Letters, Daily Mail, 27 December

From ME Association News page

‘Don’t just dismiss this link with ME and polio’

Victoria Lambert’s appreciation of poliomyelitis and post-polio syndrome (Good Health) should have included the fact that ME and polio are almost certainly sister diseases, caused by the same family of viruses. Ten years ago, in my book ME: The New Plague, I argued that ME was a persistent viral nfection related to poliomyelitis. When my study of ME in schools was published in the Journal of Chronic Fatigue Syndrome, it hit the headlines because it revealed that ME was the biggest cause of long-term sickness [absence] in children and staff.

On his TV show on the subject, Adam Boulton described ME as ‘attacking schoolchildren now’. Some children are bedridden or in wheelchairs, others can’t swallow and have to be fed by tube. Sounds familiar? It should do. Yet the British scientists’ lab work that underpinned my work was generally dismissed. This – tragically – led to misunderstandings and even to the mistreatment of children and young people in the UK, which still persists today.

We now require proper science about the link between ME and polio, not the psychobabble we’ve had to put up with for the past ten years. We must stand up for these genuinely sick children. The reason no one believed ME was a persistent viral infection related to poliomyelitis is outlined at www.tymestrust.org/tymesmagazine.htm  along with news of the latest developments.

JANE COLBY
The Young ME Sufferers Trust, Stock, Essex

[Note supplied by Jane Colby: this letter was slightly edited for publication; in the original I referred to myself as 'co-author' of the study in the Journal of CFS, since Dr Betty Dowsett and I carried it out together. I have also inserted the word 'absence' in square brackets; it was omitted in the paper, which changes the meaning.]

Read Daily Mail article here

MP calls for review of use of medical expert evidence.

UK Gov Must Review “Expert” Medical Evidence

Juror Claims Keran Henderson is innocent – response
Contact: John Hemming MP

John Hemming MP, Chairman of Justice for Families, has responded to a juror’s claims that Keran Henderson is innocent with a call for the government and the judiciary to review the use of medical expert evidence.

“It was revealed today,” he said, “that there is a juror from Keran’s trial who believes that she is innocent. Her case has been taken up by the Angela Cannings Foundation who believe that a miscarriage of justice has occurred.”

“This makes it clear that the way in which our courts use expert evidence and particularly medical expert evidence has insufficient intellectual rigour. Evidence which is clearly unreliable and based upon pet theories without proper research groundings is accepted as fact in court.”

“Very often doctors make incorrect diagnoses. That comes with the territory. However, when we are asking medical expert witnesses to diagnose innocence or guilt we need more certainty than is the case for most medical treatment. The effects of a false diagnosis of guilt in court generally cause far more damage than a false diagnosis for ordinary treatment.”

“I have written to the Lord Chief Justice about this and also been in touch with Lady Scotland. The current situation results in court decisions being based upon shifting sands and innocent people end up in a quagmire as a result.”

Ends

Note for Editors:
The jurors claim was broadcast by Radio 5 live today.

ONE CLICK comments on Daily Mail Camelford article

From The ONE CLICK Group

One Click Note. Wessely Unravels. The Daily Mail has now elected to expose the lethal cover-up of what was done to  the residents of Camelford in Cornwall in one of Britain’s worst health scandals that took place in July 1988.

One of the primary architects of this lethal cover-up was psychiatrist Professor Simon Wessely (s.wessely@iop.kcl.ac.uk ), notorious for his equally scandalous cover-ups of the biomedical plight of Gulf War Veterans and ME/CFS labelled patients.

In the Journal of Psychosomatic Research, Vol 39, No 1. pp.1 9. 1995, Wessely together with his colleague Anthony David, published a paper entitled The Legend Of Camelford : Medical Consequences Of A Water Pollution Accident  (http://tinyurl.com/3a4fev ). “There was little cause for concern,” announced Wessely.

Accusing Camelford residents of somatisation and the media of irresponsible reporting of this water-poisoning incident,  Wessely blamed those affected of sensationalising their symptoms in order to get compensation.

It is high time that psychiatrist Simon Wessely and his associates were cast out by their profession, further exposed  for the charlatans that they are and that respective governments cease to fund their activities that do so much damage to patients.

Simon Wessely et al have brought psychiatry into terminal disrepute. The Daily Mail now confims what so many patients  who have passed through Wessely’s hands have known for decades – that this psychiatrist specialises specifically in cover-ups designed purely to save government funds. The evidence mounts year on year.

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Daily Mail
14/12/07 – News section
A lethal cover up: Britain’s worst water poisoning scandal
By SUE REID

At first glance, Angela Franks looks in good health.

Standing on the seafront in her hometown of Exmouth, the wind ruffles her strawberry blonde hair and the long skirt  which she wears down to her ankles. The illusion, however, is short-lived.

As she starts to walk, it is with a heavy limp and within 50 yards she is so exhausted that her entire body shakes  uncontrollably.

After Angela finally reaches the local coffee shop, the trembling of her swollen legs is so bad that the table rocks haphazardly, threatening to spill her mug and croissant onto the floor.

No wonder, near to tears, she declares bravely: “When I am  dead, I want an autopsy done on my body. It might help all  the people who, like me and my two children, drank the water in Camelford all those years ago.”

For she and her family were victims of one of Britain’s most high-profile public health scandals in which victims complained of brain damage, memory loss and joint problems.

They were enjoying a caravan holiday in the picturesque north Cornish town when the country’s worst water pollution  incident happened on July 6, 1988.

A relief delivery driver turned up at the local Lowermoor water treatment works on the edge of Bodmin Moor with a 20 ton load of highly caustic aluminium sulphate, which is used to clear cloudy water ready for drinking. The toxic chemical  was accidentally tipped into the wrong tank, feeding water to Camelford.

Ninety minutes later, out of the taps in a 140-square-mile area of Cornwall, came a foul water which poisoned everyone  who drank it.

Angela has never spoken out until now.

But finally, after two decades of stone-walling by the authorities, alarming facts about the Camelford water incident are beginning to emerge.

This week, a coroner opening the inquests of two women who lived in the area at the time called for a new police  investigation into the tragedy.

He said the Devon and Cornwall constabulary must “look into the allegations of a possible cover-up”.

He acted following the discovery that both dead women had “high levels” of aluminium in their brains, which could not  have got there by chance.

Disturbingly, the tests on the women are the first of their kind although it is thought that up to 20,000 local people  and 10,000 holidaymakers – like Angela – unwittingly drank the Camelford water in the hours and days after the   spillage.

Hundreds began to suffer effects after drinking or bathing – including skin peeling, hands and lips sticking together, hair  turning green and fingernails blue.

By nightfall that day, people were vomiting and had diarrhoea.  Next morning, many had skin burns, aching joints and mouth ulcers that took weeks to heal.

Angela’s family – which included her seven-month-old daughter, Cherie, whom she had just stopped breast-feeding – and a son, Daniel, of 20 months, were no exception.

Less than two hours after the Camelford spillage, she made a cup of tea in the holiday caravan and the milk curdled. Angela threw it away, boiled the kettle and made a cup of black coffee instead using water from the tap.

Almost immediately she began to feel queasy.

Later that evening, when she washed her children, they screamed as the water touched their skin and stung their eyes.

In the caravan, she put the children to bed.

“Cherie was hysterical at one point. Her eyes were red. She had diarrhoea, so I didn’t like to give her milk. Instead, I  made up a bottle of boiled water from the tap.

“I didn’t realise it then, but I was poisoning my own baby,” she says.

The following day, Angela’s hair was bleached white as a result of the shower she had the night before. Cherie had nappy rash. Daniel was sickly.

John, her husband, had mouth ulcers.

Assuming they had suffered a simple bout of food poisoning, they continued to drink tea made with tap water and gave the children orange juice, diluted with the same water.

“We were told nothing,” remembers Angela.

“We had no idea every drop of water in the whole area was dangerous to drink.

“We went to the doctor and he said there had been other people with the same symptoms.

“He gave Cherie some Calpol. He said she must have caught a bug. He never told us not to touch what was coming out of the taps.”

As the family left the surgery, loudhailer vans appeared, telling everyone that there was something wrong with the water.

“They said it would not hurt anyone and to disguise the taste of the water with orange juice.

“I begged the lady at the caravan site to give me some fresh water to feed the baby. The next day we went home,” she says.

A few months later Angela became ill.

She was diagnosed with cancer of the lymph glands of the leg.

She had an operation to remove the resulting malignant growth on her left thigh. She has since undergone another operation to remove a new growth on the same leg.

“At the time, I didn’t blame the Camelford water,” she explains.

“Then, as more and more people from that area began to complain of sickness, I realised that it could be the cause of my  problems.”

Angela also has osteoporosis in her neck.

Her specialist believes she may have a neurological complaint which causes her to shake.

There is also speculation that her brain has been damaged and she has early onset Alzheimer’s.

Meanwhile, her daughter, now a beautician, is constantly tired.

Her son a is keyboard player and guitarist but the joints in his hands have become inexplicably painful.

“I have to wonder if they have been damaged by the Camelford water too,’ she adds.

“No one knows what the long-term effects will be of feeding a baby and a toddler amounts of water that contained between 500 and 3,000 times the maximum levels of aluminium that was safe.”

Yet it is the apparent cover-up by successive governments that disturbs her – and others who fear they were poisoned.

Three children at the local nursery school, where orange juice diluted with the water was served to pupils, were later
diagnosed with leukaemia.

In a single street of Camelford, 13 residents have died of cancer.

Carole Cross died in 2004 aged >58.

An autopsy revealed abnormally high levels of aluminium in her brain and she had suffered a neurological disease. Her  case is one of the two at the centre of the new police investigation.

Her widower, Douglas, says: “The amount of aluminium in my wife’s brain was equivalent to one teaspoonful of that water – yet it killed her.

“There have been myriad unexplained illnesses here – and nearly two decades of those in authority ignoring a catastrophe.

“I believe at least 20 people have died from drinking the water.”

But is he right? After all, cancer and other illnesses can occur in clusters without apparent cause.

Yet what is so troubling about Camelford is that key facts have been obscured.

A Mail investigation into the events of that July in Cornwall has uncovered a crucial and unpublished police report which  shows the Camelford treatment plant was not supervised at the time of the fateful delivery.

The relief delivery driver, from a Bristol chemical company, had never been there before and was given an eight-year-old key to the plant by another driver. Dangerously, the key fitted almost every lock on the gates and manhole covers used  by the South West Water Authority, a public body that supplied the area with water.

Yet the driver was simply told that “once inside the gate, the aluminium sulphate tank is on the left”.

No wonder he made such a disastrous mistake.

The police report explains what happened next.

“The driver looked around, on the left, and he found a manhole cover which he tried with the key. It unlocked. Thinking he had found the right place he discharged his load, pouring the aluminium sulphate into the tank.”

But it was not the storage tank, where the aluminium sulphate would have reacted to draw out impurities from the water.

It was the tank holding treated water just before it was about to go into thousands of homes.

The result, concludes the hitherto unpublished police account, was “a massive and instant contamination of the water supply.”

Worse was to follow. For days, the water authority insisted the water was safe.

Officials took nearly a week to identify the cause of the poisoned water and ten more to reveal it in a tiny advertisement in the local paper.

We have also been handed an explosive letter which reveals how officialdom set out to downplay the Camelford disaster and any wrong-doing by the water authority, which was about to be privatised by the Conservative government of the day.

The letter from a water official to Michael Howard, then Minister of State for Water and Planning, states that a police
investigation into the poisoning incident was viewed as “very distracting”.

It goes on to say that any subsequent prosecution of South West Water would also “be totally unhelpful to privatisation . . . and render the whole of the water industry unattractive to the City”.

So, did these commercial concerns contribute to the fact that the people of Camelford were first lied to and then ignored?

There has never been a public inquiry and, all too often, those who complained were labelled neurotic troublemakers.

The Mail has learned that even local doctors – perhaps advised by the local health authority – turned away those  who were suffering ill-effects, telling them “it is all in your mind”.

But some refused to be silenced.

Douglas Cross remembers the moment he discovered the disaster in the town where he worked as a freelance forensic scientist.

“It was the morning after.

“I had had a cup of tea, the water stayed clear but there was something in the bottom of the cup. I was suspicious  immediately. I went out to look at the river and saw all the fish in the water dead. I picked out five and brought  them home.

“Later, when I tested them, I found they had 70 times the normal amount of aluminium.

“At least 50,000 fish were killed, and 40 lambs in one field where they drank from a mains tap died or were very ill. The  200 animals in a field nearby which had drunk spring water remained well.

“Pigs, dogs, rabbits and cattle became sick. Over 40 Muscovy ducklings died at one farm, 1,300 hens at another.

“Yet they kept saying humans couldn’t be hurt by it. Well if animals, why not people?”

The water was, indeed, deadly. It contained not only aluminium sulphate but other noxious substances, too. As  the acidic liquid travelled from the plant into people’s homes, it corroded the copper pipes and their soldered joints, made of zinc and lead.

“We were drinking a cocktail of metals and god knows what else,” adds Mr Cross angrily.

“We were also advised to boil the water.

“This was even more dangerous advice because it concentrates the contaminants.

“They kept flushing the pipes out for months after the incident.

“This will have stirred up debris in the bends and only have lengthened the amount of time the water was coming through the taps with all sorts of metals in it.”

However, when Mr Cross’s wife first began to lose her mind, he did not blame the Camelford water.

He cannot recall her drinking the water, but now believes she must have done.

For two years before her death, she began to have trouble counting change. She would put out her hand to the shop  assistant asking for it to be worked out for her.

She forgot how to paint, a hobby at which she excelled.

Finally, Douglas took her to Taunton hospital, near their home in Somerset.

“It was at the hospital, the day before she died, that the penny dropped,” he recalls.

“I thought she might get better when the consultant – who had no idea of our Camelford links – came up to me and said  it looked like metal poisoning.

“The next thing, a German locum took me aside. He said they saw a lot of this kind of brain problem in Germany and it was caused by aluminium poisoning.”

Mr Cross contacted West Somerset coroner Michael Rose and explained his fears.

The coroner asked neuropathologist Professor Margaret Esiri and her team at Oxford University to examine Mrs Cross’s  brain and spinal cord.

The results found high levels of aluminium which may have caused her condition: beta amyloid angiopathy, a form of cerebrovascular disease usually associated with Alzheimer’s.  There was no history of the ailment in her family.

“If the coroner decides my wife was unlawfully killed or there was misadventure because of an industrial accident, then we will have touched the truth,” adds Mr Cross.

Two reports by Government appointed advisory groups in 1989 and 1991 each concluded there was no evidence of aluminium poisoning of people in the Camelford area.

They claimed that any suffering had been provoked by anxiety rather than damage to health.

The result? The pollution tragedy was swept under the carpet.

As for South West Water, in 1991 the authority was prosecuted for supplying water likely to endanger public health and fined a minuscule £10,000 with £25,000 costs.

Mysteriously, there were no convictions by the police.

Four years later, after a civil action against the authority, 148 people won an out-of-court settlement in compensation for  any distress caused.

It amounted to a pitiful £400,000. There was no public apology.

Angela Franks received £600 for the disruption of her holiday.

Of course, the money meant nothing compared with her wrecked health.

Today, at 46, she runs a boutique in the market at Exmouth, Devon with a new partner. Her marriage broke up as her health deteriorated.

Today, she says: “We only went to Camelford because our daughter was no longer breastfeeding and on a bottle.

“John and I were a young couple with two lovely children just wanting to enjoy a family holiday.

“Now I believe that I was encouraged to poison my own children.

“I feel so guilty about giving them the water. Never a day goes by without me remembering Camelford and wishing we had never gone there.”

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This information is available on THE ONE CLICK GROUP website
 
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Southampton ME/CFS conference – February 12

From the ME Association’s news page
Southampton conference – February 12

An impressive list of key speakers have been announced for the first of next year’s biomedical and bioresearch conferences on ME/CFS which wlll take place at Southampton General Hospital on February 12. It is being organised by Hampshire Solutions – an alliance for promoting research into ME/CFS and fibromyalgia.

The conference will be co-chaired by Stephen Holgate, professor of clinical pharmacology at Southampton University, and David Peters, first professor of integrated health care at Westminster University.

Speakers include:

Martin Pall, professor of biochemistry – basic medical science at Washington State University (Converging mechanisms in the pathogenesis of ME/CFS and related conditions)

Dr Jonathan Kerr, senior lecturer, St George’s Hospital, London (New insights into ME – gene expression)

Dr Russell Lane, consultant neurologist, Charing Cross Hospital, London (Peripheral components of ME – mitochondrial malfunction)

Dr Byron Hyde, founder of the Nightingale Foundation, Canada (an understanding of ME/CFS through 20 years of clinical experience)

Dr Estabiliz Olano-Martin, Bilbao, Spain (Genetic profiles in aggressive forms of ME and Fibromyalgia)

Malcolm Hooper, professor of medicinal chemistry, Sunderland University (multiple chemical sensitivity)

Dr Abhijit Chaudhuri, consultant neurologist at Queen’s Hospital, Romford, Essex/Dr Federico Roncaroli (a view of the neuropathology of ME/CFS)

Hugh Perry, professor of experimental neuropathy, Southampton University (Systemic Inflammation of the brain)
GPs and healthcare professionals £50, academics and interested lay people £35, patients and carers £20, students free.

For booking form, contact Fiona at The Point of Health, 106 Winchester Road, Chandler’s Ford, Eastleigh, Hants SO53 2GJ, tel: 023 8026 0227. Registration form and appropriate fee to be returned by Friday 18 January 2008. Please make cheques payable to Alliance for FM,ME/CFS (Hampshire Solutions).

Royal Society of Medicine conference – April 28

To express your concerns to AfME contact:

Sir Peter Spencer peter.spencer@afme.org.uk

Trish Taylor Trish.Taylor@afme.org.uk

For Conference programme click here


On its news page the ME Association describes this conference thus:

“Some of the leading figures involved in researching chronic fatigue syndrome will be speaking at a scientific conference being organised by the Royal Society of Medicine in London on April 28.

The Royal Society of Medicine – an independent organisation – says the aim of this meeting is to take a broad look at chronic fatigue syndrome – examining its nature and definition, pathophysiology, epidemiology, clinical assessment and diagnosis, the patient perspective, and various approaches to treatment.  This is a scientific conference and there will be an emphasis on an evidence-based approach throughout.”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

ME agenda note: Speakers and chairs include: Prof Simon Wessely, Prof Peter White, Dr Anthony Cleare, Prof Matthew Hotopf, Prof Rona Moss-Morris, Prof Mansel Aylward, Prof Kam Bhui, Prof Anthony Pinching and Sir Peter Spencer, CEO AfME.

 

Royal Society of Medicine conference – April 28: Chronic Fatigue Syndrome
Speakers:

Professor Peter White, Barts and the London Queen Mary School of Medicine and Dentistry (What is CFS?)
Dr Anthony Cleare, Institute of Psychiatry, London (Pathophysiology)
Professor Simon Wessely, King’s College London (Epidemiology)
Professor Chris Dowrick, Liverpool (Physician’s approach)
Professor Matthew Hotopf, Institute of Psychiatry, London (Psychiatrist’s approach)
Professor Richard Baker, Leicester University (NICE Guidelines)
Professor Rona Moss-Morris, University of Southampton (CBT and GET)
Dr Alastair Miller, Royal Liverpool University Hospital (What drugs can I use?)

Session chairmen:

Dr John Scadding, from the Royal Society of Medicine
Professor Anthony Pinching, Peninsula Medical School, Cornwall
Professor Mansel Aylward, Unum Provident Centre for Disability, Cardiff University
Professor Kam Bhui, Department of Psychiatry, Queen Mary School of Medicine and Dentistry
In addition, Sir Peter Spencer from Action for ME will be discussing “ME – the patient perspective’.

Registration Details: Fellow: £130 Associate: £100 Student Members: £40 Nurse: £125 Health Care Professional: £125 Retired Fellow: £100 Non-Fellow: £240 CPD (Applied for): 5 credits. Information from RSM Administration: Nicole Leida  Tel: +44 (0) 20 7290 3946 Fax: +44 (0) 20 7290 2989

http://www.rsm.ac.uk/academ/cfs.php

Chronic fatigue syndrome
Monday 28 April 2008

Venue: The Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE

Registration Details:
Fellow: £130
Associate: £100
Student Members: £40
Nurse: £125
Health Care Professional: £125
Retired Fellow: £100
Non-Fellow: £240

CPD (Applied for): 5 credits

9.25 am
Registration and Coffee

9.50 am
Welcome address
Dr John Scadding, Dean, Royal Society of Medicine

Session one
Chair: Dr John Scadding, Dean, Royal Society of Medicine

9.55 am
What is CFS?
Professor Peter White, Barts and the London Queen Mary School of Medicine and Dentistry

10.20 am
Questions

10.25 am
Pathophysiology
Dr Anthony Cleare, Institute of Psychiatry, London

10.50 am
Questions

10.55 am
Epidemiology
Professor Simon Wessley, King’s College London

11.20 am
Questions

11.25 am
Open discussion

11.40 am
Coffee

Session two
Chair: Professor Anthony Pinching, Peninsula Medical School

12.05 pm
Assessment: physician’s approach
Professor Chris Dowrick, Liverpool

12.30 pm
Questions

12.35 pm
Assessment: psychiatrist’s approach
Professor Matthew Hotopf, Institute of Psychiatry, London

1.00 pm
Questions

1.05 pm
Lunch

Session three
Chair: Professor Mansel Aylward, Unum Provident Centre for Disability, Cardiff University

2.00 pm
M.E. – The patient perspective
Sir Peter Spencer, Action for M.E.

2.25 pm
Questions

2.30 pm
Management: NICE Guidelines
Professor Richard Baker, Leicester University

2.55 pm
Questions

3.00 pm
Tea

Session four
Chair: Professor Kam Bhui, Department of Psychiatry, Queen Mary School of Medicine and Dentistry

3.30 pm
CBT and GET
Professor Rona Moss-Morris, University of Southampton

3.55 pm
Questions

4.05 pm
What drugs can I use?
Dr Alastair Miller, Royal Liverpool University Hospital

4.30 pm
Questions

4.35 pm
Open discussion

5.00 pm
Close of meeting

House of Commons: Written answers: November 2007

From: Dr. Marc-Alexander FluksSource: UK House of Commons
Date: November 19, 2007

URL:
http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm071119/text/71119w0020.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Incapacity Benefit: Chronic Fatigue Syndrome
——————————————–

Mr. Steen

To ask the Secretary of State for Work and Pensions what consideration he has given to the recommendations of the National Institute for Health and Clinical Excellence’s report on those with chronic fatigue syndrome/myalgic encephalomyelitis when claiming incapacity benefit; and if he will make a statement. [165787]
 

Mrs. McGuire

The report of the National Institute for Health and Clinical Excellence is about the way chronic fatigue syndrome/myalgic encephalomyelitis is treated within the NHS.

Entitlement to incapacity benefit does not depend on a person’s diagnosis or on the treatment they are receiving. It depends on the effect their condition has on their ability to work. This is a fairer way than using criteria based on specific conditions or diagnoses, because the same condition can have very different disabling effects in different people.

The Department recognises chronic fatigue syndrome/myalgic encephalomyelitis as a real and potentially very disabling condition. Each person claiming benefit is assessed on the basis of the way the condition affects them as an individual. The personal capability assessment for deciding entitlement to incapacity benefit looks at a range of activities relevant to  work, and assesses whether or not a person can carry them out reliably and safely, over a period of time.

As part of our welfare reform proposals we have reviewed and revised the personal capability assessment to ensure it is a robust and accurate assessment of limited capability for work. The revised assessment will be used to assess people claiming the new employment and support allowance, which will replace incapacity benefit for new customers.

(c) 2007 Parliamentary copyright

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Source: UK House of Commons
Date: November 20, 2007
URL:
http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm071120/text/71120w0035.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster
[Written Answers]

Chronic Fatigue Syndrome: Research
———————————-

Mr. Maude

To ask the Secretary of State for Health whether Government funding for biomedical research in ME/chronic fatigue syndrome is ring-fenced. [164079]

Dawn Primarolo

The usual practice of the Department’s National Institute for Health Research (NIHR) and of the Medical Research Council (MRC) is not to ring fence funds for expenditure on particular topics: research proposals in all areas compete for the funding available. Both organisations welcome applications for support into any aspect of human health and these are subject to peer review and judged in open competition, with awards being made on the basis of the scientific quality of the proposals made.

The research concerned with chronic fatigue syndrome/myalgic encephalomyelitis that the MRC and the NIHR are currently funding has been subject to these transparent and rigorous processes.

(c) 2007 Parliamentary copyright

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Source: UK House of Commons
Date: November 22, 2007

URL:
http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm071122/text/71122w0017.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster
[Written Answers]

Social Security Benefits: Chronic Fatigue Syndrome
————————————————–

Mr. Steen

To ask the Secretary of State for Work and Pensions (1) what steps he is taking to implement the recommendations of the clinical guidelines of August 2007 by the National Institute for Health and Clinical Excellence on Chronic Fatigue/Syndrome Myalgic Encephalomyelitis in relation to benefits applicants; [166949] (2) if he will review the questionnaire and medical examination process established by his Department for benefits applicants with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis in light of the National Institute for Health and Clinical Excellence’s report of August 2007. [166950]

Mrs. McGuire

I refer the hon. Member to the written answer I gave him on 19 November 2007, Official Report, column 544w.

(c) 2007 Parliamentary copyright

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Source: UK House of Commons
Date: November 22, 2007

URL:
http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm071122/text/71122w0016.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster
[Written Answers]

Chronic Fatigue Syndrome
————————

Mr. Steen

To ask the Secretary of State for Work and Pensions what guidance he has issued to Government departments on the effect of the National Institute for Health and Clinical Excellence’s report of August 2007 on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis as it affects his Department’s responsibilities. [166951] Mrs. McGuire

No guidance has been issued. The report of the National Institute for Health and Clinical Excellence is about the way chronic fatigue syndrome/myalgic encephalomyelitis is treated within the NHS and has no implications for this Department’s responsibilities.

(c) 2007 Parliamentary copyright

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Source: UK House of Commons
Date: November 22, 2007

URL:
http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm071122/text/71122w0017.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster
[Written Answers]

Social Security Benefits: Chronic Fatigue Syndrome
————————————————–

Mr. Steen

To ask the Secretary of State for Work and Pensions if he will review the Jobcentre Plus questionnaire Incapacity for Work (Form JB65) for those with Chronic Fatigue/Syndrome Myalgic Encephalomyelitis in light of the National Institute for Health and Clinical Excellence’s report of August 2007. [166952]

Mrs. McGuire

The report of the National Institute for Health and Clinical Excellence (NICE) is about the way chronic fatigue syndrome/myalgic encephalomyelitis is treated within the NHS. The Department recognises chronic fatigue syndrome/myalgic encephalomyelitis as a real and potentially very disabling condition. Each person claiming benefit is assessed on the basis of the way the condition affects them as an individual.

Jobcentre Plus has a number of forms for customers who claim Incapacity Benefit irrespective of their illness and/or their disability. Although there are no plans to review these forms as result of the NICE report, all forms/letters are reviewed annually.

(c) 2007 Parliamentary copyright

Response to: £40,000 grant from “Children in Need” for Child Support officer

Reply, sent 12 December, to article in Dorset Echo about local group receiving £40,000 grant from “Children in Need” for Child Support officer (pasted below my signature).Some of you may think of some other points to contribute. The e-mail address is letters@dorsetecho.co.uk

Cheers
John

drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org
Dorset Echo Letters.

Your article about spending £40,000 from Children in Need on M.E. (ME group receives grant for support worker, Dorset Echo, 10 December 2007) raises some questions that are of particular interest to local M.E. (Myalgic Encephalomyelitis) sufferers but also many more that are equally applicable to services for adults, as well as children, all over the country.

Incidentally, one may wonder why Hazel Matthews was appointed to the post of Child Support Worker before the closing date of 13 December has been reached, thus denying any candidate who was working on their application up to the deadline.

There is a crucial illogical flaw that persists in regarding M.E. either as one of a number of illnesses, having chronic fatigue as a symptom, under the umbrella term Chronic Fatigue Syndrome (CFS) or of the two terms, M.E. and CFS, being thought synonymous and interchangeable. Neither is true. As the World Health Organisation recognises, M.E. is a discrete neurological illness. There is no evidence for saying, as here, that M.E. is a more severe form of CFS as if, on a scale, CFS would be 3 or 4 but, at 7 or 8, it becomes M.E.; nor for any change of criteria that is supposed to bring this about. It would be like saying that, at some point, a heavy cold becomes flu, when they are just as discrete examples.

This muddled thinking about the very name itself infects any attempt to design a reliable experiment so that, together with different therapists, of different backgrounds, in different places, giving different treatments in different combinations, sometimes individually, sometimes in groups, sometimes at a treatment centre, sometimes at home, even sometimes remotely over the phone, patient sample size may come down to a single person and generalising is practically impossible.

There is no doubt that research funds would be more wisely spent on biomedical research to discover the physical cause of M.E. which should, in turn, suggest appropriate, safe, treatment. Until then, this M.E. organisation advises against unproven treatments since no treatment is better than one which may have no lasting effect and especially against Graded Exercise Treatment (GET) which may do some M.E. sufferers irrecoverable harm.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
www.mefreeforall.org

http://www.thisisdorset.net/display.var.1894546.0.me_group_receives_grant_for_support_worker.php

ME group receives grant for support worker

FUNDRAISERS pulling out the stops for Children in Need have been given a reminder of the causes that benefit from their efforts.

The Dorset ME Support Group has received a grant of over £40,000 from Children in Need to provide a support worker to help young sufferers cope with the illness.

Hazel Matthews has been appointed to work with those with Chronic Fatigue Syndrome (CFS) or its more severe form, ME, and their families.

Dorset CFS/ME Service team leader Barbara Goodchild said: “We are a very small therapy team so to have somebody like her means she can follow up all our programmes in children’s homes and in the hospital. She’s a tremendous support.”

She added that the specialist CFS team was one of only ten groups across the country.

Mrs Goodchild said: “We are very lucky to have a service at all, we need to support is as much as possible.”

The Dorset ME Support Group and the Dorset CFS/ME Service also put on a conference and workshop at Kingston Maurward College.

More than 70 people attended including representatives from schools, social care and health professionals.

They received information through a series of presentations and a session with four young ME sufferers.

Support group trustee John Arscott said: “They are to be congratulated for their mature and articulate contributions. We learnt so much from them.”

Mrs Goodchild added: “We are now setting up a working party and quite a few have volunteered.”

APPG on ME: 22 January meeting, confirmation of time, room

The ME Association

The next meeting of the All Party Parliamentary Group on M.E. will take place in Committee Room 17, House of Commons, at 4pm on Tuesday 22 January.

Unfortunately the Secretary of State for Health was unable to attend on any of the dates suggested but Ann Keen MP, Parliamentary Under Secretary of State for Health Services, has agreed to speak to the Group.

Details are being finalised and an agenda will be circulated in due course.

Mrs Keen is well aware of M.E. issues, both as a former nurse and as constituency MP for members of Network MESH (West London).

Tony Britton
Publicity Manager, The ME Association

Home-based: 60 Broadgate, Weston, Spalding, PE12 6HY
Tel: 01406 370293 Mob: 07880 502927

Email Tony Britton

The ME Association

Times2: Article and interview with David Southall, 11 December 2007

From The Times

[Online and Times2 section of print edition]

December 11, 2007
I can’t say sorry for something I didn’t do
David Southall, the disgraced paediatrician, explains why he remains unrepentant

Anjana Ahuja

Read full article here 

Data security: It just gets worse and worse…

From The Sunday Times

December 9, 2007

Benefit data sent to wrong homes

Marie Woolf

THOUSANDS of benefit claimants have been told their Post Office account details may have been accidentally sent to the wrong addresses, in the latest scandal involving lost data to shake the government, writes Marie Woolf.

The Post Office has written to apologise to 5,500 customers who use card accounts to access benefits. A leaked memo from the Department for Work and Pensions (DWP) says the blunder is likely to be blamed on “government incompetence”.

Read full item here 

View a copy of the leaked data memo here:

http://extras.timesonline.co.uk/keogh.pdf   [50KB]

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