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Telegraph - ME isn’t 'all in the mind’

26/11/2012

 
ME isn’t 'all in the mind’, but it’s still a mystery Telegraph
By Caroline Lavender,  26 Nov 2012

As medical adviser to the ME Association and an ME sufferer,
Dr Charles Shepherd has spent the past two decades vigorously
fighting the dismissive attitude still common among the medical
profession. Here, he talks about the latest research into the disorder www.telegraph.co.uk/health/healthnews/9699911/ME-isnt-all-in-the-mind-but-its-still-a-mystery.html

Under the photo of Dr Charles Shepherd in the Telegraph:

A significant minority of doctors still don't believe in the existence of ME.
They refuse to diagnose or manage it – that is totally unacceptable,' says
Dr Charles Shepherd

Link to the Daily Telegraph article on the AfME website:

Refusal to diagnose M.E. is unacceptable
Dr Charles Shepherd, M.E. Association, talks about living with the illness and attitudes towards it. “A significant minority of doctors still don’t believe in the existence of M.E.,” he says. “They refuse to diagnose or manage it - that is totally unacceptable.”
Daily Telegraph, p 28
26/11/12

www.actionforme.org.uk/get-informed/news/daily-press-summary/daily-press-summary-26112012

Full article also on the MEA website:

‘ME isn’t ‘all in the mind’, but it’s still a mystery’ |
Daily Telegraph talks to Dr Charles Shepherd | 26 November 2012 by Tony Britton on November 26, 2012
www.meassociation.org.uk/?p=13809

From the Daily Telegraph 26 November 26 November 2012 (story by Caroline Lavender). There’s a good half a page all the way down to the fold on page 28 of the main edition.

As medical adviser to the ME Association and an ME sufferer, Dr Charles Shepherd has spent the past two decades vigorously fighting the dismissive attitude still common among the medical profession. Here, he talks about the latest research into the disorder It was in the late Seventies that Charles Shepherd became ill with myalgic encephalomyelitis, or ME as it is better known. It was an era, he recalls, when the condition was still dismissed as “hysterical nonsense” by most clinicians. Working as a young doctor at Cirencester Hospital, he had contracted a severe case of chickenpox from a patient with shingles. “I’d been perfectly fit and healthy. The infection had resolved but I felt mentally and physically knackered and kept having to take more and more time off,” he recalls.

Shepherd says he has never been truly well since. He “plods along”, though managing to enjoy life: he regularly walks Polar, his snow-white labrador, near the Cotswolds home he shares with his wife Pam, a nurse. On the day we meet, he is helping his daughter Suzie, a student in London, plan her 20th birthday (he also has two sons, Patrick, 28, and Alisdair, 31).

As medical adviser to the ME Association, Shepherd has spent the past two decades vigorously fighting the “all in the mind” attitude which, he says, is still common among the medical profession. He is convinced that this complex disorder, which has puzzled scientists for decades, has biological rather than psychological origins – although unlike some on the militant fringes of the ME community, he prefers to use reasoned persuasion rather than threats when discussing the cause.

“I unequivocally condemn people who send abusive emails,” he says, referring to the harassment of researchers, doctors and journalists – including the Telegraph columnist Dr Max Pemberton – who have speculated on the “psychological” explanation. “But I also understand why people feel so angry. A significant minority of doctors still don’t believe in the existence of ME. They refuse to diagnose or manage it – that is totally unacceptable.”

Now more commonly known as chronic fatigue syndrome (CFS), ME has come a long way since it was derided back in the Eighties as “yuppie flu” (its typical victim supposedly being a high-flying young professional). Today, it is recognised by the World Health Organisation, the National Institute for Health and Clinical Excellence (Nice) and much of the medical establishment as an often severely disabling disease, characterised by a bewilderingly wide set of symptoms, the chief ones being profound fatigue and widespread muscle pain. Difficulties with concentration and memory are also common.

Yet the debate over the cause of ME continues. Is it biological, psychological or a combination of both? The controversy flared up again in September, with the publication of findings finally disproving the theory that ME is linked to XMRV and mMVL, viruses that had previously been isolated in tissue samples taken from ME patients. Scientists at Columbia University, New York, found compelling evidence that detection of the viruses was a result of contamination, corroborating two previous studies’ findings.

The collapse of this theory, greeted with dismay by some ME patients, came as no surprise to Shepherd, who says he was always sceptical of the “hype” surrounding it. “In the US people spent a lot of money getting tested [for XMRV] and getting anti-retroviral drugs, but we have always advised against this because the research [from the University of Nevada, published in 2009, that implicated the virus ] hadn’t been properly evaluated or replicated.”

By taking this stance, Shepherd himself became the target of hate mail. “People get so desperate and put such faith in findings, they find it hard to have them criticised.”

ME researchers now view the illness as having three separate components: first, a (probable) genetic predisposition; second, a precipitating factor – which for 75 per cent of patients is an infection, usually viral, although occasionally other immune stressors such as immunisation may be a trigger; and finally the development of the condition itself. Other signs include fainting, low blood pressure, and irritable bowel syndrome.

The origin of such symptoms remains a mystery. One theory gaining favour is that ME patients have an aberrant immune response which fails to “switch off” after the original infection has resolved itself. In particular, it is possible that some ME patients have a surfeit of cytokines – chemicals produced by the immune system.

Another theory is that an auto-immune response (in which the immune system produces antibodies that attack the body’s own cells) may be involved. Other research is looking at potential abnormalities in the muscles of ME patients, with evidence that some sufferers produce excess acid when they exercise (Shepherd himself took part in research on muscle tissue – and still has a scar on his leg to prove it).

One study at Liverpool University is examining potential structural abnormalities in the mitochondria – cell components which produce energy in a usable form – in skeletal muscle.

A further focus of research are abnormalities in the hypothalamus. This tiny pea-shaped gland in the brain regulates a number of functions including hormone secretion (via the pituitary and adrenal glands). Problems here could help explain symptoms as diverse as sleep disorder, low blood pressure, temperature disturbance and heart, bowel and bladder problems. “A large number of papers demonstrate that ME patients have abnormalities in the hypothalamic-pituitary-adrenal axis,” says Shepherd.

In particular, he says, ME patients have been found to have lower levels of cortisol, a hormone secreted by the adrenal glands. He concedes that ME researchers are still “fitting together the jigsaw puzzle”, with some way to go before treatments are developed. “We have reached a point where there are drugs that would be worth trialling,” he says. But clinical trials are expensive to run and the pharmaceutical industry, the only realistic source of such funding, has shown little interest.

In the meantime, can graded exercise (a programme aimed at building up activity levels) and cognitive behavioural therapy, advocated by Nice, help with the symptoms?  
“The Nice guidelines on ME are not fit for purpose,” Shepherd argues. “They reflect the belief that this is a psycho-social illness.”  He himself is a fan of pacing – a technique which involves listening to your body to find the right balance between rest and activity.  
“I go swimming and walking, but within the limits of what I can do.”

He also feels progress has been stymied by rebranding ME as chronic fatigue syndrome. “Doctors never liked the term ME because it refers to inflammation of the brain and spinal cord, which has never been found,” he says. “But calling it CFS has made research trickier because CFS is an umbrella term for different pathologies – it’s a bit like grouping together all the different kinds of arthritis and saying they have the same cause.” He prefers the term myalgic encephalopathy, which reflects a significant neural abnormality in the brain.

He is encouraged, though, by progress at the Medical Research Council, where an expert group to encourage high-quality research into ME was set up in 2008, and where, last year, £1.5 million was ring-fenced for this purpose. So far funding has been approved for five studies – among them mitochondrial function and cytokine production in muscle tissue, immune system involvement and autonomic dysfunction.

So is Shepherd discounting entirely any psychological component in ME? “I have no problem,” he replies, “with the idea that the mind affects the body and the body affects the mind. Of course, people who are chronically ill get depressed and have psycho-social stress. But the point is that too much energy and money has gone into research based on the belief that ME is psycho-social – when the right route is biomedical.”

Neurological Services - (inc ME/CFS)

22/11/2012

 
Neurological Services Debate - (inc ME/CFS)

Countess of Mar debates M.E. in Lords

21 November 2012

The Countess of Mar raised the ignorance, injustice and neglect of M.E. during a debate in the House of Lords yesterday.

Speaking in response to a question for short debate, asked by Baroness Ford about what progress had been made in improving neurological services, Lady Mar raised about the inadequacy of service provision for M.E. patients and poor levels of understanding of M.E. among health and social care professionals.

www.actionforme.org.uk/get-informed/news/policy-and-campaigns/countess-of-mar-debates-me-in-lords



The Countess of Mar spoke about ME/CFS, including specialist ME centres throughout the UK, and the PACE trial, in the debate on Neurological Services
in the House of Lords on 20 November 2012.


Hansard - House of Lords debates
www.parliament.uk/business/publications/hansard/lords/ Lords Hansard - 20 Nov 2012
www.publications.parliament.uk/pa/ld201213/ldhansrd/text/121120-0002.htm#\12112060000395  

[the following includes extracts from the response - at the end]

20 Nov 2012 : Column 1754

Health: Neurological Services Question for Short Debate 7.30 pm Asked by Baroness Ford

To ask Her Majesty's Government what progress has been made in improving neurological services, and in particular the provision of epilepsy services, in the United Kingdom.

8.16 pm The Countess of Mar: My Lords, like other speakers, I am grateful to the noble Baroness, Lady Ford, for raising this subject today. She has asked several very valid questions, as have other speakers, and I hope that the Minister will be able to answer them all.

While the noble Baroness, Lady Ford, has specified epilepsy services in her Question, I realise that she is aware that epilepsy is far from being the only neurological service that has inadequacies. For many years, I have worked with people with ME, also known as CFS/ME.

I am chairman of Forward-ME, vice-chair of the All-Party Parliamentary Group on ME and patron of a number of ME charities. Forward-ME is a member of the Neurological Alliance.

I have been assured that Her Majesty's Government accept the WHO's categorisation of ME as a neurological condition. The CMO report of 2002 described it as a "genuine illness" which,

"imposes a substantial burden on the health of the UK population".

The NICE guideline of 2007 stated that:

"The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions".

Yet there is no provision to examine the neurological aspects of this illness.  Patients are simply allocated to either the CFS/ME group, where they are offered psychological therapies, or to various ad hoc diagnostic categories containing patients with neurological symptoms of unknown aetiology.  In practice, these can be considered dustbins where no further investigations are considered necessary.

After the Chief Medical Officer's report on CFS/ME in 2002, £8.5 million was allocated to setting up specialist ME centres. Some of the centres have closed because of a lack of funding. Others continue to operate but are somewhat constricted by the view that the only scientifically validated treatment for the condition is a combination of cognitive behaviour therapy and guided exercise training-CBT and GET. In fact, the much trumpeted PACE trials, which cost the taxpayer some £5 million and were intended to demonstrate the effectiveness of these so-called treatments, did no such thing. There is no indication in the trial results that one single person fully recovered after a year of CBT and GET. There is no indication that any who were not working went back to work or, in fact, that there was more than a very modest improvement in those whose health was deemed to have improved.

I would like to be able to go into the facts behind this research in more detail, but this is not the occasion. However, I must say that the spin on the results has had a very deleterious effect on the public perception of the illness and on the provision of health and social care for people with ME.

What is happening to these frequently very sick individuals? There is still a great deal of scepticism surrounding the reality of this illness, despite pronouncements from government, the CMO and NICE.

20 Nov 2012 : Column 1792

It is acknowledged that if the condition is caught in the early stages and dealt with conservatively, it can improve and patients can recover. Instead, patients and, particularly, children are pushed by medical practitioners or, in the case of children, by teachers, social workers and carers, to keep going to work or school on the basis that it is good for them, until they collapse and what was a mild, treatable condition becomes chronic and untreatable. They are then encouraged to undertake programmes of cognitive behaviour therapy and guided exercise training which, at best, may help them to cope with their illness or, at worst, may exacerbate their symptoms, and they are blamed for not wanting to get better.

The Neurological Alliance is concerned that for clinical commissioning groups which cover relatively small population areas, it will not be cost-effective to commission services for less common conditions. I am particularly concerned about ME because GPs will do the commissioning. The Neurological Alliance suggests that the NHS Commissioning Board should monitor the observance and development of collaborative arrangements to prevent what we have come to know as a postcode lottery.

I have spoken about the poor levels of understanding of ME among health and social care professionals. This runs through much of neurology.  Lyme disease, for example, is often mistaken for ME, and no treatment is offered as a result, yet with simple antibiotic treatment, Lyme disease can be cured. There is a need to equip properly commissioners in order to address successfully the legacy of neglect which has resulted from the complexity and relative rarity of most neurological conditions. There is a need for a national neurology strategy, as other speakers have said, dedicated national leadership and mandatory quality, accountability and incentive mechanisms.

The Neurological Alliance recognises that cross-cutting initiatives can help to support, develop and enhance services for people with long-term conditions, but it is concerned that the NHS Commissioning Board takes only a generic approach to certain long-term conditions while giving particular attention to others and that commissioners' priorities will be weighted in favour of areas given a profile. Will the Minister say what guarantees there are that patients with less well recognised conditions, or conditions such as ME and Lyme disease, will be given equal treatment?

NICE, the Department of Health and the National Quality Board have yet to establish how they will prioritise the development of more than 160 quality standards. This will have the effect of prolonging neglect in areas without NICE-accredited guidance- ME is an exception as there is guidance-leaving commissioners unsupported in what are often the most complex and challenging areas. As other speakers have already asked, is the Minister able to enlighten the House on the likely progress?

Extracts from the response -

With regard to following the NICE guidelines, I remind him that they are advisory, not mandatory.  Clinicians are free to adapt the guidelines.  However, in a transparent system where those guidelines are known, that, too, puts pressure on the clinicians via the patients and certainly by the specialist organisations, which are clearly so well aware of what is required.

… … … … … … All conditions will have equal priority under the new system. For those who are concerned about so-called Cinderella conditions, that should be an encouraging answer, although those who feel that the diseases that they are particularly concerned about get a lot of focus already might be a bit concerned. All conditions will have equal priority, so Cinderella conditions should be improved.

I conclude by assuring noble Lords that there is a real commitment within the Government to address the challenges identified this evening, with the support of the NHS Commissioning Board and generally within the health and social care sectors. We recognise that much still needs to be done, but our primary goal is the same: to improve the patient experience and outcomes, and to bring real benefits and real change to the lives

20 Nov 2012 : Column 1800

of people living with neurological conditions. I am very sure that the NHS Commissioning Board will have heard what noble Lords have said in this debate.

House adjourned at 8.48 pm.

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