Thyroid disorders 'misdiagnosed'

BBC NEWS - Health - People with suspected thyroid disorders are being mistreated and misinformed, experts have warned.

British Thyroid Association doctors say some people are being given the wrong tests and the wrong treatment.

NHS doctors abide by expert guidelines - but the BTA says the problem comes when patients go outside the NHS.

Around 3% of the UK population has an underactive thyroid, which should be diagnosed with a blood test and treated with a synthetic hormone.

Symptoms can include being very tired, feeling the cold, having difficulties with memory or concentration, weight gain and fertility problems.

The Royal College of Physicians (RCP) recently set out guidance for how hypothyroidism should be diagnosed and ...........

Would CBT help professor WESSELY ?

New Zealand doctor receives Peter Snow memorial award

The 2009 Peter Snow Award for rural health research and service - given annually to honour the memory of Dr Peter Snow, the New Zealand doctor who gained international attention for his research into 'Tapanui Flu', otherwise known as ME – has been given to Dr Garry Nixon.

Read more... (3rd comment)

ME Conference

Subject: Summary of the Conference
Speaker(s): Anthony L. Komaroff, MD
Date/Time: 3/15/2009 1:03:33 PM

Australian Grand Prix action

What really happened to Sophia Mirza who died from ME/CFS

Sophia's mum Criona tells how her daughter Sophia unnecessarily suffered and died from the very much misunderstood diesease of ME. Sophia died because of the greed of some doctors and the ignoranc...

OOPS ...

HOT Tea CAUSES oesophageal cancer

According to this population based study, drinking hot tea was strongly associated with a higher risk of oesophageal cancer.

An accompanying editorial says the findings should not detract from the time honoured ritual of drinking tea, but recommends following the advice of Victorian cookery writer Mrs Beeton.

She prescribed a five to 10 minute interval between making and pouring tea. The research paper's authors talk about their findings in a video, linked from both the research paper and the editorial.

Lack of quality science in ME/CFS research

"As a scientist with 12 years research experience I am shocked at the lack of high quality research in the area of ME/CFS particularly in the area of CBT and GET.

What is extremely worrying is that NICE have used this research to draw up guidelines which will have far reaching implications for patients, and which patient groups strongly reject.

Of particular concern are the small sample sizes, the lack of a systematic approach to aspects of the treatment protocol, such as frequency and number of treatment sessions, and differences in the treatment, if any of the control group.

Rather more worrying is the range and efficacy of the methods used for evaluating the outcomes of the trials, making direct comparison between RCTs (randomised control trials) difficult.

In fact the use of self-reporting questionnaires in ME/CFS studies is in itself controversial, with recent reports showing that there is no correlation between activity scores recorded on an actometer used to measure physical activity (which were lower after treatment with CBT and GET) and the SF-36 scores (self-reported data) [1]

It is extremely concerning that such poor scientific data is being used to recommend treatment that can, as has been shown by a number of patient surveys from the ME Association [2], Action for Me and the 25% group for severely affected to make at least 33% of people more ill.

While such a mismatch between the opinions of patient groups and adequate scientific data exists, patients will, quite rightly continue to reject these guidelines and continue to campaign for higher quality scientific research into this condition.

[1] Friedber F, Sohl, S. Cognitive-behaviour therapy in chronic fatigue syndrome: is improvement related to increase physical activity? J.Clinical Phsychol. 2009 April (in press)

[2] ME Association survey involving over 4,000 people

Dr Anna Sheridan"

DO not ...

Judicial Review of NICE Guideline for ME/CFS - full judgement

Click here to read the electronic version of Mr Justice Simon's judgement.

Tourist information ...

FALSE BELIEFS ...

Apathy and Pituitary Disease: It Has Nothing to Do With Depression

"Increasingly, patients with pituitary disease are evaluated and treated at cancer centers. In many ways, these patients resemble patients with other malignant brain tumors. Although the majority of pituitary adenomas are benign, the physical, emotional, and cognitive changes that these patients experience on their well-being is malignant.

Pituitary disease causes a variety of physical illnesses resulting from the alterations in the hypothalamic-pituitary-end organ axis.

In addition, patients with pituitary diseases may experience many emotional problems, including depression, anxiety, behavioral disturbances, and personality changes, above and beyond the many reactions these patients may have to the .............."

"There is a growing understanding that pituitary patients may experience these emotional problems as a result of long-term effects that the pituitary tumor itself, treatment, and/or hormonal changes have on the hypothalamic-pituitary-end organ axis.

The authors present a series of cases, in which patients with pituitary disease were diagnosed and treated for depression and showed little response to the treatment for depression.

When the diagnosis of apathy syndrome was considered and treatment implemented, the patients’ condition improved.

A review of the literature on apathy, hypothalamic-pituitary-end organ axis dysfunction, and treatment for apathy syndrome is included."

Sad outcome for people with ICD10 ME

Simon Lawrence, Chairperson Rapid Responses to:
High court rejects challenge to NICE guidelines on chronic fatigue syndrome BMJ 2009; 338: b1110

"25% ME Group Response to the ruling concerning the NICE Judicial Review into ME/CFS Guidelines.

This is certainly a very sad day for everyone with neurological ME. A disease that devastates the lives of sufferers and their carers, a disease that not only strips sufferers of their livelihoods, but that often leaves them totally reliant on carers for their everyday needs.

I am also extremely worried where this will lead in relation to the so called treatment therapies of Cognitive Behavioural Therapy and Graded Exercise Therapy. These treatment s in many cases have caused wide spread problems for ME sufferers.

Our Report from 2004 (http://www.25megroup.org/Group%20Leaflets/Group%20reports/March%202004%20Severe%20ME%20Analysis%20Report.doc see last page) reported serious flaws in the therapies and also the fact that many were not helped and a great deal more were harmed by undertaking these programs.
Many of these sufferers were not even severely affected patients before undertaking the therapies!

We have previously quoted that these therapies are flawed when the NICE Guidelines were released:

"Patient experience of this serious neurological illness, which affects up to 240,000 people in the UK has been all but ignored in favour of a psychological approach. The illness affects many body systems and their functions, and an estimated 60,000 develop M.E. so severely they become bed or house bound, with others needing to be tube fed”.

We stand firmly behind this today, especially in light of this court ruling."

There's no coming back ...

'NICE does not listen to patients '

The ME Association has responded to a news story that appeared in the British Medical Journal about the outcome of the legal challenge to the NICE Guideline on ME/CFS. Our response – published in the journal's online 'rapid responses' – appears ,,,,,,,,,,,,.

Countess of Mar slates NICE and the health insurance industry

The NICE Guideline on ME/CFS, and the attitude of many health insurers towards people with the illness, came under withering fire from the Countess of Mar in a debate in the House of Lords yesterday (March 18).

Scandal hospital chief's £45,000 rise

The chief executive of Stafford Hospital, which was condemned yesterday for "appalling" emergency care that may have cost hundreds of lives, took a pay rise of up to £45,000 while the hospital was being investigated.

Martin Yeates, who was suspended on full pay by the Mid-Staffordshire NHS Trust on Monday, was told in a letter on 23 May 2008 of the initial findings of the Healthcare Commission's investigation, detailing the chaotic conditions in the A&E department, with unqualified receptionists assessing patients, a shortage of nurses and doctors and a "complete lack of effective governance".

The letter was copied to the Department of Health but Mr Yeates remained in his post for nine more months, until he resigned two weeks ago, before being formally suspended by the trust.

I lied to a patient. But come on, you do it too. Don't you?

Copperfield wants your answers to his ethical dilemma. Well, sort of. Because he also sort of wants reassurance that he was doing the right thing when he lied to his patient .........

Can people think themselves sick? A crashing idea professor ...

CBT logic ...

Science Or Propaganda?

Wed Mar 11 20:15:49 GMT 2009 comment by Dr. Balance:

"It is well recognised amongst experts that CFS is a term for a number of illnesses. Often, the only symptom these patients have in common is fatigue. Given the different causes, it is lazy as well as illogical to offer one treatment for all.

As far as CFs is concerned, this article was PR for CBT. It's out of date, unscientific and drowning in spin and denial.

Finally, I'm not persuaded about the alleged hate mail. Yes, I've read defamatory and abusive essays relating to Prof. Wessely on the net. I accept he might have received the odd rude letter. Well, so have I. I have ME, I have long promoted ME as a distinct entity and challenged the simplistic psychological explanations. But if there was a defamation and hate mail competition, I'd win hands down.

The lack of a diagnostic test and reliance on criteria which can't differentiate CFS and depression etc means that many people are being misdiagnosed. Thus there are a few individuals who seem to be professional victims (and who hate all things psychiatric). However, most of the abuse stems from the frustration of reading a lot of nonsense about your illness and not being believed.

So what's really worth knowing? There are new research criteria to diagnose ME. And there's a conference in the US discussing the latest findings on CFS.

It would have taken less than five minutes on a medical search engine to show just how biased Prof. Wessely is. Why promote bias and spin?

If NS was a physician, you've just broken the Hippocratic Oath."

Science Or Propaganda?
Fri Mar 13 13:49:00 GMT 2009 comment by Dr. Balance:

"I have been informed that the sentence "It would have taken less than five minutes on a medical search engine to show just how biased Prof. Wessely is" may be interpreted as a personal attack on the individual mentioned. I disagree with attacks on individuals so hereby withdraw that sentence. However, I stand by the notion that the views of the CBT school, as reflected in the article, are biased."

How people can think themselves sick

Can people think themselves sick?

This is what psychiatrist Simon Wessely explores. His research into the causes of conditions like chronic fatigue syndrome and Gulf war syndrome has led to hate mail, yet far from dismissing these illnesses as imaginary, Wessely has spent his career developing treatments for them.

Clare Wilson asks what it's like to be disliked by people you're trying to help

Your most cited paper claims that conditions such as CFS, irritable bowel syndrome and fibromyalgia are all the same illness.

comments

:

Wed Mar 11 23:28:52 GMT 2009 by Jill Cooper:

So, according to this government advisor, people who are diagnosed with Chronic Fatigue Syndrome, have 'abnormal illness beliefs'.

First, it would be useful to differentiate here: what does he mean by Chronic Fatigue Syndrome? Does he refer to chronic fatigue (a symptom of a number of diseases, post viral fatigue syndrome, myalgic encephalitis or, to use the National Institue for Clinical Excellence's criteria for diagnosing 'CFS/ME, someone with fatigue and one other symptom which persists for more than six months, or the Canadian Definition of ME/CFS or someone who has been misdiagnosed with CFS/ME and is later found to be suffering from illnesses such as Celiac Disease but is also stuck with the diagnosis of CFS/ME.

Or, which I feel is more likely, is he just referring to his own patients who seem to be suffering from a form of depression?

I have attended several biomedical research conferences about this cluster of illnesses and thoroughly recommend them.

Time is running out for pseudo-scientists. The scientific evidence which negates their childish theories exists. I suggest, people read it.

Thu Mar 12 22:27:34 GMT 2009 by Dr Charles Shepherd:

As a doctor with no mental health problems who developed ME as a result of a chickenpox encephalitis I can fully understand why people with this illness feel so angry when it is so flippantly described as 'almost all in the mind' or 'How people can think themselves sick'.

Having an inaccurate psychosomatic label attached to an illness creates all kinds of practical problems for patients - inappropriate or harmful treatments and refusal of benefits in particular - as well as discouraging biomedical research into the underlying cause.

So please can the New Scientist return to the more objective position on ME/CFS that it took in 2006 (1) when it reported on neurological abnormalities in the spinal cord (ie dorsal root ganglionitis) in a 32 year old woman who had died as a result of having ME and in 2005 (2) when it reported on abnormalities in gene expression - neither of which could be possibly caused by abnormal thought processes.

OOPS ...

GET ???

enterovirus triggers diabetes

A common gastric virus may trigger diabetes, scientists have found, raising hopes that a vaccine can be developed.

Two separate teams of British researchers found strong evidence that enterovirus infection can trigger the immune reaction which leads to insulin-dependent diabetes. There was also a suggestion that viral infection may be involved in Type 2 diabetes, although how is not clear.

The virus family, which includes more than 100 different strains, can cause vomiting and diarrhoea but often produces no symptoms. By attacking insulin-producing beta cells in the pancreas, it is thought the viruses set off an immune response which spins out of control, leading to Type 1 diabetes.