“Chronic Fatigue Syndrome” is an entirely different animal.
The syndrome was developed in 1988 as a research tool for the purposes of figuring out what the heck happened to hundreds of people at North Lake Tahoe who failed to recover from a strange flu-like illness.
The sensation involved was nothing like fatigue, but the CDC called it CFS anyway. In the early days, one could tell who really had the illness that was called “CFS” by the predictable reply: “It is NOT FATIGUE!”
Anyone who experienced that strange paralytic sensation would SURELY go out of their way to make sure this is clearly understood.
So there is a high probability that when someone is content to have their illness-sensation conceived as being some kind of fatigue, that they did not experience the illness that was called CFS.
In this way, “CFS” is almost diagnostic for someone who does not have a fatigue-illness.
Strange… but true!
-Erik Johnson
Incline Village survivor
Participant: Holmes et al CFS definition study group.
Chapt. 23 of Mold Warriors: “Mold at Ground Zero for CFS”
and, Chapt. 17 of “Surviving Mold”
The Novice Pilot, CFS and other Medical Mistakes

Nobody believes you, Pete e.g., black mold poisoning, your car window, 8 times deans list??? remember that D minus you got in radio production at SUNY Oswego? Or the fact you mentioned on Ripoff report and used to tell me how you struggled to get that C minus average for basic math and you needed a tutor? Doesn’t sound like a deans list student to me. you refuse to work and act like the world owes you a living. unless that living is from mike dunn and its under the table.

yeah, pete, enjoy your life in the desert. you finally got out of rochester like you wanted. good for you. the family is proud of you and hope you stay out there and never come back. gramma doesn’t want you on her property again after what the police found in your bedroom.

PEOPLE, JUST DISREGARD PETE’S COMMENTS. HE’S ONE NOT TO BE TAKEN SERIOUSLY.

God bless you, you will need it.

( http://www.moldvideos.blogspot.com )

my ex-slumlord (Rick Landry) slandered me out of safe housing (due to my disabilities caused by the mold, I was eligible for a free apartment) & now I am deathly ill & homeless in NY Please make my belated X-Mas prayer come true by exposing what happened to me.. I’ve lost my teeth, gums, health, & home; please help me expose the truth.
Regards, Pete Helfrich

585-469-0234

PRESS RELEASE: MEDICAL RESEARCH COUNCIL

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.

The Report can be accessed at http://www.meactionuk.org.uk/magical-medicine.pdf

File Size 6Mb

Adobe Acrobat format

CONTACT: Professor Malcolm Hooper Tel. +44 191 528 5536

This paragraph….
“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.”

….could pose us a whole new level of threat, in the face of the DSM5 activities.

http://cfsuntied.com/blog1/2010/02/12/dsm5-ticket-back-to-reevesville/

There are other examples of incompetence and bias at the CDC. Lyme disease is another illness where misinformation by the CDC has caused pain, suffering, and death.

No, that’s not what the Fukuda CFS definition was really intended to accomplish.
By using new prototypes that were selected on the basis of the loose Holmes CFS criteria, Fukuda 94 became a tautological self-affirmation of what “CFS” is NOT.
CFS was NO LONGER the illness of the actual people who caused the CREATION of the syndrome.
Fukuda tried to put a separation between CFS and the evidence responsible for its creation.
This was necesary for CFS to “officially” become nothing more than its own description.
Reeves and the CDC thought that nobody would remember why CFS came into being.

But I remember!

-Erik Johnson
Incline Village CFS survivor