Home
Hummingbirds
What is M.E.?
M.E: The Medical Facts
The M.E. Symptom List
The M.E. Ability Scale
Testing for M.E.
Treating M.E.
Misdiagnosis
Research & Articles
Research in Context
Case Studies
Book Reviews
Donations
Quotes
Support Groups
Practical Tips
What M.E. Feels Like
The Terminology Explained
Activism and Advocacy
Smoke and Mirrors
The Myths about M.E.
A Million Stories Untold
Fatigue Schmatigue!
Translations
Audio and Video
What's New?
Tell a Friend...
Website e-Newsletter
Website References
Search this Website
About this Website
About the Author
Gallery
The Guestbook
M.E. (and ICD-CFS) Articles, Research and Books

Research topics:  General Articles and Research Overviews, Immune System ResearchViral Research, Cardiac Research, Exercise Research, Muscle Research, Metabolic Research, Neurological and Cognitive Research, Genetic Research, Neuroendocrine Research, and Miscellaneous Research.

Article topics: The Definitions of M.E., On 'fatigue', CBT, GET and the unscientific 'behavioural' paradigm of M.E., On 'stress', M.E. Outbreaks, On the Name Myalgic Encephalomyelitis, M.E. and Other Illnesses, Children with M.E., The Severity of M.E., M.E. Fatalities, Activism Articles, Articles sorted by Author, Articles sorted by Country and Historical, Political and Medical Overviews.


Topic on this page: M.E. Activism Articles - page 3 of 3





Activism Articles by featured Authors - continued

Peggy Munson’s book ‘Stricken: Voices from the Hidden Epidemic of CFIDS’ is available from this site which also features Peggy’s Awareness day letters from

*O* 2001, Question your own prejudices about chronic illness. Do you believe people with chronic illness are weak, have given up, have bad Karma, or just need "spiritual growth?" Ask yourselves what fears these ideas serve to assuage, and imagine ways to bridge the "us" and "them" separation that keeps disabled people in substandard care. When the New Age, or Yoga Journal, or Oprah's website, portrays CFIDS patients as people who are spiritually bankrupt, is this any different than Attorney General John Ashcroft stating that people are disabled because of God's will?

*O* 2002 Many people are stunned that I have stayed so sick for so long, mistakenly believing that CFIDS is a mild, short-term condition. Some of this confusion is due to the fact that many articles on CFIDS, and particularly many articles and books in the field of alternative medicine, use "Chronic Fatigue" and "Chronic Fatigue Syndrome" interchangeably. Even WebMD now knows that these are not the same thing -- stating, "most people who have chronic fatigue do not have the disease chronic fatigue syndrome. There are many health problems that can cause fatigue. CFS can be diagnosed only after a thorough evaluation has ruled out other possible causes of chronic fatigue." People with idiopathic chronic fatigue might spontaneously recover, but those with CFIDS generally don't. A study in 1999 found that only 4 percent of severe CFIDS patients ever fully recover (Hill, Nancy et al. "Natural History of Severe Chronic Fatigue Syndrome." Archives of Physical Medicine and Rehabilitation, 80, September 1999). Even the CDC, which used to publish optimistic, poorly designed studies on recovery, now estimates the recovery rate of CFIDS to be less than 12%, according to the CFIDS Association of America. This could change, with viable treatments, but still NOT A SINGLE DRUG has been approved by the FDA for CFIDS. Having CFIDS is very much, medically, like living in a third-world country.

*O* and 2003. Dr. Paul Cheney explained how the bodies of CFIDS patients are choosing between lower energy and life, or higher energy and death. On a physiological level, CFIDS patients live in a near-death suspension, making patients feel much like they are dying, not tired.

Dr. David Bell has studied the near-death feeling as it relates to blood volume. "[T]he vast majority of Bell’s CFIDS patients had 'extraordinarily' low circulating blood volume (a combination of plasma and the red blood cells via which the plasma delivers oxygen throughout the body)," writes About.com columnist Joan Livingston. "While his average patients ran about 70 percent of normal, several patients with Chronic Fatigue Syndrome (PWCs) had only half the blood volume of a healthy person, an amount so low that it would ordinarily cause shock and prove fatal in a car accident."

Why is there a gap between public perception and reality?

Clinical use of words like "stealth," "tricky," and "migratory" also add to the nebulous public image. Dr. Arnold Peckerman reported on Web MD that CFIDS patients might have what he calls a "tricky heart." The word "tricky" seems simple, like a stuck lock that needs grease, but Peckerman's heart discovery is harrowing. "Basically we are talking about heart failure," Dr. Peckerman says of the type of abnormal valve function in CFIDS patients. "[C]hronic fatigue syndrome is a progressive disease." Peckerman believes this discovery might explain why CFIDS patients become so ill from simple movements. "Typically we see this in people with three-vessel heart disease," adds Emory University cardiologist Joseph I. Miller III, MD of the abnormalities.


*O* NCF 2004 Awareness day message by Jill McLaughlin

And truth of the matter it is, it is "fatigue" that has caused the psychiatric overlay and wasted a disproportionate amount of our meager funds studying the efficacy of psychotherapy rather than trying to find viable treatments.

The fatigue model has failed and should not be accepted as a name or the basis for studying the illness. How much insight into the cause or pathophysiology of any illness would be gained by comparing it to any other condition which also shared one symptom.

Advertising fatigue or studying it or analyzing it by fatigue scales or holding fatigue conferences or setting up fatigue clinics is not going to help those with underlying neurological illnesses.


*O* Advocacy Issues Update by Jill McLaughlin

History is replete with the tragedies of diseases awaiting proper recognition. There is considerable alignment among interested parties that
the "chronic fatigue" aspect is not conducive to forwarding the mission of "distinct" public recognition, understanding and effectively treating this condition. The term 'CFS' (chronic fatigue syndrome) is used interchangeably with "chronic fatigue" (CF) and "chronic fatigue syndromes" (i.e. any syndrome that causes "chronic fatigue") in many papers, publications and the media. The symptom of fatigue obscures descriptions of the illness and the undue focus on fatigue has caused significant amounts of scarce research money to be wasted on studying one symptom rather than the illness itself.


*O* ME is not fatigue by Maryann Spurgin Ph.D.

M.E. is not a fatigue state, and fatigue is not a defining symptom of M.E. We do not support use of the word "fatigue" either to name this illness or to describe this illness. Patients and patient groups who want to "change the name" must first take responsibility accurately to describe the symptomatology.


*O* The Need to Abolish the Fatigue Model and to Establish Precise Subsets by Maryann Spurgin Ph.D.

One of the main goals of the M.E. Society is to see the inaccurate, vague, demeaning word "fatigue" eliminated not only from names but also from descriptions of the disease and from scientific discussion. We hold that scientific progress cannot be made when researchers focus on and blend the patients together by the poorly defined symptom of fatigue, which muddies understanding of the disease because it is a symptom of many diseases, of psychiatric diseases, as well as a normal physiological state.


Maryann Spurgin, Ph.D.,reviews the 2003 ME/CFS clinical case definition

In sharp contrast to the 1994 CDC Fukuda criteria, which makes "fatigue" a compulsory symptom but downplays and makes optional post-exertional sickness and other cardinal symptoms, the Canadian clinical case definition specifically selects patients who worsen with exercise. The clinical definition makes it very clear and compulsory that in order to meet the diagnostic criteria, the patient must become symptomatically ill after exercise, and must also have neurological, neurocognitive, neuroendocrine, dysautonomic (for example, orthostatic intolerance), and immune manifestations. That is, worsening with exercise, and many symptoms other than fatigue, must be present for a patient to meet the diagnostic criteria. This case definition will go a long way to help distinguish ME/CFS patients from chronic fatigue patients, depressed patients, patients with PTSD, somatization, fibromyalgia, and other diseases with which ME/CFS has been confused, including those that improve with exercise.


*O* Shaky Foundation: Problems with the Fukuda et al. CDC Research Case Definition for CFS by Craig Maupin

It isn't difficult to see the problems with the 1994 CDC revised case definition. In fact, a quick look at some of the discrete differences in those who now are diagnosed with Chronic Fatigue Syndrome is the best way to illustrate the confusing web that has been woven. For emerging illnesses such as CFS, quality medical care and research will start with clear distinctions. But unfortunately for those with CFS, it is those distinctions that the CFS research community often seems to want to blur, downplay, and integrate.


ADVOCACY RUTS - INTRODUCTION by Craig Maupin

This series, Advocacy Ruts, is about CFS advocacy. CFS advocacy needs a custom-tailored game plan. If our advocacy efforts look, sound, or appear like advocacy efforts for other diseases, our efforts may not generate the same results. Because CFS is a disease that is unique, it will require an advocacy approach that is also unique.


*O* Sophisted Investigation by Cesar Quintero

Much reported controversy surrounds the public health agencies and their handling of investigation into the disease Myalgic Encephalomyelitis.   Surely the most advanced nations with legions of medical scientists would be motivated to meet the challenge and discover the cause of an epidemic striking down its citizens, which leaves large numbers permanently disabled.  Yet the response of the public health agencies has caused particular skepticism.  This has raised many questions.

Now this question may sound very odd, but consider: How would you Disguise a Disease ?


Name Change - Evaluation by Cesar Quintero

This report is more evidence that it is absolutely necessary to restore the name Myalgic Encephalomyelitis. I do not see this report as something to be given any blanket endorsement. They were not asked to propose a temporary name. Patients have been damaged by the govt. changing the name of ME to CFS. This fact is what they continue to cover-up.


Restore the Name by Cesar Quintero

My suspicion is that until we accept that the disease that we have is M.E.we will continue to be victimized and manipulated.


Myalgic Encephalomyelitis - A New Day by Cesar Quintero

Do certain herpes viruses have a special relationship with the polio viruses in the same way HIV and HHV6 work together. We may never know if the government continues to cover up the existence of ME by calling it fatigue and confusing the public and doctors and fostering mythical subgroups. Confusing the understanding of this disease by opening the door for the inclusion of a multitude of unexplained fatigue conditions and somatic syndromes that will choke off the support and investigation of Myalgic Encephalomyelitis.


Government Manipulates the Facts by Cesar Quintero

How long will the deception and fraud continue before the public calls for accountability and prosecutions for fraud ?


*O* The underserving ill - a warning by John Sayer

It is my belief that the current - almost frenzied - campaign to psychologise M.E. and similar conditions is part of this propaganda and represents a dress rehearsal for the wider application of the psychosocial classification of a new "underclass" of "the undeserving ill", stripped of some of the very rights the Second World War was supposedly fought for by the Allies.


Outrageous job description for ME/CFS nurse therapist by John Sayer

These job descriptions relate to a philosophy - ALREADY IN PLACE - of subjecting "CFS" sufferers to psychotherapy designed to "prove" to them that they are simply perpetuating their own illness through aberrant belief systems.


THE TRAVESTY OF SO-CALLED "M.E. TREATMENT" by John Sayer


The Psychologising Matrix and Collaborating Charities by Kevin Short

Forget Action for ME, forget the 'ME Alliance' sham and forget Charles Shepherd's so called Myalgic 'Encephalopathy' Association and, above all, forget the notion of any collaboration with and appeasement of Wesselyites, Ministers, and the rest. The ONLY way we can secure justicefor real M.E. sufferers is to fight politically and fight fire with fire. We do not need to raise money from poor sufferers for research, we need to raise money for a political and legal fight. We win the political fight then we can get state bio-medical research funding and support.


Driving Home The Evidence - to our own ranks by Kevin Short

The sad fact is that most M.E. sufferers are clueless to both the level of existing bio-medical research about their illness and to the  well-funded political campaign directed against them by the psychologisers and their corporate/DWP backers.


*O* ME/CFS Politics in a Nutshell (UK) by Kevin Short

Ever mindful of budgets, In the UK, Government Ministers have been captured by the psychologising views of the Wessely School, Insurance Industry and the DWP 4 and are pursuing their ‘Pathways to Work’ project - which is set to gain momentum from 2005. A situation where sufferers of a physical neuro-immunological disease (M.E.) will be routinely referred to psychiatrists as mental health patients – and subject to harmful ‘treatment’5 upon pain of benefits withdrawal – is being set up. This is NOT exaggeration and I would direct you to the extremely worrying comments of Wessely-School psychiatrist Dr Michael Sharpe: "Those who cannot be fitted into the scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and health service."6

In spite of all the biomedical evidence to the contrary, these vested-interest psychologisers continuously maintain their anti-science mantra: that ‘M.E. is perpetuated by mistaken belief and sick-role behaviour’. Their well-funded lobby machine relentlessly bombards parliament and the media with disinformation - and they flood medical and trade journals with extremely low quality psychiatric ‘research’ papers.7 Inevitably, all of this adversely affects the views of time-pressed GPs who are simply too busy to read all the bio-medical research papers themselves.


A Million Stories Untold - on this site


Fatigue Schmatigue explains how the 'fatigue' construct of ME/ICD-CFS came into being and why ME/ICD-CFS is NOT a 'fatiguing illness' at all. Did you know, for instance, that 'chronic fatigue' was not associated with this illness at all until the name was changed from ME to CFS in 1988? - on this site


What is ME/ICD-CFS? All the facts on ME/ICD-CFS in one place - on this site


ME/ICD-CFS books - on this site


Authors: Dr. Elizabeth Dowsett,  Byron Hyde MD,  Professor Malcolm Hooper, Dr. Paul Cheney,  Dr David Bell M.D., Dr Melvin Ramsay M.D.  The Committee for Justice and Recognition of Myalgic Encephalomyelitis,  Margaret Williams and Eileen Marshall,  Gurli Bagnall,   Mary Schweitzer,  Stephen RalphHillary Johnson, Peggy Munsen, Jill McLaughlin and Maryann Spurgin Ph.D.   Craig Maupin, Cesar Quintero, Kevin Short and John Sayer  / On this site. 





More activism Articles

Presentation to the AACFS Advocacy Session - October 10, 2004


A few words (on activism) by Matt Straznitskas
 

Advocacy by John Friedlich


Writing Letters to Officials, from "The Activist's Handbook"


Ten things severe ME sufferers wish ME societies would do by Ricky Buchanan


A new era of psychospiritualism [a deconstruction of the MUS construct]


Have psychologizers ever ONCE apologized? By Erik Johnson


GULF WAR SYNDROME EXISTS - WESSELY DEBUNKED

Daily Telegraph (UK): Doctor's diary: at long last, agreement that Gulf War syndrome is not in the mind

Scotsman Newspaper: Syndrome revealed

US in U-turn over Gulf war syndrome - New Scientist


Proving Pigs Can Fly


ME: we need a cure, not guidance on how to live


'Why won't they believe he's ill?' (from The Independent)


Viral Epidemics Sweep the Globe


Psychiatry as psychotic disorder by Erik Johnson


With permission, I reproduce below part of an article on the Truth Campaign web site, which sheds further light on the eugenics movement. John Sayer
 
 

 
UK Parliament SMASHES Big Pharma... Opinion by Consumer Advocate Tim Bolen
 

"The Truth Campaign" website. "Skewed" book by Martin Walker
 

 

 
Miracle Malpractice By Kelly Hearn, AlterNet. Posted March 28, 2005.
 
A new book explains how the medical industry, pharmaceutical companies, the media and politicians all prey on the public's fears to sell them new drugs and the latest technology.




Relevant Books

*O* The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Edited by Byron Hyde, M.D. , Nightingale Research Foundation, Ottawa, Canada
 

 
*O* Engaging with M.E. (DVD format and printed format) Professor Malcolm Hooper
 

 
*O* What is ME? What is CFS? Information for Clinicians and Lawyers (Online format and printed format) by Professor Malcolm Hooper, Margaret Williams and Eileen Marshall
 

 
 

 
*O* Osler's Web by Hillary Johnson


*O* Stricken: Voices from the Hidden Epidemic of CFIDS edited by Peggy Munson


*O* Skewed: Psychiatric Hegemony and the Manufacture of Mental Illness in MCS, GWS, ME and CFS by Martin J Walker

Available for purchase from MERGE at www.meresearch.org.uk and at www.truthcampaign.ukf.net/ 


*O* Shattered: Life with ME by Lynn Michell

Available for purchase from MERGE at www.meresearch.org.uk


ME: The New Plague by Jane Colby


America's Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS by Neenyah Ostrom


'The Bounty Hunters'  by Gurli Bagnall (a novel)


Invisible Enemies: Stories of Infectious Disease by Jeanette Farrell
 

 
 
 
Note: Links given with certain book titles are for informational purposes only and are not recommendations of any particular book seller. It is recommended that you shop around for the best prices at a number of stores for any books you might wish to purchase.




Previous pages

Page 1: Activism Articles by featured Authors

Page 2: Activism Articles by featured Authors (continued)

Page 3: Activism Articles by featured Authors (continued), Activism Articles by other Authors and Relevant Books



.

Copyright © by Jodi Bassett 2004 - 2008