CONTENTS:
1. TRUSTED KEY RESOURCES FOR UK
MYALGIC ENCEPHALOMYELITIS ACTIVISM.
2. USEFUL
ACTIVISM / CHARITES / ME-INFO (Alphabetical Order).
3.
CLINICIANS / RESEARCHERS / DIAGNOSTICS (Alphabetical Order).
4. FOUR HIGHLY QUESTIONABLE & CONTROVERSIAL
OFFICIAL UK ‘CFS/ME’ SETS OF GUIDELINE DOCUMENTATION.
5. OTHER IMPORTANT UK
OFFICIAL / PARLIAMENTARY DOCUMENTS.
6. INTERNATIONALLY
RESPECTED CLINICAL & DIAGNOSTIC RESOURCES.
7. CLINICAL AND
SCIENTIFIC ARTICLES AND FILMS - ME Research UK Links Page.
1. TRUSTED
KEY RESOURCES FOR UK MYALGIC ENCEPHALOMYELITIS ACTIVISM:
ME Action UK - The Main UK
biomedical ME activists and documents archive website:
Invest in ME – An excellent UK
campaigning/info charity website sponsoring accredited biomedical professional
conferences open to all Medical and Research Professionals:
25% ME Group for the
Severely Affected –
the best UK adult support biomedical ME website:
Professor
Malcolm Hooper
– Extensive Documents-Archive/Contact at:
Margaret
Williams –
Extensive Documents-Archive/Contact at:
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
TYMES Trust – The Young ME Sufferers Trust website (UK):
RiME – Biomedical Campaign &
Letter-writing Group website:
Co-Cure – Best international ME/FM
research/issues updates website:
[Note; for concerns about the less than helpful behaviour of selected UK ‘ME’ Charities not included above see: Concerns about Selected UK ‘ME’ Charities, Anglia ME Action]:
www.angliameaction.org.uk/selected-charity-concerns
www.angliameaction.org.uk/docs/selected-charity-concerns.pdf
2. USEFUL ACTIVISM / CHARITES / ME-INFO (Alphabetical Order):
Alison
Hunter Memorial Foundation -
Australian biomedical ME website:
Axford’s Abode
– ME/CFS Issues & Research Information:
http://freespace.virgin.net/david.axford/me/me.htm
CFS/FM Support
Group (info on Dr Paul Cheney) – Dallas/Fort Worth –
USA:
http://www.dfwcfids.org/index.shtml
Co-Cure – Best international ME/FM
research/issues updates website: www.co-cure.org/
European ME Alliance - a grouping of European organisations who are involved in
supporting patients suffering from myalgic encephalomyelitis (ME or ME/CFS) and are campaigning for
funding for biomedical research:
Georgina
Downs – UK Pesticides Campaign:
The Grace Charity for ME – Christian ME Charity –
Kent, UK:
http://www.thegracecharityforme.org/
Professor
Malcolm Hooper
– Extensive Documents-Archive/Contact at:
Hummingbird’s Guide to ME –
Australian Activism:
www.ahummingbirdsguide.com/index.htm
Invest in ME – An excellent UK
campaigning/info charity website sponsoring accredited biomedical professional
conferences open to all Medical and Research Professionals:
ME Action UK - The Main UK
biomedical ME activists and documents archive website:
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
M.E.
Society of America
– USA:
www.cfids-cab.org/MESA/index.html
NAME-US
– USA
National Alliance for Myalgic Encephalomyelitis campaigning for proper disease
taxonomy and recognition:
National
ME/FM Action Network –
Canadian ME/FM Organisation:
Osler’s
Web (Hillary Johnson) –
Important USA-based international ME website and resource:
RESCIND
– ME/Neuro-Immune-Neurological
Illness Camapaign – USA:
http://www.rescindinc.org/
RiME – Biomedical Campaign & Letter-writing
Group website:
Rnase-L
Enzyme Dysfunction
– Rnase-L Immune Dysfunction – USA:
http://www.cfids-me.org/redd/
Sophia and ME – Excellent UK Sophia Mirza Memorial/ME-Information Website:
The ME and CFS
Information Page – Mary Schweitzer PHD
– USA:
The
National CFIDS Foundation
– USA:
The
NICE Guidelines Blog
– ‘Dr Speedy’ and ME in Search of Medical Honesty:
http://niceguidelines.blogspot.com
The Sophia Mirza Memorial Website – Includes Coroner’s Comments/Death
Certificate:
http://www.sophiaandme.org.uk/index.html
TYMES Trust – The Young ME Sufferers Trust website (UK):
25% ME Group for the
Severely Affected –
the best UK adult support biomedical ME website:
Margaret
Williams –
Extensive Documents-Archive/Contact at:
3. CLINICIANS / RESEARCHERS / DIAGNOSTICS (Alphabetical
Order):
Dr
David Bell MD
– USA:
Biolab Medical Unit – UK/London:
Dr
Joseph Brewer MD
– USA:
CFS Research Foundation – Funds biomedical research/Dr
Jonathan Kerr: website:
Dr
Derek Enlander
– USA:
European ME Alliance - a grouping of European organisations who are involved in
supporting patients suffering from myalgic encephalomyelitis (ME or ME/CFS) and are campaigning for
funding for biomedical research:
European Society for ME – Research & Knowledge – Scientists
think tank and discussion forum:
HHV-6
Foundation –
USA-based Human Herpes Virus 6 research – Annette
Whittemore:
Professor
Malcolm Hooper
– Extensive Documents-Archive/Contact at:
IACFS/ME – International
Association for CFS/ME – Dr Fred
Friedberg, Dr Jonathan Kerr –
USA: www.iacfsme.org
Professor
Leonard Jason
– USA:
http://condor.depaul.edu/~ljason/cfs/
Dr
Nancy Klimas MD
– USA:
http://medicine.med.miami.edu/x640.xml
Dr
Sarah Myhill
– UK:
Dr
Charles Lapp MD
- Hunter-Hopkins Center – USA:
Dr
Benjamin Natelson
– Pain & Fatigue Study Centre – USA:
www.painandfatigue.com/dr_natelson.html
Professor
Garth Nicolson
– Mycoplasmas/Infections/Immune - USA:
http://www.immed.org/illness/fatigue_illness_research.html
http://www.immed.org/index.htm
Nightingale
Research Foundation –
Canadian ME Specialist Dr Byron Hyde:
Professor
Martin Pall –
School of Molecular Biosciences - Washington State University - USA:
http://bioinformatics.wsu.edu/faculty/smb_emeritus_dir.htm
http://www.investinme.org/MartinPall.htm
Red
Laboratories
– Belgium:
Dr
Robert Suhadolnik
– USA:
http://astro.ocis.temple.edu/~rjs/home.html
The
Cheney Clinic
- Dr Paul Cheney MD – USA:
The
Enterovirus Foundation
– Dr John Chia – USA:
The
Treatment Centre for Chronic Fatigue Syndrome (CFS) – Dr Martin Lerner – USA:
www.cfsviraltreatment.com/index.html
Viral
Immune Pathology Diagnostics (VIP DX) – USA:
Whittemore
Peterson Institute for Neuro-Immune
Disease –
groundbreaking USA-based research on XMRV (retrovirus) Annette Whittemore, Dr Judy
Mikovits, Dr Daniel Peterson:
World Health Organisation (WHO):
www.who.int/classifications/icd/en/
4. FOR FOUR HIGHLY
QUESTIONABLE & CONTROVERSIAL OFFICIAL UK ‘CFS/ME’
SETS OF GUIDELINE DOCUMENTATION SEE THE FOLLOWING:
NICE (National Institute
for Health and Clinical Excellence) –
‘Chronic Fatigue Syndrome / Myalgic
Encephalomyelitis (or Encephalopathy)’ Diagnosis and Management guidelines at:
http://guidance.nice.org.uk/CG53
NHS (National
Health Service)
Plus: Occupational Aspects of the Management of Chronic Fatigue Syndrome: a
National Guideline
http://www.nhsplus.nhs.uk/providers/images/library/files/guidelines/CFS_guideline.pdf
http://www.nhsplus.nhs.uk/providers/clinicaleffectiveness-guidelines-evidencebased.asp
DWP (Department of Work &
Pensions): What is Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME)?
www.dwp.gov.uk/medical/med_conditions/major/cfs/
RCPHC
(Royal College of Paediatrics
and Child Health):
http://www.rcpch.ac.uk/doc.aspx?id_Resource=1480
http://www.rcpch.ac.uk/Research/ce/RCPCH-guidelines
5. OTHER IMPORTANT UK OFFICIAL / PARLIAMENTARY DOCUMENTS:
A
report of the CFS/ME Working Group: Report to the Chief Medical Officer of an
independent working group –
UK Department of Health:
www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4064840
Report of the UK National Task Force on Chronic
Fatigue Syndrome, Postviral Fatigue Syndrome and Myalgic Encephalomyelitis – 1994 - Report funded jointly by the Department of Health and the charity
Westcare: now out of print but see pages 47ff of CORPORATE
COLLUSION, by Professor Malcolm Hooper, Eileen Marshall & Margaret Williams, at: www.meactionuk.org.uk/Corporate_Collusion_2.htm
Report of the Gibson Group
on the Scientific Research into ME (GSRME),
UK House of Commons Website:
www.erythos.com/gibsonenquiry/index.html
6. INTERNATIONALLY RESPECTED CLINICAL & DIAGNOSTIC
RESOURCES:
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://angliameaction.org.uk/docs/CanadianOverviewUK.pdf
http://data.eastanglia.me.uk/pdfs/Canadian_ME_Overview_A4.pdf
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
Chronic Fatigue Syndrome:
Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for
Psychiatrists.
Eleanor Stein MD FRCP(C).
http://www.cfids-cab.org/MESA/Stein.pdf
The
Nightingale
Definition of Myalgic Encephalomyelitis (M.E.).
Dr Byron Hyde, Nightingale Foundation,
Toronto, Canada. Available at:
http://www.nightingale.ca/documents/Nightingale_ME_Definition_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/ComplexitiesofDiagnosis.pdf
Dr
Melvin Ramsay:
Definitive Description of ME:
http://meactionuk.org.uk/ramsey.html
7. CLINICAL AND SCIENTIFIC ARTICLES AND FILMS - ME Research UK Links Page:
(useful information here with the
glaring exception of the link to the AfME’s ‘CFS/ME’ document):
www.meresearch.org.uk/information/keypubs/articles.html
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