Friday, 27 February 2015
By Jane Colby of the TYMES Trust
Not many people will have missed the hoohah about SEID - Systemic Exertion Intolerance Disease - as a proposed new name for ME/CFS. You'll be relieved to hear, this is not going to be a dissection of the IOM report. That's not what I'm writing about.
I'm going to write about ME, and about why, no matter how many names people come up with for the composite 'CFS', ME itself remains what it always was. Myalgic Encephalomyelitis. Well defined by Melvin Ramsay back in the 20 Century. A discrete disease, and not exactly what we would call “benign” (a prefix that was originally attached).
It's six months since I posted here on my Stripeysocks blog (as you see, I've broadened my remit to include Spotty Socks when available... ). Thanks for the messages asking me to post again. The reason I was away was simple. Myalgic Encephalomyelitis. As those of you with ME will know, even if you're much recovered, the chances are that you still have to pace yourself. So do I. 2014 was Tymes Trust's 25 Anniversary Year. That was demanding so much of my energy and time that something had to give. It's good to be back.
Sitting beside me is a copy of Melvin Ramsay's monograph: The Clinical Identity Of The Myalgic Encephalomyelitis Syndrome (second edition). If only the medical establishment had properly adopted his clear description of ME back then, we might never have suffered the indignity and nonsense that is Chronic Fatigue Syndrome, nor rushed willy nilly down that blind alley. “It is fortunate,” he writes, “that a second edition of my monograph affords me the opportunity to demonstrate that the clinical features of Myalgic Encephalomyelitis provide a sharp contrast to all other forms of postviral fatigue syndrome.”
So there you have it. A “sharp contrast” to ALL other forms of postviral fatigue syndrome.
Anything that does not display the clearly defined features of what I have myself referred to as “classic” ME (I'm glad to see how popular that adjective has become) is simply not ME. It is something else, and deserves to be properly diagnosed in its own right.
All this muddled thinking that CFS has engendered has led to patients with genuine ME getting mixed with patients who have something else. No illness can be accurately diagnosed while all are labelled CFS - or worse, chronic fatigue, a symptom of multiple diseases. Many of you will know that I've written about this issue since the 1990s. It can't be repeated too often. People have been short-changed, fobbed off, and some even put in serious danger by being given inappropriate therapies, or having what was cancer labelled as fatigue.
Here is what Melvin Ramsay wrote. It could hardly be clearer.
The clinical identity of the Myalgic Encephalomyelitis syndrome rests on three distinct features, namely:
A. A unique form of muscle fatiguability whereby, even after a minor degree of physical effort, 3,4,5 days or longer elapse before full muscle power is restored.
B. Variability and fluctuation of both symptoms and physical findings in the course of a day. And,
C. An alarming tendency to become chronic.
He goes on to contrast this with flu. “If we take the well known condition of post influenzal debility as an example of a postviral fatigue state we see that in all these particulars it constitutes a complete contrast. The fatigue of post influenzal debility is part of a general debility with no distinguishing characteristic of its own, it shows no variation in intensity in the course of a day and although it may last weeks or even many months, it has no tendency to become chronic.”
Once you mix different forms of postviral fatigue together you end up with doctors who can't understand why a child diagnosed with CFS can be severely ill for years. They make extraordinary statements like “You've been ill for too long,” and call in psychiatrists and social workers to probe the family and the child's mental state. They may be accustomed to seeing more common types of postviral debility, quite likely under the label of chronic fatigue, and simply don't know that in with those there will be cases of the 'real thing', the genuine article, ME in all its variability, potential severity and chronicity (duration of illness).
On chronicity, Melvin Ramsay writes of the “alarming tendency” of ME to become chronic. This is “the final distinguishing feature from all other forms of postviral fatigue syndrome”.
At the time of writing, he knew of people who had suffered with ME for over forty years. He states, unequivocally: “I am fully satisfied that at a conservative estimate 25% of victims of M.E. have had the disease for 10 years or more. Only Myalgic Encephalomyelitis has such a legacy.” Finally, he comments on the “recurring cycle of remission and relapse”, and on “tragic” cases that do not remit.
Given these sobering facts, it must surely be obvious to anyone, lay or medical, that we must allow children with ME, and adults too, to convalesce and recuperate in a genuinely conservative manner that supports the body's own healing mechanisms. The last thing we should be doing is pushing the body before it has healed enough to do what is being demanded.
I said I wouldn't write about SEID but I will say this: to be diagnosed with SEID, the patient must exhibit an intolerance to effort. That in itself narrows things down. If the definition requires that effort makes the patient worse, we're coming closer to ME itself. The IOM committee quite rightly panned the term 'fatigue' and also replaced 'syndrome' with 'disease'. SEID might fly as a replacement for the hated 'CFS', but it's still not classic ME. Both I and Tymes Trust will continue to refer to ME to distinguish it from other diseases.
I don't think I'm breaking a confidence to say that I'm expecting some new evidence of the type of neurological damage caused by inflammation in ME to become available during 2015. Given that the IOM committee will review in five years, by which time there may be more revelations, I find it very unlikely that there won't be - even in their opinion - sufficient evidence of inflammation for them to agree: Myalgic Encephalomyelitis ('itis' meaning inflammation) was an appropriate name all along.
Footnote: Those of you who've been reading the episodes of my book will know that it's the close relation between ME and polio that I focus on there.
Monday, 23 February 2015
C H Spurgeon’s Morning Devotional for 23rd February
"I will never leave thee."
No promise is of private interpretation. Whatever God has said to any one saint, He has said to all. When He opens a well for one, it is that all may drink. When He openeth a granary-door to give out food, there may be some one starving man who is the occasion of its being opened, but all hungry saints may come and feed too. Whether He gave the word to Abraham or to Moses, matters not, O believer; He has given it to thee as one of the covenanted seed. There is not a high blessing too lofty for thee, nor a wide mercy too extensive for thee. Lift up now thine eyes to the north and to the south, to the east and to the west, for all this is thine. Climb to Pisgah's top, and view the utmost limit of the divine promise, for the land is all thine own. There is not a brook of living water of which thou mayst not drink. If the land floweth with milk and honey, eat the honey and drink the milk, for both are thine. Be thou bold to believe, for He hath said, "I will never leave thee, nor forsake thee."In this promise, God gives to His people everything. "I will never leave thee." Then no attribute of God can cease to be engaged for us. Is He mighty? He will show Himself strong on the behalf of them that trust Him. Is He love? Then with lovingkindness will He have mercy upon us. Whatever attributes may compose the character of Deity, every one of them to its fullest extent shall be engaged on our side. To put everything in one, there is nothing you can want, there is nothing you can ask for, there is nothing you can need in time or in eternity, there is nothing living, nothing dying, there is nothing in this world, nothing in the next world, there is nothing now, nothing at the resurrection-morning, nothing in heaven which is not contained in this text-"I will never leave thee, nor forsake thee."
Tuesday, 17 February 2015
Taken from the ME Global Chronicle No 9 February 2015
The IOM recently published its report into ME and has renamed the illness to Systemic Exertional Intolerance Syndrome (SEID). This will be a controversial decision and will encounter considerable opposition from patients and doctors. Let us look carefully at the facts.
The name itself tells us nothing about the illness as many illnesses including Cancers and MS cause substantial “exertional intolerance”. Yet these illnesses do not have “exertional intolerance” in their name. The report accepts the illness as a serious biological illness but fails to accept this and quantify this in its diagnostic criteria. Unfortunately the new IOM criteria uses most of the same criteria used in the Fukuda criteria of 1994.
It uses a substantial reduction in physical activity and profound fatigue lasting for more than 6 months unrefreshing sleep and cognitive impairment. The addition of Orthostatic Intolerance being the only new addition to the criteria. What about the immune system abnormalities? the mitochondria abnormalities? the neurological abnormalities? the HPA axis abnormalities? the infections consistently found? the cardiac abnormalities? the genetic abnormalities? the gastrointestinal and microbiome abnormalities? These important biological factors were omitted, left out.
The IOM diagnostic criteria is far too vague, loose unclear and ambiguous. The IOM criteria cannot diagnose or treat any illness. The IOM criteria advises doctors not to carry out intensive biological tests to decipher the illness factors in the patient. This is extraordinary, as medicine and science is about identifying and establishing facts and not about making assumptions and presumptions regarding fatigue for 6 months or more.
The new IOM criteria does not deconstruct this complex multi-system illness illness into it’s constituent parts so as to diagnose and treat with precision. This means that patients will not get a proper of diagnosis of ME / CFS or SEID and thus they will not get proper treatments.
Millions of patients will continue to be left in a limbo and many of these will continue to be vulnerable to premature deaths as a result. The following list is a sobering reminder of what happened in the past when vague, ambiguous, unclear and loose criteria were used to diagnose the illness - http://www.ncf-net.org/memorial.htm
In addition the IOM criteria includes co-mormid illnesses in the diagnosis of SEID, and Depression and mental illness are included. This means many of those people with Depression and other mental illness will qualify for a diagnosis of SEID or ME / CFS. This will add these patients to the mix of SEID and ME/CFS patients and this will confuse doctors and researchers, and cause inconsistent research findings and further confuse the research field and the meta analysis of papers. It’s a disaster. It is this inability to accept well known biological makers for the immune system, mitochondria, neurological system, HPA axis, heart etc. which condemns doctors, researchers and civil servants to continue to repeating the same mistakes over and over again, while patients suffer, become more frustrated, and die.
The malign influence of some London psychiatrists continues in the field of ME / CFS and this is evident in the new IOM criteria. The emphasis on fatigue and exertion intolerance and the omission of biological markers proves this point. The excessive research monies wasted by the NIH and British government and other EU governments on CBT, GET and other psychiatric nonsense has robbed the field of quality research into biological factors for over 20 years. Yet despite these setbacks, there are many high quality research papers proving consistent biological makers in the illness.
There are some known biomarkers for the illness – http://www.me-ireland.com/ - Biomarkers - and some forward thinking medical clinics which use these and diagnose and treat the illness - http://www.me-ireland.com/ - Diagnosis and Treatment . The Norwegian government feels that the immune system abnormalities are important and is continuing to fund research into the use of Rituximab in ME / CFS and this should produce some results by the end of 2015. The Open Medicine Institute (OMI) is continuing to fund raise for high tech research into ME /CFS combining immune system, neurological system, gastrointestinal, genetic and endocrine factors in a large research project. This will produce some findings by the end of 2015. The Rituximab and Microbiome projects in Britain are due to begin soon. Also Dr. Lipkin’s microbiome study is to begin in the near future. These provide realistic hope in terms of identifying all biological markers for the illness.
The fine art of deconstructing complex, multi-faceted systems / illnesses into their component parts and understanding their nature and their dynamics and linkages with each other has been lost. The old educational style which focussed on the Trivium form of learning has been replaced with new types of education emphasising superficial analysis and learning, and hasty, inadequate solutions. The quick analysis, the superficial diagnosis, the speedy dismissal, the soundbite, the inability to listen carefully and to investigate, the shallowness of assumptions and presumptions, the lack of depth, the lack of curiosity, the lack of deeper facts and meaning, the lack of clarity are all too common today. This is blocking scientific and medical progress and condemning many people to mediocrity, low quality and failure, and is causing great suffering and frustration for many people worldwide.
Tuesday, 3 February 2015
From the TYMES Trust –
With the latest media splurge reading like an advertisement for Cognitive Behaviour Therapy and Graded Exercise Therapy as the answer to ME, families facing child protection investigations must have been reeling in horror. Tymes Trust has now advised 139 families in connection with such procedures, and in a number of these cases the authorities are trying to enforce these very treatments against the parents' will.
If we go back a stage, we find that the authorities have, almost without exception, seemed to believe that children with ME can recover while following a graded school attendance programme; this is of course just an educational version of graded exercise, as we have so often pointed out.
In our experience, it rarely works well, unless the child is either already substantially recovered, or does not have ME at all - which may well be the case, given that 'CFS' criteria are inventions that pull in people with other 'fatiguing' conditions, and this is the diagnosis that is most often used at the moment.
For classic ME, education in the home CONSERVES ENERGY and is more productive, both in terms of convalescence and educational achievement. This is not just an unsubstantiated opinion, but comes from the practical experience of families who have never looked back after deciding to home educate. This really is not surprising, since one of the three principles for managing ME, according to the great ME expert Dr Elizabeth Dowsett, is CONSERVATION OF ENERGY.
However, state education is the child's right. It should be possible to put in place systems of education that do fulfil the aim of conserving energy, without the family necessarily having to remove their child from the school roll and home educate. Virtual education and home tuition can both play a part for families who wish to stay within the state system during what may be a long recovery process. There should be no pressure on a child with ME to get back to school unless they are clearly strong enough to do so without their health or ability to learn being adversely affected.
With all the physical demands that are placed on a child just to get dressed and get to school even before any lessons are attempted, together with the effort needed to move around the school, socialise and carry bags, the typical state approach of graded school attendance for children with ME is frequently unworkable.
When it fails, and if the authorities then prove intractable in their approach, child protection procedures may be used to enforce the programme. And when that fails too, because the family quite reasonably objects, we may see these attempts to admit the child to a psychiatric unit against the parents' wishes, for physiotherapy, graded exercise and cognitive behaviour therapy. In effect, by exercising their right to stay within the state education system, these parents find themselves at risk of 'losing' their child to the state. This is clearly wrong, and a huge injustice.
Given that the initial graded school attendance programme didn't work, and has led to a deterioration in the child's health, how could anyone believe it possible that graded exercise in any form would do the trick?
Statements by exercise physiologist Mark Van Ness, whose research clearly demonstrates the reality of post exertional deterioration, and by Dr William Weir, whose thirty years' experience with ME patients reveals the same phenomenon in a clinical setting, both show the recent media coverage up in a very poor light. It has caused huge upset and distress amongst families. They know it can only make things harder for them when they quite reasonably try to help their child pace themselves carefully, and convalesce effectively.
Former Head Teacher and Executive Director of Tymes Trust
Monday, 2 February 2015
By Hilary Golding
Dear friend do rest content with what you’ve got
Instead of finding endless fault
With everything you have.
“Tis trite to quote the common proverb
“Grass is always greener on the other side”;
But it is often true and we must find
Contentment and the peace of mind
On our own God-given land.
The Holy Book doth put contentment high
Upon the list of gainful traits.
It is divine when all God’s gifts we take
With grateful thanks and e’en what we call bad
To make it serve towards our good
For that was always His intent.
Our life is short and we are meant
To bring forth fruits of love, but discontent
Breeds ugliness and no-one pretends
To like to hear a catalogue of faults.
The week of discontent, it is a cancer
And will strangle any wholesome flower
Of love and joy, true peace and thankfulness.
Grudge not the Lord His due
But thank Him from the heart for everything;
For needed strength let’s pray to Him,
And carry on the life that He has given you.
Let’s look around at all we have,
And praise the One Who left the glory,
Came to earth to tell the story
Of God’s love to all mankind.
Who gave His life that we should find
Salvation, and our lives be filled with praise,
Until the time when He thinks fit to end our days.
Used with kind permission of the author.