Defending the Indefensible

Professor Simon Wessely attempts to defend what has already been shown to be indefensible, namely his own beliefs about the nature of ME/CFS, including his belief that graded exercise therapy (GET) has “an impeccable safety record” - Margaret Williams explains why this is indefensible

Harms associated with CBT and GET for ME

Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - By Tom Kindlon

Statistics and ME

Statistics and ME - Information about the article “Statistics and ME” by Professor Malcolm Hooper

“Grey” Information about ME/CFS Part 3: 1994

There is a wealth of important information about ME/CFS in the grey literature that has been largely ignored by those intent on denying the existence of ME/CFS as an organic disorder.

Using Cardiopulmonary Exercise Testing to Evaluate Fatigue and Post-Exertional Malaise in ME/CFS

The absence of reliable diagnostic laboratory tests or biomarkers presents significant problems for persons with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), treating physicians, and the ME/CFS research community alike. Typically ME/CFS diagnoses rely on self-report measures where patients describe the extent and duration of their fatigue and attendant symptoms either verbally or on a questionnaire.

Bursting Our Bubble - Norwegian Style

Ground-breaking research from Norwegian oncologists

The PACE Trial: An Expression Of Concern

A critique of the PACE trial by Douglas Frazer - "Essentially an unblinded trial, it appears to be falsely registered as a RCT, an example of “strawman design”, and published in breach of the Lancet's own requirements."

Ineffective NICE Treatments for ME

ME/CFS is (bio)logically explainable; Standard treatment is ineffective, and even potentially harmful

Chronic Fatigue Syndrome after Q fever

Q fever is a common and acute but rare chronic zoonosis caused by Coxiella burnetii. Its acute form manifests as atypical pneumonia, flu-like syndrome, or hepatitis. Some authors observed symptoms of chronic fatigue in a small number of patients after the acute phase of Q fever...

Interstitial cystitis and Chronic Fatigue Syndrome

ME/CFS is not the only illness which is being forced into a re-classification as a single somatoform disorder.

More evidence of inflammation in (ME)CFS

Unequivocal proof of inflammation in ME/CFS - read more

Why Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) may kill you:

Disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways may explain cardiovascular disorders in ME/CFS

Documented Involvement of Viruses in ME/CFS

It is notable (and quite incomprehensible) that the PACE Trial Investigators did not include virological testing of participants in their trial that is based on their theory that patients with “CFS/ME” are merely deconditioned.
Read this very interesting, thought-provoking and disturbing article about the documented involvement of viruses in ME/CFS.

It is an established fact that the MRC has a secret file on ME that contains records and correspondence since at least 1988 - click here

Can the MRC PACE Trial be justified?

The House of Commons Select Committee received seven representations about the MRC’s refusal to heed the biomedical evidence about ME/CFS. MPs found evidence of poor planning and of focusing on “politically-driven” projects that have diverted money away from top-quality proposals - read more.

Statements of Concern about CBT/GET provided for the High Court Judicial Review of February 2009

For the NICE Judicial Review many submissions were made expressing  concern about the recommendation by NICE that the primary management intervention for ME/CFS should be Cognitive Behavioural Therapy and Graded Exercise Therapy - read more.

The role of viruses in ME/CFS: What, if any, will be the effect of the discovery linking XMRV to ME/CFS on the MRC PACE Trial?

There is increasing awareness that the dysregulated immune system that is a hall-mark of ME/CFS allows multiple latent viruses and microbial agents to become reactivated.

Moreover, recent research has shown that even viruses which were hitherto believed not to persist after an acute infectious episode are capable of long-term viral persistence. Margaret Williams discusses this.

Click on the image on the left for more information.

Chronic Fatigue Syndrome: La Bête Noire of the Belgian Health Care System

Recently, the Belgian government has evaluated the outcome of the treatments at the CFS Centers. They concluded that a "rehabilitation therapy" with CBT/GET yielded no significant efficacy in the treatment of ME/CFS and that CBT/GET cannot be considered to be curative therapies.

Click on the image on the left for more information.

CBT and GET - Ineffective for ME

A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS

Click on the image on the left for more information.

DR. VINCE LOMBARDI of WHIITEMORE-PETERSON INSTITUTE, NEVADA,USA

From our 2009 Conference version of the Journal of IiME Volume 3 Issue 1.

WPI RESEARCHERS DISCOVER RETROVIRAL LINK TO CHRONIC FATIGUE SYNDROME

Scientists have discovered a potential retroviral link to ME.  Researchers from the Whittemore Peterson Institute (WPI), located at the University of
Nevada, Reno, the National Cancer Institute (NCI), part of the National Institutes of Health, and the Cleveland Clinic, report this finding online Oct. 8, 2009, issue of Science.

MEDICALLY UNEXPLAINED SYMPTOMS AND ME MUS and ME

From our Autumn 2008 Journal of IiME - Reasons why ME does not belong to the Medically Unexplained Symptoms category - click here

Recommended treatment of ME/CFS Often Detrimental

A press release from three Dutch ME organisations reveals CBT to lead to a deterioration in ME patients' condition.

Click on the image on the left for more information.

Caring for Seriously Ill ME Patients

From our Journal of IiME Vol 2 Issue 1- a survey from Norway helping explain how to manage severely affected people with ME - click here 

Dr Myhill et al have published a new paper on mitochondrial dysfunction in ME.

The importance of this paper is that it separates psychological fatigue from cellular fatigue and is a possible biomarker for any subsequent diagnostic test for ME which may be developed. The research helps in confirming the biochemistry of ME and provides even more proof of the organic nature of this illness.

Dr Myhill presented on mitochondrial dysfunction at our 2007 conference in London (the DVD may be ordered from here).

Click on the image on the left.

At our conference in May Dr Martin Lerner not only provided unique data in his impressive presentation but he also discussed his Energy Index Points Score Table which is an easy way for healthcare staff to monitor a patient's capability levels thus helping avoid over-exertion and monitoring of progress.

Dr Lerner's presentation can be seen on the conference DVD. Dr Lerner has given us permission to display this on the IiME web site - click here.

More information is available from Dr Lerner's site at http://www.treatmentcenterforcfs.com/.

from the December 2008 Newsletter

Dr David Bell has been involved in ME/CFS for many years and in this extract from his Lyndonville newsletter he explains mitochondrial disease and the type of secondary mitochondrial disease ME/CFS patients experience - the inability to sustain activity. He clearly illustrates why ME/CFS has nothing to do with deconditioning.

from the Journal of IiME Volume 2 Issue 1

An article which provides a good insight into the difficulties in caring for this group of ME patients in institutions. The normal rules of rehabilitation do not apply to ME patients and it is important to take the lead from patients. Patient experiences are very important and should be listened to.

from the Journal of IiME Volume 2 Issue 1 - by Dr Sidsel Kreyberg

An article from Margaret Williams and Professor Malcolm Hooper detailing the continuing misinformation being presented about ME.

April 2008 - by Margaret Williams/Malcolm Hooper

Comments on “Identification and treatment of symptoms associated with inflammation in medically ill patients”.

January 2008 - by Margaret Williams

From the Journal of IiME Vol 1 Issue 1

May 2007 - by Dr. Leonard Jason

An Investigation into Biochemical and Blood Flow Aspects of ME/CFS in Children

The aim of this investigation is to examine whether biochemical abnormalities similar to those already observed in adults with ME/CFS also exist in a group of children with the illness (in whom there is the possibility of long-lasting chronic ill-health).
The study will be based at the Vascular Diseases Research Unit, University of Dundee, which in the past 15 years has published more than 250 peer-reviewed scientific papers relating to inflammation and vascular disease, and over the past 4 years has been investigating ME/CFS in adults. The study on children is an extension of this work on adults, and fits in well with the UK Chief Medical Officer’s call in 2002 for further research in this field.

Dr John Gow of Glasgow University Dept of Neurology has also been studying gene expression in an exciting development with funding by ME Association and MERGE allowing the work to continue. The initial results from this have caused excitement with the hope that a diagnostic set of markers could be developed for ME.
See Characterisation of Differential Gene Expression in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)

The physiology of exercise intolerance in patients with myalgic encephalomyelitis (ME) and the utility of graded exercise therapy

From the IiME Response to the NICE Draft Guidelines

November 2006 - by S. Pierce and P.W. Pierce

From the IiME Response to the NICE Draft Guidelines.

October 2006 - by R. Mitchell and V. Mitchell

Dr Kann of The Institute of Cardiovascular Research at University of Dundee has been involved in a number of studies listed here -

• Enhanced sensitivity of the peripheral cholinergic vascular response in patients with chronic fatigue syndrome
   
• Prolonged acetylcholine-induced vasodilatation in the peripheral microcirculation of patients with chronic fatigue syndrome
   
• Acetylcholine-mediated vasodilatation in ME/CFS patients: the role of nitric oxide, prostacyclin and endothelium-derived hyperpolarising factor
   
• Peripheral cholinergic function in humans with chronic fatigue syndrome, Gulf War syndrome and with illness following organophosphate exposure
   
• Focal and global endothelial function and their association with arterial stiffness

From the August newsletter
Statistics on Disabled Living Allowance and Incapacity Benefit for UK people with ME.

Pat Fero's update on the Whittemore-Peterson Institute - August 2007

Produced by Dr. Hyde for the Gibson Inquiry and the Invest in ME - ME/CFS  Conference 2007.

A description of what ME is and what it isn't.  Click on the image to the left open this very useful document.

Click here to read more.

December 2001 by E.P.Marshall, Margaret Williams and Malcolm Hooper

Click here to read more.

Designed to support M.E. sufferers who choose not to attend the current NHS Chronic Fatigue Syndrome/Myalgic Encephalomyelitis clinics which have been set up across the country.

Click here to read more.

The presentations from the International ME Conference in London during May 2006 have now been adapted and published in the Journal of Clinical Pathology.

Click here to read more.

Dr. Byron Hyde's Little Red Book

Produced by Dr. Hyde for the Invest in ME - ME Conference 2006.

A description of what ME is and what it isn't.  Click on the image to the left open this very useful document.

Many thanks to ME Research UK for allowing us to print this upbeat status of progress in biomedical research. The last paragraph of this article is telling and describes how we feel at IIME - working with the national biomedical charity for ME. Click on MERGE for a link to their excellent site.

From the Journal of Chronic Fatigue Syndrome
A description of the important Canadian definition for diagnosis of ME.

From Invest in ME articles
A summary of the lecture by Professor Hooper organised by Invest in ME in 2005.