Not Just A State of Mind

http://edinburghnews.scotsman.com/comment/Time-to-wake-up-to.4448050.jp


Time to wake up to fact that ME is not just a state of mind
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It came as no surprise that a leaked health service report revealed that ME
is a condition that has been neglected for years and the treatment of it is
in radical need of a shake-up.

The wide-ranging study of more than 160 sufferers showed they felt they were
neglected and not listened to by the NHS, there were no strategies in place
for them, and there was a lack of advice concerning support groups. A
"disbelieving culture" was also cited as a problem in a disease that is
believed to affect up to 250,000 people in the UK -- around 4000 of whom are
thought to live in the Lothians.

However, a list of recommendations in the report -- together with an
expected paper from the Scottish Government later this year -- has led to
optimism among charities supporting Myalgic Encephalomyelitis (ME).

Authors of the report, Anne-Marie Comber, a patient involvement worker for
the Edinburgh Community Health Partnership, and senior health promotion
specialist Liz Simpson, highlighted ten areas for improvement in the way the
disease, which is sometimes called Chronic Fatigue Syndrome, is dealt with.
They said ME should be "taken seriously from the earliest stage and patients should be listened to" because an early diagnosis can help with future problems when the disease takes hold.

Health professionals need to be more honest with patients, they said. They also need to abandon "negative attitudes" and produce leaflets highlighting what support and help was available.

The report said: "The responses to this survey have described a cluster of
conditions that have a major impact on people's lives. Some are forced to
take drastic steps to change their lives in order to cope. Examples of good
practice mainly centred around sympathetic staff attitudes, helping patients
feel they were being listened to. "Many of the respondents reflected a
negative response from services and the public towards having these
conditions, which focus mainly ona disbelieving culture -- the conditions
treated as not real and individuals seen as hypochondriacs. The conditions
were treated as if they were mostly psychosocial or 'in the mind' rather than
having physical symptoms."

There are still many gaps in the understanding of ME at a clinical level. It
is a physical illness, and many sufferers are fobbed off with being told they are in fact undergoing mental or emotional problems. It remains difficult to trace, and can have various effects on people.

In some it can mean, with appropriate treatment and care, the sufferer can
lead an entirely normal life. At the other end of the scale, it can render
some people virtually helpless, in some cases with them unable even to feed
themselves. One factor of the care offered by the NHS was that there was no
difference in the way sufferers were treated, regardless of age or severity
of the condition.

The report even found that a lack of structure in the way care was offered
led to desperate sufferers seeking their own remedies and making things
worse. It continued: "Suggestions for service improvements given by the
respondents seemed neither costly nor unrealistic. Listening to and accepting what patients say would also make a huge difference."

The report will be published once NHS Lothian has an ME lead in place to
oversee its implementation. It is understood to be the most comprehensive
survey of ME in the Lothians area, and when it was put out ME charities were
impressed with the level of response. Among those strongly-worded replies
included tales of doctors refusing to diagnose the illness and people having
to resign because their bosses wouldn't believe they had ME.

One respondent said: "He (the doctor] put the fatigue down to viral
infection, then stress, then anxiety/depression, and treated it as depression
with medical support. He was reluctant to give me the diagnosis ME, he was
keen to give the diagnosis a mental emphasis."

Ana Semple, 63, a committee member of the Edinburgh ME self-help group, has
had ME for 20 years. She said: "Since I was diagnosed, public attitudes have
improved. Everyone has heard of it and most people know someone who has it.
In some quarters it has led to people saying you are shying away from life,
but in reality, ME sufferers who try and show they aren't can do themselves
more harm than good. But in that time the services have never been there.
Hopefully if everything in this report is implemented it will lead to a
drastic improvement."

Jackie Sansbury, director of strategic planning and modernisation, NHS
Lothian, said: "NHS Lothian has now completed a piece of work, which was one
of the first of its kind, to identify the needs of patients with ME. The
report will form the basis of further discussions between health care
professionals and local patient groups on how we take services forward in the
future. At this point it would be premature to say how the future of ME
services will change."

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(c) 2008 Edinburgh Evening News

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This is the biggest problem that I've faced: doctors who are convinced that because I'm a woman, I have psychiatric problems.  When I was married, it was attributed to "resenting your husband making you work" and when I was divorced it was attributed to that.  A single friend was told that she could cure her CFS by getting married.  It doesn't matter what your marital state, some doctors seem to think you'll improve if you change it.  And if your symptoms don't improve, they think you should change it again!

When I've said it was not psychiatric because there was viral onset, it's been pooh-poohed, or ignored completely.

When I've reported that anti-depressants were useless or, worse yet, made me sicker, I was deemed "uncooperative" and subjected to verbal abuse about not wanting to go back to work.

Doctors turn things around in their minds until the cause/effect fits what they want to hear.  I was told that I didn't stop exercising because I got sick, I got sick because I stopped exercising.  I wasn't fired because my symptoms were so bad that I couldn't work, I developed symptoms/depression after being fired, and therefore, all I had to do to cure myself was to go back to work ... to the job that I was unable to perform because of the symptoms!

The #1 thing that I, as a patient, want to say to doctors is LISTEN TO ME, DAMMIT!  Don't sit there twisting things around to make them fit ... you'll make a better diagnosis if you write down exactly what I tell you.

If I had gotten the pills I asked for the first time I asked for them, in 2000, I likely would have been back to work in a month or so.  Instead, it took years, and sufficient physical deterioration occurred that I'm now told I'll never work full-time again.  Not because I didn't want to go back to work, but because the doctors refused to give me what I told them would get me back to work in a jiffy.  It wasn't what they wanted to prescribe, because it wasn't what they wanted to diagnose.