Letters: Don't lose hope over ME

ME is a devastating illness, but don't lose all hope
Click to follow
The Independent Online

I read with great sadness and sympathy the article about Lynn Gilderdale's illness (9 December).

Though her illness was not as severe, our daughter also suffered from ME. Like Lynn, she was an active and able 12-year-old, a very competent musician and athlete. She became racked with aches and pains, suffering headaches which blurred her vision for days, confining her to a darkened room. Movement was restricted and painful; climbing the stairs seemed equivalent to climbing a mountain. Her memory and concentration were severely limited. She could not focus on the television, and hadn't enough strength to hold a book.

This lasted for nearly seven years, and there were many false dawns. We, too, suffered the scepticism of some people, including members of the medical profession. On one occasion a doctor implied that she was acting. No one could have maintained such a performance. No one would want to endure such inactivity, discomfort and seclusion.

Fortunately, we were supported by several very competent doctors, and family and friends. Slowly her condition improved and we found a school that allowed her to attend lessons when she was able. She eventually achieved sufficient grades to go to university where, despite periodic relapses, she achieved her degree. Although she has never recovered all her stamina, she is now a successful teacher.

I hope that this letter gives hope to those who are afflicted with ME.

Name and address supplied

You printed incorrect information about ME. ("What is ME?", 9 December). ME is formally recognised by the World Health Organisation as a neurological illness in which the immune system appears to be disabled following a viral infection or some other precipitating event. As well as the one symptom you mentioned – exhaustion – people with ME often experience muscle pain, digestive and memory problems, headaches and poor concentration, to name but a few.

To print that "the best treatment [for ME] is graded exercise therapy" is wholly misleading. In our recent survey of 3,000 patients with the illness, 34 per cent of respondents told us that graded exercise therapy had actually made them worse and 21 per cent reported no change in symptoms.

Sir Peter Spencer

Chief Executive

Action for ME


Menezes: where's the accountability?

Who is accountable for what the police do? ("Menezes: Did the police lie?", 13 December) This question has recently been exercising the great and good because of the arrest of one of their own, Damian Green.

Myriad bodies supposedly hold the police to account, yet all the public are offered is a masterclass in ruthless buck-passing. When Jean Charles de Menezes was gunned down at point-blank range, the whole procedure glided smoothly into gear and gave us three and a half years' obfuscation.

Then came the process beyond parody of a prosecution for Health and Safety breaches, which never pretended to hold anyone to meaningful account. And we have just witnessed the coroner's attempt to neuter the inquest jury, by denying them a verdict of unlawful killing and imposing the tabloid trick of offering just "Yes" or "No" answers to complex and multi-faceted considerations.

Despite these restrictions, the jury succeeded in making it clear that they did not accept the police version of events, nor did they believe that the killing was lawful. This outcome will cause those who seek to reduce the capacity of inquests to play their part in the patchwork of institutional oversight of the police to redouble their efforts to impose "secret inquests" as outlined in the forthcoming Coroners' Bill. Debate around this Bill provides an opportunity to mobilise both those MPs concerned about the police handling of the Damian Green case and those of us seeking justice for Jean Charles de Menezes to campaign for effective police accountability and transparency.

Mary Pimm & Nik Wood

London E9

Neither your leading article on de Menezes (13 December) nor Mary Dejevsky's more temperate comment on the opposite page acknowledges the courage of the two police marksmen. They believed they were chasing a terrorist who could press a button at any moment to detonate a bomb, yet they pursued him to close quarters without regard for their own safety. In other circumstances they would be due for medals. One day that sort of courage may save lives.

Richard Davy


The whole problem with the armed police unit is the fact that it is made up of volunteers – the type of person who would volunteer to become an armed police officer is the last sort of person who should be allowed to be one. It should be a conscripted unit (subject to psychological assessment and suitable training). Then it would become what it should be – a burdensome duty, not a sought-after privilege to bear arms. Instead of licensed-to-kill fantasists we would have sober, armed police officers far more likely to disable a person than shoot them dead when it is unnecessary.

Helena Forsyth


I still remember the fear that day. Only the day before – 21 July 2005 – there had been four attempts to bomb London's transport system. Since then we have learnt of the scores of errors made by the police that led to this tragic mistake; but do they mean we should condemn them?

Recall that those marksmen were convinced the suspect they were to apprehend was a suicide bomber on the run. How many of those who condemn the police would themselves volunteer to try to arrest a suicide bomber (by bear hugging him)?

Conversely, just imagine the furore if the police had shouted, or paused in their action, and the suspect had detonated a bomb (as often happens in Iraq and Palestine), killing scores of other innocent people.

The police made serious mistakes that day and they will make mistakes in the future; this is an inevitable consequence of any human system.

Mark Bishop

London SE16

The reinstatement to front-line duty of the police officers responsible for the shooting, without any discernable reprimand or disciplinary action, means that the acting Commissioner of the Metropolitan Police believes either (i) that the coroner's jury came to the wrong conclusions as to their actions at the time of the shooting or (ii) that it is normal and acceptable for police officers to lie about their actions, even when on oath.

Dick Russell

Beenham, Berkshire

Let us not forget the role parts of the media played in letting the Metropolitan Police believe it could behave with absolute impunity. On 23 July 2005, the day after the killing, the front page of The Sun had the splash "One Down... Three to Go".

Mick Morris

Hamilton, Lanarkshire

Plane protesters deserve our respect

Although the Plane Stupid protest at Stansted (report, 8 December) was highly inconvenient for people who were trying to travel that morning, we should be careful not to equate the protesters with terrorists. Your comment that: "The group's lack of hierarchy has not made it easier to infiltrate" make them sound like murderous terrorists.

Far from it: they are simply taking non-violent direct action to make the point that we have to take urgent action on climate change. I think that we all know this in our hearts – but it seems that we are reluctant to take action if it involves any effort.

Normal expressions of public concern do not seem to be heeded by the Government – look no further than the sham "public consultation" over the third runway at Heathrow.

People who are prepared to risk imprisonment for the sake of the climate and the future of our planet are neither "inconveniences" nor quasi-terrorists – rather, they tell the inconvenient truth and therefore are to be respected as the prophets of the 21st century.

Michael Martin


Fears about tough new benefit rules

The National Autistic Society (NAS) is very concerned that toughening up conditions on benefits could mean people with autism facing hefty sanctions, rather than getting the specialist support they need to succeed in employment ("Tories pledge to help defeat Labour welfare rebellion", 11 December).

We welcome the focus on what people with disabilities can do – many people with autism want to work – but the Government must uphold its end of the "something for something" bargain and invest in specialist support if people with autism are to truly realise their potential. Too inflexible an approach may only increase the stress and anxiety people with autism are already under and could damage further the employment prospects of the UK's 300,000 working-age adults with this serious, lifelong and disabling condition.

Mark Lever

Chief Executive, The National Autistic Society

London EC1

Some 20-plus years ago, the Tory government set up Employment Training courses (ET for short) to train the workers without jobs to do the jobs without workers.

Many disabled people became permanent trainees on ET. A lot of unemployed and disabled people were prepared to work and train for £10 over benefit level in the hope that they might just obtain paid employment afterwards. They rarely did. Trainees seemed to fall at the last hurdle, when enterprises that were prepared to take them on as unpaid placements decided not to give them paid employment.

Peter J Brown


No need to get uptight about slang

As an English teacher, I used to tell my classes that whatever they said among themselves, they should not write "I goes" and "he goes" for "I said" and "he answered" (letters, 12 December). Few students found it difficult to understand the difference between their everyday language and formal usage.

Many adults, however, find it hard to accept what the young say, while they consider the slang in P G Wodehouse's dialogue humorous; indeed they positively enjoy the street language of Dickens' and Shakespeare's characters. Of course, they completely forget how their own speech used to annoy their grandparents.

Jen Parry

Didcot, Oxfordshire

Professional errors

Regarding GPs, Dr David Wheeler (letters, 13 December) asks what other profession has an error rate of just 0.8 per cent. If airline pilots and air-traffic controllers could not do much better than that, I, for one, would never fly again. In fact, the chances are I'd already be dead.

John Naylor

Ashford, Middlesex

Let me be English

The Scottish Government has recommended a new official ethnicity classification for the 2011 Census which includes an English tick-box. Anyone resident in Scotland will be allowed to identify themselves as ethnic English, alongside, to name but a few, Scottish, Welsh, Irish, Pakistani, Polish, Gypsy/Traveller, Black British and Arab.

Does this mean that our Scottish Prime Minister will follow suit and allow those living south of the border to identify themselves as English, if they so wish? Or will it be business as usual – one rule for the English and another (better one) for the Scots?

Anne Palmer

Stapleford Tawney, Essex

Awash with money

The credit crunch? What credit crunch? Over the past six weeks I've received three letters from my bank, the first offering me a loan of £17,500, the second of £20,000 and the third of £15,000. The strange thing is that I don't currently require a loan, but when I needed a fraction of the above amounts a few years ago the bank wasn't interested, even though I had sufficient funds to service the loan.

Terence Roy Smith

Biggleswade, Bedfordshire

Seasonal stamps

Mr Smith's sub-post-offices were making excuses (Letters, 13 December). My local sub-post-office had both first- and second-class religious stamps available from the beginning of December. The religious stamps had to be removed from large sheets, whereas those with pantomime characters were offered in books of six or 12 – a most disproportionate example of excessive packaging! Incidentally, can anyone explain why stamps which have to be peeled off a backing sheet still have perforated edges?

Michael Greer


Gentlemen's toilets

British Railways trains had the lavatory sign "Gentlemen lift the seat" (letters, 13 December). I was never sure if this was an instruction, an indication of social breeding, or a loyal toast.

Allan Friswell

Cowling, North Yorkshire