STRIPEYSOCKS BLOG (not part of the book!)
THE RULE OF CBT?
Someone whom I respect, someone who has suffered the ravages of ME over the years, said to me: "In the UK we won't see this change in our lifetime." In our lifetime.
That cannot be. We cannot allow it. But I can see exactly what prompted that bleak assessment, and so, I'm sure, can you. Slip on your slippers and come on a journey with me.
In 1985 I was taken ill, suddenly, with a virus that crippled me and robbed me of brain function. It was identified by a research programme to be a relation of polio. It took my career, my sport, my dance, my ability to run the family home. It plunged me into constant neuropathic pain, made me topple downstairs when my brain forgot how to put one foot in front of the other, caused blackouts and collapses, and turned bits of me to lumps of unfeeling dough.
Crawling, burning skin, then loss of sensation, twitching muscles and extreme weakness, all piled one on another until I was nothing but a useless body in a bed, soaked in toxic smelling sweat, evil and poisonous. I could hardly chew. And this was no week-long drama. The thing went on and on and on and on. All that kept me existing was sheer stubbornness, endurance, and an inner force none of us know we have until, in extremis, we tap into it, there at our core, the building blocks of life, the instinct to survive and thrive: somehow, to get there, one far off day.
We trust to our bodies to do the job because we have nothing else. No pills, no vaccines, nothing curative. And without people who love us and feed us, and bear with us for years throughout all this trauma, we could not hope to continue.
For a belief system to emerge which appears to insist that a spot of talking therapy will conjure recovery from such extremis is not merely laying a dumb, blind and ignorant path that leads nowhere, it is obscene.
Those who would perpetrate such a belief cannot, surely, have been where I have been? Visited the same country where nothing they know about modern medicine holds true? I came through the pit, the fire, the dark, dark underworld, and dragged myself back to tell the tale.
It's not total recovery. But it is certainly recognisable as a life.
I tell you now. I will not concede that there will be no change in my lifetime. I WILL see the UK repudiate these unconscionable injustices to families whose children are plunged into the same terrifying land of classic ME - myalgic encephalomyelitis, not fatigue. Who are told that it's their fault, that they're overprotective. Denied, belittled, accused, as they are, of fabrication. Told to ignore their child's pain and leave them crying in the night. When I say that this whole belief system is an obscenity, I know that thousands if not millions of people out there - that you too - agree.
MY SPEECH AT THE HOUSE OF LORDS, 30 JUNE 2016
Introduction: Well I'm now pretty exhausted! Never mind - I'm also over the moon at the tremendous success and attendance at the Afternoon Tea and Awards, held in the House of Lords for members and guests of Tymes Trust and the Nisai Virtual Academy. Our host was the Lord Clement-Jones, who welcomed everyone with his usual great good humour and aplomb.
We were also pleased to have journalist David Tuller with us, who was presented with a Tymes Trust Press Award.
I launched a new leaflet on ME for families and GPs. This will be online soon, along with my introductory speech, on the Tymes Trust website.
However, I thought you'd like to read the speech as soon as possible, so here is the text. It's called:
THE TYRANNOSAURUS REX IN THE ROOM
I was a GP's wife, I know that GPs need practical ways to help
patients where there is no curative treatment. And they also need
knowledge of what treatments, or types of management, might be
I was a headteacher, I know how education can be modified for sick
children so they can achieve whilst protecting their health and
because I got ME (diagnosed by that name) from a coxsackie B virus,
I have personal experience. But of course I have also learned a huge
amount through working with medical professionals who understand ME.
And when I say ME, I do mean, ME. More of that later.
late Dr Alan Franklin was one of the foremost experts in paediatric
ME, and it was a real privilege to work with him on the Chief Medical
Officer's Working Group on CFS/ME. This leaflet I'm holding, which
we're launching today, has been produced in commemoration of him and
his wonderful, compassionate work for children. Everyone respected
Alan and he still is sorely missed. Now some of that personal
information is in the leaflet. There's a reason for that.
so here was the challenge. One sheet of paper. Why? And what's it all
the Why. Over my years dealing with – and suffering from – ME,
I've worked with some pretty eminent doctors. Dr Elizabeth Dowsett
was my first. She was a renowned microbiologist who probably knew
more about ME than anyone in the medical establishment at that
time. She diagnosed me, she demonstrated the cause, through tests –
a virus related to polio. She told me that mine was almost the
severest case she had ever seen. And she asked me to help her, long
before I was really well enough (and she got told off for it by my
mum, who was my main carer!) She asked me to help spread knowledge of
ME in children, and that was how our schools research began. We
discovered that no other illness causes such long term sickness
absence from school. It really is that disabling and Lord
Clement-Jones has explained to you one of the reasons for that.
the doctors I've worked with, including our guest Dr Charles
Shepherd, there was a GP with whom I wrote articles. He called me in
to advise the local education authority in a very severe paediatric
case of his. He said to me: “Hmm. GPs. Keep it to one sheet!”
We've taken his advice.
it all about? Well, we thought it was high time to tackle the
in the room – the thorny issue of how ME and CFS are actually
not the same thing, and why the present emphasis on fatigue is
potentially unsafe for people who would
have been diagnosed with ME – myalgic encephalomyelitis – as
by Ramsay – but who now either go undiagnosed or more likely end up
under another illness name such as postviral fatigue or CFS –
Chronic Fatigue Syndrome.
important because it affects treatment and for children, it affects
the type of education recommended too.
made a typing mistake when I first typed Tyrannosaurus Rex. I put a y
in the middle. Tyranny saurus Rex. I thought that was spookily
accurate. The fatigue label and the recommendations that have
followed from it have become a tyranny. I don't need to tell you
how oppressive it is to have your children forced to school when they
are not yet well enough, and when there is an excellent replacement
in virtual education. The Establishment can be a bit of a dinosaur
when it comes to this type of revolution. There are those who seem to
believe that there is some kind of moral virtue in just getting to
the school building, never mind the educational results. And then I
suppose there is the fear: we surely can't buy in a virtual education
course for this child – suppose they all want one! But the bottom
line is - a child's needs must be catered for. That's the law.
Trust, whenever it can, sticks to talking about ME. But this is an
occasion when it is important to give you one sheet that your GP can
see is fully medically referenced, explains how ME, CFS and SEID
(systemic exertion intolerance disease - a name suggested by the American Institute of Medicine) relate to each other, and carries medical authority for the
information within it.
course, doctors, patients, me - author of the leaflet – we're all
human. Connecting personally with other people is what it's all
about. In the final analysis, GPs want solutions for their patients.
We hope this will help.
MILLIONS MISSING : "WHAT ARE YOU DOING AT THE WEEKEND?"
What? How do I answer that?
Was it a well meaning friend who just said it, or a slight acquaintance? A relation, or simply someone you're still in contact with despite the limitations - and isolation - of ME?
Being well meaning, and understanding your life, are two different things aren't they?
Of course if it was me asking you
"What are you doing in the weekend" I could get away with it. I would mean, are you going to get out of bed? Are you making an ambitious plan to wash your hair and maybe sit in the garden? And you would know I meant that. We ME people are on the inside track, as it were, and won't be expecting "I'm going to a music festival" or "I'm playing tennis" or even "I'm going shopping" or one of the myriad of "normal" things that people from the Rest of The World do on any weekend.
So what would a member of the Rest of The World expect you to answer? Something along the lines of "I'm going to the sales/cinema/shops/theatre/visit my cousin at the other end of the country/take the dog to the zoo" perhaps.
Being asked about the weekend always brings me up short. Suddenly finding that all those careful explanations of pacing yourself have apparently fallen on deaf ears can be disheartening. What it does is make you painfully aware just how hard it is for others to grasp the reality of your life. And that pretty much applies at all stages of ME, but particularly when you seem to be over the worst (you wondered if you ever would be) and are usually dressed when they see you.
Seeing's believing, as I often say. People see you when you're actually doing something, using your stored energy all up. You look fine. Later, you don't. And they don't see that.
It goes something like this. Your cleaner and good friend turns up with all the amazing energy of a well nourished tiger. She heaves the hoover about, goes up and downstairs, wipes and dusts and washes, while you're occupied getting over the effort of tidying up beforehand. You drink tea, sit with your feet up, and hope things will all get done as you'd like. If you're no longer severely ill, and therefore not bedridden, you look comparatively normal. You're making an effort to exchange pleasantries, and she's known you for quite some time, so you assume that your life is fairly well understood.
And then comes the bombshell. She's leaving the house and she says, chattily, "What are you doing at the weekend?" Where to start? She may as well have said "Are you flying to the moon on Saturday?" Turns out she really IS going to a music festival.
It's not that you don't EVER go ANYWHERE, and it's not that you wouldn't like to go SOMEWHERE. As and when your ME will let you, of course. It's that you would never, ever, go on a Saturday, when all the world is abroad, competing for parking, jostling and queuing and filling up the coffee shops. And you would certainly not choose a bank holiday. It would be a quiet day midweek, a day when the world is otherwise engaged.
"What are you doing at the weekend?" A gulf just opened up between your lives the size of a chasm.
Is there any such thing as an objective object? Let's take a table. No matter how you might take time to appreciate its shape, mindfully contemplate it, view it from different angles, photograph it or sit at it, a table is a table is a table. It's not going to decide against being a table, or do things a table doesn't normally do. And it's not going to interact with you. You and the table might be composed of atoms and molecules, and be held together by mysterious forces, but you aren't going to look at your arms and say, "Oh look, my arms have become table legs and the table is now standing on my arms."
It's much the same with the mind and the body. The argument that mind and body are one, and therefore nothing is purely physical and nothing is purely mental, is only of any use when you're being philosophical or investigating what brain mechanisms might be triggered to assist bodily healing. We have not yet found a course of CBT that will enable your shattered bone to do without any form of plaster cast, or remove the need for an operation to get the bits back in the right position. We don't hear doctors say, "The physical reality of your broken leg doesn't exist, it's a construct between your mental and physical processes." Would you ever return to a clown who did?
We are all being driven slowly crazy, hearing nonsense about Cartesian dualism, and how it's not helpful to think in terms of a purely physical illness. Right. Like, we don't need any antibiotics then. We can just talk to our invading microbes. Actually, at my worst, I did talk to my Coxsackie B virus, to which I have been playing host for many years, and I did explain to it that I didn't mind giving it houseroom if it would just please not give me too much trouble. Who knows if it listened? Maybe that's part of the reason why nature did me a tremendous favour and got me over the worst of those bedridden years. But really, wouldn't we all like the option of some targeted antivirals, and the choice of a vaccination for us or our children?
I'm sure some of you will have noticed that I haven't written anything here for what seems an age. Medically, I've had a year of problems I won't go into (boring) and something had to go. We're all familiar with that concept; I can do this, or this, but not both. My voluntary work for Tymes Trust was the priority, so my writing had to take a back seat. C'est la vie, and other clever European quotes. Ooer, let's not get into stuff about the EU! Well, not here at any rate.
It will be fun - fun? - to see if I can still access the email that was set up for sending group messages to everyone who's filled in a Contact form here. I hope they will all forgive me for the long, long silence!
BETTY PROVEN RIGHT
Why am I not surprised to hear yet more
evidence that the renowned microbiologist Dr Elizabeth Dowsett, who
always insisted that ME is a persistent EnteroViral infection, was
It was June 2006, the last time I saw
Dr Dowsett before age and ill health confined her to residential
care. It was a Tymes Trust Open Day on a sunny summer's afternoon,
hosted by Sally's nursery garden and tea rooms in Essex. Visitors of
all sorts were there, including young members of the Trust and their
parents. Already retired, Betty was happy to be with us. She was in
good spirits, despite knowing that there was much still to be done
before ME would be extricated from the “chronic fatigue” empire.
It didn't belong there then and it doesn't belong there now. She was
scathing about the matter!
Classic ME is so potentially severe and
chronic that calling it fatigue is like calling a world catastrophe a
mild inconvenience. For anyone who gets severe ME, it IS a great
catastrophe. From my point of view, I think it was quite wicked to
come up with such an inappropriate and demeaning name for a disease
that in my case confined me to bed, destroyed my career as a head teacher, and taught
me what a real test of pain and endurance can mean. Doctors
encountering their first case of severe ME can't believe what they're
seeing. Nothing they've been taught has prepared them for it. It's
not surprising that so many families find themselves investigated by
social services, suspected of causing it.
On that summer's day, I recall feeling
none too good. Efforts have to be made at any public event, however
enjoyable they may be, and we often pay the price for that, don't we?
That's why I never attend any conference at which I am not speaking.
My latest speaking engagement was an address at the Trust's 2015 ME
Awareness event, when I presented our Statement on “Equality and
ME”, which can be used to help obtain a child's rights. I explained
how this work developed from last year's focus on injustice.
The biggest injustice of all is that ME
was ever sucked into the fatigue empire. Dr Dowsett was right; those
of us with classic ME are fighting a persistent virus, and the latest
research by Dr John Chia, with whom the Trust has worked, is building
up more of that picture. Live tweets by Phoenix Rising from this
week's London conference reported that he told the audience how
enteroviral RNA was found in the tissues of a suicide patient, and
spoke of his personal connection with this disease, diagnosing his
own son with an enteroviral infection in 1998. He described his
research since then, searching for the virus in body tissues. He has
of course been singularly successful in this, publishing papers along
with his son, who has been working alongside him. He explained that
the stomach is a primary site for viral replication. Some years ago
he let Tymes Trust have his diagnostic protocol and some of our
members were tested.
For years I had maintained that until a
doctor came along whose close family was affected, and who would then
begin to investigate, we were not likely to see the 20
century enteroviral studies of Len Archard and others validated and
expanded upon. And so it has proven. Dr Chia is the one scientist to
take up and carry forward the Dowsett Olympic torch. Long may he
continue. Why are no other scientific bodies assisting, replicating,
and funding this vital work?
: A SIMPLE EXPLANATION?
Sometimes there is the simplest
of explanations when an announcement doesn't make sense. It's like a
fault in a garment; once someone points it out, you wonder how you
missed it. And after that you see it all the time!
have been asked about this proposed figure of 97% recovery from ME in
young people, which has been doing the rounds after being aired in
the media. Initially of course, I directed people to my blogpost WHAT
DO WE KNOW ABOUT SEVERE ME? because in it I had discussed recovery
rates, and what might or might not be meant by 'recovery'. I gave
quotes from reputable authorities and pointed out that judging
recovery means defining what we mean by the word. It's important to
put the 'recovery' narrative into perspective.
there other issues than merely defining our terms. One of them is
this: who is claiming that 97% of young people recover? What are
their sources? In my experience, it's paediatricians and other
healthcare workers who deal with young people.
am reminded of an occasion when I attended a meeting in connection
with the setting up of a clinic. I believe the term CFS was being
used, but it may have been CFS/ME. In the general discussion, a
paediatrician stated that children did not suffer beyond the age of
16. He was quite confident.
What was the flaw in his claim?
looked at him: “But as a paediatrician you don't
over the age of 16,” I pointed out. “So how would you know?”
And there you have it. A
flaw in the 97% claim.
had to explain to this paediatrician that many relapses occur in
young people who have, indeed, become much stronger, but who are not
cautioned for the future. They are not advised to rein in if they
notice symptoms returning. They may burn the candle at both ends.
Believing it's all in the past, they study, shop, socialise, join
clubs, deal with all the general tasks of life, till suddenly they
find themselves back at home in the care of their parents. Students
have had to take a year out from university, or even to leave
altogether and consider other ways of studying. It's a horrible
shock, it's a blow to their self-esteem, and it's tragic that they
weren't given proper advice to begin with.
has been noted that people generally adjust their idea of what is
'normal' after a long period of illness. As they improve, many
youngsters develop a good sense of what they can manage, and are
realistic about it; they adjust their lives to the new 'normal'. If
asked, they may say they are better, they may appear 'better', but as
with 'recovery', that word needs defining so we know what we're
talking about. No-one, particularly the adults around them, likes to
think that any of these 'recovered' young people might still need to
pace themselves. They naturally want to be off having a good time and
living life to the full after what tend to be called the 'lost'
years. It doesn't have to be considered a great drama to advise them
to take a little care if they feel rough, as we all do at times. They
will need to test their boundaries, and may make mistakes, needing
friends and family to help them pick up the pieces. But that is life.
We all have to work with the cards we are dealt. We are all different
and there is no absolute norm.
There are also other factors to
consider with regard to recovery figures.
was giving a talk to home tutors and one told the group that a
student had asked what would happen if she wasn't recovered enough to
take her exams. She had 'encouraged' this student by saying, “Don't
worry, you will be.” It was clearly the tutor who found the
potential for limitations and disabilities too terrible to
contemplate, not the student, who had asked for information. By
refusing to engage with the student's question, the tutor unwittingly
cut off all discussion about adjustments that can be made for sick or
disabled students to take an exam. This is an illustration of how
important the attitude of professionals is. What
about the issue of pride? Always considered a sin, in biblical terms.
In the Countess of Mar's recent
speech at the Royal Society of Medicine, she noted the difficulty
that professionals have in adjusting their beliefs:
Frantz Fanon, the
French psychiatrist, philosopher and revolutionary from the middle of
the last century wrote: “Sometimes people hold a core belief that
is very strong. When they are presented with evidence that works
against that belief, the new evidence cannot be accepted.
would create a feeling that is extremely uncomfortable, called
cognitive dissonance. And because it is so
important to protect that core belief, they will rationalise, ignore
and even deny anything that doesn’t fit that core belief.”
think of it as the Galileo effect. Clearly the sun goes round the
earth. Whoops. Pride comes before a fall.
we still seeing the Galileo effect in the realm of medicine? The more
medical professionals who buy into an idea, the more that idea
becomes accepted truth. Are we seeing the belief that the child
must have recovered
from the original illness, and that it couldn't possibly be lasting
so long, confuse recovery statistics? If the reality doesn't match
expectations, if parents explain that their child is still ill, or
becoming worse, this can be put down to another
condition, perhaps a psychiatric one. Family after family report this
happening to them. The very idea that the child's so-called 'CFS'
might still be active is pooh poohed. Does that skew recovery
belief appears to be that The Treatment must
work, therefore The Treatment does work. What happens when it
doesn't? There are many cases where parents are incorrectly blamed
for the child's condition. The fallout of that affects the whole
family. Consider this, from FALSE ALLEGATIONS OF CHILD ABUSE IN CASES
OF CHILDHOOD ME published by the peer reviewed academic journal
Argument and Critique:
“a bias would appear to have been introduced into the claimed
recovery rates from the management regime of the professional’s
choice, whereby blame for treatment ineffectiveness or failure is
shifted onto the children and their families.”
there is the whole 'chronic fatigue' umbrella. Whilst young people
are generally resilient and the tendency is for their bodies to fight hard against illness, who, out of those who appear to be
genuinely 'recovered', had classic ME in the first place?
DO WE KNOW ABOUT SEVERE ME?
my last blogpost on the stages of ME, some of you have raised
questions about cases that sadly don't ever seem to go into
remission, or improve enough for people to enjoy a reasonable quality
of life. That's what I am addressing here, grounded both in my own
experience and in the knowledge of others. It is part of the spectrum
of this disease, and we need to see the whole picture.
first met microbiologist and ME specialist Dr Elizabeth Dowsett in
1985 when she diagnosed me with ME. Shortly afterwards, she
telephoned with the news that my blood tests had revealed a recent
infection and several weeks after that, other tests, being analysed
as part of a research procedure, showed that the causal agent was the
enterovirus (or gut virus) Coxsackie B. In ME, it often is, as she
explained. Coxsackie viruses are related to polioviruses, being part
of the same family.
I didn't know at the time – do any of us? - was that mine would
develop into almost the worst case of ME that Dr Dowsett had ever
seen. I won't attempt to describe that here, although I do intend to
publish a personal memoir to convey something of the dramatic
severity and trauma associated with that level of disease.
years later, I came to interview Dr Dowsett, after a painful
endurance test while my body struggled to repair itself, she made
clear to me that whilst the body will do its best for us, sometimes
it just can't get the job done.
she was right about the persistence of virus in our tissues (and I
have no reason to think she wasn't, given Dr John Chia's discoveries
of viral particles persisting many years later in the stomach lining
of patients) then we never truly 'recover' in
terms of totally eliminating the invading organism.
But that happens with
other organisms too, such as the herpes virus that causes some people
to get recurrent cold sores when they are run down. Most of the time
it doesn't bother them. This is a way that the body has learned to
accommodate invaders rather than always mounting a deadly battle.
people who have been through ME seem to reach
periods in their
lives when they
joyfully find themselves
capable of physical things they
wouldn't be able to do again. After
the worst years, some of us
find other, gentler,
physical things to replace those we can no
longer manage. Can
we call any of this
It's an odd word, as people use it in their own way, and even
researchers have to
define what they mean by
recovery, which might not
be what we would mean.
have limitations that have never totally gone, and I live my life
around certain restrictions. The R word is bandied around too
loosely, but if by 'recover' we mean that we are totally 'over it'
forever, then that idea
does not seem to be
reflected in what
the body. What can
happen is an accommodation with the virus that
caused the ME in the first place,
a sort of equilibrium. This balance,
however, can be upset, and indeed, is apparently not reached in every
you haven't read my previous blog post IT'S
THE IMMUNE SYSTEM, RIGHT?
I would prefer that you read it now, before continuing with this one.
It's not all that long. Just scroll down and look through it. Because
the next few paragraphs are a bit scary, and if you're feeling upset,
miserable or frightened because of what's happening to your body,
it's a good idea to
reassure yourself by learning how
the 'tendency' in
ME (as explained to me by
Dr Dowsett) is for the body to
improve over time as it
tries to do what it's
programmed to do – heal us. Often this happens in spite
of, rather than because of, any therapies or medications or
alternative treatments that others recommend.
body has been injured, damaged. We must
look after it, love
it, praise it and trust it to do its very best. We must take good
care of ourselves and not let people pressurize us into doing things
that will interfere with that healing process.
last thing we want is to
provoke a deterioration, even as we naturally try new things when
they seem possible.
Keeping a balance is
important. As I've
personally experienced, once a
serious setback has
happened, it can be a long haul to get back to our previous level of
improvement. And we don't even know if we'll get there; uncertainty
is perhaps the worst thing of all. What will my future be? We
must give it our best shot.
off now and read my previous blogpost...
back. I hope you found
that information encouraging. We
must, however, validate the experience of those who do not 'recover',
for no fault of their own. And we must not hide away the unpalatable
truth, that some people suffer continually in darkened rooms unseen
by the world. As the Chief Medical Officer's Working Group Report
stated in 2002: Overall,
there is wide variation in the duration of the illness, with some
people recovering [that
word again] in
less than two years, while others remain ill after several decades. A
minority of those with CFS/ME remain permanently severely disabled
and dependent on others.
is a sobering statement. Dr Melvin Ramsay wrote of the spectrum of
cases, including one case that had at the time of writing lasted 40
years. He stated: I am
fully satisfied that at a conservative estimate 25% of victims of ME
have had the disease for 10 years or more. Only Myalgic
Encephalomyelitis has such a legacy.
was comparing the real, classic, historic ME with other forms of
postviral syndrome. Dr Chia's 21
century work corroborates what Ramsay documented, showing double
stranded enteroviral RNA present in the stomach lining of patients
after 10 years. He is quite adamant that this is a causal
relationship, with the level of symptoms reflecting the degree of
what I would call infestation.
describes two forms of chronic ME. One form shows
a recurring cycle of remission and relapse,
with remissions lasting as long as three years in his experience. The
second form is
more tragic in that no remission occurs. He
talks of the restricted lifestyle of these patients, and adds:
A few of these chronic cases are compelled to sleep upright as a
result of permanent weakness of the intercostal and abdominal recti
myself find it more comfortable not to lie totally
flat when sleeping, and
this is a fascinating analysis of why that might be. Despite the
persisting weakness in some of my muscles, I am constantly amazed at
what my body has managed to achieve. But I try not to take it for
have others had to say? In a paper published in 1994 by the
Nightingale Foundation in Canada, Byron Hyde MD and his colleagues
reported that out of 1826 respondents to their survey, the average
length of illness was approximately seven years. They found only a
two per cent recovery, which, they said, 'suggests that the
large number of pharmaceuticals, alternative medicines and various
treatments used' had been 'largely ineffective'. We are now 21 years
on from that statement, and if anything, we are in a worse situation,
with exercise regimes and psychological therapy having provided one
huge distraction. We see muddled terminology, mixing of patient
groups under the banner of 'CFS', and often misguided treatment. I
particularly see this in regular reports from parents stating that
their children have been made worse.
my view, until both the research establishment and Government truly
accept the viral nature of this illness, and do something about
developing targeted antivirals, and vaccinations, as they have done
in other serious disease, it will continue to be down to us as
individuals and families to resist over-demand and to insist on
taking the very best care of ourselves in order to maximise our
chances of 'recovery'.
my book, I am revisiting
my interview with Dr Dowsett and her work. She
goes into some detail
about the dangers
of ignoring the true nature of ME, and what that can lead to.Which is not nice. Not nice at all.
has to be taken seriously. That's why I continue to shout about it.
To anyone who will listen.
THE IMMUNE SYSTEM, RIGHT?
am I not surprised that Mady Hornig and Ian Lipkin's research reveals
that ME goes in stages? I've been telling people that since the
1990s. Indeed, it's the experience of most patients. But let's not
jump the gun. Let's find out why this might be and see if it makes
sense in terms of this new research.
years, Dr Alan Franklin was regarded as the country’s foremost
specialist in childhood ME. Unfortunately he is no longer with us.
Who, now, remembers his three
stages of ME?
Those of us who worked with him do. I was privileged to be asked by
him to edit some of his work.
wrote: “The existence of ME as an organic illness dates back as
long as records have been kept. It is now recognised in people of all
ages, including children. The effect that this neurological
disability can have can be quite devastating for the lives of young
people. It must be taken seriously if children and students are to be
given maximum help to recover some
of their lost opportunities. [...]
marked feature of ME is the fluctuation of symptoms from day to day
[in my previous blogpost I quoted from Ramsay who said the same] and
the tendency for relapses and remissions over months. There is a
combination of key symptoms that is remarkably similar
from patient to patient: Post-exertional fatigue, malaise and
cognitive dysfunction are invariably present. [...]
is extremely important in the acute
stage of the illness when there is evidence of active viral infection
and possibly other provoking factors.
Following the acute phase
patients should be encouraged to pace themselves and live within
their energy levels. The criteria for this is that either cognitive
or physical activity should not produce prolonged after-effects ie
for hours or days. Patients should be encouraged to pace their energy expenditure
and to learn to remain well within their capacity without
then goes into more detail.
is possible to describe this illness in terms of three stages:
One – Acute
referred to as Toxic;
patients say they feel 'poisoned']
feels ill all the time. Any attempt at exercise is
counter-productive. As in all acute illnesses, a drastic reduction
in cognitive activity (including education) is usually indicated.
However, this need for reduction in activity will typically persist
for far longer than in other illnesses and it is the biggest cause
of long term sickness absence from school [Dowsett and Colby, 1997].
more apparent in severe cases.
Two - Stabilisation
excess activity causes relapse to stage one. Extreme caution needed.
Patients may remain in this stage for years and progress may be very
Three - Remission
can be gradually increased with confidence.
also cautioned: “Relapses may lead to reversion to an earlier
stage. For children, close observation by the parent or carer will
usually determine the stage. Listen carefully to the child!”
his clinical expertise with that of the great expert Dr Elizabeth
Dowsett, couple it with her specialist microbiological knowledge, and
the thing starts to make sense. Dr Dowsett explained in her interview
microbes aim to co-exist with the human body. Both make concessions
in order to live in harmony. So our bodies are full of microbes,
absolutely full of them. Fungi, bacteria, viruses. A lot of these are
extremely benign. They've made adjustments so that they don't harm
you, and you have also made adjustments.
so that your immune system doesn't throw them out. […]
one of the reasons why people slowly get stronger in ME is that they
are learning to live with the virus and the virus is learning to live
Both sides make adjustments.
it has been hard for researchers to find the persisting viral
particles in the tissues of patients, but Dr John Chia's protocol can
find them in the stomach lining. They persist over many years. It is
not surprising to me that Hornig and Lipkin say the immune system
response changes over time. It is surely likely that it is merely
reflecting the process by which the body is learning to live with the
virus and vice versa.
Dowsett explains some of this in There's No Smoke Without Fire. She
talks of the immune system being “primarily programmed only to
attack cells or tissues producing a danger signal” and gives
examples of aggressive viruses which do that. She goes on:
the other end of the microbial scale
we have diseases caused by a wide variety of virus species which
(through millennia of association with humans) have learnt by various
means to persist inside human cells for long periods without
alarming the host’s immunological surveillance system. Of
such are the viruses associated with ME.”
us assume that Hornig and Lipkin's results are accurate. Good stuff.
But we do not also need to accept their suggestion that the immune
system may be dysfunctional. Dr Dowsett was adamant that it wasn't.
Their research finds that after the first three years or so of
illness, during which the immune system is in 'overdrive', it dampens
down. They speculate that this might be because the system becomes
'stuck' in an overactive mode (having reacted initially to a virus
that has long gone) and that after three years of this, the system
has somehow got itself exhausted. Then we see the activity much
reduced. How complicated is that? If we are proposing that explanation, it would depend on lots of people's immune
systems behaving in the same way, getting worn out at the same
approximate time. Everyone is different, as we know. What is special
about three years, in terms of each person's immune function?
makes far more sense to me that we are seeing evidence in their
research of exactly what Dr Franklin observed and Dr Dowsett
explained: the virus has settled in for the long haul, according to
its normal behaviour pattern. It has stopped provoking the immune
system to keep itself on high alert, and the immune system has
gratefully gone back to its normal job of 'housekeeping', as Dr
Dowsett called it. Symbiosis.
well, time will tell. I always used to tell my virus (Coxsackie B):
“Look, I don't mind giving you house room, if you'll just please
not give me too much trouble.”
blogpost may well get absorbed into my book ME – The New Plague 2. Depending on what happens in the meantime!
CLINICAL IDENTITY OF MYALGIC ENCEPHALOMYELITIS
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.
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).
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.
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
there you have it. A “sharp contrast” to ALL other forms of
postviral fatigue syndrome.
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.
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.
is what Melvin Ramsay wrote. It could hardly be clearer.
clinical identity of the Myalgic Encephalomyelitis syndrome rests on
three distinct features, namely:
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.
Variability and fluctuation of both symptoms and physical findings in
the course of a day. And,
An alarming tendency to become chronic.
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.”
you mix different
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).
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”.
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
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.
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.
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.
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
BLACK DRESS DAY FOR
SEVERE ME 8th AUGUST
A couple of years ago I wrote a memoir about my blackest times enduring severe ME. When I was living it, it seemed never-ending. Yet how could anyone understand that, who had not been through it? And why would they want to keep reading, if it was all so terrible?
Descriptions are often just descriptions. Something seen from the outside. We need people to feel it, internalise it. Hilary Mantel says: "You can write about ugliness in beautiful prose," and so that's how I approached the task. I have been encouraged to publish what came out of that challenge. I have decided that I will.
I thought I would give you a little excerpt for Severe ME Day. I tried to choose one. But the power of that abyss belongs within a balanced whole that I can't pick apart. I could not write the dark without the light, so there IS light. There is even humour. If I gave you just the black for severe ME Day, I would feel responsible for leaving readers in a bad place. And it was a very bad place.
So let's save that for later, when it can appear as a whole, with its humanity intact. In the meantime I want to ask you, please, to find one person - perhaps a professional, perhaps a friend, perhaps a journalist - to whom you can send a copy of my peer reviewed paper on False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelities (ME) published in July. Lack of knowledge about severe ME is leading professionals to try and enforce various types of graded exercise/activity treatment on children, and families are blamed when it doesn't work. Find the paper at the Argument and Critique website, here: http://www.argumentcritique.com/publications.html
As we all know, it is a disaster that ME has been incorporated into a concept called Chronic Fatigue Syndrome. I write: "How ironic it is that a condition with the word 'chronic' in its name should be so often confused with child abuse or neglect, with the length of the child's illness often given as reason for suspicion. The child has been ill for too long for this to be genuine CFS, the physician will argue. What does the word 'chronic' mean, if not long lasting?" (page 7).
When I write, it is like putting a message in a bottle. I don't know where it will land. On Severe ME Day, please help to spread the knowledge of what is happening to children a little bit further.