We shall be adding to this list, and flagging up some news reports as separate items.

Quentin Cruse, who has ME, talks to Radio Five Live Breakfast, 29 July 2011

BBC Radio 4, 29 July 2011, from 7.09am

Tom Fielden: extended interview with Professor Simon Wessely on the Today programme

BBC Radio 4 programme 29 July 2011, from 8.10am

‘Vicious campaign’ against ME researchers – BBC Radio 4 Today programme podcast: duration 16 minutes: 7 days remaining to listen again.

Tom Fielden, Today programme science correspondent, on the BBC News website: ‘Torrent of abuse’ hindering ME research

BBC Radio 5Live: Victoria Derbyshire interviews Dr Esther Crawley

Starts 5 minutes and 50 seconds into the programme.

Daily Telegraph online, 29 July 2011

Public Service.co.uk, 29 July 2011

Daily Mail Online, 29 July 2011

The Morning Star, 29 July 2011

Yahoo News, 29 July 2011

The Irish Independent, 29 July 2011

The Economist, Science and Technology ‘Babbage’ blog, 30 July 2011

Bristol Evening Post, 30 July 2011

‘BBC turns the air blue at 8.10am’, Sunday Express lead story, 31 July 2011

‘Shoot the medical messenger – see if that will cure you’: Rod Liddle’s comment piece in The Sunday Times, 31 July 2011.

Professor Colin Blakemore in ‘The Times’, 2 August 2011

Johannesburg ‘Sunday Times’, with a lurid and unnecessary picture of a soldier looking into the crosshairs of a sniper rifle.

From The Times, 1 August 2011 (story by Sam Lister and Madeline Davies)

Cuts leave patients waiting months for mental health help

A growing number of patients suffering from depression and other mental health problems are waiting more than three months for counselling in the latest sign of the impact of financial pressures on NHS services.

A drive to improve access to “talking therapies” — the first line of treatment recommended by the NHS clinical watchdog for conditions such as depression — appears to have had little impact on access or waiting times, research shows.

Findings suggest that many patients are either suffering unattended, or still being put on anti-depressant medications despite Government efforts to reduce doctors’ reliance on such prescriptions. They lend weight to fears that mental health, often referred to as a neglected “Cinderella” service, is being hit badly by efforts to save money throughout NHS, even after a recent £170 million investment to improve access.

Data collected from 120 Primary Care Trusts (PCTs) in England under the Freedom of Information Act shows that in those trusts that provide access to trained counsellors, more than 40 per cent leave patients waiting three months. A year earlier, in 2009, 29 per cent of 90 PCTs polled required a three-month wait for sessions with a counsellor. At least 10 trusts last year could only provide such a service if patients waited six months.

Figures for Cognitive Behavioural Therapy (CBT), which is provided by all 120 PCTs, have remained unchanged, with 28 per cent reporting waiting of more than three months and a third offering access within a month. At least eight PCTs demand a six-month wait for this frontline talking therapy.

Further concerns about the provision of depression care were raised yesterday by mental health charities and professional groups. It followed the publication of recommendations which have removed three indicators for depression from the system which rewards GPs for the quality of care they provide.

Mental health specialists said that the latest PCT data, to be published next week in the magazine Health Insurance, raised concerns about the deterioration in people’s conditions while they waited and the long term impact this could have on recovery. Anecdotal evidence suggests that many are opting to take up private care if they can afford it.

Last year The Times revealed that a growing number of PCTs were issuing service restriction documents for hospital care, grading hospital procedures by priority. Some patients refused procedures such as IVF and hip and knee operations were opting for private care instead.

The concerns were backed up last week by a report from the Co-operation and Competition Panel which warned that some trusts are increasing waiting times to encourage some patients to go private or die before they are seen.

The new figures show that striking variations in waiting times persist for mental health, with patients waiting up to 54 weeks for counselling in Central and Eastern Cheshire and up to 67 weeks for CBT in the Wirral. Both are available with no wait, or in a matter of days, in other areas.

The Improving Access to Psychological Therapies (IAPT) programme, which was launched in 2008 to grow the NHS mental health workforce, currently covers around 60 per cent of the population.

In February the Government announced a further £400m investment over the next four years to complete the roll-out and ensure that every adult has access to psychological therapies for anxiety disorders and depression. It suggests the programme to deliver £700m of savings in healthcare, tax and welfare gains, chiefly by returning people with mental health problems to work.

Research carried out by Mind, the mental health charity, shows that people who wait three months or less are five times more likely to report that it helped them get back to work than those waiting for a year or more.

“Waiting times for treatment can make the difference between someone making a swift recovery, to someone having every area of their life fall apart,” said Vicki Nash, head of policy and campaigns at the charity. “It seems so wrong that the outcome all depends on where in the country you live.”

Kevin Healy, of the Royal College of Psychiatrists, added that patients who had waited months for talking therapies could prove more difficult to help. “People usually seek out such therapy when they are in a crisis situation and need to find a way of dealing effectively with the crisis at that particular time. If they don’t have the help of a therapist they will seek whatever solution makes their situation more manageable.

“It is more likely that they will find ways to cover over their problems and may then find it difficult to address their difficulties when a therapist becomes available many months later.”

The survey also shows that the range of talking therapies set out by National Institute for health and Clinical Excellence for mild to moderate depression is unavailable in many parts of the country. The recommendation, which supports the Government’s pledge for patietn choice, is because CBT is not appropriate for all diagnoses.

Interpersonal therapy — a treatment designed to address relationship problems — is not provided by 45 PCTs while 61 do not offer behavioural couples therapy. Psychodynamic therapy, which focuses on causes of depression rooted in childhood, is unavailable in 56 PCTs.

Phillip Hodson, of the British Association for Counselling and Psychotherapy, said the NHS needed “a whole family of therapies” to serve people with depression.

According to Mind, less than a third of people suffering from anxiety and depression are offered a choice of therapy. Those that receive a choice have higher levels of satisfaction with their treatment and are more likely to report that it helped them to return to work.

The Department of Health said it recognized that positive mental health was key to good overall health, and that swift access to high quality services was important. A spokesperson said that since the IAPT programme began in 2008 over 600,000 people with mild to moderate depression have entered treatment.

Case Study: Laura Murphy

Laura Murphy had battled with depression and anxiety attacks since she was 17. For many years she used anti-depressants, which she felt never helped her get to the root of the problem.

It was only at 27 that Ms Murphy, an artist from Kent, met a GP keen to get her into counselling. But, she recalled: “My GP said, ‘You’re welcome to go on the list, but it’s about six months long’. When you are at rock bottom and you are told you must wait six months … it’s not good enough for anyone.”

Her GP suggested instead a counselling centre. It was not part of the NHS, but accepted mean-tested payments, allowing Ms Murphy, now 32, to pay £10 a session.

THE OUTSIDE CLINIC – OPTICIANS

We’ve just had this very helpful bit of feedback about The Outside Clinic, who advertise occasionally in our ME Essential magazine. They’re opticians who visit people in their own homes:

As I am more or less housebound with ME, getting out for things like the Opticians is difficult, however a friend of mine, told me about Outside Clinic, I called them, to see if I qualified, and this week, they came to see me. You need to be housebound with ME to have them come, but they effectively bring their opticians equipment with them.

I had a really nice lady, who understands ME, allowed me to have rest breaks when required.

The cost is the same, as if you go to the optician, depending on what benefits you receive, and if you do have to have your glasses changed, they will bring them to you.

Anyway, I thought, you might like to pass this onto your members, so others can benefit from them, their contact number is 0800 85 44 77.

This is a shortened Express.co.uk version of an anti-BBC lead story in the print edition of the ‘The Sunday Express’, 31 July 2011. There is also comment on page 38. (story by Ted Jeory)

THE BBC was urged last night to introduce a TV-style ­watershed for radio after its flagship news bulletin broadcast a series of abusive swear words during family breakfast time.

Media watchdogs said it was time that the corporation closed the loophole and imposed the same “no swearing” rules on radio which govern television programmes broadcast before 9pm.

Millions of listeners, including children, were left stunned at 8.10am on Friday when Radio 4’s Today programme repeatedly used the words “bullsh**” and “bastards” during a recorded item. The words were spoken to illustrate a report about the abuse aimed at academics researching chronic fatigue syndrome or ME.

The item, introduced with no warning by regular presenter Sarah Montague, said researchers who suggested ME might be a mental illness had been subjected to a hate campaign.

Actors used to read the e-mails from sufferers put strong emphasis on the offensive words. One read: “Those of you responsible for preventing us sick ME sufferers getting the help we need, wasting £5million on flawed bullsh**, you will all pay.”

Another said: “How are you evil bastards going to explain away another piece of evidence?” Sister station Five Live aired the same report but warned listeners beforehand.

As the BBC launched an investigation following complaints, Radio 4 insisted the words were essential and Today listeners could cope without a warning.

Yet the written version on BBC online did not mention the swearwords and neither, a corporation spokesman thought, did TV bulletins later in the day.

Licence payers’ watchdog Mediawatch UK said that was because television is banned from using swearwords before 9pm, while radio is freer to broadcast abuse at any time.

Its director Vivienne Pattison said that made no sense and the loophole should be closed. She said she frequently had to “leap across the room” to switch off her radio to prevent her children hearing words of adult content aired during the day.

Ten days ago, Radio 4’s afternoon play Positive also used foul language, while last March Radio 3 broadcast an adaptation of Wuthering Heights at 8pm which added the f-word.

Ms Pattison said: “The BBC is somewhat of a repeat offender on this issue. There isn’t a watershed on radio and it’s time we had one. Ofcom’s research finds too much swearing is being broadcast. People don’t like it. ”

The BBC’s editorial guidelines were strengthened last year in the wake of the Jonathan Ross and Russell Brand scandal on Radio 2 in 2008. However, the governing BBC Trust declined to introduce a TV-style watershed.

The BBC handbook states: “Radio is a different medium with different audiences, so we cannot operate a similar watershed policy.”

It does concede: “We must take extra care when different generations may be listening together. This typically applies during the morning and afternoon school runs or during school holidays.”

LBC radio presenter and Sunday Express columnist Nick Ferrari said the BBC and Radio 4 in particular lived in their own “elite metropolitan bubble”.

He said BBC radio should have a watershed and added: “You would never have this grotesque use of words on commercial radio. There is no justifiable reason for Radio 4’s decision.”

Last night, two Tory MPs on the Culture, Media and Sport select committee backed the call for a radio watershed.

Therese Coffey was not even aware there was no watershed. She said: “It strikes me as being inconsistent.

“There’s no expectation of hearing that kind of language at that time and I’m sure people would have been shocked.”

Her colleague Philip Davies added: “The lack of a watershed is an anomaly that needs to be addressed.”

A spokesman for the Today programme said: “E-mails including abusive language were included in the report to demonstrate the level of intimidation involved in the campaign. We felt this was editorially justified.”

———————

Express Comment

Immature BBC bosses must clean up once great ‘Today’

DOES the BBC think it operates on different standards of decency from the rest of the country?

That is the only conclusion to be drawn from the utterly disgraceful language on the Today programme aired at 8.10am, with no warning as to what listeners were about to hear and at a time when children were almost certainly able to overhear.

What was our so-called public service broadcaster thinking?

This childish desire to shock has more in common with an adolescent attempting to be rebellious than serious broadcasting and it surfaces time and time again.

The disgusting “Sachs-gate” episode was an example of this juvenile exhibitionism at its worst but to have the much-vaunted Today sink to these levels is beyond the pale.

If BBC employees are too self-obsessed and immature to understand that standards of decency are required when making a radio programme – any programme – then a watershed must be introduced.

Swearing is not allowed on television until after 9pm, though many think it is a great pity that swearing is allowed at all, and the same rules should be introduced on the radio.

It is simply unacceptable to use this kind of language at such an hour.

It is also very sad that the once mighty Today, which in its heyday was the most important news programme across the whole of the BBC, has been reduced to behaving like a child attempting to shock.

From The Sunday Times, 31 July 2011 (comment piece by Rod Little)

Shoot the medical messenger – see if that’ll cure you

Medical experts who put forward controversial ideas should investigate their theories and not give in to ‘extremist’ sufferers

They are hopping up and down with fury at the ME Association, the organisation that helps people suffering from what used to be known as “chronic fatigue syndrome” but now, for politically correct reasons, is known as myalgic encephalomyelitis.

Actually, I say they’re hopping up and down, but given the nature of their affliction, they’re probably sitting quite still, really. I meant hopping up and down as a figure of speech. Either way, they’re very angry. The problem was an interview on the BBC Today programme with a leading researcher into the causes of chronic fatigue syndrome, Prof Simon Wessely.

He believes the illness, which results in debilitating tiredness, aches and pains and so on, probably has a neurological basis.

As a consequence, he has received menacing phone calls and even death threats from “extremist” ME sufferers. So too has another researcher, Prof Myra McClure, who says she will now have nothing more to do with the whole business because she’s fed up with being abused.

It seems that those who suffer from ME, which used to be known as yuppie flu, do not wish to be stigmatised as malingering mentals, which is what they fear will happen if the illness turns out to have a psychiatric rather than biomedical basis.

On the ME Association website they don’t actually threaten to kill Wessely; instead you are left with the impression that he is pursuing this line of inquiry for mysteriously infernal purposes, and that he knows nothing about anything, and that he is part of a conspiracy with the whole psychiatric profession and the Today programme, especially Sarah Montague, and the government to cover up the real truth about chronic fatigue syndrome.

Indeed, such is the foaming paranoia on this site that you begin to suspect that if ME does have a neurological basis, it’s probably going to be the least of their mental worries.

The truth about ME, they assert, is that it is the consequence of some sort of weird retrovirus. In other words, it’s a proper illness, which we’ve caught from someone or something; it’s been given to us, it didn’t originate with us.

It is a peculiar and distressing, if not untypical, reaction from people faced with a mysterious and incurable disease. As Wessely himself says, in blank incomprehension, they would rather the disease be the consequence of a retrovirus that could possibly be fatal than be the result of a neurological disorder for which there is at least a form of palliative treatment.

No matter what evidence is marshalled by the likes of Wessely, some sufferers cling with grim and livid determination to a non-existent biomedical explanation; they assume, one supposes, that if it is primarily a mental condition then they have sort of brought it on themselves, and are in some way to blame for their affliction (which is a nonsense, of course).

Their denials and paranoia remind me a little of the reaction of some parents with autistic children who resist with fury the suggestion that this distressing condition might have been brought about partly as a consequence of assortative mating, as suggested by Prof Simon Baron-Cohen, rather than through mercury floating around in the atmosphere or the water pipes, or indeed the MMR vaccine.

The now wholly discredited MMR theory certainly served the psychological requirements of some unhappy parents, being not merely a clear cause but one that was imposed on their offspring by government diktat.

Baron-Cohen, meanwhile, received a lot of flak for this theory but, as he puts it, just because it is controversial doesn’t mean it should not be investigated.

Either way, some people seem to be terribly protective of their ailments, over which they believe they have a sort of droit de seigneur. Research of which, in their ignorance, they disapprove is seen as part of some plot to do them down and consequently underplay their suffering, and they decide its proponents must be vilified.

J Intern Med. 2011 Jul 27. doi: 10.1111/j.1365-2796.2011.02429.x. [Epub ahead of print]

Impaired Cardiac Function in Chronic Fatigue Syndrome measured using Magnetic Resonance Cardiac Tagging.

Hollingsworth KG, Hodgson T, Macgowan GA, Blamire AM, Newton JL.

Source

Newcastle Magnetic Resonance Centre, Institute of Cellular Medicine, Newcastle University, Campus for Ageing and Vitality, NE4 5PL, UK Institute for Ageing and Health, Newcastle University, Campus for Ageing and Vitality, NE4 5PL, UK Department of Cardiology, Freeman Hospital, Newcastle upon Tyne, NE7 7DN and Institute of Human Genetics, Newcastle University, NE2 4HH, UK.
Abstract

Objectives: 

Impaired cardiac function has been confirmed in patients with chronic fatigue syndrome (CFS). Magnetic resonance cardiac tagging is a novel technique that assesses myocardial wall function in vivo. We hypothesized that CFS patients may have impaired development and release of myocardial torsion and strain. Methods:  Cardiac morphology and function was assessed using magnetic resonance imaging and cardiac tagging methodology in 12 CFS (Fukuda) and 10 matched controls. Results:  Compared to controls the CFS group had substantially reduced LV mass (reduced by 23%), end diastolic volume (30%), stroke volume (29%), and cardiac output (25%). Residual torsion at 150% of the end-systolic time was found to be significantly higher in the CFS patients (5.3±1.6(o) ) compared to the control group (1.7±0.7(o) , p=0.0001). End diastolic volume index correlated negatively with both torsion to endocardial strain ratio (TSR) (r =-0.65, p=0.02) and the residual torsion at 150% end systolic time (r=-0.76, p=0.004), so decreased end diastolic volume is associated with raised TSR and torsion persisting longer into diastole. Reduced end diastolic volume index also correlated significantly with increased radial thickening (r=-0.65, p=0.03) and impaired diastolic function represented by the ratio of early to late ventricular filling velocity (E/A ratio, r=0.71, p=0.009) and early filling percentage (r=0.73, p=0.008). Conclusion:  CFS patients have markedly reduced cardiac mass and blood pool volumes, particularly end diastolic volume: this results in significant impairments in stroke volume and cardiac output compared to controls. The CFS group appeared to have a delay in the release of torsion.

Copyright © 2011 The Association for the Publication of the Journal of Internal Medicine.

PMID: 21793948 [PubMed - as supplied by publisher]

From PublicService.Co.Uk, 29 July 2011 (story by David Allaby)

No one should have to endure threats of violence and malicious abuse for their professional commitment to the advance of medical knowledge, but while listening to the Today Programme interviews about ME/chronic fatigue syndrome and the hate campaign directed at those leading research into psychological based explanations for the illness, I had the urge to bang heads together. My annoyance began with “the scientist” interviewed in the role of victim. I was left to question whether his science might be as distorted as his reasoning expressed on Radio 4.

This story is not a new one. Psychiatrist Simon Wessely, well-known for his theories that myalgic encephalomyelitis is a type of neurosis, was telling the New Scientist in 2009 about the threats he faced. Now he tells the BBC’s Tom Fielden: “People seem to prefer to be diagnosed with like a retro-virus, a potentially incurable, maybe even fatal illness, rather than an illness for which we do have some reasonable but not perfect treatment.

“That really attests to the strength of feeling here – I would rather have an incurable virus than a potentially curable disorder if the cure was treatment involving any acknowledgement of the social or psychological.”

No, Dr Wessely, I suspect that that is not what ME sufferers feel – not even those who have descended to desperate extremist levels. It is the quality of the science and such distorted reasoning that enrages ME sufferers. They feel helpless and dismayed – and if you were genuinely listening to your patients, Dr Wessely, you would understand something of that.

They feel dismayed by the fact that most government funding into ME concentrates on research into the psychology and not the virology of the illness. They feel dismayed by NICE guidelines and doctors who persist with programmes of treatment that not only do not work but make them feel worse. They feel dismayed by a stigma that still surrounds the illness, stemming from early medical ignorance.

Dr Wessely accuses his hostile critics of “trying to make me into a leper”. Well, that is just how many ME sufferers have been made to feel for years. They feel dismayed that research into viruses that consistently precede the onset of ME is ignored. Was it only last autumn that scientists at Dundee University had found abnormalities in the white blood cells of all children with ME/CFS in their study? Dundee’s Professor Jill Belch said: “It’s important because some people do suggest that ME is a disease of the mind and here we are showing that it is a disease of the body.”

They obviously didn’t tell Dr Wessely. Anyone whose life has been shattered by ME or CFS – they can be separated – would take any cure, anything that could offer them a return to normality. I would like to hear from the medics who suffer from ME. In my 15-year interest in the illness I have yet to find one who agrees with the Wessely theory. No matter how sceptical they may have been, they seem to be instant converts to a physical cause once they become sufferers.

I wish Dr Wessely nothing but good health and back the call for hostilities against him to be halted. But there are far more victims in this story – the tens of thousands of people in the UK whose lives have been almost shut down by ME.

I will write more on my experience as a parent of an ME sufferer in Public Servant magazine.

David Allaby

From the Daily Mail, 29 July 2011

Scientists investigating ME get ‘death threats’ for investigating psychological causes

Scientists researching the causes of chronic fatigue claim to have received violent threats for investigating the possibility that the disease is caused psychologically.

Chronic fatigue, or ME, affects around 250,000 people in the UK, but its causes are currently unknown.

Professor Simon Wessely, who is investigating the origins of the disease, claims to have received both direct intimidation such as death threats and menacing phone calls, and indirect threats via King’s College London, where he works.

He told Radio 4′s Today programme that the abuse came from those who do not want to see ME labelled as a psychological disorder.

Myra McClure, a researcher at Imperial College London, has also come under attack.

‘It really was quite staggeringly shocking,’ she said, ‘and this was all from patients who seemed to think that I had some vested interest in not finding this virus.’

Professor McClure says she will no longer do research into the causes of ME.

Dr Charles Shepherd, medical adviser to the ME Association, also condemned the attacks, but said that ME sufferers’ anger was understandable.

He said: ‘This sort of personal intimidation is I believe completely unacceptable – and it is also counter-productive, because it doesn’t stop the type of research going on and it puts good researchers off, there is no doubt about that.

‘I think you need to put this into the context of the fact that we have about 250,000 people with this illness. A very, very tiny minority of these people are involved in this sort of behaviour.’

‘But what people do however have a justifiable complaint about is that there has been very little, or almost nil, Government-funded research into the biomedical aspect of this illness.

‘Yes, there may be a psychological input to the illness in some people but the anger, the frustration, is the fact that all this effort, all this Government funding, has been going just to the psychological side.’

From website of the Commons Work and Pensions Select Committee, 27 July 2011

The Chair of the Commons Work and Pensions has today written to the Minister for Employment Chris Grayling expressing serious concerns at the most recent misrepresentation of DWP statistics on benefit claimants in some sections of the media yesterday and today, after the committee also published a report yesterday which covered, among other things, concerns over the way releases of official statistics about the incapacity benefit reassessment process have been covered in the media in the past.

Letter to Rt Hon Chris Grayling MP

Dear Minister,

As you know, the committee published its report on “The role of incapacity benefit reassessment in helping claimants into work” yesterday.

You will have seen that in our report, we highlighted the concern amongst incapacity benefit claimants about the negative public perception of them. We deprecated the coverage of the reassessment in some sections of the media and in particular the use of terms such as “scrounger” and “work shy”. We drew particular attention to the way in which releases of official statistics about the reassessment process were covered in the media and said that:

“We believe that more care is needed in the way the Government engages with the media and in particular the way in which it releases and provides its commentary on official statistics on the IB reassessment. In the end, the media will choose its own angle, but the Government should take great care with the language it itself uses and take all possible steps to ensure that context is provided when information about IB claimants found fit for work is released, so that unhelpful and inaccurate stories can be shown to have no basis.”

By what I assume was a coincidence, the Department chose to release statistics on new Employment and Support Allowance claims yesterday. The coverage of the statistics in some newspapers, notably the Daily Mail and the Daily Express, was a particularly egregious example of the way they can be misused. The headline in today’s Daily Mail was “The shirking classes: just 1 in 14 incapacity benefit claimants is unfit to work”.

When we took evidence from you in this inquiry, you stressed that the Government had played no part in feeding negative media stories about benefit claimants. You made clear that the Government could not control the editorial approach of the tabloids but said that you had had “a number of conversations with people in the media about the need for care in this area”.

I am sure that you are therefore as shocked as I am by this most recent misrepresentation of DWP statistics on benefit claimants. It is clear that your efforts to persuade the press to act responsibly when discussing incapacity benefit have not yet been successful.

It is also important that the Department’s press releases always take care to emphasise the distinction between new ESA claims and the reassessment of existing incapacity benefit claimants, which may not have been the case on this occasion.

I trust that you will be contacting newspaper editors again to urge them to ensure that the reports they carry about ESA claims are factually correct and that they avoid pejorative terms such as “shirkers” and “scroungers” which are irresponsible and inaccurate. As we said, “portraying the reassessment of incapacity benefit claimants as some sort of scheme to ‘weed out benefit cheats’ shows a fundamental misunderstanding of the Government’s objectives.” It is clearly important that the Government takes every possible step to counter this ongoing negative portrayal.

Yours sincerely

Dame Anne Begg MP

From Vaccines, Blood & Biologics, published by the US Food and Drug Administration, 24 July 2011

Investigating Viruses in Cells Used to Make Vaccines; and Evaluating the Potential Threat Posed by Transmission of Viruses to Humans

Principal Investigator: Arifa S. Khan, PhD
Office / Division / Lab: OVRR / DVP / LR

General Overview

The emergence of pathogenic virus infections like influenza and HIV have created an urgent need for new vaccines.

Virus-based vaccines are made in living cells (cell substrates). Some manufacturers are investigating the use of new cell lines to make vaccines. The continual growth of cell lines ensures that there is a consistent supply of the same cells that can yield high quantities of the vaccine.

In some cases the cell lines that are used might be tumorigenic, that is, they form tumors when injected into rodents. Some of these tumor-forming cell lines may contain cancer-causing viruses that are not actively reproducing. Such viruses are hard to detect using standard methods. These latent, or “quiet,” viruses pose a potential threat, since they might become active under vaccine manufacturing conditions. Therefore, to ensure the safety of vaccines, our laboratory is investigating ways to activate latent viruses in cell lines and to detect the activated viruses, as well as other unknown viruses, using new technologies. We will then adapt our findings to detect viruses in the same types of cell substrates that are used to produce vaccines. We are also trying to identify specific biological processes that reflect virus activity.

These methods will enable FDA scientists to help manufacturers to determine whether their specific cell substrate is safe to use for vaccine production. The methods our laboratory are developing and testing will help to ensure the production of safe and effective vaccines in two ways: 1) FDA will be able to develop testing guidelines for manufacturers who use new cell substrates for producing vaccines; and 2) FDA will publish the new methods it develops in peer-reviewed scientific journals, thus making them readily accessible to all manufacturers.

We are also evaluating the risk of retrovirus infections in humans. (Retroviruses are RNA viruses that use an enzyme called reverse transcriptase (RT) to replicate; RNA is the de-coded form of DNA). Simian foamy virus (SFV) can be transmitted from nonhuman primates (e.g., monkeys) to humans. Although there is no evidence that SFV causes disease, the virus can remain in a lifelong quiet state in the DNA after infection. Moreover, two individuals in Africa were recently found to be infected with both HIV-1 and SFV. Therefore, it is important to determine if SFV poses a threat to human health and to understand how the virus spreads in order to create strategies for controlling human infections. Such work will also help FDA to develop a new policy regarding blood donation by individuals working with nonhuman primates and implementing formal safety guidelines for people working with SFV-infected animals. We are also investigating the consequences of dual SFV and HIV-1 infection in the monkey model.

Similarly, we are investigating the transmission and infection processes of a new human retrovirus, xenotropic murine leukemia virus-related virus (XMRV). We are pursuing this work both in vitro (“test tube” studies) as well as in the monkey model, in order to address potential safety concerns in vaccine cell substrates and in blood products.

Scientific Overview

Detection of latent viruses in cell substrates for vaccine safety. The urgent demand for vaccines against emerging diseases has necessitated the use of novel cell substrates. These include tumorigenic cells such as MDCK and CHO cells (for influenza virus vaccines), 293 and PER.C6 cells (for adenovirus-vectored HIV-1 and other vaccines), and tumor-derived cells such as HeLa cells (for HIV-1 vaccines).

The use of tumorigenic and tumor-derived cells is a major safety concern due to the potential presence of viruses such as retroviruses and oncogenic DNA viruses that could be associated with tumorigencity, Therefore, detection of persistent, latent DNA viruses, and endogenous retroviruses in vaccine cell substrates is important for vaccine safety, particularly in the development of live viral vaccines, where there are no or minimal virus inactivation and removal steps during vaccine manufacturing.

Chemical induction is a rigorous method for evaluating the presence of endogenous retroviruses as well as some latent DNA viruses that have the potential to become active and produce infectious virus. This approach has been extensively used for mouse cells. We have optimized virus induction conditions in mouse cells using a standardized, highly sensitive, single-tube fluorescent PCR enhanced reverse transcriptase (STF-PERT) assay. We have further determined optimum conditions for activating latent DNA virus from a human cell line. We have extended the assay to develop a stepwise approach to induce and detect endogenous retroviruses and latent DNA viruses during evaluation of cell substrates for vaccine safety.

The chemical induction algorithm developed using these positive control cell lines can be used to evaluate the safety of novel vaccine cell substrates for new vaccines. We are now investigating emerging technologies for broad virus detection to identify novel, induced and other unknown viruses. Additionally, we are investigating potential biomarkers for virus induction

In vitro and in vivo investigations to address retrovirus concerns in biologics. Simian foamy viruses (SFVs) are highly prevalent in all nonhuman primates (NHPs) and can infect humans by cross-species transmission. Although there is no evidence yet of disease with SFV, infectious virus persists in the host DNA. Therefore, we are trying to understand SFV latency and activation and factors involved in virus transmission, which will be important for managing SFV infections in humans.

We are also invesgtigating potential interactions of SFV and SIV in the monkey model to predict the outcome of SFV and HIV-1 dual-infections in human cases, reported in Africa. Furthermore, our blood transfusion studies in monkeys regarding the risk of SFV transmission from infected blood donors to recipients will contribute to blood donation policy-making decisions.

Xenotropic murine leukemia virus-related virus (XMRV) is a recently discovered human retrovirus that has been found in both chronic fatigue syndrome and prostate cancer patients. Although these findings need further confirmation, there is a potential safety concern regarding XMRV in cell substrates used in vaccines and in transmission by blood transfusion and blood products. We are developing sensitive detection assays for XMRV to evaluate cell substrates and investigate virus transmission by blood transfusion in a monkey model.

Publications

J Virol 2011 Jul;85(13):6579-88
Chemical induction of endogenous retrovirus particles from the vero cell line of african green monkeys.1 Exit Disclaimer2
Ma H, Ma Y, Ma W, Williams DK, Galvin TA, Khan AS

Biologicals 2011 May;39(3):158-66
Optimization of chemical induction conditions for human herpesvirus 8 (HHV-8) reactivation with 12-O-tetradecanoyl-phorbol-13-acetate (TPA) from latently-infected BC-3 cells.3 Exit Disclaimer4
Ma W, Galvin TA, Ma H, Ma Y, Muller J, Khan AS

PDA J Pharm Sci Technol 2010 Sep-Oct;64(5):426-31
Testing considerations for novel cell substrates: a regulatory perspective.5 Exit Disclaimer6
Khan AS

PDA J Pharm Sci Technol 2010 Sep-Oct;64(5):451-7
Regulatory considerations for raw materials used in biological products.7 Exit Disclaimer8
Khan AS

Transfusion 2010 Jan;50(1):200-7
Role of neutralizing antibodies in controlling simian foamy virus transmission and infection.9 Exit Disclaimer10
Williams DK, Khan AS

Biologicals 2009 Jun;37(3):196-201
Proposed algorithm to investigate latent and occult viruses in vaccine cell substrates by chemical induction.11 Exit Disclaimer12
Khan AS, Ma W, Ma Y, Kumar A, Williams DK, Muller J, Ma H, Galvin TA

Expert Rev Anti Infect Ther 2009 Jun;7(5):569-80
Simian foamy virus infection in humans: prevalence and management.13 Exit Disclaimer14
Khan AS

J Virol Methods 2009 May;157(2):133-40
Evaluation of different RT enzyme standards for quantitation of retroviruses using the single-tube fluorescent product-enhanced reverse transcriptase assay.15 Exit Disclaimer16
Ma YK, Khan AS

Transfusion 2006 Aug;46(8):1352-9
Simian foamy virus infection by whole-blood transfer in rhesus macaques: potential for transfusion transmission in humans.17 Exit Disclaimer18
Khan AS, Kumar D

Dr Charles Shepherd was given top slot on the BBC Radio 4 ‘Today’ programme to explain our position on the ME ‘death threats’ story.

Sarah Montague: ‘Scientists researching chronic fatigue syndrome or ME have received death threats and been subject to a campaign of intimidation.

It’s being carried out by campaigners who object to any research that suggest the disease could be a mental illness.

Thirty years after the disease was first recognised, it’s still not known what causes it.

The scientists have told us about the abuse because it is stopping people working in their field and affecting the hunt for a cure.

Tom Feilden has been talking to some of those scientists affected:

Dr Esther Crawley: ‘So we run a large service for children with chronic fatigue syndrome. We see over 250 children and their families a year…’

Tom Feilden: ‘Consultant paediatrician Dr Esther Crawley who runs one of the UK’s biggest clinics specialising in Chronic Fatigue Syndrome or ME, at the Centre for Child and Adolescent Health in Bristol…’

EC: ‘…it is a huge problem. Not only is it very common but also for each child the estimates are that they miss about a year of school. So a very large problem and probably mostly undiagnosed.’

TF: ‘As well as offering clinical treatments for patients, Dr Crawley’s also involved in research into the causes of CFS, and its socio-economic impact. She’s a well respected academic working in a field crying out for further analysis, and whose results are regularly published in peer-reviewed scientific literature. But it was when Dr Crawley got involved in a study to assess the efficacy of a particular treatment, an alternative therapy known as the LightningProcess, that the trouble started:

Actor’s voice: ‘To those of you who are responsible for preventing us sick ME sufferers getting the help we need, wasting 5 million pounds on flawed bullshit, you will all pay’

Actor’s voice: ‘How are you evil bastards going to explain away another concrete piece of evidence that shows clear abnormalities…’
[Voice continues in background with more voices joining in…]

TF: ‘Dr Crawley found herself the victim of a vicious email hate campaign, vilified on internet web-sites, and the subject of a series of formal complaints, alleging both personal and professional misconduct…’

Actors voice: ‘…time is running out for all of you so you better start denouncing your flawed inhuman bullshit, and pray to god for forgiveness.’

EC: ‘It felt to me that what happened was that they were trying a variety of strategies to get the study stopped and then as they were failing, they were increasing the erhm.. heat as it were..’

TF: ‘It’s worth mentioning, none of the complaints against Esther Crawley to the University, the Ethics Committees overseeing her research, or the GMC, have ever been upheld, but also that she’s not alone…’

Professor Simon Wessely: ‘Direct intimidation in the sense of letters, emails, occasional phone-calls and threats, and but more often indirect intimidation through my employer, the General Medical Council…’ [continues in background]

TF: ‘At the eye of this storm is King’s College London’s Professor Simon Wessely, who over the 20 years he has been involved in the field has been compared to the Nazi scientist Joseph Mengele and has received a series of death threats…’

SW: ‘All of it intended to denigrate and you know try and try and make you into a kind of a leper, so that no one would have anything to do with this ‘terrible person’.’

TF: ‘Given the vitriolic nature of the attacks it’s hard to discern a rational motive behind them, but it seems clear to Dr Wessely that it’s the association of Chronic Fatigue Syndrome with mental illness that provokes such anger…’

SW: ‘I think sadly some of the motivation here comes from people who really do believe that any connection with psychiatry and the world of psychiatry is tantamount to saying, ‘There is nothing wrong with you, go away, you’re not really ill.’ Now, that’s profoundly misguided. It fails to understand the whole nature of so many disorders, and instead they fall victim to the label and, and believe that the mere involvement of psychiatry denigrates them and denigrates the condition…’

Recorded broadcast American music:
‘ABC news now. Good to know…
Dr Donnica Moor: ‘What we do know is there is a biologic basis for Chronic Fatigue Syndrome…’ [continues in background]

TF: ‘That hostility towards a psychiatric explanation for Chronic Fatigue Syndrome, broke the surface, when in October 2009, research published in the journal Science appeared to show a link between CFS and the XMRV retrovirus. This is Dr Donnica Moor on ABC’s Good Morning America…’

DM: ‘So we don’t wanna hear any more about ‘Oh they have depression’ or ‘It’s all in their heads’. That argument is over.’

TF: ‘Sadly, the series of follow-up studies published in the BMJ, the Lancet and the Public Library of Science, failed to replicate that finding, unleashing another torrent of abuse, this time aimed at virologists like Imperial College’s Professor Myra McClure…’

Professor Myra McClure: ‘It really was quite staggeringly shocking, and these were all from patients who seemed to think that I had some vested interest in not finding this virus, and that I I couldn’t understand and still can’t to this day, what the logic of that is. I mean any virologist wants to find a new virus.’

TF: ‘But it’s not an area you’re going to be doing any more research in?’
MM: ‘Absolutely not. No.’

TF: ‘And that according to The Welcome Trust’s Dr Mark Walport, may be the single most important consequence of this campaign of abuse and intimidation.’

Dr Mark Walport: ‘Well it would be a tragedy if the outcome of all of this was that good scientists thought that it was just too difficult to research this condition. We clearly don’t understand exactly what’s going on, and if we are going to find out it needs good scientist’s to work on it. But why would any scientist work on it if they know that all they are going to receive is a torrent of abuse?’

Sarah Montague:
‘Dr Mark Walport ending that report by Tom Feilden. Well, Dr Charles Shepherd is a medical adviser to the ME Association, and is in our radio car now. Good morning…’

Dr Charles Shepherd: ‘Good morning Sarah.’

SM: ‘Can you understand? Can you try to explain to us the mindset of the people who are carrying out this abuse?’

CS: ‘Well, first of all let’s be clear Sarah, this sort of personal intimidation that you’ve been describing, is, I believe, completely unacceptable, and it’s also counter-productive because it doesn’t stop the type of research that you’ve been talking about going on, and it puts good researchers off and I mean there’s no doubt about that.

But I think you’ve got to put this into the context of the fact that we have around about 250,000 people with this illness. A very tiny, tiny minority of those people are involved in this sort of behaviour, but what people do have a justifiable complaint about is the fact that there has been very little or almost nil government-funded research into the biomedical aspect of this illness.

And really all this stems from the fact that the way that the medical profession has re-named and re-defined that we used to know as ME, which is Myalgic Encephalomyelitis, which is a symptom complex of muscles symptoms, brain symptoms, infective symptoms, to Chronic Fatigue Syndrome, which is a much wider group of clinical presentations – and we have a whole spectrum of patients there who have an illness ranging from a physical illness at one end to a psychiatric cause of their chronic fatigue at the other.

And it’s rather like putting everyone who’s got a chronic headache – from migraine to brain tumours – under a chronic headache syndrome and saying they all have the same cause, they all have the same treatment and at the moment we have the thing called the NICE Guideline recommending only the psychological side of treatments – Graded Exercise, CBT – for people to whom these treatments in some cases just don’t work, and in the case of Graded Exercise Therapy, makes them worse. So that’s the context of the anger.’

SM: ‘Are you saying the government’s wasting money on the research that’s being done at the moment?’

CS: ‘Well, I think the main complaint about the government funding to the psychological-based research is that’s where all the government pot of money has gone. It hasn’t gone to the biomedical – this has had to be done by the charities, and most of this money has gone into CBT and Graded Exercise and we spent a vast amount of money a few years ago, two to three million pounds on something called the PACE trial, and I think there were again justifiable complaints about that because we felt it wasn’t going to tell us anything that we didn’t already know, and there are things that we do want to know about this illness.’

SM: ‘OK, well one of the things that came up in Tom Feilden’s report there is that there was a suggestion in the United States some years ago that there was a viral basis for this but it has not been replicated. There isn’t a candidate virus that could be causing this, is there?’

CS: ‘Erm, well I think you misinter-preted what’s going on with the virology of this illness which is quite complex. What is agreed is that a wide variety of infections can trigger this illness – glandular fever, parvovirus, hepatitis virus, Q fever infection – where the debate is whether these viruses then persist in the body, and there is conflicting evidence there.

And, if these viruses do persist, should we then be looking at the use of anti-viral medication, which is one of the things the Medical Research Council’s Expert Group on research priorities wants to look at, or should we all abandon all this? And those of us who want biomedical research want the answers to these different aspects of the illness. We want to know more about the virology, we want to whether virological treatments may be effective.’

SM: ‘But don’t scientists want to know that? That’s what seems illogical about this… why would someone be working on something that was ineffective? Why would there be a conspiracy to avoid working on something that might produce results?’

CS: ‘Well, I think the point is the anger stems from the fact that this illness encompasses a variety of -ologies if you like. It involves muscle pathology. It involves brain, immunological abnormalities, endocrine abnormalities and yes there may be a psychological input to the illness in some people – but the anger, the frustration is that all this effort, all this government funding is, or has been, just going to the psychological side.’

SM: ‘You, you had ME didn’t you?’

CS: ‘Um I got involved, like a number of doctors with this illness and really only changed my mind after contracting it myself following chicken pox which I caught from one of my patients.

But I came out of medical school, and I am afraid that this is where a lot of the prejudice among the medical profession comes from, back in the early 1970s – being told at the Middlesex Hospital that this was hysterical nonsense, ‘Go away, forget about it. It’s an illness that doesn’t exist.’ And that’s what I believed before I actually contracted it myself.’

SM: ‘Could, are they not likely to be connected?’

CS: ‘Sorry, what, what connected?’

SM: ‘I’m talking about the sort of the virus and the psychological. I mean there’s sort of such an objection to it having a psychological basis, but one wonders if there isn’t a connection.’

CS: ‘Well, as I say I think we are dealing with a spectrum, a wide spectrum of clinical conditions under this Chronic Fatigue Syndrome umbrella. We have people that we originally called ME – with their muscle, brain, infective-type symptoms. We have people with chronic fatigue, which doesn’t come on following an infection, which seems to appear for a variety of causes, and we are mixing them all up, and this is the problem.

We need to sub-group all of these different people that come under this umbrella and in actual fact because we do now have a Medical Research Council Expert Group on this, this is one of the priorities which we have identified – I am a member of this group – to look at now from the research point of view so we can actually sub-group people with different types of fatigue and give them the right type of treatment. But, until we find the causes of these different types of sub-groups and the role of infection and immunological disturbance, muscle abnormalities, etc, within the different sub-groups, we can’t find effective forms of treatment. And this is not what has been happening, this is why people are frustrated.’

SM: ‘We also I suppose, you would accept, we have a tragedy that we have scientists leaving the field.’

CS: ‘I don’t want to see scientists leaving the field. I want a debate with scientists, and it’s the way I feel we should do it – it’s the way I do it – scientific debate. Criticism is healthy, but it should be conducted through the medical journals. It should be conducted through constructive criticism.

As I said at the start of this interview, intimidation, personal abuse and whatever has no role to play whatsoever in this.’

SM: ‘ Dr Charles Shepherd, thank you very much.’

* Our thanks to MEA member Russell Fleming for providing the transcript.

From the Daily Telegraph, 29 July 2011.

Many ME patients believe that research into possible psychological causes for their condition represents an attempt to downplay their symptoms.

The illness, also known as chronic fatigue syndrome, is triggered by infections in the blood which are not fully understood.

Symptoms include extreme tiredness and aching muscles. Those severely affected often spend much of the day in bed or in a wheelchair.

This morning a doctor representing sufferers said the intimidation of scientists researching the causes of ME was ”completely unacceptable” but said there was anger about the way the illness is being investigated.

Charles Shepherd, medical adviser to the ME Association, was responding to reports that a small group of protesters have resorted to underhand tactics of intimidation to ensure any study of the illness focuses on whether the condition is caused by a virus.

According to BBC Radio 4′s Today programme, a number of scientists investigating ME have been targeted by protesters angry that they are looking at whether the illness has any psychological causes.

Dr Shepherd said that while he condemned the intimidation, there was frustration that all the Government funding was focused on whether the illness has a psychological cause.

He added: ”This sort of personal intimidation … is I believe completely unacceptable and it is also counterproductive because it doesn’t stop the type of research going on and it puts good researchers off, there is no doubt about that.

”I think you need to put this into the context of the fact that we have about 250,000 people with this illness. A very, very tiny minority of these people are involved in this sort of behaviour.

”But what people do however have a justifiable complaint about is that there has been very little, or almost nil, Government-funded research into the biomedical aspect of this illness.

”We have a whole spectrum of people there who have an illness ranging from a physical illness at one end to a psychiatric cause of chronic fatigue at the other, and it is rather like putting everyone who has a chronic headache, from migraines to brain tumours, under a chronic headache syndrome saying that they all have the same cause and the same treatment.”

He added: ”Yes, there may be a psychological input to the illness in some people but the anger, the frustration, is the fact that all this effort, all this Government funding, has been going just to the psychological side.

”I don’t want to see scientists leaving the field. I want a debate with scientists and it’s the way I feel we should do it. It’s the way I do it.

”Scientific debates, criticism is healthy but it should be done through the medical journals, through constructive criticism. As I said, intimidation, personal abuse, has no role to play in this whatsoever.”

The ME Association has been offered the top slot on the BBC Radio 4 Today programme tomorrow morning (Friday) to discuss the present state of ME research in the UK.

MEA medical adviser Dr Charles Shepherd (pictured) is expected to be interviewed at 8.10am – with an earlier recorded package presented by BBC science correspondent Tom Fielden, which is expected to feature interviews with Professor Simon Wessely and Dr Esther Crawley.

If you’re near a radio, start listening at about 7.45am to catch Fielden’s report.

Of course, this announcement comes with the usual warning. The item may be squeezed out if a major news event breaks. We were trumped by the Public Sector Pensions story this morning.

From BMC Medicine, 28 July 2011 (open access journal)

Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care

Luis C Nacul, Eliana M Lacerda, Derek Pheby, Peter Campion, Mariam Molokhia, Shagufta Fayyaz, Jose CDC Leite, Fiona Poland, Amanda Howe and Maria L Drachler.

BMC Medicine 2011, 9:91doi:10.1186/1741-7015-9-91
Published: 28 July 2011

Abstract (provisional)

Background

ME/CFS or chronic fatigue syndrome (CFS) has been used to name a range of chronic conditions characterized by extreme fatigue and other disabling symptoms. Attempts to estimate the burden of disease have been limited by selection bias, and by lack of diagnostic biomarkers and of agreed reproducible case definitions. We estimated the prevalence and incidence of ME/CFS in three regions in England, and discussed the implications of frequency statistics and the use of different case definitions for health and social care planning and for research.

Methods

We compared the clinical presentation, prevalence and incidence of ME/CFS based in a sample of 143,000 individuals aged 18 to 64 years, covered by primary care services in 3 regions of England. Case ascertainment involved: i) electronic search for chronic fatigue cases; ii) direct questioning of general practitioners (GPs) on cases not previously identified by the search; iii) clinical review of identified cases according to CDC-1994, Canadian and Epidemiological Case (ECD) Definitions. This enabled the identification of cases with high validity.

Results

The estimated minimum prevalence rate of ME/CFS was 0.2% for cases meeting any of the study case definitions, 0.19% for the CDC-1994 definition, 0.11% for the Canadian definition and 0.03% for the ECD. The overall estimated minimal yearly incidence was 0.015%. The highest rates were found in London and the lowest in East Yorkshire. All cases conforming to the Canadian criteria also met the CDC-1994 criteria but presented higher prevalence and severity of symptoms.
Conclusions

ME/CFS is not uncommon in England and represents a significant burden to patients and society. The number of people with chronic fatigue who do not meet specific criteria for ME/CFS is higher still. Both groups have high levels of need for service provision, including health and social care. We suggest combining the use of both the CDC-1994 and Canadian criteria for ascertainment of ME/CFS cases, alongside careful clinical phenotyping of study participants. This combination if used systematically will enable international comparisons, minimisation of bias, and the identification and investigation of distinct sub-groups of patients with possibly distinct aetiologies and pathophysiologies, standing a better chance of translation into effective specific treatments.

Viruses 2011, 3, 1312-1319; doi:10.3390/v3081312

OPEN ACCESS (full paper can be downloaded)
viruses
ISSN 1999-4915
www.mdpi.com/journal/viruses

Commentary
Origin of XMRV and its Demise as a Human Pathogen Associated with Chronic Fatigue Syndrome

Oliver Hohn and Norbert Bannert *
Center for HIV and Retrovirology, Robert Koch Institute, Nordufer 20, 13353 Berlin, Germany; E-Mail: HohnO@rki.de

* Author to whom correspondence should be addressed; E-Mail: BannertN@rki.de; Tel.: +49-30-18754-2549; Fax: +49-30-18754-2334.

Received: 23 June 2011; in revised form: 4 July 2011 / Accepted: 14 July 2011 / Published: 27 July 2011

Abstract:

Retroviruses are well known pathogens of mammals, birds and fish. Their potential to induce cancer in chickens was already described almost 100 years ago and murine retroviruses have been a subject of study for 50 years. The first human retroviruses, HTLV and HIV, were discovered more than 30 years ago, surprising researchers and physicians by the profound differences in the diseases they cause. HTLV-1 is able to induce, after decades of infection, lymphomas/leukemia or neuroimmune disorders whereas untreated HIV infection leads almost inevitably to AIDS. The recently described XMRV (xenotropic murine leukemia virus-related virus) appeared to possess many of the features known for HTLV and was regarded by some to be the third human retrovirus. However, recent publications by Knox et al. [1] and Paprotka et al. [2] have shed new light on this gammaretrovirus. Knox and colleagues clearly demonstrate that XMRV is absent in patients belonging to a chronic fatigue syndrome cohort who had previously been reported to be XMRV-positive [3]. This supports the growing suspicion that laboratory contamination was responsible for the postulated link between XMRV and the disease. Furthermore, Paprotka et al’s identification of XMRV’s origin and the phylogenetic analysis of known XMRV sequences are further nails in the coffin to the notion that XMRV is a clinically relevant infectious human retrovirus.

Keywords: XMRV; CFS; origin; recombination

From the Daily Mail, 27 July 2011 (story by Kirsty Walker) – comments to the paper still being accepted.

(Headline) The shirking classes: Just 1 in 14 incapacity claimants is unfit to work

Only seven per cent of incapacity claimants are sick enough to stay on benefits for good.

The results of new and tougher tests show the vast majority are either fit enough to work, or abandon their application half-way through.

All fresh applicants for the Employment and Support Allowance, which is replacing Incapacity Benefit, must undergo the work capability assessments.

The resulting figures, which will reopen debate about ‘workshy’ Britain, show that 39 per cent were found fit enough to take a job.

A further 17 per cent were deemed able to do some form of work, with the right support.

More than one in three dropped out in the application process and only one in 14 was too sick to undertake any employment.

Around 1.3million tests were carried out between October 2008 and last November – with 88,700 people found completely unfit to work.

However, MPs on the work and pensions select committee yesterday claimed the tests were flawed.

They found that large numbers of seriously unwell claimants had been wrongly refused support and that large numbers of appeals had proved successful.

David Cameron insisted yesterday the system was much better at putting people through their ‘paces’.

During a visit to Wales, the Prime Minister said: ‘For too long in this country we have left people on welfare for year after year when those people, with help and with assistance, could work.

‘And so we’re producing a much better system where we really put people through their paces and say that if you can work, you should work.

‘We’ll be there to help you with the training and the skills but what we are finding, and the figures show today, is that only one in four of the people who apply for the new benefit are actually found to be unable to work. The rest are able to work and we’re going to help them to get jobs. That will be good for them, good for their families and good for our economy.’

For one moment, put aside the mind-crunching names they give to these things and remember that Dr Andy Beaumont is spending a year doing something wonderful for his health, his peace of mind and for the ME Association.

He’s mountain-walking in Wales and fully expecting to climb every peak over 2,000 ft in the Principality by this time next year. He’s done 18 so far – with just another 172 to go.

Andy, just retired as a marine scientist at Bangor University in north Wales, is working his way through the Rhinogs at the moment. They’re a range of boulder-strewn and heather-clad mountains just below the Lleyn Peninsula. It’s hard sedimentary rock known as the Harlech dome, the weather-beaten remains of a taller range which once stretched all the way from Snowdon in the north to Cader Idris in the south.

In the Welsh, they’re known as the Rhinogydd  – or are they the Rhinogau? Dialectical purists spend forever arguing the toss… best move on.

“I came to north Wales from the south east of England in the late ’60s to work at what when then called the University College of North Wales and I’ve stayed put ever since. One of the things that attracted me to the place was the mountains”, said Andy, who has already ascended all the Welsh peaks over 3,000 ft high.

He’s taken on the challenge for the MEA because his wife, Dr Kate Hoare, has the illness. She’s given him leave of absence to follow his dream. Instead of post-retirement Andy at a loose end round the house at Llanfairpg, she’s making the most of the peace and quiet while he’s out for the day.

Andy, a 66-year-old veteran marathon runner who has completed the Snowdon Marathon which is rated as one of the toughest in the world, added: “Mountain walking is something I really enjoy and I’ve already noticed my fitness levels improving since I took this on.”

Some days, while scrambling over the rocks on his walk on the lesser-known peaks, he sees very few other people  There’s peace and quiet up there, too. And fabulous views when the mists haven’t closed in.

The legs, the joints and the lungs are holding up just fine. “I’ve noticed it becoming easier with every one I do”.

There’s a little niggle of a doubt about a foot injury he sustained some years ago, which became arthritic. But, for the moment, that too is not grumbling much.

Andy is using Nuttalls’ inventory of the Welsh peaks as his guide to those which go up to 2,000 ft.

In an email telling us about his plans, Andy wrote: “They are called the Welsh HEWITTs (Hills in England Wales and Ireland over Two Thousand feet), but because a definitive guide to the Wales and England summits was published by John and Anne Nuttall in 1989, they are also often called the ‘NUTTALLs’. It can all get very anorak-ish because the tops of mountains can have several mini-summits and depending on the drop between them they may or may not be classified as a summit!

“I’m going by the Nuttalls definition and this gives 190 summits. Of course, having lived in North Wales for 40 years, I’ve climbed all the famous 13 peaks over 3,000ft in Snowdonia several times, and many of those above 2,000ft. However, these earlier climbs will not count for my challenge.”

Andy will be keeping readers of our quarterly ME Essential magazine in touch with developments in future issues.

If you would like to cheer Andy on by tipping a few quid into his fundraising page, please visit his online page at:

www.justgiving.com/Andy-Beaumont

David Torrance (Kirkcaldy) (Scottish National Party): To ask the Scottish Executive what progress it has made on (a) offering day-to-day assistance to people with myalgic encephalopathy (ME) and (b) providing funding for research into this condition.

The Cabinet Secretary for Health, Wellbeing and Cities Strategy, Nicola Sturgeon, replied:

In September 2010, we published a Scottish Good Practice Statement (SGPS) on ME-CFS, for use by General Practitioners, as part of the process of ensuring that people get better and more consistent standards of care, including quicker and more reliable diagnosis. The Statement provides GPs with an algorithm setting out the generic care pathway. The Statement and its accompanying documents – a Quick Reference Clinical Guide and a Guide for Patients - can be found at: http://www.show.scot.nhs.uk/GoodPracticeStatementonME-CFSforGeneralPractitioners.

Healthcare Improvement Scotland (formally NHS QIS), launched the Clinical Standards for Neurological Health Services on 21 January 2010. The standards are in part generic, dealing with the early part of the patient journey, including access to specialist neurological services and the quality of the patient experience. The generic standards are applicable to people living with all neurological conditions including ME- CFS and Healthcare Improvement Scotland is supporting NHS Boards in implementing the standards through its 2-year implementation and improvement plan.

The Chief Scientist Office (CSO) within the Scottish Government Health Directorates has responsibility for encouraging and supporting research into health and health care needs in Scotland. CSO primarily responds to requests for funding research proposals initiated by the research community in Scotland and this role is well known and advertised throughout the healthcare and academic community.

CSO is not currently funding any research into ME-CFS, but would be pleased to consider research proposals, of a sufficiently high standard, for innovative studies to treat Myalgic Encephalopathy/Chronic Fatigue Syndrome. These would be subject to the usual peer and committee review.

From the BBC News website, 26 July 2011

Only 7% of people claiming sickness benefits were unable to do any sort of work, new figures have shown.

New claimants of Employment and Support Allowance (ESA) must undergo tests to see if they are capable of some sort of employment.

Of 1.3 million tests between October 2008 and November 2010, some 88,700 were considered unfit for any work.

The TUC said the tests were a money-saving exercise, adding that disabled people were not “trying it on”.

The Department for Work and Pensions figures come on the day a report warned tests caused anxiety among claimants.
Fitness

ESA is the successor to Incapacity Benefit and claimants are required to go through a series of tests to judge their fitness for work.

The department has released the results from 1.3 million tests over a period of more than two years which showed:

* 7% were incapable of any work
* 17% were able to do some sort of work given the correct support
* 39% were deemed to be fit for work and were moved onto jobseeker’s allowance
* 36% dropped out of the application process
* 1% of applications were still in progress

“These figures show that many people are able to work with the right help. We have strengthened the support now available tailoring it to individual needs so they can overcome whatever barriers they face,” said Work and Pensions Minister Steve Webb.

Those who cannot work will always receive our unconditional support but for those who can work it is right that they get the help they need to get into employment.

“We are continuously improving the medical test to ensure that it is as fair and effective as possible.”

But there has been some criticism of the tests.

“The new incapacity benefit assessment is a much tougher test than previously and is designed to save the government money by excluding more people,” said TUC general secretary Brendan Barber.

“It is therefore unsurprising that more disabled people have been declared fit for work. These figures certainly do not suggest that thousands of disabled people are suddenly trying it on.

“The TUC has heard from disabled people all around the UK who feel the tests have been unfair and ineffective. The government needs to do much more to help disabled people back into jobs, rather than cracking down on the benefits they get when they are unable to work.”

Vulnerable

The figures came as a report by the Work and Pensions Committee concluded that some vulnerable benefit claimants had payments stopped because of administrative errors in work assessments.

This affected some of the 1.5 million existing incapacity benefit claimants who are being reassessed with work capability assessments to encourage them back into jobs.

Overbooking of slots led to some people being marked as failing to attend, leading to suspended payments.

“The government’s aim of helping benefit claimants back into work is laudable, but the scale of the challenge should not be underestimated and nor should the level of anxiety which surrounds the process,” said Dame Anne Begg, who chairs the committtee.

The reassessment process, which began nationwide in April, determines whether applicants are entitled to ESA, or are considered “fit for work”, in which case they are put on jobseeker’s allowance instead.

The assessments are carried out by Atos Healthcare. It was criticised in the committee’s report, although the committee accepted that some improvements had been made.

“[The service] has often fallen below the standard claimants rightly expect. This has contributed significantly to the widely felt mistrust of the whole process,” the report said.

It added that it was unacceptable that some people had found their benefits were stopped as a sanction for failing to attend the assessment when it was no fault of their own.

Cases had been the result of overbooking, administrative errors, or benefits claimants being too ill to attend the test.

Atos declined to comment on the report when contacted by the BBC.

The report called on the government to be more active in explaining the support available to people, irrespective of the outcome of the assessment.

It was also critical of the “irresponsible and inaccurate” media coverage of the issue which labelled some benefit claimants as “workshy”.

Analysis by Alison Holt, Social Affairs Correspondent, BBC News

These figures – which echo previously published statistics – need to be seen in context. They are more complicated than whether somebody is fit to work or not.

For example, those who drop out of the assessment process may still have a legitimate claim. For instance, someone with a mental health problem may find the process too difficult to stick with. Today’s select committee report says more needs to be done to understand why people are dropping out.

In addition, a significant number of cases go to appeal and 39% of the decisions are overturned.

Finally, changes to the work capability assessment were introduced at the start of the year because of serious criticism about how the system was working. We do not know what impact that has had on the figures yet.

Have you been affected by the issues raised in this story? Do you claim ESA?  If you click on the link at the top of the story,  you can send the BBC your comments. Please remember to leave a contact number if you are happy to speak to a BBC producer about these issues.

The latest book by Dr Who spin-off author Jacqueline Rayner will be treated to a massive print-run following the announcement that it is one of eight titles selected for next year’s ‘Quick Reads’ – a literacy scheme run out in libraries, schools and bookshops round the UK.

‘Doctor Who: Magic of Angels’, written by Jacqueline, is expected to have a print-run going into “hundreds of thousands” of copies, according to the Quick Reads office this morning – after the list was announced in ‘Bookseller’ magazine last week. The actual number of copies to be printed will be down to BBC Books, Jacqueline’s publisher.

Others authors to benefit from similar huge extra exposure will include Maeve Binchy, Alexander McCall and Lynda La Plante.

“It’s all about getting books which are easy and exciting to read in front of people who wouldn’t normally pick up a book”, said Jacqueline from her home in Chelmsford, Essex, today.

Jacqueline – who prefers to be called ‘Jac’ – has been writing since her teacher training was cut short by ME after a bout of glandular fever in 1993. “I suppose if I hadn’t become ill I would be teaching history instead.”

Jac has written over 30 books, many becoming best-sellers in their own right. In her mind’s eye, she bases her characterizations for the Dr Who books on the latest actors in the TV series with Matt Smith leading the cast in ‘Magic of Angels’. But she refuses to be drawn on who has been her favourite Dr Who.

Jac, who is aged 39 with twin boys who start school in September, has also written spin-offs for the Robin Hood and Merlin series. “I’d jump at doing an actual script for a show but I haven’t been asked yet”, she said.

Speaking on one of her better days during an ME relapse, 39-year-old Jac said: “Last October I went down with a virus, went into hospital and from then on everything has been pretty much downhill. I had to go and use a wheelchair for going outdoors again – something I hoped I would never have to do again.”

The Quick Reads scheme accompanied by lots of publicity will launch in February and lead up to World Book Day the following month. Each book on the list will cost £1.99. ‘Doctor Who: Magic of Angels’ will win Jacqueline Rayner an army of new readers.

Jac tweets as @GirlfromBlupo – named after her favourite character in ‘Bunty’, the girls’ comic anthology published by DC Thomson until 2001.

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Random House boss speaks up for ‘Quick Reads’

Dame Gail Rebuck, chief executive of publishers Random House and chair of Quick Reads, has urged retailers to devote more shelf space to the promotion.

In ‘Bookseller’ magazine last week, she wrote: “This incredibly strong line-up of some of the UK’s most accomplished authors builds on the heritage of the achievements of Quick Reads to date, and continues to demonstrate the fantastic commitment we have found among authors and publishers to support our cause and encourage adults to fall in love with reading.

“With such quality writers involved, we can ensure that there is a story for everyone to enjoy and that their first reading experience is not their last.”

She added that more than 3.5 million Quick Reads have been distributed since 2006 to supermarkets, bookshops, workplaces and prisons, as well as more than two million Quick Reads being borrowed through libraries. However, Rebuck urged bricks-and-mortar booksellers to back the campaign with shelf space. She said: “We need our books to be easily accessible on high street shelves and in supermarkets.”

“Typically, those who love their first Quick Read go on to become enthusiastic readers, devouring every book in the series, more books by their favourite authors and then other books entirely.”