Nine ME/CFS letters in ‘The Sunday Times’ today | 12 May 2013

These letters appear in ‘The Sunday Times’ today in response to the five-page ‘Science under Siege’ feature by Michael Hanlon that was published in the Sunday Times Magazine last week.

Time to turn tide on ME therapies

MY DAUGHTER was diagnosed in 1999 at the age of eight with myalgic
encephalomyelitis (ME) by the late Dr Alan Franklin, a paediatrician
specialising in children with this illness (‘Scientists under siege’,
Magazine, last week).

Dr Franklin travelled the country supporting families threatened with removal of their severely ill ME children, most of whom were housebound – and many bedridden and tube-fed such as my daughter – with symptoms that included, among others, paralysis, nerve and muscle pain, nausea and loss of speech.

These children were suffering from what the World Health Organisation
classifies as a severe and chronic neurological – not mental – illness. Sadly, families with such children are still being pressured today to make them undergo inappropriate and invasive treatments precisely because the prevailing view is that the chronic element of ME is psychological. Too many of my daughter’s friends remain bedridden with horrendous symptoms because of the misguided use of “therapies”.
Kathleen Goodchild, St Albans, Hertfordshire

Positive action

Far from “skewing a whole branch of medicine”, responsible activism in ME is directed at promoting and encouraging scientific research and its funding. Activism has been pivotal in improving research and treatment for many diseases, including Aids, multiple sclerosis, breast cancer and malaria, with the government bringing up the rear.
Jean Harrison, Salem, Massachusetts, USA

Help, not hinder

Unfortunately your article will reinforce the idea that ME/CFS (chronic fatigue syndrome) is a mental health disorder and can therefore be dismissed. I am the sister of a severely disabled sufferer for 26 years, and we are desperate for the cause, whether psychological or not, to be found and for an effective treatment.

This can only happen with far greater funding for research into this
devastating condition. The misguided actions of a small minority will only hinder this and thereby prolong the agony of sufferers.
Debbie Gilbert, Watford, Hertfordshire

Cause for collaboration

The UK’s leading ME/CFS charities deplore the harassment or abuse of
researchers undertaken by a tiny but vocal minority of people. Many
sufferers are living without treatment or support, or even a proper
diagnosis – this should be the real headline news.

We wish to support researchers to help us better understand the causes and to improve treatments. The future for many thousands of patients will depend on constructive collaboration between patients, charities, funders and scientists.
Mary-Jane Willows, Association of Young People with ME (AYME), Action forME, Chronic Fatigue Syndrome Research Foundation, ME Association, ME Research UK

Joining forces

Thankfully these days there are a good number of specialist NHS services for those affected across the UK by CFS/ME. These services deal with 9,000 new referrals a year in England and since being established in 2004 have seen 70,000 cases.

We are much encouraged by collaborative research led by experts in the field and supported by the Medical Research Council and national charities that is looking at ways to improve and expand research into this life-changing illness, which affects about 1-2% of the adults and teenagers in Britain.
Michelle Selby, British Association for CFS/ME, Dr Alastair Miller, Consultant Physician in Infectious Disease, Liverpool CFS service

Therapist support

There is another understanding of ME that sees it as neither a result of a virus nor a mental illness. Therapies that find the roots of ME in primary, fundamental emotions see the physical condition as essentially a symptom of these.

These approaches (which are not cognitive behaviour therapy or otherwise psychotherapeutic) say that the key lies in recognising these fundamental emotions, their sources, and taking constructive actions based upon them, raising the consciousness of an individual and so empowering them.

Crucial to this, of course, is the therapeutic relationship between the therapist and the client, as my wife has discovered in her own practice.
Andrew Whiteley, Consett, Co. Durham

Research moves on

Legitimate requests for further information, missing data and clarifications(FoI or otherwise) should not be conflated with the reported ‘extremist’ behaviour. Michael Hanlon’s article did not appear to be particularly fresh or current. An article in The Times in 2011 featured most of the same protagonists, claims and counter-claims. Thankfully serious scientific research has moved on, as reported in The Times (April 23), ‘Scientists have
found compelling new evidence for an underlying biological cause’.
Duncan & Lesley Cox, Rugby, Warwickshire

Majority report

What a pity that you devote an entire article on ME to publicity for the 50-80 activists engaged in an abhorrent hate campaign and ignore the 550,000 ME sufferers, who wait patiently for some effective treatment for this dreadful disease. I have had ME for 21 years after catching a virus on holiday and it has robbed me of any kind of normal life.

All I, and most sufferers, want is some effective treatment which at present does not exist (I have tried them all!). We do not care what our illness is; we just want someone to find out the cause and hopefully a cure.

Two weeks ago, a report in The Times, ‘Biological breakthrough offers fresh hope for ME sufferers’, featured the work of the dean for clinical medicine at Newcastle university, who has discovered “very real abnormalities” in the cells of ME sufferers – proof that it is not “all in the mind”. It’s a pity that you did not focus on the newer more hopeful biomedical research such as this.
Rosey Lowry, Saxmundham, Suffolk

Activists miss the target

My wife was diagnosed with a severe case of CFS some months ago. As there is no medical cure as yet, we had to tackle the disease head on if she were going to have a life of some normality. We gleaned all we could from the book by Jacob Teitelbaum and are making good but slow process towards recovery.

The emotional and mental fatigue is as debilitating as the physical side, and we both wonder just how the “activists” are able to spend so much time and energy in their vitriolic and pathetic pursuits. Sufferers from ME/CFS require much patience, long term care and understanding; a cure is much needed from wherever it may emerge. Those researching the illnesses ae to be applauded.
Jeremy Rugge-Price, Orford, Suffolk


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