A REVIEW OF THE 2018 EDITION OF THE ME ASSOCIATION CLINICAL AND RESEARCH GUIDE FOR ME/CFS

Stonebird :
A REVIEW OF THE 2018 EDITION OF THE ME ASSOCIATION CLINICAL AND RESEARCH
GUIDE FOR ME/CFS
Dr Charles Shepherd and Dr Abhijit Chaudhuri

The MEA recently kindly sent me their "Purple Book" for review. It is so good that my well-thumbed copy now occupies a privileged, permanent place beside my computer. I have only had it two days and cannot live without it!

If you have ME then this is a profoundly useful overview of the disease.

If you want to research into or know more about ME, then you will want this treasure trove of information with its stunning coverage of Terminology, Epidemiology and co-morbidity, Medical Research, Management including pharmacological and non-pharmacological treatments, Prognosis, just to name a few of the areas .

The famous Purple Book is a gripping read!

Are you confused about the possible role of Epstein-Barr virus/glandular fever, Parovirus, Post-Poliomyelitis, Giardia, HHV6 in ME ? Here these complex issues are laid out for you in a beautiful concise , easy to read way. To present information as clearly as this is a stunning achievement.

Likewise it is one thing quoting “Immune System Dysfunction” or “Muscle Dysfunction” or “Central Nervous System Dysfunction” or “Neurological Dysfunction” in ME, as we often do, but what exactly do those things involve? Again this book makes a fascinating and essential read.

Surely anyone reading the Purple Book would shake their heads in utter disbelief that the “abnormal illness belief paradigm” has managed to exert so much deadly influence, for so many decades.

Quietly dismissive of psychiatric causation, the book is packed to the rafters with evidence to the contrary, evidence that has consistently been ignored. It is a massively useful resource!

The sections on Physical Examination and Diagnosis contain material that literally has taken us decades for us to work out on our own! Such a long and terrible journey. If only we had had this book 25 years ago.

Again everything is laid out concisely in easy to digest sections. You really would be doing yourself a huge favour studying it, if you can.

What possible treatments are there? How useful are antidepressants? What about antivirals? What about nervous system dysfunction? What about the hormone system, the immune system? There’s a lot of useful information on that, including observations on how NICE has blocked possible treatment options, for example antiviral treatment.

You will find a very helpful section on symptom relief including Allergies, Depression, Headcahes, IBS, Nausea, Muscle Relaxants, POTS, Pain Relief, although I notice it does not include the role of magnesium, which we have found particularly helpful over the years. I would also caution the enormous risk of using a sedating tricyclic antidepressant in Severe ME, 25 years later I am not sure my wife has recovered from the harm that was done to her.

The section on Rituximab, I am afraid, is seriously out of date, with no reference to the Griffith University study refuting its use.

That said, there is much that is impressive about this book, including a particularly useful section on Benefits.

I do find the book arguing the case for “encephalopathy” unhelpful and irritating. There has never been any need to add further confusion to the horrendous mess that is ME nomenclature.

The results of Sophia Mirza’s and Merryn Crofts’ post mortem examinations speak for themselves; they must surely be honoured. I am not sure, for there is no Subject Index, but as far as I can tell there is no reference in the book either to Sophia or Merryn.

Although there is an Author Index, in an information manual like this, the lack of a Subject Index is a major omission. I want to quickly find what I am looking for, I do not want to have to thumb through page after page, as I am doing now, often giving up in frustration.

Given the state of my already tatty-looking copy, after only two days of use, I am not sure this Purple Book is going to hold together long-term!

I find it sad to find no mention of Melvin Ramsay, outside the “MEA Ramsay Research Fund”or John Richardson for that matter in the book. These are the giants upon whose shoulders we stand.

Oddly there is no reference to the great Byron Hyde’s work. At least not in the Author Index. And the Purple Book manages to somehow discuss the PACE Trial without reference to David Tuller, which is a great shame.

The chapter on “Severe ME”, rightly highlights the “serious deficiencies” in health care provision and lack of research, but sadly fails to stress the enormous danger of deterioration through the slightest wrong intervention and does not refer to the 25% ME Group or Ron Davis’s work. Again it is incomplete and out of date.

I am bothered by the emphasis on “Pacing or Activity Management” that runs throughout the manual, though I appreciate it may be more useful for people with Mild- Moderate ME. Without qualification, I am worried that it could potentially could put some people at risk of pushing too hard.

Formal pacing is just not realistic in Severe ME . Even though Pacing is an attempt to conserve or perhaps recover used energy during rest, sadly it is not likely that a person with Severe ME can achieve the necessary baseline required. Pacing still requires a certain amount of energy that the person with Severe ME simply does not have to start with.

It also requires that the person can actually rest; this is something hard to impossible to achieve for people with Severe/Very Severe ME.

We have long stressed the importance of a moment by moment approach to care that seeks to maximise the opportunity to meet need tenderly, waiting for the right or best moment to interact in the most tender possible person-centred way, as nothing is predictable in Severe ME.

The chapter on Children and young people, to my shock, claims that the appalling Royal College of Paediatrics and Child Health 2004 Guideline “contains much useful information”, however to its credit it does refer to the Tymes Trust as “providing the most comprehensive information” on educational and child protection issues.

Curiously this book seems to occupy an unreal world where the UK CFS/ME Research Collaborative represents the pinnacle of research. Never mind that the 25% Group, Tymes Trust and Invest in ME refuse to enter into any kind of “collaboration” with the psychiatric lobby who are responsible for a great deal of misinformation about the nature of ME and the promotion of Graded Exercise Therapy and CBT, which to the MEA’s due, they have repeatedly called to be withdrawn.

A Purple Book reader could well be forgiven for thinking that the “hospital-based ME/CFS services” are centres of “clinical experience”. How can this be so, when there is no biomedical pathway for ME only a psychosocial one in the UK. And the needs of the housebound go unmet ?

So, would I recommend this book? Yes, absolutely, but be sure to read it with great discernment and awareness, especially in regard to people with Severe ME.

Greg Crowhurst

Ref : https://www.meassociation.org.uk/shop/books/mecfspvfs-an-exploration-of-the-key-clinical-issues/