'AntiPhospholipid Syndrome (APS) vs. MS' might be important for 'phospholipid/omega-3 vs. ME CFS'.

[Guest guest]

Hello,

It looks like this article backs up Ken's hypothesis about Syndrome as

being

a possible result of the disease, Myalgic Encephalomyelitis/CFS.

Du Pre

Poetry website: http://www.angelfire.com/poetry/soareagle/index.html

" By words the mind is winged. " Aristophanes

Website for National Alliance for Myalgic Encephalomyelitis:

http://www.name-us.org

'AntiPhospholipid Syndrome (APS) vs. MS' might be important for

'phospholipid/omega-3

vs. CFS'.

Source: The Times

Date: August 20, 2006

Author: Simon Crompton

URL: http://www.timesonline.co.uk/article/0,,8123-1741009_1,00.html

Ref: http://www.hughes-syndrome.org

Old-fashioned detective work

----------------------------

Dr discovered a disease that affects 150,000 Britons. Now it bears his

name Just across the river from the Houses of Parliament, tucked away in St

' Hospital, works a man who should be recognised as one of the heroes of

modern medicine. Yet despite being hailed around the world as having made one

of the most important medical discoveries of the past 50 years, no one beyond a

select band in the UK has heard of him or the syndrome he discovered - even

though it has implications for all areas of medicine and affects 150,000 people

in the UK.

About 20 years ago, the rheumatologist Dr Graham reported in the British

Medical Journal that he had identified a syndrome that resulted in blood

becoming sticky, leading to potentially dangerous blood clots. Since then, his

discovery has been confirmed as the cause of one in five recurrent miscarriages,

one in five strokes in younger people, and one in five DVTs (deep vein clots).

Sticky blood is also strongly linked with migraine, Alzheimer's disease, and

infertility, and the numbers believed to be affected are larger than those with

high-profile conditions such as Parkinson's disease.

Internationally, hundreds flock to Dr 's lectures and fellow scientists

have hailed his discovery by naming this strange condition syndrome. The

dean of medicine at Barcelona University has said that there are just two new

diseases of the late 20th century - syndrome and Aids.

Yet here? Here we're hardly making the most of a great British achievement. Dr

reckons that only a handful of GPs are alert to the condition and this

lack of knowledge causes thousands of people to suffer needlessly - and

thousands of unnecessary miscarriages. 'Bit by bit, obstetricians and

neurologists are picking up on it but GPs aren't,' says Dr , who runs

the Lupus Research Unit at St 's. 'It's not easy to pick up because

sticky blood can affect every organ in the body. The commonest problems people

have are migraine, headaches and memory loss. Some cases are picked up in

infertility clinics and there is now a simple blood test provided to some women

who have had two or more miscarriages. But it's not routinely available.

It's inexpensive and should be standard for all pregnant women.'

Perhaps one of the reasons why syndrome hasn't hit the headlines is

that its discovery was the result of good old-fashioned clinical detective work

- not massive research funding. Dr made his discovery through carefully

observing and talking to thousands of patients - something, as he is only too

aware, that most doctors nowadays have precious little time to do. He is

obviously a master of the art, in conversation he is polite and enthusiastic -

the kind of doctor you would really want to describe all your symptoms to in

detail.

It started in the early 1970s, when he set up Europe's first clinic for lupus

(a type of arthritis) in Hammersmith Hospital. On his ward rounds, he was

struck by the number of people who seemed to have a collection of symptoms -

memory loss, balance problems, recurrent miscarriage, fluctuating blood

pressure and recurrent thrombosis - who then went on to have strokes and heart

attack. Testing their blood, he found that all had high levels of a kind of

antibody that destroys phospholipid - a fat found in cells.

It was clear that these were not simply lupus symptoms. 'Right from the start,

we knew we were on to something,' says Dr . So he went to other hospital

departments and asked if specialists had seen similar problems. Sure enough,

liver clinics revealed people with liver blood clots who also displayed memory

loss, fluctuating blood pressure and so on. The same pattern appeared in

epilepsy, multiple sclerosis and pregnancy clinics. And all the patients with

these groups of symptoms also revealed high levels of antiphospholipid

antibodies.

Since 1983, a host of research papers has been published, tracing the

antiphospholipid antibody as a key factor in a range of diseases. Dr

believes he now understands the mechanism behind syndrome, or

antiphospholipid syndrome as it is also known.

In people with a genetic predisposition to the syndrome, a virus seems to

trigger the release of antiphospholipid antibodies into the blood. These attack

the slippery coating of blood cells, so they become sticky, jam together and

cause clots. Since clotting can affect every sphere of medicine, the syndrome

can be at the root of many conditions. In pregnancy, clots block the placenta

causing it and the foetus to wither and die. In neurological conditions, such

as memory loss, the clots impair blood flow to the brain.

And now research by Dr and his team at St ' is revealing that

many people with syndrome are being misdiagnosed as having multiple

sclerosis. 'Thirty per cent of people with syndrome have that label

hanging over them at some stage,' he says.

Once syndrome is diagnosed through a blood test, then it is easily

controlled. Taking aspirin, or anticoagulants such as heparin and warfarin,

produces a dramatic reduction in symptoms in 80 per cent of patients. 'We had

one lady who had been wrongly told she had 'mad cow' disease, and she's

well now,' he says. Another was in a wheelchair, paralysed from the waist down

- luckily, she was seen by a neurologist who referred her to us and she can

walk now.'

It must be like being a miracle worker. But you also sense his realism. Sadly,

until doctors throughout the UK become aware of sticky blood, the full

implications of his discovery are unlikely to be realised. 'I'm proud that

the community decided to call it syndrome,' he says. 'But I think

they only did so because my name is easier to spell than antiphospholipid.'

Have you got it?

If you have had one or more of the following, you may have the sticky blood

condition discovered by Dr :

* Memory loss; recurring migraine and headaches; a deep vein thrombosis;

recurrent miscarriage; mini-stroke, or stroke in a young person.

* A testing kit for Syndrome, 28, pounds is available from TDL

Pathology, http://stickybloodtdlpathology, 020-7307 7373

* Visit http://www.hughes-syndrome.org, or call 020-7188 8217

What's in a name?

There have never been any strict criteria for a syndrome or disease to be named

after its discoverer - it's usually a matter of medical colleagues deciding

that they deserve it. There's invariably a more technical name for a condition,

too. Here are some stories behind the eponyms.

* Down's syndrome: English physician Langdon Down published a paper in

1887 describing the condition now known to be caused by a genetic defect. The

term was not officially adopted by the World Health Organisation until 1965

- before then, Down's syndrome was still known as Mongolian idiocy.

* Alzheimer's disease: The German neurosurgeon Alois Alzheimer first referred

publicly to what he described as a 'peculiar disease of the cerebral cortex'

in November 1906. By 1910 the condition had become known as Alzheimer's

disease, despite lobbying by Italians, who favoured the name Alzheimer-

Perusini in honour of another researcher.

* Reiter's syndrome: a combination of genital, eye and joint inflammation,

was actually documented by Sir Brodie in 1818 - almost 100

years before Reiter documented a single case. However, a 1942 article

describing the first known American case of the disease credited Hans Conrad

Julius Reiter alone as having discovered it, and the eponym stuck. In recent

years Reiter's record as a Nazi war criminal has prompted efforts by members

of the American College of Rheumatology to have the disease renamed, but

there is no clear process for doing so and the title has so far stuck.

* Munchausen's syndrome: the continuous fabrication of symptoms or an illness

by a patient is named not after its discoverer but after the fictional Baron

Munchausen, famous for his tall tales - such as sailing to the moon in a

ship.

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© 2006 Times Newspapers Ltd.