Shirley Conran in the Sunday Express UK | ProHealth Fibromyalgia, ME/CFS and Lyme Disease Forums

Shirley Conran in the Sunday Express UK

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tansy

New Member
Sunday Express, 12 September 2004

"I once wrote that life's too short to stuff a mushroom but some days I was
too tired to even buy one . . ."

When Shirley Conran quit her high-flying job as a journalist on a national
newspaper 30 years ago it took her colleagues by surprise. Most assumed she
was stepping down to pursue her career as a novelist. Few could have guessed
she was so exhausted that she simply could not go on. Shirley, now 71, had
begun to suffer from myalgic encephalomyelitis (ME) or chronic fatigue
syndrome.

For her, as for many others, her ME emerged after she contracted viral
pneumonia.

She recalled: "I was unconscious for four days. I was 40. When I came out of
hospital I felt 70, although at that time was unaware of what was wrong."

Many doctors still refuse to give ME a medical pedigree but in Britain there
are an estimated 120,000 sufferers.

ME means an almost constant sense of exhaustion but with ups and downs.
Shirley said: "When you are feeling up, that's the moment to get on with
your work. When you are down, you depleted energy will just about suffice
for reading or watching television."

A Government report, the outcome of a two-year investigation by leading
doctors, has confirmed the existence of ME as an illness. But many
physicians still refuse to recognise it.

Shirley said: "Without a shred of sympathy, they tell patients they are
malingering and order them to pull themselves together. That was the shabby
treatment I got."

Her symptoms were excessive fatigue, general pain, mental fogginess and
often gastro-intestinal problems.

Symptoms can vary from patient to patient and include headaches, sore
throat, sleep problems and abnormal temperature. The severity of ME differs
widely too. Attacks range from unusual levels of fatigue under stress to
being totally bed-ridden and completely disabled.

For Shirley, the first signs were exhaustion and short-term memory loss.
Furious and frustrated, she tore up cheque after cheque as she made simple
errors entering dates and amounts. She said: "Until my ME was diagnosed, I
never imagined becoming an author. I had a wonderful job in Fleet Street but
with ME it was impossible to keep up with newspaper work. Writing at home at
my own speed became the only solution.

"I discovered that I am at my best at 2 o'clock in the morning. When
tyrannical, unforgiving ME starts sapping my energy, I go back to bed. I was
lucky because, as a writer I am able to pick when I feel in relatively good
form. That's not the case for most people."

"At interviews to promote my books, I often lost track of an interviewer's
questions and failed to answer. I am the woman who wrote that life is too
short to stuff a mushroom. In fact, I was so poorly that I could not even
summon up enough strength to buy a mushroom."

Shirley felt close to total disability while she was travelling the world to
promote Superwoman. She said: "I had to use a van to tour Britain - that way
I could have a mattress in the back and take a rest when I just felt I
couldn't cope. People who did not understand what was wrong thought I was
putting on air because I turned down a grand limousine.

"To make ME even more difficult to identify and treat, the symptoms tend to
wax and wane. Sometimes I felt I just could not carry on but I fought back
by letting my body tell me when to let up take a break and start up again.
These swings, coupled with the fact that the cause of the disease is not yet
known, make it extremely difficult to diagnose."

Shirley's first port of call was a psychiatrist. He merely made her fill in
forms. She turned to another and got the same form-filling treatment. Her
psychiatrists encouraged her to meet more people as a remedy.

She said: "Amazing advice to give somebody who had piles of invitations on
her desk."

Shirley had gone through two marriages by the time she developed ME. Her
third husband, businessman Kevin O'Sullivan, showed no sympathy when she
told him about her ailment. She said: "He took me to the top of Primrose
Hill and told me to run down the other side. Then he gave me a push. I was
so upset I scratched his face."

Shirley is not surprised ME is not universally recognised as a life-wrecker.
She said: "In the absence of some high-profile cause or observable marker,
many clinicians don't accept ME as a genuine illness." That helps to explain
why for so long she kept her illness quiet. She said: "I did not want to
alarm my family and friends. I was determined to cope on my own."

Now she has decided to go public to help fellow sufferers, most of whom have
no idea what is wrong with them. Shirley said: "I want to use my own
experience to encourage others to adapt their lives to the energy
fluctuations associated with ME. Don't be hopeful, be practical. There is no
cure, only periods of remission. When you are really down, going to the
lavatory can be like climbing Mount Everest."

Research into ME is multi-pronged. It focuses on viruses, environmental
toxins and genetic predisposition. Stress seems to be the most frequent
trigger. Doctors say it is essential to reduce stress. Strenuous exercise
can also prompt a serious relapse. ME patients need to follow careful diets,
as they are inclined to put on weight, and measured lifestyles.

Shirley said: "Coming to grips with ME is made more difficult by the demands
and expectations of family, friends and colleagues. They have enormous
trouble in dealing with the individual who, in their view, has replaced what
they regard as your normal, healthy self. Even holiday travel becomes
intolerable. Shirley said: "That's why I have recently sold my beloved
French homes on the Riviera and in Aquitaine."

In the absence of back-up from family and friends, sufferers have to seek
advice on how to boost morale and even on how to find an understanding
doctor.
 

kooky

New Member
This article re: Shirley Conran is very interesting. If someone as rich and powerful as she is had received this type of treatment from doctors, what hope do we have.

Don't you find that perhaps the psychiatric lobby is far too powerful (worlwide), specially concerning ME/CFS? Do you have any opinions on this subject? Why are so many 'illnesses' of unknown aetiology being labelled as being 'psychological'.

I have just finished reading 'Skewed' by Martin Walker, and will be reading Olsen's Web at a latter date. It makes a good read and offers insight into the political world of medicines and pharmaceuticals.

We live in hope. Take care and best wishes.
Kooky

 

tansy

New Member
who have ME/CFIDS can be treated just as badly too. PWME in the UK, who have exercised their right to access their medical records, will tell you doctors have far too much freedom in being allowed to express their opinions on patient’s personalities and mental states. These medical records often show positive test results the patient was not told about in case they continued to use them as part of their illness belief, equally what is actually been omitted is equally significant for the same reasons.

Susan Sontag’s much quoted comment “Theories that diseases [illnesses] are caused by mental states...are always an index of how much is not understood about the physical terrain of a disease....." highlights the problem. The medical profession is often reluctant to accept its own limited understanding, so much easier to blame the patient. It is the cheap and easy cop out.

In the 1980s Simon Wessely, as a junior doctor, developed his own definition of CFS and set out to prove this was right by dragging back out of the almost forgotten archives medical literature on hysteria including its link to outbreaks in the 1950s. It is SW who is responsible for the term CFS which so trivialises ME/CFIDS. He, and a few others of a similar mind, then flooded the medical media with one paper after another; these are what most doctors read; doctors have little easy to find access to information on the biophysical nature of these illnesses and most cannot be bothered; why should they, after all they have been told most of what we suffer is in our minds.

Then we have the insurance companies who realise these illnesses are costing them their profits as more cases are diagnosed and make claims. Who do they call in as medical experts and advisors? Yes, the very same people who insist these illnesses are essentially psychosocial; a bit of cheap rehabilitation and they can get them all back to work and not have to pay out.

The Wessely School and its followers have done very nicely out of all of this in terms of financial and career gains, they have friends in high places. In the UK the powers that be are attracted to a quick cheap fix, SW et al provide them with this just as they did in GWS/I. So our govt appears to be responding to the needs of those with these illnesses but of course is just doing all it can to avoid the real answers being found and treatment protocols offered elsewhere, which would cost more, being made available in the UK through the NHS.

Martin Walker also wrote “Dirty Medicine”; his books, and Osler’s Web, give us all an insight into the world of medicine and pharmaceuticals. I thought I knew how corrupt and dishonest it all was before researching again, it is clearly even worse than I had been told and imagined.

There are signs of a movement against the influence the pharmaceutical industry has over health care. Just this week in the BMJ there are two short pieces; one about an inquiry into the high cost to the NHS of the pharmaceutical industry’s power and it’s cost to the NHS; the other being a very honest account by one GP. I have posted them both here.

In terms of ME/CFIDS/CFS, FM and other similar illnesses, there has been enough research to indicate they have a biological aetiology, but this is being ignored; patients and their lives get forgotten in all the banter and professional differences of opinion. Most of us believe that it will take politics now to ensure things move forward again and funding is put in place to ensure this happens.

"I take great issue with the current recommendations that no additional testing should ever be done. I believe there are indications for more advanced testing"
Dr Daniel Peterson: a Diplomate of the American Board of Internal Medicine who first identified CFIDS during an outbreak in Incline Village, Nevada, in 1984 (JCFS 1995: 1:3-4:123-125). At the Second World Congress on ME/CFS and related disorders, held in Brussels in September 1999, Peterson said he was amazed at the misconceptions that existed about ME/CFS; he said that ten years ago, he believed ME/CFS would be resolved by science; he had now changed his mind and believed it could only be resolved by politics)

How right he was.

In the UK we have an even more serious problem. The most influential so-called patient organisation AfME, are quoted as representing us yet their members have no say in their policies or activities. They support PACE, FINE and the Wessely School. The All Party Parliamentary Group (APPG) on ME is just as bad, even MP have complained to their constituents about it.



Love, Tansy
 

RENA0909

New Member
I just posted about the 2 page story in the sunday express about a woman with fibro cos I had already read about Shirley Conran.
Have a look at the story and see what you think.

I always read your posts by the way!

TAKE CARE
RENA UK
 
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