M.E. (MYALGIC ENCEPHALOMYELITIS) BASIC INFORMATION

[Lijda]

M.E. (MYALGIC ENCEPHALOMYELITIS) BASIC INFORMATION

ME Action (UK). April 2008.

“…there are now over 4,000 published studies that show underlying biomedical
abnormalities in patients with this illness. It’s not an illness that people
can simply imagine that they have and it’s not a psychological illness. In
my view, that debate, which has waged for 20 years, should now be over”.
[Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA
Government CDC (Centers for Disease Control and Prevention) press conference
on 3 November 2006. Also see endnote 1 below]
www.cdc.gov/od/oc/media/transcripts/t061103.htm


CONTENTS:
1. What ME is and What it is Not.
2. ME Recovery & Early Death Rates.
3. Internationally Respected ME Guidelines & Expert Comment.
4. Disinformation, Controversy and Vested Interests.
5. Concerns About UK NICE / NHS Guidelines and the Evidence Base.
6. The Gibson Parliamentary Group Findings.
7. Biomedical Evidence Summaries & Key Scientific Papers / Books.
8. Websites / Updates.
9. Endnotes.

1. WHAT ME IS AND WHAT IT IS NOT:

Myalgic Encephalomyelitis or M.E. (myalgic= muscle-pain, encephalo= brain,
myelitis= spinal-cord, encephalomyelitis= inflammation of brain &
spinal-cord) is a long-term organic/biomedical illness and is NOT the same
thing as 'Chronic Fatigue', short-term post viral syndrome or 'myalgic
encephalopathy'[2] and it is NOT a psychiatric or behavioral illness. ME has
been in the medical literature since the 1930s and classed as a physical
disease by the WHO (World Health Organisation) International Classification
of Diseases (ICD) since 1969 - currently listed at WHO ICD-10-G93.3 as a
Multi-System organic/physical NEUROLOGICAL Disorder with similarities to
Multiple-Sclerosis and Post-Polio-Syndrome. Documented clinical/research
abnormalities (see section 7 below) include: immune system/infectious;
cardiovascular, endocrine and digestive systems; muscle, cellular,
mitochondrial and genetic function and integrity; oxidative stress; central
nervous system - including brain and spinal cord; end organs. For
symptoms/signs and diagnostic information and discussion see section 3
below.

To complicate matters, the term ‘Chronic Fatigue Syndrome’ has been much
abused by vested interests trying to re-label biomedical WHO-recognized
ME/CFS/PVFS as a psychiatric disorder doing so allows insurance companies
and benefits agencies to potentially save billions of £/$ across the globe.
This is hugely impacting upon public as well as private health & welfare
policy - causing a recent UK Parliamentary inquiry group to caution:

“Given the vested interest private medical insurance companies have in
ensuring CFS/ME remain classified as a psychosocial illness there is blatant
conflict of interest here. The Group find this to be an area for serious
concern and recommends a full investigation of this possibility by the
appropriate standards body.”
[Page 30 of the joint Commons/Lords Gibson Parliamentary Inquiry Group
(GSRME) Report see section 6 below].
www.erythos.com/gibsonenquiry/index.html

Thus, many biomedical ME campaigners/clinicians if they use the misleading
term ‘Chronic Fatigue Syndrome/CFS’ at all, preface it with ‘ICD’: to read
‘ICD- Chronic Fatigue Syndrome’ or ‘ICD-CFS’ in an attempt to ensure it is
understood that they are referring to the biomedical disorder classified by
the WHO at ICD 10-G93.3. See Professor Malcolm Hooper's et al document
entitled: What is ME? What is CFS? Information for Clinicians and Lawyers.
www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm
And see:
http://meactionuk.org.uk/G93-3-ICD-10-compilation.jpg
http://meactionuk.org.uk/G93-3-ICD-10-index-closeup.jpg
www.who.int/classifications/icd/en/
Also see discussion on the controversial United States CDC disease labelling
/ classification at:
www.co-cure.org
www.cfids-me.org/
www.meresearch.org.uk/index.html

ME is a serious long-term and life changing disease with various
viruses/infectious-agents and toxic chemicals jointly implicated in
causation. ME leads to a shorter life-span in a significant minority of
patients (see section 2 below). Some viruses and other bugs have always been
able to trigger multi-system neurological diseases (e.g. Polio). However,
with the massive growth in environmental toxic chemicals since the 1940s,
the background load on human immune, nervous, endocrine and
anti-oxidant/de-toxing enzyme systems has increased exponentially. ME has
similarities to Gulf War Syndrome and ME patients have been called the
'Canaries' of our increasingly polluted planet that (should) serve as a
warning to modern industrial society.
See Professor Malcolm Hooper's peer-reviewed overview paper (regularly
updated online) entitled:
Myalgic Encephalomyelitis: A Review With Emphasis on Key Findings in
Biomedical Research. Journal of Clinical Pathology; 2007; 60:466-471. Doi:
10.1136/jcp.2006.042408.
http://jcp.bmj.com/cgi/content/abstract/60/5/466

For a biomedical research findings overview up to 2005 see:
Illustrations of Clinical Observations and International Research Findings
from 1955 to 2005 that demonstrate the organic aetiology of Myalgic
Encephalomyelitis / Chronic Fatigue Syndrome. Malcolm Hooper, Eileen
Marshall, Margaret Williams (For Gibson Inquiry):
www.meactionuk.org.uk/Organic_evidence_for_Gibson.doc

Also see: Essential investigations for people with ME/CFS? Margaret
Williams. January 2008.
http://meactionuk.org.uk/Essential_inve ... ith_ME.htm

There has been much misunderstanding and downright deceit (see section 3
below) over what ME is and is not. See Professor Malcolm Hooper's et al
document entitled:
What is ME? What is CFS? Information for Clinicians and Lawyers.
www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

Also see: The Late Effects of ME - Can they be distinguished from the
Post-polio syndrome? By Consultant Microbiologist and ME Specialist, Dr
Elizabeth (Betty) Dowsett:
www.ott.zynet.co.uk/polio/lincolnshire/ ... ctsme.html

2. ME RECOVERY & EARLY DEATH RATES:

ME has a very low patient recovery rate [3] and Consultant Microbiologist &
ME specialist Dr Elizabeth Dowsett stated that some 10% of patients die
early due to complications from ME - organ failure and other factors[4]. It
is believed that a great number of ME-related early deaths due to end-organ
failure etc are not picked up because they are simply put down to
heart-failure etc per se and not properly connected with ME as the
underlying cause. Moreover, it is arguable the majority of life-long ME
patients have some life span reduction due to increased oxidative stress
etc.

See Professor Leonard Jason's et al paper entitled: Causes of Death Among
Patients With Chronic Fatigue Syndrome. DePaul University, Chicago,
Illinois, USA Health Care for Women International, 27:615626, 2006.
Routledge. Copyright © Taylor & Francis Group, LLC. ISSN: 0739-9332 print /
1096-4665 online: DOI: 10.1080/07399330600803766
www.ingentaconnect.com/content/routledg ... 7/art00005
?crawler=true

The tragic death by ME of 32 year old Sophia Mirza was recently recorded by
a UK coroner and was the result of organ failure and alleged psychiatric
mistreatment/neglect. See:
The Inquest of Sophia Mirza. Sue Waddle, Invest in ME:
www.investinme.org/Article-050%20Sophia ... 01-RIP.htm
Inquest Implications:
www.meactionuk.org.uk/Inquest_Implications.htm


3. INTERNATIONALLY RESPECTED ME GUIDELINES & EXPERT COMMENT:

See: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: A Clinical Case
Definition and Guidelines for Medical Practitioners - An Overview of the
Canadian Consensus Document by Professor Bruce M Carruthers and Dr Marjorie
I Van de Sande.
UK NHS Clinician Endorsed / UK A4 Format - Version:
http://data.eastanglia.me.uk/pdfs/Canad ... iew_A4.pdf

See: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working
Case Definition, Diagnostic and Treatment Protocols (‘Canadian Criteria’
Full Version). Bruce M. Carruthers, Anil Kumar Jain, Kenny L. De Meirleir,
Daniel L. Peterson, Nancy G. Klimas, A. Martin Lerner, Alison C. Bested,
Pierre Flor-Henry, Pradip Joshi, A. C. Peter Powles, Jeffrey A. Sherkey,
Marjorie I. van de Sande. Journal of Chronic Fatigue Syndrome. Volume 11,
Number 1, 2003. At:
http://fm-cfs.ca/CFS-Protocol.pdf

See: Chronic Fatigue Syndrome: Assessment and Treatment of Patients with
ME/CFS: Clinical Guidelines for Psychiatrists. Eleanor Stein MD FRCP(C).
http://fm-cfs.ca/Psychiatry-overview.pdf

See: The Nightingale Definition of Myalgic Encephalomyelitis (M.E.).
Dr Byron Hyde, Nightingale Foundation, Toronto, Canada. Available at:
http://www.nightingale.ca/documents/Nig ... ion_en.pdf

The Complexities of Diagnosis. Byron Hyde. In: Handbook of Chronic Fatigue
Syndrome. Leonard A Jason et al. John Wiley & Sons, Inc. 2003.
www.nightingale.ca/documents/Complexiti ... gnosis.pdf

Dr Melvin Ramsay: Definitive Description of ME:
http://meactionuk.org.uk/ramsey.html

Dr Andrew Wallis: Research Description of ME:
http://meactionuk.org.uk/definition.html

4. DISINFORMATION, CONTROVERSY AND VESTED INTERESTS:

For an introduction to matters see K Short's paper entitled: I SEE NO SHIPS:
New Labour Health Policy and Myalgic Encephalomyelitis (ME). Available
online at:
www.cfids-me.org/angliameaction/ships.html

For the best and indispensable detailed overview of matters see: CORPORATE
COLLUSION. Professor Malcolm Hooper, Eileen Marshall & Margaret Williams. A
MUST READ document.
www.meactionuk.org.uk/Corporate_Collusion_2.htm

See: The Mental Health Movement: Persecution of Patients? A Consideration of
the Role of Professor Simon Wessely and Other Members of the “Wessely
School” in the Perception of Myalgic Encephalomyelitis (ME) in the UK.
Background Briefing for the House of Commons Select Health Committee.
Professor Malcolm Hooper. At:
www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm

See: Proof Positive? Evidence of the deliberate creation via social
constructionism of “psychosocial” illness by cult indoctrination of State
agencies, and the impact of this on social and welfare policy. Eileen
Marshall, Margaret Williams 30th August 2005. At:
www.meactionuk.org.uk/PROOF_POSITIVE.htm

See: Concerns About Commercial Conflict of Interest Underlying the DWP
Handbook Entry on ME/CFS. Hooper, Marshall & Williams.
www.meactionuk.org.uk/HOOPER_CONCERNS_A ... OF_INTERES
T.htm

See: Wessely, Woodstock and Warfare? Margaret Williams. 9th August 2007. At:
www.meactionuk.org.uk/Wessely_Woodstock_and_Warfare.htm

See: Defiance of Science: A comparison of quotations about ME/CFS from the
MERUK International Research Conference held on 25.05.07 in Edinburgh with
quotations from the Wessely School (who call it “CFS/ME”). Malcolm Hooper,
Margaret Williams. 12th July 2007
www.meactionuk.org.uk/Defiance_of_Science.htm

See: A New and Simple Definition of Myalgic Encephalomyelitis and a New and
Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic
Encephalomyelitis And An Irreverent History of Chronic Fatigue Syndrome. Dr
Byron Hyde, Nightingale Foundation, Toronto, Canada. Available at:
http://www.investinme.org/Documents/PDF ... ttle%20Red
%20Book%20for%20www.investinme.org.pdf

Coercion As Cure? Eileen Marshall & Margaret Williams. 21st September 2007.
Available at:
http://meactionuk.org.uk/COERCION_AS_CURE.htm

Deliberate Dichotomy? Eileen Marshall & Margaret Williams. 10 November 2004.
Available at:
www.meactionuk.org.uk/Deliberate_Dichotomy.htm

See book: Skewed: Psychiatric Hegemony and the Manufacture of Mental Illness
in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic
Encephalomyelitis and Chronic Fatigue Syndrome by Martin J Walker, Slingshot
Publications, ISBN: 0-9519646-4X.
www.slingshotpublications.com/skewed.html

See book: Osler’s Web; Inside the Labyrinth of the Chronic Fatigue Syndrome
Epidemic. Hillary Johnson. New York, Crown, 1996. 051770353X
www.amazon.com/Oslers-Web-Labyrinth-Syn ... 051770353X

To put what has happened to ME patients into overall context see the two
Films/DVDs entitled:
‘Sicko’ (Michael Moore) and ‘The Corporation’ at:
www.michaelmoore.com/sicko/index.html
www.thecorporation.com/

[Lijda]

5. CONCERNS ABOUT UK NICE / NHS GUIDELINES AND THE EVIDENCE BASE:

On the highly questionable behavioural approach to ICD-ME (now officially
adopted in the UK); Dr Bruce Carruthers, Senior Fellow of the Canadian Royal
College and principle lead of the international expert team that produced
the highly respected ME Clinical Case Definition, states:

“Supporters suggest that ‘ideally general practitioners should diagnose CFS
and refer patients to psychotherapists for CBT without detours to medical
specialists as in other functional somatic syndromes’. Proponents ignore the
documented pathophysiology of ME/CFS, disregard the reality of patient’s
symptoms, blame them for their illness and withhold medical treatment. Their
studies have often included patients who have chronic fatigue but excluded
more severe cases as well as those who have other symptoms that are part of
the clinical criteria of ME/CFS.”
[Underline emphasis added. See: SHS Box on page 10 of (and indeed the whole
document): Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: A Clinical
Case Definition and Guidelines for Medical Practitioners - An Overview of
the Canadian Consensus Document by Professor Bruce M Carruthers and Dr
Marjorie I Van de Sande. UK NHS Clinician Endorsed / UK A4 Format
Version]: http://data.eastanglia.me.uk/pdfs/Canad ... iew_A4.pdf

And the Parliamentary Gibson Group Inquiry Report (see section 6 below)
unequivocally states:

“The Group found that the international criteria paid far greater attention
to the symptoms of CFS/ME while the Oxford criteria focus very little on any
symptoms other than long term tiredness. There is concern that the broad
spectrum of patients who may be included in these criteria may lead to
inaccurate results in patient studies of CFS/ME.” [Page 12].

AN ABSOLUTE MUST READ document on this matter is:
Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical
Evidence Base. Comment on Section 3 of: The diagnosis, treatment and
management of chronic fatigue syndrome (CFS)/(ME) in adults and children,
Work to support the NICE Guidelines... Anne-Marie Bagnall, et al, Centre for
Reviews and Dissemination, University of York. 2005. Professor Malcolm
Hooper & Horace Reid, January 2006. From:
www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html

Another MUST READ document is:
Some Concerns about the National Institute for Health &Clinical Excellence
(NICE) Draft Guideline issued on 29th September 2006 on Diagnosis and
Management of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis in Adults
and Children. Margaret Williams / 25% ME:
www.meactionuk.org.uk/Concerns_re_NICE_Draft.pdf

And see: ADDENDUM to Some Concerns about the NICE Draft Guideline on
“CFS/ME”. Margaret Williams. At:
www.meactionuk.org.uk/ADDENDUM_to_Response_to_NICE.htm

6. THE GIBSON PARLIAMENTARY GROUP FINDINGS:

See The Report of the UK Gibson Group on the Scientific Research into ME
(GSRME), entitled: Inquiry into the Status of CFS/ME and Research into
Causes and Treatment. November 2006. At the GSRME House of Commons Website:
www.erythos.com/gibsonenquiry/index.html

NOTE: The Gibson Group was a cross party committee of inquiry with members
from both houses of the UK parliament, led by Dr Ian Gibson MP, that
reported in November 2006. Although the report was rightly criticised for
not being as clear-sighted and robust as it should have been it nevertheless
made some important and very telling comments and recommendations [underline
emphasis added]:

“In Britain, there has been a clear historical bias towards research into
the psychosocial explanations of CFS/ME. This is despite Parliament
recognizing ME as a physical illness in a Private Members Bill, the ME
Sufferers Bill, in 1988.” [Page 9].

“There is a commonly held belief circulating that the World Health
Organisation (WHO) categorises CFS/ME under both neurology (i.e. disorders
of the nervous system) and neurasthenia (mental and behavioural disorders or
other neurotic disorders). Indeed this is reported in medical textbooks. The
Group found this assertion to be incorrect. The International Classification
of Diseases (ICD-10) document produced by the WHO characterizes Post-viral
Fatigue Syndrome (PVS) and ME under Section G: ‘Diseases of the Nervous
System.’ G93.3.” [Page 9].

“The Group found that the international criteria paid far greater attention
to the symptoms of CFS/ME while the Oxford criteria focus very little on any
symptoms other than long term tiredness. There is concern that the broad
spectrum of patients who may be included in these criteria may lead to
inaccurate results in patient studies of CFS/ME. The Group feels that there
is room for a further review of the criteria which should be updated, in the
light of the peer reviewed and evidence based research done both
internationally and in the UK in the last 15 years.” [Page 12].

“There have been numerous cases where advisors to the DWP have also had
consultancy roles in medical insurance companies. Particularly the Company
UNUM Provident. Given the vested interest private medical insurance
companies have in ensuring CFS/ME remain classified as a psychosocial
illness there is blatant conflict of interest here. The Group find this to
be an area for serious concern and recommends a full investigation of this
possibility by the appropriate standards body. It may even be that
assessment by a medical ‘expert’ in a field of high controversy requires a
different methodology of benefit assessment.” [Page 30].

“The Canadian Criteria are a useful contribution to the attempt to define
the clinical condition of CFS/ME.” [Page 31].

“There are arguments relating to whether ME and CFS are separate illnesses.
Opinion on this matter is split, both within the Group and in wider society.
The only way to resolve this dispute is through a massive further research
programme involving large patient groups.” [Page 31].

“The Group was very interested in the international evidence submitted and
concerned as to why this evidence has not been seriously examined in the UK.
The Group calls for a further Inquiry into the Scientific Evidence for
CFS/ME by the appropriately qualified professionals. This Inquiry should be
commissioned by government undertaken by an independent panel of scientific
and medical experts, including virologists, immunologists, biochemists etc
who can objectively assess the relevance and importance of the international
scientific data. There is a perception that much of the international
research is not peer reviewed. The Group has found this to not always be the
case and has received research published in UK and international journals.”
[Page 31].

“ME and CFS have been defined as neurological illnesses by the World Health
Organisation. Various clinical and epidemiological research studies in
countries around the world have suggested CFS/ME to have a biomedical cause.
The UK has not been a major player in the global progress of biomedical
research into CFS/ME. Although some interesting biomedical research has been
done in the UK precedence has been given to psychological research and
definitions. The Group believes the UK should take this opportunity to lead
the way in encouraging biomedical research into potential causes of CFS/ME.
There is a great deal of frustration amongst the CFS/ME community that the
progress made in the late 1980s and early 1990s toward regarding CFS/ME as a
physical illness has been marginalised by the psychological school of
thought.” [Page 32].

“The Research areas defined by the CMO Report in 2002 have not been
addressed. Further research is the single most important area in this
field.” [Page 33].

“There is a need for diagnostic tests but this is likely to be dependent on
a greater understanding of possible causes.” [Page 33].

“There is a need to undertake further research of post viral infective cause
in carefully controlled studies.” [Page 33].
“The evidence for a toxin aetiology requires critical and controlled
studies. This includes research into possible causes, like pesticides.”
[Page 33].

“Much more study should be centred on the reasons why some individuals are
susceptible to developing the illness or illnesses. These include further
follow-up of immunological, endocrinological and neurological disturbances.”
[Page 33].

“The MRC should call for research into this field recognising the need for a
wide ranging profile of research. The committee would like to see a similar
arrangement to the AIDS programme funded previously by the MRC.” [Page 33].

“An independent scientific committee must examine the wealth of
international research data. To exclude it from the debate is a great
injustice to patients.” [Page 33].

“We recommend that this condition be recognised as one which requires an
approach as important as heart disease or cancer. There is no compelling
evidence it is purely psychosocial.” [Page 33].

“This group believes that the MRC should be more open-minded in their
evaluation of proposals for biomedical research into CFS/ME and that, in
order to overcome the perception of bias in their decisions, they should
assign at least an equivalent amount of funding (£11 million) to biomedical
research as they have done to psychosocial research. It can no longer be
left in a state of flux and these patients or potential patients should
expect a resolution of the problems with only an intense research programme
can help resolve. It is an illness whose time has certainly come.” [Page 34]

[Lijda]

7. BIOMEDICAL EVIDENCE SUMMARIES & KEY SCIENTIFIC PAPERS / BOOKS:

First; to again Quote Harvard's Professor Anthony Komaroff:

“…there are now over 4,000 published studies that show underlying biomedical
abnormalities in patients with this illness. It’s not an illness that people
can simply imagine that they have and it’s not a psychological illness. In
my view, that debate, which has waged for 20 years, should now be over”.
[Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA
Government CDC (Centers for Disease Control and Prevention) press conference
on 3 November 2006. Also see endnote 1 below]
www.cdc.gov/od/oc/media/transcripts/t061103.htm

Excellent regularly updated peer-reviewed overview paper - see:
Myalgic encephalomyelitis: a review with emphasis on key findings in
biomedical research. Professor M Hooper. J Clin Pathol 2007; 60:466471.
Doi: 10.1136/jcp.2006.042408.
http://jcp.bmj.com/cgi/content/abstract/60/5/466

For a biomedical research overview up to 2005 see:
Illustrations of Clinical Observations and International Research Findings
from 1955 to 2005 that demonstrate the organic aetiology of Myalgic
Encephalomyelitis / Chronic Fatigue Syndrome. Malcolm Hooper, Eileen
Marshall, Margaret Williams (For Gibson Inquiry):
www.meactionuk.org.uk/Organic_evidence_for_Gibson.doc

For updates on ME and related research - including downloadable pdf
abstracts/comments on all published papers see: M.E. Research UK (MERUK): A
Scotland based biomedical ME research/ information organization led by Dr
Vance Spence, Honorary Senior Research Fellow, University of Dundee Medical
School:
www.meresearch.org.uk/

Also, for international research & ME issues updates see Co-Cure at:
www.co-cure.org/

Seven Genomic Subtypes of Chronic Fatigue Syndrome / Myalgic
Encephalomyelitis (CFS/ME): a detailed analysis of gene networks and
clinical phenotypes. Jonathan Kerr et al. Journal of Clinical Pathology. 5
Dec 2007. Doi: 10.1136/jcp.2007.053553.
http://jcp.bmj.com/cgi/content/abstract ... 7.053553v1

Review: Chronic Fatigue Syndrome. L D Devanur & J R Kerr. Journal of
Clinical Virology xxx (2006) xxx-xxx; JCV-1120;
doi:10.1016/j.jcv.2006.08.013.
www.cfids-cab.org/rc/Devanur.pdf

Abnormal impedance cardiography predicts symptom severity in chronic fatigue
syndrome of disease. Peckerman A, Lamanca JJ, Dahl KA, et al. Am J Med Sci.
2003; 326:5560.
www.cfids-cab.org/MESA/Peckerman.pdf

CFS: The Heart of the Matter - 2006 Dr Paul Cheney Seminar DVD
www.dfwcfids.org/videos/video200609cheney_about.shtml
Overview document of Dr Cheney’s DVD presentation:
www.dfwcfids.org/medical/cheney/heart04.part1a.htm

CFS is Low Output Heart Failure Secondary to Mitochondrial Failure. Dr Sarah
Myhill
www.drmyhill.co.uk/article.cfm?id=381

Oxidative Stress Levels are Raised in Chronic Fatigue Syndrome and are
Associated with Clinical Symptoms. Gwen Kennedy, Vance Spence et al. Free
Radical Biology & Medicine: 39 (2005) 584-589. DOI:
10.1016/j.freeradbiomed.2005.04.020.
www.cfids-cab.org/rc/Kennedy.pdf

Nitric Oxide Synthase Partial Uncoupling as a Key Switching Mechanism for
the NO/ONOO- Cycle. Professor Martin Pall. Medical Hypotheses (2007) 69,
821-825. Doi: 10.1016/j.mehy.2007.01.070.
www.cfids-cab.org/rc/Pall-1.pdf

Book: Explaining “Unexplained Illnesses”. Professor Martin L Pall. ISBN:
978-0-7890-2389-6:
www.haworthpress.com/store/PDFFiles/For ... lained.pdf

Chronic Fatigue syndrome is Associated with Chronic Enterovirus Infection of
the Stomach. John K S Chia & Andrew Y Chia. Journal of Clinical Pathology
2007, 0:1-6. DOI: 10.1136/jcp.2007.050054.
http://press.psprings.co.uk/jcp/september/cp50054.pdf

Use of Valganciclovir in Patients with Elevated Antibody Titres against
Human Herpesvirus-6 (HHV-6) and Epstein-Barr Virus (EBV) who were
experiencing central nervous system dysfunction including long-standing
fatigue. Jose G Montoya et al. Journal of Clinical Virology; 37 Suppl. 1
(2006) S33-S38.
www.cfids-cab.org/rc/Kogelnik.pdf

Chronic fatigue Syndrome: The Need for Subtypes. Professor Leonard A Jason
et al. Neuropsychology Review, Vol. 15, No.1, March 2005. DOI:
10.1007/s11065-005-3588-2.
http://condor.depaul.edu/~ljason/

Functional neuroimaging correlates of mental fatigue induced by cognition
among chronic fatigue syndrome patients and controls. Dane B. Cook, Patrick
J. O’Connor, Gudrun Lange, Jason Steffener. PII: S1053-8119(07)00127-9. DOI:
10.1016/j.neuroimage.2007.02.033. Reference: YNIMG 4490. NeuroImage: 2007.
www.cfids-cab.org/rc/Cook-2.pdf
And see MERUK article: Non-invasive structural and functional neuroimaging
in ME/CFS at:
www.meresearch.org.uk/research/projects/neuroimage.html

Causes of Death Among Patients With Chronic Fatigue Syndrome. Leonard A.
Jason, Karina Corradi, Sara Gress, Sarah Williams, and Susan Torres-Harding.
DePaul University, Chicago, Illinois, USA Health Care for Women
International, 27:615626, 2006. Routledge. Copyright © Taylor & Francis
Group, LLC. ISSN: 0739-9332 print / 1096-4665 online: DOI:
10.1080/07399330600803766
www.ingentaconnect.com/content/routledg ... 7/art00005
?crawler=true

The Complexities of Diagnosis. Byron Hyde. In: Handbook of Chronic Fatigue
Syndrome. Leonard A Jason et al. John Wiley & Sons, Inc. 2003.
www.nightingale.ca/documents/Complexiti ... gnosis.pdf

The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic
Fatigue Syndrome. Byron Marshall Hyde M.D. et al. The Nightingale Research
Foundation. ISBN: 0-9695662-0-4.
www.nightingale.ca/index.php?target=bookoffer

Book: Enteroviral and Toxin Mediated Myalgic Encephalomyelitis / Chronic
Fatigue Syndrome and Other Organ Pathologies. Dr John Richardson. Haworth
Press, 2001. ISBN: 0-7890-1128-X.
http://www.haworthpress.com/books/default.asp

8. WEBSITES / UPDATES:

ME Action UK - The Main UK biomedical ME activists and documents archive
website:
www.meactionuk.org.uk

Invest in ME An excellent UK campaigning/info charity website sponsoring
accredited biomedical professional conferences open to all Doctors:
www.investinme.org/index.htm

25% ME Group for the Severely Affected the best adult support biomedical
ME website:
www.25megroup.org/

RiME Biomedical Campaign & Letter-writing Group website:
www.erythos.com/RiME/

TYMES Trust The Young ME Sufferers Trust website:
www.tymestrust.org/

ME Research UK (MERUK) Scotland based biomedical ME research/info
organization led by Dr Vance Spence, Honorary Senior Research Fellow,
University of Dundee Medical School: Website includes downloadable pdf
abstracts/comments on all published papers:
www.meresearch.org.uk/index.html

CFS Research Foundation Funds Dr Jonathan Kerr & others’ biomedical
research: website:
www.cfsrf.com/index.html

Co-Cure Best international ME/FM research/issues updates website:
www.co-cure.org/

The Gibson Group on the Scientific Research into ME (GSRME), House of
Commons Website:
www.erythos.com/gibsonenquiry/index.html

World Health Organisation (WHO):
www.who.int/classifications/icd/en/

OPUS Organophosphate Users’ Support:
www.rs-opus.co.uk/

Georgina Downs UK Pesticides Campaign:
www.pesticidescampaign.co.uk/


ALSO, FOR FOUR HIGHLY QUESTIONABLE & CONTROVERSIAL OFFICIAL UK ‘CFS/ME’ SETS
OF GUIDELINE DOCUMENTATION SEE THE FOLLOWING:

NICE ‘Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (or
Encephalopathy)’ Diagnosis and Management guidelines at:
http://guidance.nice.org.uk/CG53

NHS Plus: Occupational Aspects of the Management of Chronic Fatigue
Syndrome: a National Guideline
www.nhsplus.nhs.uk/CMS/ArticleFiles/331 ... ndrome.pdf

DWP (Department of Work & Pensions): What is Chronic Fatigue Syndrome (CFS)
/ Myalgic Encephalomyelitis (ME)?
www.dwp.gov.uk/medical/med_conditions/major/cfs/

Royal College of Paediatrics and Child Health: RCPCH Evidence Based
Guideline for the Management of CFS/ME (Chronic Fatigue Syndrome/Myalgic
Encephalopathy) in Children and Young People .
www.rcpch.ac.uk/Research/CE/Guidelines/RCPCH-guidelines

[Lijda]

9. ENDNOTES:

[1] Do bear in mind the varying patient selection criteria involved and
resultant confusion and controversy see for example Professor Malcolm
Hooper's et al document entitled:
What is ME? What is CFS? Information for Clinicians and Lawyers.
www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

[2] ITIS v OPATHY: Given that there is indeed evidence of brain
inflammation, and spinal-cord inflammation in at least some patients, and
that the term ‘Myalgic EncephaloMYELIITIS’ is recognised by the World Health
Organisation as a biomedical neurological disorder it seems unwise, to say
the least, to many clinicians/activists to attempt to change the disease
label to ‘Myalgic EncephalOPATHY’ as advocated in some quarters.
Not only is the EncephalOPATHY term unrecognized by the WHO, it is also open
to psychiatric interpretation as it technically encompasses any disorder or
dysfunction of the brain. Abandoning the WHO term for one that has no
international recognition whatsoever would remove crucial protection from
already beleaguered patients and further add to nosological confusion.
Thus, in response to this precise question posed to him at the end of his
2005 lecture in Norfolk (UK), Dr Bruce Carruthers, Senior Fellow of the
Canadian Royal College and principle lead of the international expert team
that produced the highly respected ME Clinical Case Definition, emailed the
following response to K Short with permission to publish:

“The Politics around this are horrendous, and the motive for any name change
would seem to have less than the good of mankind at heart. I would not
favour any kind of name change, since -itis is well established in the name
ME, and there is no good reason for changing it, since - opathy would not
reduce our state of ignorance re ME but serve to further confuse everyone-
perhaps that is one of the motives behind the suggestion."

Quotation viewable online at:
www.investinme.org/Article%20010-Enceph ... uthers.htm

And as Professor Malcolm Hooper unequivocally states: “Despite the claims of
some Psychiatrists, it is not true that there is no evidence of inflammation
of the brain and spinal cord in ME.” See:
www.investinme.org/Article%20010-Enceph ... Hooper.htm

And also see:
www.meactionuk.org.uk/Note_on_the_term_ME.htm

[3] For recovery rate information / discussion see Co-Cure Archives:
www.co-cure.org/

[4] Dr Elizabeth (Betty) Dowsett. Addressing the Spring 2002 Annual General
Meeting of ME Support Norfolk (UK). The lecture was filmed and put into the
ME Support Norfolk resource library.

Bron: Echte bronnen

Voor diegene die moeite heeft met Engels hier de vertaler:
http://nl.babelfish.yahoo.com/translate_txt

[Meral]

ben wel nieuwsgierig naar wat je weer gevonden hebt lijda maar kan me even niet op engels concentreren en die vertaler ben ik geen fan van, dan is het net of ik chinees lees, dan is engels nog betr vind ik, hoop dat als iemand het wel leest dat die een samenvatting kan geven?
groetejs meral

[Lijda]

Samenvatting is een beetje veel werk, komt erop neer dat ME een lichamelijke aandoening is en dat CGT funest is voor ME patienten.
Ff kort samen "gevat" voor je!!

[Meral]

dank je wel! als mijn hoofd het weer doet dan zal ik het lezen, maar nu lukt dat ff niet, moet het ff simpel houden vandaag

[Meral]

weet je als ik dit soort dingen lees wordt ik alleen maar bang, heb het even vluchtig gelezen, straks ga ik gewoon dood en zeggen ze oh ze had niks, alleen een hartaanval
de rest heeft ze erbij bedacht

[Meral]

niet dat ik bang ben om dood te gaan hoor, maar gewoon om even aan te geven, als ze lbijven ontkennen, dat is gwoon echt gevaarlijk, want dan wordt je alleen maar zieker en zieker en ga je dood net als die ene vrouw, ben even haar naam vergeten, sopie ?, dat is toch te erg voor woorden

[Lijda]

De bedoeling is dat jij ni bang word van dit soort informatie.
Dit soort informatie moet de artsen wakker schrikken als er dan echt wat is dat ze de ME/CVS patienten serieus nemen. En ni maar na huis sturen als zijnde tussen de oren.
De kans onder een auto te komen is groter zo moet je maar gaan denken.

[Meral]

ben ook niet bang zo bedoelde ik het niet, denk niet dat ik zomaar neer val, maar door vandaag dat er weer een ruis is gehoord en ik een echo moet denk ik gewoon stel je voor, als ik dood ga, of wie dan ook , al is het over 20 jaar, als ze neit gaan erkeennnen dat vind ik gewoon zo erg
wel lief wat je schrijft hoor, maar ben niet bang, het maakt alleen weer eens duidelijk hoe serieus deze ziekte is en dat mensen wel eens zeggen 'gewoon cvs' dan denk ik jaja, als je eens wist hoe het echt zat, ik wil deze ziekte echt helemaal neit hebbne. goh wat typ ik weer beroerd

[Lijda]

Ik wou het bericht alweer weg halen, ik wou jou ff ondersteunen.
Haal ik het morg wel weer weg, je had al gereageerd.
Dan moet je maar zo gaan denken, ze was dus wel zieker dan we dachten. Dus was ni zomaar ff cvs/me.
Jeeee hadden we maar......

Kijk maar na sophia in England haar wilden ze ook ni helpen, ja afdeling psy.

Ni bang worden en rustig ademhalen.

[Marloes]

Die samenvatting is wel erg kort door de bocht.. Bovendien zie ik in het hele stuk maar een paar zinnetjes over CGT staan en daar staat niks bij over de werking ervan en of het funest is of niet..

[Meral]

klopt marloes, maar dit soort berichten benadrukt wel de ernst en als je dan hier in nederland alleen cgt aangeboden wordt dan is dat gewoon echt erg, ik ben echt de ziekste niet, er zijn veel mensen veel beroerder aan toe en volgens mij bestaat er hier een recht op zorg maar daar kunnen we naar fluiten, alleen maar hopen dat het allemaal binnen de perken blijft en je niet zieker wordt. Ik doe het zonder rolstoel, maar zou hem soms wel nodig hebben, op die dagen kom ik gewoon niet buiten. En de laatste jaren merk ik gewoon dat ik erg achteruit ga. ik wil daar niet over nadenken omdat ik niet bang wil worden voor de toekomst, daarom lees ik dit soort berichten ook niet te vaak, ik weet dat het een erge ziekte is en niet 'gewoon cvs' maar soms gaat het wel door mijn hoofd dat ik denk stel je voor dat ik over een paar jaar ook mezelf niet meer kan redden, dat het mijn leven nog erger verwoest en dat dat misschien niet eens nodig was geweest als ze de prioriteiten maar eens gingen verleggen en zich concentreerden op echt medisch onderzoek en zoeken naar medicijnen.
Gister had ik ook gewoon ff mn dag niet, dinsdag paar uur bezig geweest met iemand die me met administratie helpt en gister halve dag in ziekenhuis dus was erg moe, en dan dit soort berichten maken me dan erg verdrietig, ik moet ze dan ook helemaal niet lezen, maar de bui is alweer over, voel me vandaag vreemd genoeg behoorlijk goed en dan is mijn humeur ook beter en kan ik gewoon realistisch denken, gister ff niet, dan wordt ik boos op die mensen

[orchidee]

www.fonteine.com/cgt_me.html (nederlands)

www.sophiaandme.org.uk/ (engels)

Ter info