Letter in reply to article in the Manchester Evening News, 28 January 2008,
in favour of the Perrin Technique. (link under my signature)
If you have a response please write to postbag@men-news.co.uk
Cheers
John
*Postbag - Manchester Evening News*.
Carmel Thomason's otherwise well-researched and written article, (*Unlocking
secrets of ME (Manchester Evening News, 28 January 2008*) may unwittingly
give the erroneous impression that we now thoroughly understand the physical
cause of M.E (*Myalgic Encephalomyelitis*) and, further, offer a false hope
of substantial recovery, if not cure, which is rarely, if ever, realised.
It is, essentially, a big advertising splash for one of a number of
treatments, which is, at least, controversial and, like many others
(including Reverse Therapy, Mickel Therapy and The Lightning Process), may
cost hundreds of pounds.
Some of the theories and workings of the treatments are not even understood
by the practitioners themselves, most are untested by independent scientific
research and all are unrecognised by official medical bodies but, instead,
rely on faith and, one-sidedly, testimonials from some who say it helped
them but nothing from the dissatisfied customers.
It is not true to say that, if a treatment does you no good, it will do you
no harm. For veteran M.E. sufferers of decades, the disappointment of the
failure of yet another treatment, which held promise, may be the final
straw.
Applying some common sense, it would seem reasonable, if any of these
treatments really worked, to expect, by now, a big dent in the number of M.E.
sufferers remaining ill and the NHS would leap at the opportunity to offer
them free and get people back to school and work. Experience shows this does
not happen.
I wonder how many therapists would be sufficiently confident about their
treatments to - just as some lawyers offer a "no win, no fee" service - give
it freely and only take payment if their patient recovered to their original
state of health and did not relapse for, say, twelve months? And I wonder
how many of those who did would stay in business?
Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org
http://tinyurl.com/2ov7ya
Unlocking secrets of ME (Manchester Evening News, 28 January 2008)
Carmel Thomason
FOR years ME, also known as myalgic encephalomyelitis or chronic fatigue
syndrome, has baffled medical professionals.
In the Eighties it was known as 'yuppie flu', its symptoms often dismissed
as being all in the mind.
Nicole Roberts-Morris is one of hundreds of thousands who know differently.
The mum-of-three from Bollington watched the condition transform her
daughter, Imogen from a happy go-lucky 11-year-old into a pale shadow of her
former self and, sometime later, the same thing happen to her younger
daughter, Lena.
"Imogen had a bit of a back problem, which we couldn't get to the bottom of,
but other than that she was a fit and healthy 11-year-old," Nicole
remembers. "She was the fastest runner in her class and was about to take
grade three on the cello. Then her teacher said Imogen didn't seem to be
able to concentrate in class and Imogen herself started complaining that she
couldn't think straight or run around the playground any more.
"I took her to the doctors about six times. He could find nothing, but she
went downhill so quickly it was frightening - she became a different person
altogether. We'd find her scrabbling around in the bottom of the bed doing
low moaning because she was in agony, half conscious and hallucinating with
bad vivid dreams. Every other night she'd wake up in a cold sweat with
palpitations and shaking uncontrollably. Eventually it got to the stage
where she couldn't get dressed and come downstairs."
Imogen had many of the associated symptoms of ME such as severe and
debilitating fatigue, painful muscles and joints, disrupted sleep, gastric
problems, headaches and poor concentration. However, diagnosis still proved
difficult.
Currently diagnosis is made through a process of elimination.
The cause of the condition is still uncertain and diagnosis remains
problematic because the symptoms are similar to those present in several
other medical conditions. There are also currently no examination findings
which can confirm a diagnosis, no accepted cure and no universally effective
treatment.
"Both Imogen and Lena were given blood tests to rule out other illnesses,
but doctors said to both of them, 'There is absolutely nothing we can do to
help you - you'll get better in your own time.'"
Suffered
Nicole feels that perhaps she was more prepared than some because her
brother had suffered with the condition in his early 20s following a bout of
glandular fever. Nevertheless, it was still a desperate and frustrating time
for all the family.
"It was heartbreaking for us. We didn't understand the illness so we could
never really expect friends and family to.
"Imogen was out of school for five years and Lena for two. When Imogen was
getting better people would see her out and think, `What's she doing?' But
they wouldn't see how she was when she came back home. I suppose that caused
a lot of doubt in people's minds - `Why was she having a tutor at home when
she could go to the park and enjoy herself? She should be in school.'
"You worry about what people might think, but in the end you just see your
child getting better and think: `Great!'"
It is estimated that ME affects 193,000 in the UK and in August last year
the National Institute for Health and Clinical Excellence (NICE) launched
long-awaited guidelines on its diagnosis and management.
Consultant Paediatrician, Dr Esther Crawley, was part of the guideline
development group working towards making access to treatments more available
within the NHS.
"ME causes symptoms of varying severity and can be very debilitating in
children and young people," she says. "We frequently see children who are
very severely affected and unable to get out of bed. The guideline provides
useful advice on how to diagnose children with suspected ME and makes it
clearer when a child or young person should be referred to a specialist
service. Although there is no known drug to treat or cure the condition,
clinicians can provide practical help to individuals such as advice on
managing activity, rest periods, sleep patterns, diet, equipment to help
maintain independence and advice and support with education."
Although the outcome is far from perfect at least there is now a recognition
that this, often controversial condition, is indeed very real.
The ME Association suggests that an early diagnosis together with adequate
rest during the acute phase and during any relapse appear to bring the most
significant improvement.
However, here in Manchester, pioneering work led by osteopath, Raymond
Perrin, seems to be leading towards a more specific diagnosis and treatment.
The Perrin Technique is based on the belief that ME is a physical disorder
that leads to a build up of toxins within the brain and the spine. It uses
definite physical signs to diagnose the condition and treats it by improving
the drainage of toxins from the central nervous system.
Dr Perrin explains: "It such a baffling disorder because it's not one bug or
virus that causes it - it's much deeper than that. I think that I've come up
with some answers and we are getting there, bit by bit.
Physical problem
"ME is a very real physical problem. There are physical signs of it - tender
points in the chest and abdomen, areas of the spine that are not normal
shape and the cranial rhythm the fluid drainage is very dysfunctional.
Everything is very congested and tight.
"I've discovered with ME that there is a backflow of drainage of lymph from
the central nervous system - it should drain out but it's draining back into
the system causing toxins to build up in the brain and the spine. What our
treatment does is to reverse that - we increase the drainage of the
lymphatics by manual massage techniques, gentle manipulation, very gentle
movements of the spine and cranial treatments which stimulate the fluid
around the brain.
"Once the toxins are out of the brain it will start working better and
eventually the body will follow suit.
"Treatment is initially once a week and the frequency gradually reduces over
time.
"It can take a few weeks or months to see an improvement but most people
begin to feel the benefit within a month."
Clinical research at the University of Salford has seen hundreds of ME
sufferers helped though the Perrin Technique. Now further research is
underway at the University of Central Lancashire, to include a larger
clinical trial looking at diagnosis of the illness.
Meanwhile, Nicole is convinced that it is thanks to the Perrin technique
that both her daughters have recovered so well.
After being out of school for five years, Imogen, now 18, is studying for
her A-levels at the same time as the rest of her peer group and Lena, 15 is
also back in school full-time, working towards her GCSEs.
Relief
"It was such a relief to talk to Raymond and get an explanation for some of
what was happening," Nicole says.
"He never claimed to cure it, but said that he might be able to control it
and once he explained what was going on in their systems it all made sense.
"Even though people say everyone with ME is different and they all have
diverse ailments - they don't.
"They all have similar ailments but at different stages and some don't go
down as low down the ME scale as others.
"The Perrin Technique is a non-intrusive treatment so you know you're not
going to come to any serious harm.
"After six months of treatment Imogen could start reading again and we could
go out together as a family - it was then that she was able to restart her
education and the tutoring service began an hour a day with her.
"She still has to pace herself. But she is managing it and sees Raymond
every three months to keep her spine in balance so the drainage works quite
well.
"Lena was out of school for two years with ME. Luckily she began treatment
much earlier than Imogen - I'm sure she would have got as bad if it wasn't
for her early diagnosis by the Perrin clinic."
Raymond Perrin has clinics in Manchester city centre and Prestwich.
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