Wednesday, 24 October 2018

A Statement in Support of Cochrane

http://www.virology.ws/2018/10/23/a-statement-in-support-of-cochrane/

23 October 2018

By David Tuller

Cochrane has decided to temporarily withdraw a review of exercise therapies for the illness variously known as ME, CFS, ME/CFS and CFS/ME. The review reported that exercise therapy is effective in treating the illness—a finding that has provided unwarranted support for recommendations that patients should undergo the intervention known as graded exercise therapy. Yet Cochrane has found merit in complaints about serious scientific missteps and has asked the review team to respond accordingly.

Supporters of the approach to treatment endorsed by the Cochrane review have portrayed the decision for temporary withdrawal as a loss for science and an unfortunate capitulation to pressure from a vocal patient lobby. But patients have criticized the review not because they harbor anti-scientific views or are prejudiced against psychiatry. Rather, they have expressed reasonable and convincing concerns about the poor methodological choices made by the reviewers, who to date have not offered robust explanations.

We therefore believe it is important to voice our support for Cochrane’s effort to seek clarity on the issues raised not only by patients but by many others as well, including scientists, clinicians and academics. Here are some key reasons why we agree with Cochrane’s decision:

1) The PACE trial, the largest of the eight studies included in the Cochrane review, has been internationally discredited because of its outcome-switching and many other flaws. Yet the review rated the trial as being at “low risk” of reporting bias. In a recent open letter to The Lancet, more than 100 experts, including many of us, expressed concern about PACE’s “unacceptable methodological lapses.”

2) Like PACE, the other studies in the Cochrane review are open label trials relying on subjective outcomes. Trials with this design are fraught with bias, which is why they are no longer considered as reliable evidence for making decisions and developing recommendations for biomedical treatment. The review ignored objective outcomes from exercise interventions, which have generally failed to confirm subjective reports of benefits.

3) Five of the studies included in the Cochrane review used the Oxford criteria, a case definition that only requires six months of unexplained fatigue to render a diagnosis. This case definition generates heterogeneous samples that likely include many people suffering from undiagnosed depression, anxiety disorders and other fatiguing conditions rather than the devastating illness in question. When the US Agency for Healthcare Research and Quality removed Oxford criteria studies from its own analysis, the agency found no evidence to support recommendations for graded exercise therapy. This re-analysis also reported more harms among those assigned to such treatment than among those in the comparison groups.

4) Six of the studies included in the Cochrane review tested graded exercise therapy as a treatment for the illness. This intervention has been predicated on the theory that the ongoing symptoms are not caused by underlying pathophysiological processes but by a fear of activity, which in turn leads to sedentary behavior and severe deconditioning. Yet there is no legitimate scientific evidence to support this theory. A 2015 report from the US Institute of Medicine (now the National Academy of Medicine) concluded that ME/CFS is not driven by psychological factors; biomedical research from major medical centers in the US, UK, Australia and elsewhere supports that conclusion.

5) Given the many methodological and scientific problems with the Cochrane review, its conclusion that exercise therapy is effective cannot be taken at face value. This is of particular concern because it is widely accepted that the cardinal symptom of the illness is post-exertional malaise, or what the Institute of Medicine report called “exertion intolerance.” In other words, patients can suffer prolonged relapses even after engaging in minor physical activities, suggesting that graded exercise therapy is contra-indicated and could cause harm.

The reviewers need to provide substantive and satisfactory answers to Cochrane’s legitimate methodological and scientific questions. If they are unable or unwilling to do so, the review should be permanently withdrawn.


Vincent R. Racaniello, PhD
Professor of Microbiology and Immunology
Columbia University
New York, New York, USA
Host of Virology Blog

Christopher Armstrong, PhD
Bio21 Molecular Science & Biotechnology Institute
Department of Biochemistry and Molecular Biology
University of Melbourne
Melbourne, Victoria, Australia

James N. Baraniuk, MD
Professor of Medicine
Georgetown University
Washington, DC, USA

Lucinda Bateman, MD
Medical Director
Bateman Horne Center
Salt Lake City, Utah, USA

Jonas Bergquist, MD, PhD
Professor of Analytical Chemistry and Neurochemistry
Biomedical Centre
Uppsala University
Uppsala, Sweden

Charlotte Blease, PhD
Fulbright and Marie Curie Research Fellow
General Medicine and Primary Care
Beth Israel Deaconess Medical Center
Harvard Medical School
Boston, Massachusetts, USA
School of Psychology
University College Dublin
Dublin, Ireland

Bela Chheda, MD
Center for Complex Diseases
Mountain View, California, USA
Member, The ME/CFS Collaborative Research Center at Stanford
Palo Alto, California, USA

Todd E. Davenport, PT, DPT, MPH, OCS
Professor & Program Director
Thomas J. Long School of Pharmacy & Health Sciences
Department of Physical Therapy
University of the Pacific
Stockton, California, USA

Ronald W. Davis, PhD
Professor of Biochemistry and Genetics
Stanford University
Stanford, California, USA

Kenneth J. Friedman, PhD
Associate Professor of Physiology and Pharmacology (retired)
New Jersey Medical School
University of Medicine and Dentistry of New Jersey
Newark, New Jersey, USA

Robert F. Garry, PhD
Professor of Microbiology and Immunology
Tulane University School of Medicine
New Orleans, Louisiana, USA

Rebecca Goldin, PhD
Professor of Mathematics
George Mason University
Fairfax, Virginia, USA

Alan Gurwitt, MD
Clinician in Private Practice (retired)
Associate Clinical Professor
Yale Child Study Center (retired)
New Haven, Connecticut, USA
Associate Clinical Professor
University of Connecticut Dept of Psychiatry (retired)
Storrs, Connecticut, USA
Lecturer, Harvard Medical School (retired)
Boston, Massachusetts, USA

Paul M. Guyre, PhD
Professor of Microbiology and Immunology
Geisel School of Medicine at Dartmouth
Hanover, New Hampshire, USA

Maureen Hanson, PhD
Liberty Hyde Bailey Professor
Department of Molecular Biology and Genetics
Cornell University
Ithaca, New York, USA

H. Craig Heller, PhD
Professor of Biology
Stanford University
Stanford, California, USA

Brian M. Hughes, PhD, FPsSI
Professor of Psychology
National University of Ireland Galway
Galway, Ireland

David L. Kaufman, MD
Center for Complex Diseases
Mountain View, California, USA
Member, The ME/CFS Collaborative Research Center at Stanford
Palo Alto, California, USA

Betsy Keller, PhD, FACSM
Professor of Exercise & Sport Sciences
Ithaca College
Ithaca, New York, USA

Eliana Mattos Lacerda
Assistant Professor of Epidemiology
Clinical Research Department
Faculty of Infectious and Tropical Diseases
London School of Hygiene and Tropical Medicine
London, England, UK

Bruce Levin, PhD
Professor of Biostatistics
Columbia University
New York, New York, USA

Susan Levine, MD
Clinician in Private Practice
New York, New York
Visiting Fellow
Cornell University
Ithaca, New York, USA

Alan R. Light, PhD
Professor of Anesthesiology
Professor of Neurobiology and Anatomy
University of Utah
Salt Lake City, Utah, USA

Ami Mac, MD
Director of Translational Medicine
Stanford Genome Technology Center
Palo Alto, Michigan, USA

David F. Marks, PhD
Editor
Journal of Health Psychology
& Health Psychology Open
London, England, UK

Marlon Maus, MD, DrPH, FACS
DrPH Program Director
School of Public Health
University of California, Berkeley
Berkeley, California, USA

Neil R McGregor, BDS, MDSc, PhD
Clinical Associate Professor
Faculty of Medicine, Dentistry and Health Sciences
Bio21 Molecular Science & Biotechnology Institute
University of Melbourne.
Melbourne, Victoria, Australia

Patrick E. McKnight, PhD
Associate Professor of Psychology
George Mason University
Fairfax, Virginia, USA

Jose G. Montoya, MD, FACP, FIDSA
Professor of Medicine
Division of Infectious Diseases and Geographic Medicine
Stanford University School of Medicine
Stanford, California, USA
Director, Palo Alto Medical Foundation Toxoplasma Serology Laboratory
National Reference Center for the Study and Diagnosis of Toxoplasmosis
Palo Alto, California, USA

Elisa Oltra, PhD
Professor of Molecular and Cellular Biology
Catholic University of Valencia School of Medicine
Valencia, Spain

Roshini C. Pinto-Powell, MD, FACP
Associate Professor of Medicine and Medical Education
Associate Dean of Students and Admissions
Co-director of On Doctoring
Co-director of Geriatrics and Ambulatory Medicine
Geisel School of Medicine at Dartmouth
Hanover, New Hampshire, USA

Deborah Rose, MD
Emeritus Adjunct Assistant Clinical Professor of Psychiatry
Stanford University School of Medicine
Stanford, California, USA

Peter C. Rowe, MD
Professor of Pediatrics
Johns Hopkins University School of Medicine
Baltimore, Maryland, USA

Donald R. Staines, MBBS, MPH, FAFPHM, FAFOEM
Clinical Professor
Menzies Health Institute Queensland
Co-Director, National Centre for Neuroimmunology and Emerging Diseases
Griffith University
Gold Coast, Queensland, Australia

Philip B. Stark, PhD
Professor of Statistics
University of California, Berkeley
Berkeley, California, USA

Leonie Sugarman, PhD
Emeritus Associate Professor of Applied Psychology
University of Cumbria
Carlisle, England, UK

Ronald G. Tompkins, MD, ScD
Sumner M Redstone Professor of Surgery
Harvard Medical School
Boston, Massachusetts, USA

David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley
Berkeley, California, USA

Mark VanNess, PhD
Professor of Health, Exercise & Sports Sciences
University of the Pacific
Stockton, California, USA
Workwell Foundation
Ripon, California, USA

Wenzhong Xiao, PhD
Assistant Professor of Bioinformatics
Harvard Medical School
Boston, Massachusetts, USA

Carolyn Wilshire, PhD
Senior Lecturer
School of Psychology
Victoria University of Wellington
Wellington, New Zealand

Tuesday, 16 October 2018

A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

[Professor Hooper’s peer-review comments were written to indicate the accurate situation that now obtains concerning the PACE trial raw data. People can judge for themselves if his comments were accepted by the BMJ by looking at their updated version of “Best Practice on CFS” released in September 2018.]

A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

Professor  Malcolm Hooper          24th June 2018


NOTE:  I was asked by the BMJ Section Editor (BMJ Best Practice and BMJ Learning) to provide a peer review of Professor James Baraniuk’s document on “CFS”, to which I agreed. My comments below relate to the version sent to me. In my opinion, it indicated how dangerous the medical education programme about ME/CFS is in the UK. This was borne out by my face-to-face discussion with Professor Baraniuk himself on 1st June 2018 in London: he confirmed to me that his original report had already been sent by the BMJ to other referees and that he had received 156 comments which he was instructed had to be incorporated in his report. It was plainly obvious that those comments had been included in the version sent to me. Professor Baraniuk assured me that I should go ahead and respond as I wished, so it seems he knew his report was not as he intended it to be. In telephone discussions with the BMJ Section Editor, it was stressed to me that the BMJ had to have (quote) “equality”.

Current BMJ Best Practice for CFS/ME (October 2018):

My Review

My response to reading this long document of 102 pages is such that I am unable to carry out the review by simple annotations or minor additions to it.

I am grateful for the invitation to respond by means of a single document that sets out my major concerns which I hope the editor(s) will find helpful.


1.              Introduction

The document is far too long if it is intended to be a BMJ Best Practice reference tool help GPs and others to quickly diagnose and support their patients presenting with ME/CFS.

As it stands, it is not fit for purpose.  The document is badly presented: it needs to be clear and factually accurate.

It lacks focus and any critical awareness of the issues under consideration.

It shows little understanding of the latest research, or the social and political considerations (eg. access to social security payments) that patients and informed clinicians feel so strongly about.

The confusion and complexity of the Best Practice document is far from satisfactory and in need of a thorough overhaul.

It is a wasted opportunity to clarify a situation that has evaded medical education for the last three decades.


2.            The Title

The report is entitled “Chronic Fatigue Syndrome” but throughout the text the term “CFS/ME” is used, yet the name myalgic encephalomyelitis does not even feature in the title.

Myalgic Encephalomyelitis (ME) has been classified as a neurological disorder by the World Health Organisation (WHO) in its International Classification of Diseases (ICD) since 1969, but there is no mention of this anywhere in the document.

Throughout the document there is confusion about terminology (ME, CFS/ME, fatigue) but it is essential to be aware that the terms are not clinically interchangeable.

On pages 11, 19, 22, 23, 28, 30, 51 and 102, Baraniuk refers to “CSF/ME”, which appear to be typographical errors, since cerebrospinal fluid (CSF) is not being discussed.


3.            Historical perspective

The term myalgic encephalomyelitis was coined in 1955 (Lancet 1955:394-395) and in 1969 it was formally classified by the WHO as a neurological disorder; it was accepted by The Royal Society of Medicine as a distinct disease in 1978; in 1987 the term “chronic fatigue syndrome” was introduced at a meeting of CDC scientists for political, not medical reasons, at which it was decided to change the name from ME to CFS and “CFS” appeared in publications from 1988 onwards. 

In 1992 the term “CFS” was included in ICD-10 as a synonym for ME (referable only to ME at G93.3), but in the UK, a group of psychiatrists intended to eradicate the neurological disease ME and introduced the term “CFS/ME” (in that order, as distinct from “ME/CFS”) with their stated intention of dropping “ME” from “CFS/ME” when expedient and then reclassifying “CFS” as a behavioural disorder (BMJ 2003:326:595-597).

In the UK, recruitment for the PACE Trial began in 2004 and the Patient Clinic Leaflet stated:  “Chronic fatigue syndrome” is “also known as postviral fatigue syndrome, myalgic encephalomyelitis (ME) or myalgic encephalomyelopathy….Medical authorities are not certain that CFS is exactly the same illness as ME but until scientific evidence shows that they are different they have decided to treat CFS and ME as if they are one illness”. 

To complicate things even further, despite his having received ethical approval and funding to include ME in the clinical trial, following publication in 2011 of selective PACE Trial results in The Lancet, the Chief Principal investigator, psychiatrist Professor Peter White, wrote to Richard Horton, editor-in chief of The Lancet, denying outright that the PACE Trial had been studying patients with ME: “The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME”.

CFS came to be applied to many different things and considerably broaden the meaning of CFS/ME making it virtually meaningless. Hence, it allowed consideration of other chronic infections, EBV and other herpes viruses, lyme, chlamydia, rickettsia, some vaccines, eg Hep B and latterly HPV and other intracellular organisms eg brucellosis, chemical and environmental toxins, organophosphates, Gulf War Syndrome, Aerotoxic Syndrome, some metals etc. This is ‘confusion worse confounded.’

Clinically, ME is a separate disorder from what is now termed CFS or “CFS/ME”: ME is a recognisable post-enteroviral disease with specific features; it may also follow vaccinations (for which significant evidence already exists and more evidence is emerging).  However, there are a number of states of chronic fatigue which now fall under the “CFS/ME” umbrella and the resultant confusion is responsible for the heterogeneity of the patient population and hence the diverse research findings.

Unless the report author provides the contextual background, he affords a disservice not only to the physicians he is endeavouring to educate but – more importantly -- to those patients who depend on those clinicians.


4.  The way forwards

The term “CFS/ME” now has come to mean a behavioural disorder and this report repeatedly portrays CFS as deconditioning which can be effectively treated by cognitive behavioural therapy (CBT) and graded exercise therapy (GET), but there is no evidence whatsoever of deconditioning in patients with ME/CFS.  If this whole document is not based on ME/CFS as a neurological/neuroimmune disorder, then it is falsely grounded.

The report does mention biomedical research, but it appears to look on it sceptically, and the take-home message is clear: “Patients should be educated on how secondary physical deconditioning can emerge due to increased resting and activity restriction” (page 76).  This is misleading and it perpetuates the widely-disproven psychosocial dogma that “CFS/ME” is a mental disorder.

It is essential to gain the immediate attention of the reader seeking up-to-date information, so it would be better to start off with a high impact paragraph such as:
“Studies suggest that there is a risk of earlier mortality in ME/CFS and UK Coroners have recorded ME as the cause of death.  ME is a serious, disabling, chronic neuroinflammatory disorder: as long ago as August 2004 the US CDC added it to its top priority list of emerging infectious diseases.  It is not a behavioural disorder; it is not a form of chronic fatigue (which is not the same as chronic fatigue syndrome as listed in ICD-10 at G93.3), nor is it a form of depression and most patients have no psychiatric disorder. There is a state of chronic, low-grade immune activation, with abnormal T-helper/T-suppressor cells and extremely low NK cell numbers/function; brain abnormalities have been proven, as have neuroendocrine abnormalities. ANS dysfunction is integral to the diagnosis, as is disordered gene expression (important in energy metabolism – metabolomics have convincingly demonstrated defects in pathways converting sugars, lipids and amino acids into energy https://www.youtube.com/watch?v=VprqU9knS4Y). There is evidence of biochemical dysregulation in the 2-5A synthetase/RNASE L pathway (ie. an abnormally elevated anti-viral response). Cardiovascular abnormalities are seminal (including altered brain perfusion, reduced cardiac mass and low circulating blood volume), as is an abnormal response to exercise, with muscle weakness (enteroviral sequences being found in muscle), as well as evidence of impaired oxygen delivery to muscles, with recovery rates for oxygen saturation being 60% lower than in normal controls (Kevin K McCully  et al. Clinical Science 1999:97:603-608). Since 2000, patients with ME have been advised to consider taking legal action against health professionals when inappropriate exercise is prescribed. (ME Association). Inability to tolerate medication is well-documented as being virtually pathognomonic (Professor Charles Poser, Department of Neurology, Harvard Medical School, Dublin International Meeting on ME/CFS, 18th-20th May 1994, World Federation of Neurology). There is high occurrence of allergies and hypersensitivities.  25% of patients with ME are severely affected and are bed/house-bound.  80% of patients do not get better: published CDC statistics show only 4% in remission (not recovery) at 24 months (US CDC CFS Programme Update, 29th August 2001)”.

Physicians need to be presented right from the beginning of the document with a clear list of key physical symptoms, but as it stands, the document fails to do so and the author focuses on cognitive problems.  He does not mention immune, cardiovascular, neuroendocrine or gastro-intestinal symptoms until much later in the document, whereas from the outset there needs to be a prominent box listing the cardinal symptoms; these include:

post-exertional malaise (PEM); exhaustion; muscle pain and weakness; abdominal pain; diarrhoea; balance disturbance/dizziness; shortness of breath; palpitations; joint pain; easy bruising; allergies/hypersensitivities to foods previously tolerated; chemical sensitivities (including to therapeutic drugs); frequency of micturition including nocturia; visual problems; flushing (not the same as hot flushes); emotional lability; lack of restful sleep and cognitive problems.  Pain may be intractable but it may sometimes be absent; hair loss may be total or partial.


To read the rest of the document, please go to –



Wednesday, 10 October 2018

Faultless before the presence of His glory

http://bible.christiansunite.com/Morning_and_Evening/chme1010.shtml

C H Spurgeon's Morning Devotional for 10th October

"Faultless before the presence of His glory."

Jude 24

Revolve in your mind that wondrous word, faultless!" We are far off from it now; but as our Lord never stops short of perfection in His work of love, we shall reach it one day. The Saviour who will keep His people to the Lend, will also present them at last to Himself, as "a glorious church, not having spot, or wrinkle, or any such thing, but holy and without blemish." All the jewels in the Saviour's crown are of the first water and without a single flaw. All the maids of honour who attend the Lamb's wife are pure virgins without spot or stain. But how will Jesus make us faultless? He will wash us from our sins in His own blood until we are white and fair as God's purest angel; and we shall be clothed in His righteousness, that righteousness which makes the saint who wears it positively faultless; yea, perfect in the sight of God. We shall be unblameable and unreproveable even in His eyes. His law will not only have no charge against us, but it will be magnified in us. Moreover, the work of the Holy Spirit within us will be altogether complete. He will make us so perfectly holy, that we shall have no lingering tendency to sin. Judgment, memory, will-every power and passion shall be emancipated from the thraldom of evil. We shall be holy even as God is holy, and in His presence we shall dwell for ever. Saints will not be out of place in heaven, their beauty will be as great as that of the place prepared for them. Oh the rapture of that hour when the everlasting doors shall be lifted up, and we, being made meet for the inheritance, shall dwell with the saints in light. Sin gone, Satan shut out, temptation past for ever, and ourselves "faultless" before God, this will be heaven indeed! Let us be joyful now as we rehearse the song of eternal praise so soon to roll forth in full chorus from all the blood-washed host; let us copy David's exultings before the ark as a prelude to our ecstasies before the throne.

Thursday, 4 October 2018

The impact of profound Multiple Chemical Sensitivity in Severe ME

By Greg Crowhurst

https://25megroup.org/2311-2

A Painfully Nuanced Life: The impact of profound Multiple Chemical Sensitivity in Severe ME.

(Published in the latest edition of “MCS Aware Magazine”)

‘How can I convey to you that I live in a totally different world than you, even if I am in the same room as you, even if you appear to be in the same physical space as me, believe me I am not experiencing anything in the same way as you.’

This is a very short extract, from my new book: ‘Caring for ME’. It is a quote from my wife.

I am sure that everyone who experiences MCS can relate to what she is saying. Suddenly when you develop MCS, a whole invisible world, previously unknown and unimagined, opens up. Smells and chemicals that others tolerate or do not notice, perfumes that they adore, become a nightmare for you.

In the most extreme cases, it cuts people off completely from normality as it was known, on every level, leaving them totally isolated in a world that torments or harms them. Their symptoms are very painful and difficult to manage.

Suddenly you are in danger from letters in the mail, which often come doused in perfume, from shopping in bags covered in perfume, especially if it delivered via a home delivery scheme, from the fresh air even, saturated by laundry conditioners, barbecue smoke, deodorants that give you a severe headache or cause you to be nauseous, develop rashes and severe symptoms such as throat paralysis.

Suddenly your world becomes painfully nuanced by other people’s lives, in ways that you simply could not have imagined and which those who perpetrate the problem cannot imagine either!

MCS makes an impossible life a nightmare. I have had to become very good at asking any tradesman who has to visit, not to wear any aftershave or perfumed product.

If someone pats our irresistibly cute Corgi, who goes around wagging his tail and making eyes at everyone, it’s horrifying if they are wearing perfume. Hours of torment can follow.

We have not been able to find a mask that my wife can tolerate, her skin is so painful and sore to touch that she cannot bear the pressure. One that we did order had to be hung on the line for days, it smelled so much and was still unusable, sadly.

If I dare go anywhere, I need to shower and change very, very quickly.

MCS; it is a disabling lonely experience.

Into this world, the carer is thrown, having to learn what is unseen. Life with a person with MCS demands that you become acutely aware and sensitive, that you develop skills and practices in order to live with or help the other person to deal with all that is required. Not easy, especially when you cannot even smell the scent that your wife is getting so disturbed by, the one that is going to cause a devastating deterioration in her health and much more disturbance to an already painful and difficult life.

My new book is about caring for people with multiple sensitivities to chemicals, noise, light, movement, touch, food and the host of other agonising; all, disabling symptoms, that are found in Severe ME, yet are so often unseen and unknown by the normal world.

Many people do not have a clue how to approach someone safely. I have been caring for my wife full time for the last 25 years, I am still learning.

How to provide the best care then? It is only possible, we have discovered, by taking a moment by moment approach, seeing what is possible in each moment, dealing with issues that come up as and when it is possible – some moments are too incredibly difficult and painful to achieve anything. Even your presence with the person may be too much. In all moments the greatest possible tenderness and awareness, on the part of the carer is required.

This book is witness to a secret, hidden, tormented existence and unimaginable, intractable suffering, that never ends. That is its starting point. The book is part information, part a journey of self-discovery, through questions designed to challenge and hopefully affirm the carer, helping them identify areas they may need to develop further. I have answered many of the questions myself, to encourage and enable.

“Caring For ME” is a little pocketbook of encouragement and affirmation hopefully for difficult days and happier days alike.

By Greg Crowhurst

http://stonebird.co.uk/CARE/index.html 

https://www.mcs-aware.org/mcs-magazine

Monday, 1 October 2018

Hospital Booklet

Strange as it may sound to some, one of the worst places for a person with ME to be is a hospital, not least because it often leads to a deterioration in health and an increase in symptoms. The noise, light, use of chemicals, a higher risk than usual of catching bugs / infections, and a general lack of understanding about ME, can all cause major problems.

If hospital treatment – either as an inpatient or an outpatient – becomes absolutely necessary, The Grace Charity for ME (www.thegracecharityforme.org) has produced a helpful booklet entitled “Information for patients and hospital staff regarding treatment of patients with ME (Myalgic Encephalomyelitis)”. The booklet includes information about ME and hospital environments, chemicals and drugs (including anaesthetics), surgery, exercise and ME, and diet and allergies.

To download the booklet as a pdf file –


To download as a Word document –