ME (Myalgic Encephalomyelitis) BASIC INFORMATION:



“…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 [i] below]

http://www.cdc.gov/media/transcripts/t061103.htm  


CONTENTS / SECTIONS:


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 & Vested Interests.

5. Concerns About NICE/NHS Guidelines & Evidence Base.

6. The Gibson Parliamentary Group Findings.

7. Concerns about the MRC & PACE Trial.

8. Concerns about CBT & GET.

9. Biomedical Evidence Summaries & Key Papers/Books.

10. Useful Websites/Links/Updates/Resources.

11. Endnotes and References.

12. About Anglia ME Action / Disclaimer.

13. Appendix-1. Brain Images: Exercise & Brain Blood Flow.



1. What ME is and what it is not:

 

Myalgic Encephalomyelitis or ME (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' (see below). ME is not a psychiatric or behavioral illness. ME has been in the professional medical literature since the 1930s and has similarities to Multiple-Sclerosis, Post-Polio-Syndrome & AIDS. Documented clinical/research abnormalities (see section 9 below) include: immune system pathology and dysfunction; retroviral and other infections; cardiovascular, endocrine and digestive systems pathology and dysfunction; muscle, cellular, mitochondrial and genetic pathology and dysfunction; oxidative stress; central nervous system (including brain and spinal cord) pathology and dysfunction; end organ pathology and dysfunction and early death in a significant minority of cases (see section 2 below). For symptoms/signs and diagnostic information and discussion see sections 3 and 9 below.

 

ME has been recognised by the WHO (World Health Organisation) since 1969 and classified as a biomedical neurological disorder in its International Classification of Diseases tenth revision (ICD-10) at ICD-10-G93.3. Unfortunately, there have been many misguided and politically-driven misrepresentations of the WHO position and ME terminology. To complicate matters further, some countries (Germany and the USA, for example) have implemented or are implementing their own amended national “Clinical Modification” versions of the WHO ICD: some of which affect the ME/PVFS classification within. Most other countries however, including the UK, subscribed to the standard version of WHO ICD 10.

Do note that the WHO is in the process of revising/upgrading and consulting upon its entire international classification of diseases under its eleventh revision (WHO ICD 11). The WHO have stated their timetable for this upgrade (which may or may not include substantial changes to ME/PVFS(CFS)) was as follows but there have been delays and readers are advised to consult the WHO ICD Revision web pages at the below link: 


- ICD-11 Alpha Draft will be ready by 10 May 2010.
- ICD-11 Beta Draft will be ready by 10 May 2011.
- ICD-11 Final Draft will be submitted by 2014.

For further information and updates on the eleventh revision of the International Classification of Diseases see:

http://www.who.int/classifications/icd/ICDRevision/en/index.html
https://sites.google.com/site/icd11revision/home

The standard/unmodified WHO ICD-10 primary tabular list permits the use of the following alternative name for Benign Myalgic Encephalomyelitis/ME’: 'Post Viral Fatigue Syndrome/PVFS' in its disease classification.

ICD-10 classifies ME/PVFS under Diseases of the Nervous System at section G93.3 (Other disorders of brain) and nowhere else. In doing so it implicitly recognises the role of viral involvement (see section 9 below) in the disease and specifically excludes the disease from mental and behavioural disorders.

The term 'Chronic Fatigue Syndrome/CFS' is not entered/categorised anywhere in the ICD-10 tabular list at all but is listed in the ICD-10 alphabetical index as a term by which ME/PVFS may be referred to:

In clarifying this point to members of the UK ME community, the WHO stated “ME is classified at G93.3 and is a specific disorder. The term CFS covers many different conditions, which may or may not include ME. The use of the term CFS in the ICD index is merely colloquial and does not necessarily refer to ME. It could be referring to any syndrome of chronic fatigue, not to ME at all. The index (i.e. volume iii) cannot be taken as definitive.” [Dr Robert Jacob, Medical Officer (ICD), Classifications, Terminologies and Standards, WHO HQ, Geneva. 4th February 2009].

Again, some confusion has arisen here not only because some countries have their own “Clinical Modification” version of ICD 10 but because the WHO did not put all of the details of their ICD 10th Revision in their on-line website summary. For accuracy therefore, full reference needs to be made to the three-volume published/book version of ICD 10 (especially the alphabetical index/volume 3 as well as the tabular list/volume 1) the bibliographic details of all three volumes are:

International Statistical Classification of Diseases and Related Health Problems -

Tenth Revision – Second Edition: Volume 1 – Tabular List – ISNB: 92 4 154649 2.

International Statistical Classification of Diseases and Related Health Problems -

Tenth Revision – Second Edition: Volume 2 – Instruction Manual – ISNB: 92 4 154653 0.

International Statistical Classification of Diseases and Related Health Problems -

Tenth Revision – Second Edition: Volume 3 – Alphabetical Index – ISBN: 92 4 154654 9.

The three WHO volumes of ICD-10 can be accessed via academic libraries and some public libraries and are of course available directly from the WHO at:

http://www.who.int/classifications/icd/en

 

Note that the standard three volume WHO ICD-10 does not permit use of the truncated and wholly inadequate term 'Chronic Fatigue' as a reference to ME/PVFS in the tabular list, the alphabetical index or anywhere else. Also, long-term ICD-10 PVFS that is ME is not synonymous with short-term and less serious post viral syndromes. Neither is WHO-ICD-10-recognised ME the same thing as 'CFS/ME': the latter being a relatively recent term arguably designed to confuse matters by those ignoring the organic and neurological nature of ME that is underpinned by both a large body of clinical and research evidence and WHO ICD-10 disease taxonomy. Moreover, WHO/ICD-10 Myalgic Encephalomyelitis is not the same disease entity as Myalgic Encephalopathy: the latter '-opathy' term, like 'CFS/ME' is completely unclassified by the WHO/ICD-10 and its use to describe ICD-10 ME/PVFS is not recommended. Indeed, as Dr Bruce Carruthers, Senior Fellow of the Canadian Royal College and principle lead of the international expert team that produced the highly respected International ME Clinical Case Definition in Canada stated in 2005:

“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." 

[Dr Bruce Carruthers, 2005: quotation viewable on-line at:

www.investinme.org/Article%20010-Encephalopathy%20Carruthers.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-Encephalopathy%20Hooper.htm

And leading international ME specialist Dr Byron Hyde states:

“Recently an M.E. patient's spine has been examined in the UK and the inflammatory nature was also discovered. Myalgic Encephalitis is a diffuse inflammatory injury of the capillaries at the level of the basement membrane of the brain. It makes no sense to rename the horse and call it Myalgic Encephalopathy. All brain pathologies involving brain tissue are encephalopathies. Let us stop fussing around and get back to the real problem and that is investigating the patients.” [Dr Byron Hyde MD 2006]: www.nightingale.ca/

 

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

To complicate matters, the term ‘Chronic Fatigue Syndrome’ has been much used and abused by vested interests trying to dishonestly re-label biomedical WHO-recognised ME/PVFS as a psychiatric disorder: in spite of the large and growing body of peer-reviewed biomedical evidence to the contrary. As Professor Malcolm Hooper states, the renaming of ME to Chronic Fatigue Syndrome (CFS) in 1988, giving misplaced emphasis to “fatigue”, trivializes the substantial disability of the disease. Such abuses of medical taxonomy allow medical insurance companies and benefits agencies to potentially save billions of £s/$s across the globe and serves to mislead press and public about the true documented nature of the complex physical disease that is ME. This is hugely impacting upon public as well as private health and welfare policy and caused a 2006 UK Parliamentary group of inquiry 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 Group on the Scientific Research into ME (GSRME) Report – see section 6 below].

www.erythos.com/gibsonenquiry/index.html


A NOTE ON THE TERM ‘FATIGUE’:

‘Fatigue’ is a by-product of healthy activity by healthy individuals as well as a symptom common to most illnesses, physical and mental, and it varies widely in intensity. The term is in fact so broad-ranging that AMEA, along with many ME specialists, believe it to be utterly pointless and misleading when used to describe the serious multi-system immuno-neuro-endocrine disease that is Myalgic Encephalomyelitis.

The terms ‘Chronic Fatigue Syndrome’ or, worse still, ‘Fatigue Syndrome’ are those favoured by the psychiatric school linked to the medical insurance industry that has a vested interest in trivialising ME – as noted by UK Parliamentarians in 2006:

“There have been numerous cases where advisers 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.”

[Parliamentary Group on the Scientific research into ME (GSRME) Report, Page 30, November 2006].

www.erythos.com/gibsonenquiry/index.html

AMEA does not use the term ‘Chronic Fatigue’ to describe Myalgic Encephalomyelitis / ME at all and only very reluctantly uses the term ‘Chronic Fatigue Syndrome / CFS’ as an alternative name for ME because the World Health Organisation (WHO) have indicated the term as an alternative “colloquial” label in the index of the tenth revision of its International Classification of Diseases (referencing section G.93.3). Neither is 'Chronic Fatigue Syndrome / CFS' the same entity as 'Fatigue Syndrome /FS': 'Chronic Fatigue Syndrome / CFS' is given as a colloquial index reference to ME/PFVS ICD-10.G93.3 (i.e. a physical/neurological disease), 'Fatigue Syndrome / FS' is listed by the WHO as a completely separate (mental) disorder in ICD-10-F.48. With reference to ICD-10, the WHO have made it clear that a disease cannot be classified under more than one rubric and that ME/PVFS(CFS) ICD10-G93.3 is not the same illness as 'Fatigue Syndrome / FS' ICD-10-F.48 and the two categories should not be conflated[*].

AMEA in fact believes it is no more appropriate to call ME ‘Chronic Fatigue Syndrome’ or 'Fatigue Syndrome' than it would be to describe HIV-AIDS as such. Lest anyone view such a comparison as trivial I would refer them to the comments by internationally respected AIDS and ME specialist, Professor Nancy Klimas:

“I hope you are not saying that [ME] patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses (in 2009) I would rather have HIV”

[Nancy Klimas, one of the world’s foremost AIDS and ME physicians; Professor of Medicine and Immunology, University of Miami; New York Times, 15th October 2009].

[*] For further discussion on such matters see:

ME/CFS: TERMINOLOGY by Margaret Williams at:

www.angliameaction.org.uk/docs/me-cfs-terminology.pdf

http://meactionuk.org.uk/ME_CFS_TERMINOLOGY.pdf

 

ME/CFS: Classification Issues by Margaret Williams at:

http://meactionuk.org.uk/ME_CFS_Classification_Issues.pdf


Thus, some biomedical ME campaigners/clinicians, if they use the misleading term ‘Chronic Fatigue Syndrome/CFS’ at all, have prefaced it with ‘ICD(10)’: to read ICD-(10) Chronic Fatigue Syndrome’ or ‘ICD-(10) 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 and not entirely separate psychological conditions classified by the WHO at ICD-10-F48 and elsewhere. See for example Professor Malcolm Hooper's et al document entitled: What is ME? What is CFS? Information for Clinicians and Lawyers at:

www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

 

Also see:  http://meactionuk.org.uk/G93-3-ICD-10-compilation.jpg

http://meactionuk.org.uk/G93-3-ICD-10-index-closeup.jpg

www.meresearch.org.uk/information/whatisme.html

www.who.int/classifications/icd/en/

 

And see: The Development of a Revised Canadian Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Case Definition. Professor Leonard A Jason et al. American Journal of Biochemistry and Biotechnology 6 (2): 120-135,SN 1553-3468. Available online at:

www.scipub.org/fullext/ajbb/ajbb62120-135.pdf

www.scipub.org/scipub/c4p.php?j_id=ajbb

 

Also see discussion on the controversial United States CDC and DSM disease labelling / classification at:

www.name-us.org/index.html        www.co-cure.org        www.cfids-me.org/

www.meactionuk.org.uk/DSM-V-submission.htm

 

ME is a serious long-term and life changing disease with various viruses/infectious-agents and toxic chemicals/stressors jointly implicated in causation. On 8 October 2009 the USA Whittemore Peterson Institute published a study linking the immune-compromising and prostate-cancer-causing XMRV retrovirus to ME/CFS in the peer reviewed journal Science: Judy A Mikovits et al; Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome; DOI: 10.1126/science.1179052. See:

www.sciencemag.org/cgi/content/abstract/1179052 and www.wpinstitute.org/xmrv/index.html

In response, The Independent newspaper reported similar findings in blood taken in London from 500 ME patients and heavily criticised the UK medical establishment for not taking ME more seriously:

 

“Scientists could be on the brink of a breakthrough. We must hope that they are. That would – at least – go some way to compensating for the shameful manner in which sufferers were treated for so long by the medical profession.”

http://www.independent.co.uk/opinion/leading-articles/leading-article-chronic-neglect-1799885.html

http://www.independent.co.uk/news/science/has-science-found-the-cause-of-me-1799944.html

 

A number of non-replicating follow-up studies that did not subsequently find retroviral infection in ME(CFS) patients were heavily criticised for poor quality - in terms of patient selection criteria and the viral detection techniques used. Another qualitative study did find retroviral infection. See Detection of MLV-related virus gene sequences in blood of patients with Chronic Fatigue Syndrome and healthy blood donors. Alter & Komaroff et al, PNAS, August 2010.

Doi: 10.1073/pnas.1006901107. www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

ME patients in the UK have faced partial bans on donating blood for many years, as a result of retroviral findings however, the UK Chief Medical Officer has stated that from 1st November 2010 the ban will be life-long[ii]. Similar measures to protect the security of blood banks are being taken in other countries around the world.

 

ME in fact leads to a shorter life-span in a significant minority of patients (see section 2 below). Some viruses and other infectious agents have always been able to cause multi-system neurological diseases (e.g. Polio). However, in addition to immune compromising infections, with the massive growth in environmental toxic chemicals since the 1940s [iii] and increased electromagnetic pollution [iv], the background load on human immune, cellular, nervous, endocrine and anti-oxidant/detoxing enzyme systems has increased substantially. ME also has similarities to Gulf War Syndrome [v].

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:

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_investigations_for_people_with_ME.htm

 

And see: Medication and ME/CFS Margaret Williams. August 2008.

http://www.meactionuk.org.uk/Medication_and_ME.htm

 

There has been much misunderstanding and downright deceit (see sections 3 and 4 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/library/dowsett/lateeffectsme.html

 

And see: Lost Voices – A Hidden Illness by Invest in ME:

www.investinme.org/LostVoicesBook/IiME%20Lost%20Voices%20home.htm

 

For a further, referenced, biomedical research summary see section 9 below.

 

 

2. ME Recovery & Early Death Rates:

 

ME has a very low patient recovery rate[vi] 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[vii]. It is believed that a great number of such ME-related early deaths are not correctly identified 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 that 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, 27:615–626, 2006. Routledge. Copyright © Taylor & Francis Group, LLC. ISSN: 0739-9332 print / 1096-4665 online: DOI: 10.1080/07399330600803766

www.ingentaconnect.com/content/routledg/uhcw/2006/00000027/00000007/art00005?crawler=true

 

The tragic death by ME of 32 year old Sophia Mirza was recorded by a UK coroner in 2007 as the result of organ failure. It is also alleged that psychiatric mistreatment/neglect contributed. See:

The Sophia Mirza Memorial Website – Coroner’s Comments/Death Certificate:

http://www.sophiaandme.org.uk/index.html

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://angliameaction.org.uk/docs/CanadianOverviewUK.pdf

http://data.eastanglia.me.uk/pdfs/Canadian_ME_Overview_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

 

Also see: The Development of a Revised Canadian Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Case Definition. Professor Leonard A Jason et al. American Journal of Biochemistry and Biotechnology 6 (2): 120-135,SN 1553-3468. Available online at:

www.scipub.org/fullext/ajbb/ajbb62120-135.pdf

www.scipub.org/scipub/c4p.php?j_id=ajbb

 

See: 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

 

See: 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

 

Dr Melvin Ramsay: Definitive Description of ME:

http://meactionuk.org.uk/ramsey.html

 

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

 

Research Descriptions of ME – ME Action UK:

http://meactionuk.org.uk/definition.html

4. Disinformation, Controversy and Vested Interests:

For a brief introduction to ME politics and recent history see AMEA paper entitled: I SEE NO SHIPS: New Labour Health Policy and Myalgic Encephalomyelitis (ME). Available online at:

http://angliameaction.org.uk/docs/new-labour-cfs-me-policy-ships.pdf

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

 

For concerns and professional complaints about the Medical Research Council (MRC) and Department of Work & Pensions (DWP) funded PACE Trial (PACE is the acronym for Pacing Activity and Cognitive behavioural therapy, a randomised Evaluation…) on ‘Chronic Fatigue Syndrome’ see: Magical Medicine: How to make a Disease Disappear and Ethical and Scientific Concerns about the MRC PACE Trial, both by Professor Malcolm Hooper, at:

www.meactionuk.org.uk/magical-medicine.htm

www.meactionuk.org.uk/MREC-complaint.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_ABOUT_A_COMMERCIAL_CONFLICT_OF_INTEREST.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

 

For concerns surrounding the misguided use of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) see Statements of Concern about Cognitive Behavioural Therapy and Graded Exercise Therapy provided for the High Court Judicial Review of February 2009 and Documented Pathology seen in ME/CFS that contra-indicates the use of Graded Exercise Therapy, both by Margaret Williams, at:

www.meactionuk.org.uk/JR_Statements_-_extracts.htm

www.meactionuk.org.uk/Documented_pathology_seen_in_ME-CFS.htm

 

For evidence of Wessely School misrepresentations of ME/CFS see QUOTABLE QUOTES Compiled by Margaret Williams on behalf of the charity Invest in ME, April 2007, at:

http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf

 

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/PDFdocuments/Byron%20Hyde%20Little%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    http://oslersweb.com/

www.amazon.com/Oslers-Web-Labyrinth-Syndrome-Epidemic/dp/051770353X

 

 

For general concern about DWP welfare reforms see for example:

 

New-Labour’s Flawed ‘Pathway to Work’: ME Patients in a Corporate-Skewed Drift Net, Anglia ME Action, at:

http://angliameaction.org.uk/docs/corporate-drift-net.pdf

 

The New Statesman article Is Labour Abolishing Illness? By Professor Alison Ravetz: http://newstatesman.com/200805010024

 

BBC News Investigative Report: New Benefit System Labelled Unfit, 25 May 2010, at:

http://news.bbc.co.uk/1/hi/scotland/10159717.stm

 

For concerns about the less than helpful behavior of selected UK ‘ME’ Charities see: Concerns about Selected UK ‘ME’ Charities (MEA, AfME & AYME), Anglia ME Action, at:

www.angliameaction.org.uk/selected-charity-concerns

www.angliameaction.org.uk/docs/selected-charity-concerns.pdf

 

To further examine corruption of medical science and healthcare and to put what has happened to ME patients into overall context see the following:

 

Professor Bruce Charlton – Infostat, cargo-cult science and the policy sausage-machine: NICE, CHI and the managerial takeover of clinical practice:

http://neuroscientist.com/bgcharlton/cargocult.html

 

Professor Bruce Charlton – Zombie Science – a sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest, Medical Hypotheses (2008) 71 327-329, DOI: 10.1016/j.mehy.2008.05.018:

http://medicalhypotheses.blogspot.com/2008/07/zombie-science-dead-but-wont-lie-down.html

 

Film/Lecture (2009) – Professor David Healy – The Future of Medical Care:

www.youtube.com/watch?v=X53r3zTQJNk

 

Film/Lecture: Dr Jeff Schmidt – author of Disciplined Minds:

http://activistteacher.blogspot.com/2010/03/jeff-schmidt-author-of-disciplined.html

 

Film - ‘Sicko’ - Michael Moore (over optimistic account of UK state health & welfare provision but useful insights into medical insurance industry counterparts) at:

www.michaelmoore.com/sicko/index.html

 

Film - ‘The Corporation’:

www.thecorporation.com/

 

 

 

5. Concerns about UK NICE/NHS Guidelines and the Evidence Base:

 

Such was/is the widespread and international concern over the UK NICE CG53 ‘CFS/ME’ Guideline development process (which completely excluded all genuine specialist ME Clinicians) and publication (in August 2007) that, in June 2008, two ME patients (with the support of doctors and scientists – including over 20 formal written expert statements) sought, and obtained permission in the Royal Courts of Justice, for a High Court Judicial Review of matters. See: http://angliameaction.org.uk/docs/JusticeCranston17June2008.pdf

An overview of the reasons for bringing the case against NICE is set out in Prejudice-based Medicine – Reasons for Judicial Review of the NICE Guideline on “CFS/ME” - available at

www.meactionuk.org.uk/Prejudice-based_Medicine.htm

In his witness statement prepared for the High Court case, Dr Terry Mitchell (one of the UK National Health Service’s most experienced specialist ME/CFS hospital consultants) wrote:

“Until recently I was for many years the Consultant clinical lead (CNCC) of the Norfolk, Suffolk & Cambridgeshire NHS ME/CFS Service. Further to the query regarding the composition of the Guideline Development Group (GDG) for the NICE guidelines relating to ME/CFS. I confirm that I was hugely disappointed to find that the membership of the GDG did not include any of my clinical colleagues who over the years have seen large numbers of patients with ME/CFS. In my view this resulted in an unbalanced analysis as many who were on the GDG seemed to have strong leanings to the psychological / psychiatric approach to this devastating illness. ...I also have to say that I was astonished to discover that the systematic evidence review (authored by Bagnall et al – York/CRD 2005), specifically commissioned to support the NICE ME/CFS guideline, omitted the serious concerns highlighted in their previous review of the same literature (JAMA 2001) that such evidence was seriously flawed.”

[Dr Terry Mitchell, Consultant Clinical Lead (CNCC) to one of the 12 national NHS specialist hospital ME/CFS centres - witness statement to the UK High Court available at:

www.angliameaction.org.uk/NICEJRdocs/Terry_Mitchell_WS.pdf

Dr Ian Gibson MP, former chairman of the House of Commons Science & Technology and Parliamentarians’ Inquiry into ME/CFS (see below) committees stated in his witness statement:

“…NICE claims that both CBT and graded exercise therapy are supported by an adequate evidence base, however, the GDG relied on a very small number of controversial randomized control trials (RCTs). The patient selection criteria for participating in the trials were too wide and therefore allowed non-ME/CFS sufferers to participate… I do not believe that the NICE CFS/ME Guidelines are fit for purpose.” [Dr Ian Gibson MP, witness statement to the High Court, 21 July 2008:

www.angliameaction.org.uk/NICEJRdocs/Ian_Gibson_WS.pdf

Indeed, in his erudite witness statement rebuttal of the NICE evidence-base, specialist ME scientist Dr Neil Abbot, of ME Research UK, concluded:

“In my professional opinion, no rational reviewing body could have, on this rudimentary evidence base before it, recommended cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as the main treatments for CFS/ME patients. In effect, the RCT evidence base relied upon by NICE to produce Guideline 53 was of poor quality compared with the evidence bases available for other illnesses, and NICE should not have attributed it the usual weight attributed to RCT evidence in the hierarchy of evidence.” [Dr Neil Abbot, High Court witness statement:

www.angliameaction.org.uk//NICEJRdocs/Neil_Abbot_MERUK_WS.pdf

On such a highly questionable behavioural approach to ICD-ME (officially adopted in the UK: 2007); 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/Canadian_ME_Overview_A4.pdf

http://angliameaction.org.uk/docs/CanadianOverviewUK.pdf

And, on the matter of patient selection criteria for CBT/GET study RCTs relied upon by NICE, 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]. www.erythos.com/gibsonenquiry/index.html

 

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:  http://www.meactionuk.org.uk/ADDENDUM_to_Response_to_NICE.htm

And see: A NICE Conundrum? Margaret Williams, December 2008:

http://www.meactionuk.org.uk/A_NICE_Conundrum.htm

 

And see: ME/CFS UK versus US Margaret Williams, December 2008:

http://www.meactionuk.org.uk/UK_v_US.htm

 

And see: A NICE Dilemma? Margaret Williams, December 2008:

http://www.meactionuk.org.uk/A_NICE_DILEMMA.htm

 

And see: Prejudiced-based Medicine? Reasons for Judicial Review of the NICE Guideline on “CFS/ME” Margaret Williams, October 2008:

http://www.meactionuk.org.uk/Prejudice-based_Medicine.htm

 

And see: NICE GIGO (Garbage-In, Garbage-Out)? Margaret Williams, October 2007:

http://www.meactionuk.org.uk/NICE_-_GIGA.htm

 

And see: Evidence of cardiovascular problems in ME/CFS that NICE disregarded Margaret Williams, August 2008: www.meactionuk.org.uk/Cardiovascular.pdf

 

And see: Immunological, neuroendocrine and neurological evidence (including evidence of CNS inflammation) documented in ME/CFS that NICE chose to ignore in production of its Clinical Guideline 53 Margaret Williams, August 2008:

www.meactionuk.org.uk/Immunol_and_neuroendo.htm

 

And see: Background information and illustrations that CBT cannot improve ME/CFS which NICE disregarded Margaret Williams, July 2008:

www.meactionuk.org.uk/Background_Information_re_CBT.pdf

 

And see: Evidence that the Guideline Development Group that produced the NICE Guideline on CFS/ME (CG53) failed to fulfil its remit (particularly in relation to the potential dangers of Graded Exercise Therapy) Margaret Williams, July 2008:

www.meactionuk.org.uk/FACTS_re_GET.htm

 

And see: Professor Bruce Charlton – Infostat, cargo-cult science and the policy sausage-machine: NICE, CHI and the managerial takeover of clinical practice:

http://neuroscientist.com/bgcharlton/cargocult.html

 

Unfortunately, the Judicial Review of the process leading to the formation of CG53 did not result in the ‘CFS/ME’ Guideline being quashed (see link below to view the full Judgement) but this emphatically does not exonerate the Guideline as NICE have disingenuously claimed. The fact is that judicial reviews of this nature, as Justice Cranston pointed out (see link below), only look at narrow legal procedural matters - as courts cannot fully judge the science of such Guidelines. Moreover, the litigants contend that their case was subject to serious legal malpractice which led to their claim against NICE not being correctly put before the court and resulting in a mishearing. Formal complaints were therefore subsequently lodged by the litigants – part of which was upheld. In the meantime the growing biomedical evidence base further unmasks this grossly “unfit for purpose” NICE Guideline and patients increasingly suffer in its name. The struggle continues as patients and concerned professionals seek further ways in which to challenge CG53. For further information on such matters go to:

 

http://angliameaction.org.uk/docs/JusticeCranston17June2008.pdf

http://angliameaction.org.uk/NICEJRdocs/JUDGEMENT.pdf

www.meactionuk.org.uk

www.angliameaction.org.uk

www.nicemecourt.co.uk

 

 

 

6. Parliamentary ME Inquiry Group Findings:

See The Report of the UK 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 GSRME 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]

7. Concerns about the MRC and PACE Trial:

On 11th February 2010 a formal complaint was 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. It’s is joint funding by the Department for Work and Pensions (DWP) is viewed to be an unethical conflict of interest.

 

Since 1993, the giant US permanent health insurance company UNUM Provident 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 or have links to the medical and permanent health insurance industry. These psychiatrists insist – in defiance of both the World Health Organisation (WHO) ICD-10 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 WHO and caused a 2006 UK Parliamentary group of inquiry to caution thus:

 

“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 Group on the Scientific Research into ME (GSRME) Report – see section 6 below].

www.erythos.com/gibsonenquiry/index.html

 

In 1992, the medical-insurance-industry-linked 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 to Lord Drayson 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.

 

See: Magical Medicine: How to make a Disease Disappear and Ethical and Scientific Concerns about the MRC PACE Trial, both by Professor Malcolm Hooper, at:

www.meactionuk.org.uk/magical-medicine.htm

www.meactionuk.org.uk/MREC-complaint.htm




8. Concerns about CBT & GET:

 

Over twenty professional witnesses provided Statements in support of the Judicial Review of the NICE Guideline on “CFS/ME” heard in February 2009 in the High Court in London. They were specifically written in support of the attempt to have the Guideline quashed as “unfit for purpose” and they express concern about the recommendation by NICE that the only management of ME should be CBT and GET (the same interventions that are the subjects of the Medical Research Council’s PACE Trial).

 

There is an extensive literature from 1956 to date on the significant pathology that has been repeatedly demonstrated in ME/CFS (but not in “CFS/ME” or “chronic fatigue”); this can be accessed on the ME Research UK and ME Action UK websites at:

http://www.meresearch.org.uk/information/researchdbase/index.html

http://www.meactionuk.org.uk/Organic_evidence_for_Gibson.htm

 

According to Professor Nancy Klimas, for example, ME can be as severe as congestive heart failure and the most important symptom of all is post-exertional relapse (presentation at the ME Research UK International Conference held in Cambridge in May 2008).

 

Unique vascular abnormalities have also been demonstrated in ME/CFS, with markers of oxidative stress. Oxidative stress is caused by highly reactive molecules known as free radicals circulating in the bloodstream of people with ME/CFS and results in cell injury. Oxidative stress levels are raised in ME/CFS and are associated with clinical symptoms. (Kennedy G, Spence VA, McLaren M, Hill A, Underwood C, Belch JJF. Free Radical Bio Med. 2005;39:584-589).

 

Exercising muscle is a prime contender for excessive free radical generation (Niess AM, Simon P. Front Biosci. 2007 Sep 1;12:4826-38) and research has shown that many patients with ME/CFS may have an inflammatory condition and be in a ‘pro-oxidant’ state (Klimas NG, Koneru AO.  Curr Rheumatol Rep. 2007;9(6):482-7).

 

For more concerns and evidence surrounding the misguided use of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) see Statements of Concern about Cognitive Behavioural Therapy and Graded Exercise Therapy provided for the High Court Judicial Review of February 2009 and Documented Pathology seen in ME/CFS that contra-indicates the use of Graded Exercise Therapy, both by Margaret Williams, at:

www.meactionuk.org.uk/JR_Statements_-_extracts.htm

www.meactionuk.org.uk/Documented_pathology_seen_in_ME-CFS.htm

 

Dr Ian Gibson MP, former chairman of the House of Commons Science & Technology and Parliamentarians’ Inquiry into ME/CFS (see above) committees, for example, stated in his witness statement:

“…the guidelines understate the potential harm with graded exercise. The study by A Peckerman, J Lamanca et al, for example, found that in severe cases ME/CFS patients may also develop reduced circulation which may lead to heart conditions: so graded exercise may be potentially fatal for them.”

www.angliameaction.org.uk/NICEJRdocs/Ian_Gibson_WS.pdf

 

Also see:

-Is the Chronic Fatigue Syndrome an Exercise Phobia? A case control study. W C R Weir et al, Journal of Psychosomatic Research. Doi: 10.1016/j.psychores.2005.02.002.

-Is Physical Deconditioning a Perpetuating Factor in Chronic Fatigue Syndrome? A controlled study on maximal exercise performance and relations with fatigue, impairment and physical activity. E Bazelmans et al, Psychological Medicine, 2001, 31, 107-114.

-ME Patient Exercise – Consequences upon Brain Blood Flow. The Negative Effects of Exercise on an ME/CFS Dysfunctional Brain. Extracts from The Clinical and Scientific Basis of ME/CFS by Byron Hyde MD et al. ISBN: 0-969-5662-0-4. Available at: www.nightingale.ca and said extracts available at:

www.angliameaction.org.uk/docs/Dr-Byron-Hyde--SPECT-Scans--Post-Exercise--Brain-Blood-Flow.pdf

-Chronic Fatigue syndrome: Harvey and Wessely’s (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways. M Maes & F N M Twisk. BMC Medicine 2010, 8:35.

www.biomedcentral.com/1741-7015/8/35

-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; 326:55–60.

www.cfids-cab.org/MESA/Peckerman.pdf

A NOTE ON CBT/GET:

Like many biomedical ME specialists, AMEA recognises that secondary/co-morbid psychiatric complications, such as clinical depression, may arise with any long term physical illness, including ME, and require psychiatric interventions – including standard CBT.

However, AMEA and biomedical ME specialists do not agree with the approach set out by the UK Wessely School of psychiatrists or NICE ‘CFS/ME’ Guideline 53 that:


1. Unscientifically conflates primary physical illness with mental/behavioural illness.

2. Recommends inappropriate non-standard CBT be employed (to modify patients’ alleged false illness beliefs and alleged fear of exercise/symptoms) along with GET, including aerobic exercise, (to resolve alleged unnecessary unfitness and muscle-deconditioning).

3. Negligently refuses adequate specialised biomedical diagnostic and assessment techniques indicated in the scientific literature that demonstrate ME illness beliefs are not in fact false and that GET is contraindicated and potentially fatal.


Such an approach is not genuinely evidence-based and is contraindicated in the scientific literature. See, for example:

Statements of Concern about Cognitive Behavioural Therapy and Graded Exercise Therapy provided for the High Court Judicial Review of February 2009 by Margaret Williams at:

www.meactionuk.org.uk/JR_Statements_-_extracts.htm

 

Documented Pathology seen in ME/CFS that contra-indicates the use of Graded Exercise Therapy by Margaret Williams, at:

www.meactionuk.org.uk/Documented_pathology_seen_in_ME-CFS.htm

 

Is the Chronic Fatigue Syndrome an Exercise Phobia? A case control study. W C R Weir et al, Journal of Psychosomatic Research. Doi: 10.1016/j.psychores.2005.02.002.

 

Is Physical Deconditioning a Perpetuating Factor in Chronic Fatigue Syndrome? A controlled study on maximal exercise performance and relations with fatigue, impairment and physical activity. E Bazelmans et al, Psychological Medicine, 2001, 31, 107-114.

 

ME Patient Exercise – Consequences upon Brain Blood Flow. The Negative Effects of Exercise on an ME/CFS Dysfunctional Brain. Extracts from The Clinical and Scientific Basis of ME/CFS by Byron Hyde MD et al. ISBN: 0-969-5662-0-4. Available at: www.nightingale.ca and said extracts available at:

www.angliameaction.org.uk/docs/Dr-Byron-Hyde--SPECT-Scans--Post-Exercise--Brain-Blood-Flow.pdf

 

Chronic Fatigue syndrome: Harvey and Wessely’s (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways. M Maes & F N M Twisk. BMC Medicine 2010, 8:35.

www.biomedcentral.com/1741-7015/8/35

 

To use a comparative illustration: due to the distress of their long-term physical illness, Rheumatoid Arthritis patients may develop co-morbid depression and other secondary psychiatric problems and be offered CBT to help address these problems. The form of CBT they are given however does not seek to brainwash them into falsely believing they do not have joint pain/ inflammation, it is not given as a substitute for proper physical examination and treatment of the underlying/primary biomedical disease and neither is it given with advice to exercise without proper regard to signs, science and pain: such a perverse approach would be rightly condemned as unscientific and barbaric yet it is exactly analogous to what UK ME patients are being subjected to by the NHS.


 

9. 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 [i] below]

http://www.cdc.gov/media/transcripts/t061103.htm

 

For a referenced outline overview of key biomedical research findings up until 2009 see the summary at the end of this section – note that the numbered research references within it are listed in section 11 (Endnotes and References) at the end of this document [viii].

 

For a very graphical view of what happens when ME patients exercise see APPENDIX-1: M.E. Patient Exercise – Consequences upon Brain Blood Flow at the end of this document and at:

http://angliameaction.org.uk/docs/Dr-Byron-Hyde--SPECT-Scans--Post-Exercise--Brain-Blood-Flow.pdf

 

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; 60:466–471. 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 a summary of the documented involvement of viruses in ME/CFS see Documented involvement of viruses in ME/CFS by Margaret Williams, 30th December 2009. Available at:

http://meactionuk.org.uk/Documented-involvement-of-viruses-in-ME.pdf

 

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/

 

For international research & ME issues updates also see Co-Cure at: www.co-cure.org/

and Phoenix Rising at: www.aboutmecfs.org/  http://forums.aboutmecfs.org/

 

Also see the following key research papers/references:

 

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome. Mikovits JA, Dean M, Silverman RH et al. Science. 2009, 326:585-589.

www.sciencemag.org/cgi/content/abstract/1179052

www.wpinstitute.org/xmrv/index.html

 

Detection of MLV-related virus gene sequences in blood of patients with Chronic Fatigue Syndrome and healthy blood donors. Alter & Komaroff et al, PNAS, August 2010.

Doi: 10.1073/pnas.1006901107.

www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

 

Chronic Fatigue Syndrome and mitochondrial dysfunction. Sarah Myhill, Norman E Booth, John McLaren-Howard. Int J Clin Exp Med (2009) 2, 1-16.

www.ijcem.com/812001A.html

www.ijcem.com

 

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/jcp.2007.053553v1

 

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; 326:55–60.

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:

http://www.investinme.org/Documents/PDFdocuments/Martin%20Pall%20Book.pdf

http://www.amazon.com/Explaining-Unexplained-Illnesses-Fibromyalgia-Post-Traumatic/dp/078902389X

 

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://jcp.bmj.com/cgi/content/abstract/jcp.2007.050054v1

 

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://cfids-cab.org/MESA/Jason-7.pdf       http://www.co-cure.org/Jason-7.htm

 

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/information/publications/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, 27:615–626, 2006. Routledge. Copyright © Taylor & Francis Group, LLC. ISSN: 0739-9332 print / 1096-4665 online: DOI: 10.1080/07399330600803766.    http://www.cfids-cab.org/cfs-inform/Prognosis/jason.etal.06.txt

www.ingentaconnect.com/content/routledg/uhcw/2006/00000027/00000007/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/ComplexitiesofDiagnosis.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

www.amazon.com/Enteroviral-Mediated-Encephalomyelitis-Syndrome-Pathologies/dp/0789011271

 

Outline Overview of key facts and Biomedical Research findings up until 2009:

The renaming of ME to Chronic Fatigue Syndrome (CFS) in 1988, giving misplaced emphasis to “fatigue”, trivializes the substantial disability of the disease [1] – which can extend to the wheelchair or bed-bound requiring 24 hour care with severe cases presenting with paresis, seizures, intractable savage headaches and life threatening complications.

Amorphous definitions and diagnostic symptom criteria have contaminated study cohorts and corrupted research data [2-10].

ME may include clinical syndromes linked to infectious agents and toxic exposures [11-15] – including Epstein Barr virus, ciguatoxin 13, organophosphates and organochlorines [12-14]. ME has some similarities to Multiple-Sclerosis, Post-Polio-Syndrome and AIDS.

ME Prevalence estimates are 235-700 per 100,000 affecting all socio-economic and ethnic groups, and men and women of all ages [16-21] – more prevalent than AIDS, lung or breast cancer [19].

Disease impact research [22-26] – shows that quality of life is equivalent to late stage AIDS [17] [27], chronic obstructive lung disease [25] [28], heart disease and end stage renal failure [29].

Some patients experience recovery (average 7yrs [17]), some partially recover and a significant proportion (25% [20]) are permanently incapacitated [17-20] [22-23].

Documented and referenced clinical/research abnormalities include:

- Immune system signs and pathology: with chronic immune activation and dysfunction [24] [30-32]; retroviral infection [167, 168], enteroviral infection [34-41], EBV infection [42-47], HHV-6/7 infection [43] [45-50] and other infections with evidence of persistent viral infection [33], activation of the 2-5A anti-viral pathway [47] [51-56], low natural killer cells and cytotoxicity [33] [47] [54] [57-63], T-cell abnormalities [59] [61-62] [64-66], pro-inflammatory cytokines and inflammation [66-72], increased cell apoptosis (death) [73-74] and allergy [54] [75-77].

- Abnormal immuno-genetic expression & dysfunction [61] [66] [78-81] [114].

- Brain/Central Nervous System, including: objective measurement of dysfunction [54] [82-86] with deficits in working memory, concentration, information processing [87-95], autonomic function [96-98] (incl. neurally mediated hypotension and orthostatic intolerance); regional brain hypoperfusion abnormalities [99-106] by SPECT, white and grey matter abnormalities [106-112] by MRI, inflammation [66] [106-107] [113-114], hypomyelination [83] [113-114], neurotransmitter [115-116] [119] and metabolic dysfunction [117-121] by MRS/PET and abnormal spinal fluid proteins [122-123].

- Dysfunctional Endocrine System including: impaired activation of the hypothalamic-pituitary-adrenal (HPA) axis [124-131] and abnormalities of neuroendocrine-genetic expression [78].

- Heart and Circulatory System: hypoperfusion [54] [83] [99-106] [132-136], impaired vascular control [27] [134-137] (incl. abnormal response to acetylcholine), low blood volume [134-135], vasculitis [136-137] (incl. raised oxidative stress, inflammation and arterial stiffness [138-139]) and heart dysfunction [132] [135] [140-141].

- Muscular: structural and biochemical abnormalities [38] [68] [89] [142-148] including impaired muscle recovery after exercise [149-154] (exercise responsive gene expression abnormal, worsening after exercise [155]).

- Gastrointestinal dysfunction [156-158] including food intolerance [159-160] and IBS [156] [161].

- Mitochondrial dysfunction [38] [82] [125] [162-163] including abnormal mitochondrial associated gene expression 164 and ion transport channelopathy [155] [165-166].

The above is a very brief summary of what now amounts to thousands of international peer-reviewed scientific research papers documenting physical/biomedical pathology in ME patients[i]. The body of biomedical research findings continues to grow in spite of the psychiatric bias of the establishment and lack of funding for qualitatively excellent biomedical research. There is a desperate and very urgent need to fund more biomedical ME studies. Further information on such research is available using the endnotes / references below and via the AMEA ME Research and Links & Resources pages at:

www.angliameaction.org.uk

 

 

 

10. Useful Websites/Links/ Updates/Resources:

TRUSTED KEY RESOURCES FOR UK MYALGIC ENCEPHALOMYELITIS ACTIVISM:

 

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 Medical and Research Professionals:

www.investinme.org/index.htm

 

25% ME Group for the Severely Affected – the best UK adult support biomedical ME website:

www.25megroup.org/

 

Stonebird – Greg & Linda Crowhurst’s excellent UK documentation and campaigning platform for those with severe ME:

http://stonebird.co.uk/

 

Professor Malcolm Hooper – Extensive Documents-Archive/Contact at:

www.meactionuk.org.uk

 

Margaret Williams – Extensive Documents-Archive/Contact at:

www.meactionuk.org.uk

 

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 TrustThe Young ME Sufferers Trust website (UK):

www.tymestrust.org/

 

RiME – Biomedical Campaign & Letter-writing Group website:

www.erythos.com/RiME/

 

Phoenix Rising ME/CFS (Chronic Fatigue Syndrome) Forums/Website – Cort Johnson’s USA-based ME/CFS resource:

www.aboutmecfs.org/

http://forums.aboutmecfs.org/

 

Co-Cure – Best international ME/FM research/issues updates website:

www.co-cure.org/

 

[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

 

 

USEFUL ACTIVISM/CHARITES/ME-INFO (Alphabetical Order):

 

Alison Hunter Memorial Foundation - Australian biomedical ME website:

www.ahmf.org

 

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:

www.euro-me.org/

 

Georgina Downs – UK Pesticides Campaign:

www.pesticidescampaign.co.uk/

 

Professor Malcolm Hooper – Extensive Documents-Archive/Contact at:

www.meactionuk.org.uk

 

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:

www.investinme.org/index.htm

 

ME Action UK - The Main UK biomedical ME activists and documents archive website:

www.meactionuk.org.uk

 

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:

www.name-us.org/index.html

 

National ME/FM Action Network – Canadian ME/FM Organisation:

www.mefmaction.net

 

Osler’s Web (Hillary Johnson) – Important USA-based international ME website and resource:

http://oslersweb.com

 

Phoenix Rising ME/CFS (Chronic Fatigue Syndrome) Forums/Website – Cort Johnson’s USA-based ME/CFS resource:

www.aboutmecfs.org/

http://forums.aboutmecfs.org/

 

RiME – Biomedical Campaign & Letter-writing Group website:

www.erythos.com/RiME/

 

Sophia and ME – Excellent UK Sophia Mirza Memorial/ME-Information Website:

www.sophiaandme.org.uk

 

Stonebird – Greg & Linda Crowhurst’s excellent UK documentation and campaigning platform for those with severe ME:

http://stonebird.co.uk/

 

The ME and CFS Information Page Mary Schweitzer PHD – USA:

www.cfids-me.org

 

The National CFIDS Foundation – USA:

www.ncf-net.org

 

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 TrustThe Young ME Sufferers Trust website (UK):

www.tymestrust.org/

 

25% ME Group for the Severely Affected – the best UK adult support biomedical ME website:

www.25megroup.org/

 

Margaret Williams – Extensive Documents-Archive/Contact at:

www.meactionuk.org.uk

 

 

CLINICIANS/RESEARCHERS/DIAGNOSTICS (Alphabetical Order):

 

Dr David Bell MD – USA:

www.davidsbell.com

 

Biolab Medical Unit – UK/London:

www.biolab.co.uk

 

Dr Joseph Brewer MD – USA:

www.plazamedicine.com

 

CFS Research Foundation – Funds biomedical research/Dr Jonathan Kerr: website:

www.cfsrf.com/index.html

 

Dr Derek Enlander – USA:

www.enlander.com

 

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:

www.euro-me.org/

 

European Society for ME Research & Knowledge – Scientists think tank and discussion forum:

http://esme-eu.com

 

HHV-6 Foundation – USA-based Human Herpes Virus 6 research – Annette Whittemore:

www.hhv-6foundation.org

 

Professor Malcolm Hooper – Extensive Documents-Archive/Contact at:

www.meactionuk.org.uk

 

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:

www.drmyhill.co.uk

 

Dr Charles Lapp MD - Hunter-Hopkins Center – USA:

www.drlapp.net

 

Dr Benjamin Natelson – Pain & Fatigue Study Centre – USA:

www.painandfatigue.com/dr_natelson.html

 

Nightingale Research Foundation – Canadian ME Specialist Dr Byron Hyde:

www.nightingale.ca

 

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:

www.redlabs.be

 

Dr Robert Suhadolnik – USA:

http://astro.ocis.temple.edu/~rjs/home.html

 

The Cheney Clinic - Dr Paul Cheney MD – USA:

www.cheneyclinic.com

 

The Enterovirus FoundationDr John Chia – USA:

www.enterovirusfoundation.org

 

The Treatment Centre for Chronic Fatigue Syndrome (CFS)Dr Martin Lerner – USA:

www.treatmentcenterforcfs.com

www.cfsviraltreatment.com/index.html

 

Viral Immune Pathology Diagnostics (VIP DX) – USA:

http://vipdx.com/ 

 

Whittemore Peterson Institute for Neuro-Immune Disease – groundbreaking USA-based research on XMRV (retrovirus) Annette Whittemore, Dr Judy Mikovits, Dr Daniel Peterson:

www.wpinstitute.org

 

World Health Organisation (WHO):

www.who.int/classifications/icd/en/

 

 

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

 

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

 

 

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

 

CLINICAL AND SCIENTIFIC ARTICLES AND FILMSME 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

11. Endnotes and References:

 

[i] Do bear in mind there is a major problem with the existing body of research given the varying patient selection criteria involved and resultant confusion and controversy – see the following two papers for example:

What is ME? What is CFS? Information for Clinicians and Lawyers. Professor Malcolm Hooper.  www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

The Development of a Revised Canadian Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Case Definition. Professor Leonard A Jason et al. American Journal of Biochemistry and Biotechnology 6 (2): 120-135,SN 1553-3468. Available online at:

www.scipub.org/fullext/ajbb/ajbb62120-135.pdf

www.scipub.org/scipub/c4p.php?j_id=ajbb

And see: Cozzo J. JAMA 1989;261:5:697.

Under such circumstances there is an urgent need for a great deal more biomedical research into the multi-system neuro-immune degenerative disease that is Myalgic Encephalomyelitis/ME and AMEA strongly recommends you funding this in the UK via two excellent ME charities, ME Research UK and Invest in ME. Further information at the following links:

www.meresearch.org.uk/index.html

www.investinme.org/index.htm

[ii] For a round up of international ME/CFS blood-donor ban activity simply Google the subject or see ESME Think Tank Panel article at:

http://esme-eu.com/news/esme-think-tank-panel-call-to-ban-me-cfs-blood-donations-in-europe-article341-7.html

 

[iii] See, for example, Georgina Downs – UK Pesticides Campaign:

www.pesticidescampaign.co.uk/

[iv] See, for example, Research Studies into Electrosensitivity at:

http://www.es-uk.info/info/research.asp

And Electro sensitivity and Electro hypersensitivity – A Summary by Michael Bevington at: www.es-uk.info/news/20100415_es_and_ehs.asp

And see: The Gathering Brainstorm, Mark Anslow, The Ecologist at: www.buergerwelle.de/pdf/ecologist_wi-fi_article.pdf

[v] Another well-documented biomedical illness leading to serious disability and fatalities that has been maligned by anti-science vested interests. See for example: http://www.guardian.co.uk/world/2003/feb/04/iraq8

 

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

 

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

[viii] Outline Overview Research References (see section 9 above):

1. Cozzo J. JAMA 1989; 261:5:697.

2. Kennedy G, et al. Ann Epidemiol 2004;14:95-100.

3. Jason LA, et al. J Clin Psychol 1999;55:4:411-24.

4. Jason LA, et al. Biological Psychol 2002;59:1:15-27.

5. Hyde B. Handbook of CFS. J Wiley 2003.

6. Ramsay M, et al. Postgrad Med J 1979; 55:856-7.

7. Goodwin CS. Lancet 1981; Jan 3:37.

8. Chaudhuri A, et al. Neurology 1998;1:2:16-20.

9. Jason LA, et al. Neuropsychol Review 2005;15:1:29-58.

10. Aslakson E. Pres 8th IACFS Res Conf 2007.

11. Hooper M. Gibson UK Parliamentary Enquiry, 2006.

12. Chaudhuri A, et al. Neurology 1998;1:2:16-20.

13. Peam J. J Immun Immunopharma 1995; 15: 63-5.

14. Behan P. J Nutritional and Enviro Med 1996; 6:341- 50.

15. Marmion BP,et al. QJM 2005; 98:7-20.

16. Reyes M, et al. Arch Int Med 2003; 163: 1530-36

17. www.cdc.gov/cfs (US Centre for Disease Control).

18. Loblay R, et al. The Med J Australia 2002; 176: S28.

19. Carruthers BM, et al. JCFS 2003;11:1:9.

20. Ind Report UK Chief Medical Officer 2002; 6.

21. Speight N. Pres AHMF Clinical and Science Meeting 2001.

22. Ed BMJ 1978; (3 June): 1436-7.

23. Anderson MM, et al. J of Psycho Res 2004; 56:2:217-29.

24. Behan PO, et al. J Infection 1985;10 :211-22.

25. De Becker P, et al. Arch Intern Med 2000;160: 3270-7.

26. Van Heck GL, et al. JCFS 2002; 10(1): 17-35.

27. Abbot N, et al. InterAction: May 2004.

28. CDC Announce. Ref: AACFS October 2004.

29. Taylor RR. Am J of Occ Therapy 2004: 58: 35-43.

30. Campbell J, et al. The NZ Fam Physician 1987; 14: 51-4.

31. Lloyd A,et al. Med J Aus 1989;151:122-4.

32. Hassan IS, et al. Clin Immunol Immunopath 1998; 87: 60-7.

33. Landay AL, et al. Lancet 1991; 338: 707-12.

34. Dowsett EG, J Hosp Inf 1988; 11:103-15.

35. Archard LC, et al. JRSM 1988;81:325-31.

36. Hobbs JR, et al. Prot Biol Fluids 1990; 36: 391-8.

37. Cunningham L, et al. J Gen Virol 1990; 71: 1399-02.

38. Bakeit AM, et al BMJ 1992; 304:1010-12.

39. Bowles NE, et al. J Medicine 1993;24: 2: 145-60.

40. Clements GB, et al. J Med Virol 1995; 45:156-61.

41. Galbraith DN. J Gen Virology 1997; 78: 307-12.

42. Olsen GB, et al. J All Clin Immunol 1986; 78: 308-14.

43. Montoya J, et al. Pres 8th IACFS Research Conf 2007.

44. Lerner M. Pres 8th IACFS Research Conf 2007.

45. Glaser R. Pres 8th IACFS Research Conf 2007.

46. Ablashi R. Pres 8th IACFS Research Conf 2007.

47. Komaroff A. Pres 8th IACFS Research Conf 2007.

48. Sugino T. Pres 8th IACFS Research Conf 2007.

49. Levine S. Pres 8th IACFS Research Conf 2007.

50. Murovska M. Pres 8th IACFS Research Conf 2007.

51. Suhadolnick RJ, et al. Clin Infect Dis 1994; 18 (Supp): S996-S104.

52. Suhadolnik RJ, et al. J Interferon & Cytokine Research 1997; 17: 377-85.

53. DeMeirleir K et al Am J Med 2000; 108: 99-105.

54. Komaroff A. Pres AHMF Clinical and Science Meeting 2001.

55. Nijs J, et al. Med Hypoth 2004; 62:5:759-65.

56. Englebienne P. JCFS 2003:11:2:97-109.

57. Caliguri M, et al. J Immmunol 1987;139:3306-13.

58. Eby N, et al. Pub Karger, Basel, 1989:141-5.

59. Klimas N, et al. J Clin Microbiol 1990;28:6:1403-10.

60. Patarca R. JCFS 2000;6:3-4:69-107.

61. Steinau M et al. J Mol Med 2004.

62. Maher KJ. Clin Exp Immunol 2005; 142: 3: 505-11.

63. Fletcher M. Pres 8th IACFS Research Conf 2007.

64. Fletcher M, et al. JCFS 2000:7:3:65-75.

65. Cruess SE, et al. JCFS 2000:7:1:39-52.

66. Kaushik N, et al. J Clin Pathol 2005: 58: 826-32.

67. Bennet AL, et al. J Clin Immunology: 1997:17:160-6.

68. Buchwald D, et al. Ann Intern Med 1992: 116: 2: 103-13.

69. Boe B et al. J of Psychosomatic Research 2004: 56: 6: 633.

70. Miller BJ, et al. JCFS 1998;4(1):37-42.

71. Jones MG, et al. J Clinical Chemistry E-pub June 2005.

72. Gurbaxani B. Pres 8th IACFS Research Conf 2007.

73. Vojdani A, et al. J Int Med 1997;242:465-78.

74. Kennedy G, et al. J Clin Pathol 2004:57:8:891-3.

75. Strauss SE, et al. J Allergy Clin Immunol 1988;81:791-5.

76. Conti T, et al. Allergy 1996;51:124-7.

77. Nijs J, et al. Chest 2003:123:4:998-1007.

78. Vernon SD, et al. Disease Markers 2002; 18: 193-9.

79. Whistler T. Pres 8th IACFS Research Conf 2007.

80. Kerr J. Pres 8th IACFS Research Conf 2007.

81. Kerr J. J Clin Path 2005; 8: 860-3.

82. Goran A, et al. JNNP 1985;48:691-4.

83. Schwartz RB, et al. J Am Roentgen Ray Soc 1994; 162: 943-51.

84. Aiemionow V, et al. Clin Neuroph 2004;115:10:2372-81.

85. Saggini R, et al. J Neurol Sci 1998:154:1:18-25.

86. Paul LM. Gait Posture 2001::14(1):19-27.

87. Tiersky LA, et al. J Clin Exp Neuro 1997;19:560-8.

88. De Luca J, et al. J Neurology, Neurosurgery & Psychiatry 1997; 62: 151-5.

89. Campbell J. The NZ Family Physician 1987; 14: 51-4.

90. DeLuca J, et al. Arch Neurol 1993; 50: 301-4.

91. Sandman C. Biol Psych 1993; 618-23.

92. Marcel B, et al. Biol Psych 1996;40:535-41.

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Doi: 10.1073/pnas.1006901107.

 

 

 

12. About Anglia ME Action / Disclaimer:

ANGLIA ME ACTION (AMEA) is a UK-based medico-political campaign. The AMEA website is designed to encourage and assist medical professionals, politicians, journalists and public to press for genuine evidence-based research, care and treatment, based upon genuine science-based patient selection criteria, for the WHO-ICD-10-recognised biomedical multi-system illness known as  Myalgic Encephalomyelitis/ME.

AMEA DISCLAIMER - PLEASE NOTE: Anglia ME Action is in the business of medical politics but cannot and does not give medical advice to patients and carers. If you require such advice, AMEA strongly suggests that you seek it from qualified, informed and up-to-date specialist medical practitioners and not from this website.  AMEA is  not a social/ support group for patients.

AMEA UPDATES – PLEASE NOTE: Whilst Anglia ME Action endeavours to ensure that information on this website is correct, because it has limited resources however, AMEA cannot provide an up-to-the-minute bulletin-board and exhaustive fact-checking service. You are therefore urged to check and update information & references with other ME organisations etc listed on the AMEA Links & Resources page and elsewhere.

AMEA CONTACT – PLEASE NOTE: Unfortunately, because Anglia ME Action is a campaign platform with very limited financial resources, it is impossible to guarantee to read or respond to your emails. Notwithstanding this limitation, constructive comment can be sent to:

 

13.  Appendix-1. Brain Images: Exercise & Brain Blood Flow.

Acknowledgement and Thanks:

AMEA is grateful for the sterling work of former medical-legal researcher, Margaret Williams, and Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at Sunderland University, along with other contributors to the body of work listed/present on this website.

Most of their documentation is located on the ME Action UK website (see link below) which has been compiled by former NHS Radiographer, Stephen Ralph, under difficult circumstances as Stephen is himself very ill.

The ME community owes Malcolm, Margaret and Stephen much.

www.meactionuk.org.uk


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