rejecting crank.

Of course, it makes good medical sense for therapists to rethink the diagnosis and treatment of any patient who fails to improve. But this is a double-edged sword.

Another patient, a young woman with unstable moods, was recently hospitalized with a diagnosis of bipolar disorder. When she failed to respond to two mood stabilizers, the staff began to entertain a diagnosis of borderline personality disorder, which involves emotionally chaotic relationships and impaired ability to function in the world.

"She's pretty aggressive and demeaning, and we think she has some serious character pathology," one of the residents told me.

But partly treated bipolar disorder can mimic borderline personality disorder, and after she received a third mood stabilizer, her "personality disorder" melted away, along with her provocative behavior.

This patient had frustrated her clinicians with her lack of response to treatment. In turn, her doctors reacted by changing her diagnosis to a personality disorder. The change in thinking shifted the blame from the clinicians to the patient herself, who was now viewed more as bad than sick.

To be sure, some patients really do want to be sick. People with Munchausen syndrome, for example, deliberately produce physical or psychological symptoms for the express purpose of assuming the sick role. And they will go to extraordinary means to defeat doctors who try to "treat" them.

But a vast majority of patients want to feel better, and for them the burden of illness is painful enough. Let's keep the blame on the disease, not the patient.

Richard A. Friedman is a professor of psychiatry at Weill Cornell Medical College.



20 Facts for Caregivers

20 Facts  about being a Carer for someone with severe ME.

Greg and Linda Crowhurst 9th Feb 2010

(permission to repost)

1 The   relationship between you and the person with severe ME, must
be be a priority in your life. You may be caring for decades, as there
is currently no treatment, no cure and limited validation.

2 You need to understand the illness , what it is and how it affects the person.

3 This is going to take time; it will not happen overnight. Tt may
take years, even to identify the symptoms and understand their impact.

4 It is going to be painful, as you try and understand the complexity
of  severe ME and  its  bizarre nature ; in relation to  you as a
carer, trying to help the person and the impact it has upon your

5 The person with severe ME is not living in the same experience of
the world as you are; this is so hard to understand and to deal with.

6 You are most likely going to have to work this out alone.

7 Until you understand it, can cope with it, know how to deal with
it,know  how to maintain your relationship, despite difficult
interactions, you will not be able to convey the severity and effect
of severe ME  to  family, friends, professionals.

8 You are going to experience isolation from normal things because the
person with severe ME cannot do normal things.If you stand by their
side, your life wil become more limited too.

9 You are going to enter into some of the aspects of the person's
experience; the disbelief, the disappointment, the negativity, the
misunderstanding, the misinterpretation, the rejection.

10 You are going to have to become aware politically of what is going
on, in order to survive.

11 You are going to have to fight your corner and the person's corner,
even to get basic needs met.

12 You will have to become an advocate for yourself and the other
personbecause it is a poorly understood illness, often treated as a
psychiatric illness rather than a true neurological, multisystem,
dysfunctional disease.

13 You really cannot assume that you are going to get the
understanding, the acceptance, the medical and  social support from
family and friends that  you would expect and should be entitled to
and would get with any other illness.

14 If you are going to be the main carer for the person with severe
ME, you have to make the choice between work and poverty and quality
of life and your relationship with the person.

15 These are big decisions that have  a huge impact upon the person
and they result in losses that need grieving and understanding. Most
importantly they need accepting.

16 You need to accept the choices you make and look for the benefits
you gain in loving and caring for that person.

17 The person with severe ME is not going to fit into standard
procedures and practices, do not expect that it is going to be easy
and expect that formal agencies are  going to reach out and

18 There is a tendency, on behalf of professionals and well meaning
others   to be quite divisive and to "client-ise"  patients and
carers, rather than offer a holistic approach and understanding  to
what their need is.

19 Do  not give your power away to social workers, nurses, doctors,
anybody. You work, live with the person, you do know better and trust
has to be earned.

20 You will become greater than you ever thought possible, because you
really do have to reflect upon what is important to you in your life
and how to be empowered.

Dr. Bell to speak in Toronto

Copied from a MEAO flyer:

The Myalgic Encephalomyelitis Association of Ontario and the Environmental
Health Clinic,  Women's College Hospital Present Our Special Guest Lecturer

Dr. David S. Bell
"Current Findings and Research into ME/CFS: XMRV Virus and What It Means"

Saturday, March 6, 2010, 1-4 p.m.
Women's College Hospital Auditorium, 76 Grenville Street, Toronto
Suggested Donation at the Door: $10

Please do not use alcohol or other sanitizers right before entering the

For further information, call 416.222.8820 or 1.877.632.6682
or visit us at

David S. Bell, MD, FAAP, is a Harvard graduate, with an MD degree from
Boston University School of Medicine, 1971. In 1978, he began work at
the University of Rochester but soon began a private practice in the town
of Lyndonville, New York. In 1985 nearly 220 persons became ill with an
illness subsequently called chronic fatigue syndrome in the communities
surrounding Lyndonville, New York. This illness cluster began a study of
the illness which continues today. Dr. Bell is the author or co-author of
numerous scientific papers and books on CFS. He has also lectured on
the ways ME/CFS affects the neurological and immune systems and the
possible explanations for this illness, right down to the body's ability to
handle oxygen at the cellular level. He has been rigorously following the
research into the XMRV virus and will be speaking about this research.


Questions from Dr. Ralph for Dr. Kaye and Dr. Wessely

It was recently announced that the test offered on the Imperial College
website for XMRV in relation to CFS/ME and prostate cancer was now being
withdrawn with immediate effect.

Imperial's excuse for withdrawing the XMRV test from their website for
"CFS/ME" and prostate cancer was because it wasn't meant for patients and
that it was only meant for "an ethically approved research project."

Well, if this was the case then where does that leave all the other tests it
offers on its website?

STI's for £40 (each),

HCV genotyping for £100,

HBV for Genotypic Drug Resistance costing £100,

HTLV (costs covered by the NHS) and

HIV-1 (costs covered by the NHS)

Question 1 – Was this test that Imperial was offering (on the same basis as
all the other test above) the same test used for the recent Imperial/PLoS
One study?

Question 2 – Was the test different and if so - how was it different?

Question 3 – As all the other tests (shown above) are still available under
the same framework then regardless of whether or not such tests are only
available via requests from GP's or Specialists - opposed to being offered
direct to patients; why was the XMRV test removed?

Question 4 – If the answer to Question 2 was "No" and it wasn't different
then where does this leave the credibility of the PLoS One/Imperial study?

Question 5 – Was the Imperial test removed from the website because it was
inherently unreliable? (Go back to Question 4)

Readers wanting answers to these question need to contact Dr Steve Kaye who
was cited on the Imperial website as being the contact for the XMRV test
(now withdrawn)….

Email: [email protected]
Tel: 020 759 43917 (direct)

FAO Dr Steve Kaye
Molecular Diagnostic Unit,
Imperial College London
4th Floor, Medical School Building
St. Mary's Hospital
Norfolk Place
London W2 1PG

I have asked Dr Kaye these questions and so far I have not received a reply.



Monday, February 8, 2010

Dr. Donnica Joins WPI

Whittemore Peterson Institute Announces Renowned Health Expert Dr.
Donnica Moore as New Spokesperson.


Feb. 8, 2010

Angelina Wyss Gordon
Director of Development
[email protected]

Whittemore Peterson Institute Announces Renowned Health Expert as New
-Dr. Donnica Moore joins the institute as spokesperson and advocate-

Reno, Nev. – The Whittemore Peterson Institute for Neuro-Immune
Disease (WPI) has recently announced Dr. Donnica Moore, a
distinguished women's health expert, as its new celebrity spokesperson
and advocate. Dr. Moore will join WPI in its efforts to help raise
awareness and funding for its research of XMRV and associated
neuro-immune diseases, including Chronic Fatigue Syndrome.

"We are pleased to have a highly regarded women's health expert join
us in our efforts to bring more attention to neuroimmune diseases,"
said Annette Whittemore, founder of the Whittemore Peterson Institute.
"Dr. Donnica Moore is an incredible advocate for these patients. Her
experience and support will be huge assets to the WPI and patients
around the world, as we seek to raise awareness and additional funding
in this field of medicine."

A graduate from Princeton University and the State University of New
York School of Medicine at Buffalo, Dr. Moore is a women's health
expert who has received numerous awards for her health communications
and advocacy. Widely known as Dr. Donnica, she has appeared on over
650 national television shows, including "Good Morning America," "The
View," "The Oprah Winfrey Show," and "Weekend Today Show." Recently,
Dr. Donnica has been credited for her involvement with CFS/ME
research and related advocacy efforts. Dr. Donnica is the mother of
two teenage children, one of whom has suffered from Chronic Fatigue
Syndrome/Myalgic Encephalomyelitis (CFS/ME) for more than five years.

"I am grateful to have such an opportunity to further advocate on
behalf of the WPI's search for more effective treatments," said Dr.
Donnica Moore, women's health expert and spokesperson for WPI. "I am
fully committed to supporting WPI in its efforts to help millions of
patients worldwide, like my son Brian, who suffer from the
debilitating effects of CFS/ME and those with related neuro-immune

WPI is set to open its new medical facility at the University of
Nevada School of Medicine campus in September 2010 and plan to welcome
its first patients soon after. To learn more about the institute and
ongoing research, please visit


Located within the University of Nevada School of Medicine's Center
for Molecular Medicine, the Whittemore Peterson Institute will be the
nation's first comprehensive translational research facility dedicated
to the research and treatment of neuro-immune diseases when it opens
September of 2010.


In sickness and in health ... couple's love endures -


Note the statistic: 90% of the divorces occur when it's the woman who has the chronic illness.  Please do not feel like it's something you did wrong if your husband leaves you because you have CFS.

Post-Exertional Malaise and CFS

  'Postexertional Malaise in Women with Chronic Fatigue Syndrome'
  Vanness JM, Stevens SR, Bateman L, Stiles TL, Snell CR.
  Pacific Fatigue Laboratory, University of the Pacific , Stockton,
  J Womens Health (Larchmt). 2010 Jan 24

  Objective: Postexertional malaise (PEM) is a defining characteristic
  of chronic fatigue syndrome (CFS) that remains a source of some
  controversy. The purpose of this study was to explore the effects of
  an exercise challenge on CFS symptoms from a patient perspective.

  Methods: This study included 25 female CFS patients and 23 age-matched
  sedentary controls. All participants underwent a maximal
  cardiopulmonary exercise test. Subjects completed a health and
  well-being survey (SF-36) 7 days postexercise. Subjects also provided,
  approximately 7 days after testing, written answers to open-ended
  questions pertaining to physical and cognitive responses to the test
  and length of recovery. SF-36 data were compared using multivariate
  analyses. Written questionnaire responses were used to determine
  recovery time as well as number and type of symptoms experienced.

  Results: Written questionnaires revealed that within 24 hours of the
  test, 85% of controls indicated full recovery, in contrast to 0 CFS
  patients. The remaining 15% of controls recovered within 48 hours of
  the test. In contrast, only 1 CFS patient recovered within 48 hours.
  Symptoms reported after the exercise test included fatigue,
  light-headedness, muscular/joint pain, cognitive dysfunction,
  headache, nausea, physical weakness, trembling/instability, insomnia,
  and sore throat/glands.
A significant multivariate effect for the
  SF-36 responses (p < 0.001) indicated lower functioning among the CFS
  patients, which was most pronounced for items measuring physiological

  Conclusions: The results of this study suggest that PEM is both a real and an incapacitating condition for women with CFS and that their responses to exercise are distinctively different from those of sedentary controls.

Sunday, February 7, 2010

A visit to Dr. Peterson

Check out this five part review of a patients week-long visit to Dr. Peterson. Find out what you could expect if you see him including tests, costs and what Dr. Peterson himself is like.

Part I: A Visit to Dr. Peterson:
Part II: First Appointment, Testing
Part III: Spect Scan and Some Test Result:
Part IV: Spinal Tap, On the Road Again:
Part V: Coming up - Final Thoughts, Complete Tests/ Test Results


CDC Research on CFS: Open Deception

I've just posted an essay detailing published lies and misrepresentations to the press by Bill Reeves:

I have asked that it be posted on Co-Cure, but one never knows.

I have testified about this to the CFSAC, I have sent the information to reporters, to my congressional representation, and to researchers, and nothing changes.

One senator's aide replied with a form letter about the CDC's work and a copy of the deceptive BioMed Central article!!

I'm hoping that in this climate, SOMEBODY will DO something about it

But ... Both Elizabeth Unger and Suzanne Vernon were co-authors.



I've just learned that the policy on the ME-CFS Community blogaite has changed, and you have to join to read anything on there. I can't put it on my own website because I don't have my laptop with me.So here is the text and the info - perhaps someone could wrestle it down to a usable size for writing to representatives or newspapers.
TC, Mary
CDC Research on CFS: Open Deception• Posted by Mary Schweitzer on February 7, 2010 at 7:00pm
What this post contains is deliberate deception by the CDC - in refereed journal articles and when speaking to the press.I'm tired of sending this information to the CFSAC, to politicians, reporters, and scientists. Nothing ever happens. Maybe one of you reading this can find a way to do something about it.
Bill Reeves' name is on all of it - but he's not the only one, and I ask every co-author, every collaborator, to disavow this research, and the resulting questionnaires.In the following documents, CDC describes a two-day hospital stay in Wichita. According to the CDC, there was only one such two-day hospital stay having to do with CFS. We are told there were 227 patients with CFS, 58 patients with CFS, 43 patients with CFS, and 6 patients with CFS - same hospital stay, same group of patients. What happened here?
We are owed a public apology and a retraction, and we should not rest until we get one. This is important NOT because it was Reeves, but because CDC still uses a set of diagnostic questionnaires that Reeves claimed "operationalize the Fukuda definition" - but the only formal effort to verify that claim was in this two-day Wichita hospital stay.This MUST be aired publicly, because it is just plain WRONG, yet there remains an article claiming to disprove NMH's relationship to CFS, the questionnaires continue to be used by CDC to diagnose CFS - AND co-authors continue to be decision-makers regarding our disease.
Here goes:
1. In April 2006 there was a conference call and press release about the genome study, where Reeves stated 227 patients with CFS from a population study brought into a hospital for two days were included in the data set - and also stated there was only ONE such study, so it's the same as in items 2, 3, and 4.CDC's official website has this link: Couldn't find the website using the URL given by CDC? Neither could I. I believe CDC has deleted it, which is a violation of Sunshine laws, but there's always the Internet Wayback Machine :
You have to scroll down to about the tenth paragraph of Reeves' presentation to the reporters to find the assertion that 227 patients with CFS were put in the hospital for a two-day study.
Just in case it looks like Reeves misspoke, there was also a written press release, also currently inaccessible (tho it LOOKS like there's a link) - but again, that's why we love caches and Google - in this one he says 227 patients with CFS in the second paragraph:
Why was this open deception okay? Where's the apology?
2. In Dec 2005, BioMed Central published an article describing the 2-day Wichita hospital stay, in which it was stated that of 227 PEOPLE from the Wichita surveillance study were brought into the hospital for a two-day stay; 58 who had been diagnosed with CFS during the study, and 169 PEOPLE from 3 other categories: (1) "Insufficent Symptoms of Fatigue" (ISF) to be classified using the Fukuda definition; (2) CFS and ISF with major melancholic depression, which was exclusionary; and (3) a set of matched controls.
So of the 227 PEOPLE who were brought into the hospital, only 58 had been diagnosed with CFS. And of those 58, only 6 remained after various exclusionary criteria were applied.
To repeat, only SIX of those remaining in the study had been diagnosed with CFS using the methods of the surveillance study (telephone interview with physician follow-up, using the Fukuda criteria) Origional article: The information is mainly in the tables; if you are reading it on internet, click on table 2 and table 5.3. The same article found 43 patients currently afflicted with CFS using the new questionnaires - including only those 6 patients who had been previously diagnosed with CFS during the surveillance study, plus another 4 who were newly diagnosed, plus 6 who would previously been excluded for major melancholic depression for a total of 16 claimed to meet both the surveillance criteria and the new questionaires -
Note: this is the ONLY published trial performed by CDC to substantiate their claims that the questionnaires "operationalize" the Fukuda definition:>.4. The depression exclusion was changed after a meeting of the so-called "CFS International Working Group" - BUT - the NEW criteria only said you could add in patients with major melancholic depression IF AND ONLY IF the bout of depression had resolved and not returned for at least five years before the onset of fatigue.
You will not find the 5-year requirement in the abstract of the article on CDC's website - you have to pull up the article in BioMed Central: "The 1994 case definition stated that any past or current diagnosis of major depressive disorder with psychotic or melancholic features, anorexia nervosa, or bulimia permanently excluded a subject from the classification of CFS. Because these illnesses may resolve with little or no likelihood of recurrence and only active disease or disease requiring prophylactic medication would contribute to confusion with evaluation of CFS symptoms, we now recommend that IF THESE CONDITIONS HAVE BEEN RESOLVED FOR MORE THAN 5 YEARS BEFORE THE ONSET OF THE CURRENT FATIGUING ILLNESS [my emphasis], they should not be considered exclusionary."
And, finally,
5. The two-day hospital stay data was used in an article claiming to have disproved any connection between NMH and CFS (as described in a 1995 JAMA article by Hopkins researchers) - the article states that 58 patients with CFS were brought into the hospital for a two-day stay and were given tilt table tests, and did not have NMH/POTS. See .
But we know that only 6 of those 58 supposedly still had CFS by the time they entered the hospital for that two-day study. Even if they had turned to the questionnaires to put together the sample, it was only 43. So where were the supposed 58 patients with CFS in a two-day hospital stay??
All of us are owed a formal retraction and repudiation of the publications resulting from the two-day Wichita hospital stay - and admission that those questionnaires CDC insists "operationalize" the Fukuda definition do nothing of the sort. They were NEVER validated. They need to be jettisoned.
I tried for four years to do something about this, and I failed.I am now handing it to the community - and the co-authors, who share responsibility even if they worked on a different task in the study - to get something done. Public apology and public retraction - nothing less.
Mary M. Schweitzer, Ph.D.
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